The only comment I would add is if ur on chemo i would recomment wearing gloves and u can clean off after w soap and water my appliance last about 8 to 9 days no flushing thanks
Thanks so much for sharing that tip!! Good point - I actually do keep gloves handy if I have a cut on my hand / finger any kind of broken skin, etc…And that’s great wear time without rinsing too! 👏🏻👍🏻
And I’m pinning your comment because, although I have not, many of us with ostomies do have medical history where chemo is a part of the journey to healing - so I think it’s important to share. Thanks again!
@@gloriadavis828 hi Gloria! Thanks for sharing with us! I actually don’t believe it’s necessary because 1), post op, my surgeon was the first to authorize me to take “naked showers” (no pouch, and the shower isn’t distilled water), and 2), 6 years of this practice and no issues. Of course if you use the same pitcher, I’d always make sure it’s clean (I do, but to me, that’s just a common assumption). Certainly if you feel that distilled water is a safer option for you and your doctor ok’s it, by all means do as you feel safe! No medical (or otherwise) advice is given on this channel by me - I just my experience 🙂.
I was told not to do this by the ostomy nurse saying it'll break down the protective barriers made into the bag....BS...my output would cake so much even using the lubrication. I went back to rinsing every time i empty my bag and like you i get longer wear time. Warm water helps break down the output making for easier emptying. My main problem is my stoma is in my natural waistline crease so i wasn't getting a good seal with using the rings and paste. Last week i experimented with using nothing and found my bag seals so much better. Due to have takedown surgery in May. Can't wait to be able to poop out my own butt again. Prayers all goes well. Blessings to you for validation on rinsing.
🎉 I’m so glad it’s working for you too, Cherie!! 🙌🏻 Thanks so much for sharing!! That’s AWESOME you will be able to move forward with the takedown too!! Absolutely in my prayers - please keep us updated too!! (I know you’re not the only person with a temporary stoma on this channel 🥰).
Hi everyone. I'm sorry I haven't updated prior to this. I've been dealing with my recovery from my takedown surgery. EVERYTHING WENT WELL WITH THE SURGERY and I'm two appointments post op already. Go back on the 1st of July to see the surgeon, but so far so good. Scars have healed and closed. Bowels are getting better and every day without a diaper is a good day. Diet is anything I want to eat except corn, nuts and popcorn. I'm ok with that. I've lost a bunch of weight, which is concerning for the PA's, but I'm ok with it. Went from 150 back in October to 119 this past Monday. I feel good and I'm eating more healthy these days. I've been blessed with a great surgical team and happy that I'm almost myself again. Thank you for your prayers and well wishes. 👍❤😘
YAY!! Thanks for the update Cherie!! Sounds like you’re well on your way to recovering!! When I lost a lot of weight before my colectomy, a friend turned my attention to protein shakes for rebuilding muscle. I’m sure they’ll discuss that at your next visit (if not, maybe they have a nutritionist available?). Please keep us posted!! Prayers continue 💜!!
It is so thoughtful that people share helpful information. You certainly don’t get this information in the hospital. I had an ostomy for 3 months but now I will need a permanent one. Every bit of information you get from an ostomate is far better than from someone who has never worn one! Thank you sincerely for the help you and others give us!
You’re so welcome, Barbara!! I know my hospital is blessed to have a group with volunteers who will visit new ostomates - if they would like. I was visited by another Crohn’s and colitis patient with an ostomy, and it was very encouraging. I was also blessed to have an ostomy nurse who was actually running the UOAA ustomy support group. She still is. I’m not in a position to volunteer in person, so this was the next best thing that I felt I could do and I’m truly grateful that it is helping folks 🥰. Since my ostomy is stable, and I have no plans to not have it, you could say I’m choosing to be permanent, at least for the foreseeable future. I have a couple of ideas for new videos, but honestly - just about everything that I have already done here is the best of what I have to offer so far since my ostomy is stable. But if you don’t see something in my videos, and you do have questions, don’t hesitate to ask. There is something special about being a peer to peer advocate in other medical disciplines, and I see it here with us of a special importance that we can not only encourage each other, but literally see how we manage with an ostomy - which is where the videos have been helpful to me too. 🙂
After 6yrs and just as many surgeries I still find help. Especially this one. All I can say is keep reading, keep searching and asking questions. No you don't learn much from hospital. Good luck, Mary
You’re very welcome, Marc! Thanks for the sweet comment! It can be overwhelming to navigate a new way of doing life - especially this way - even if it’s temporary (or not) but there’s really hundreds of thousands of us out there (725,000+) and we are building a great community of likeminded people here too so feel free to ask any questions as you’re comfortable 🙂. Also check out the United Ostomy Association. UOAA. I’m not sure where you are but you can find them online at www.ostomy.org.
This is really great. This is now my 9th month when I became an ostomate and I thought that using water was something that would help me feel clean and fresh. I tried it without getting it from anybody, and it worked. I can now make 7 days with one bag and with all these insights I may come to 15 days soon. Thank you so much for sharing.👌
I’ve had a pouch less than a week and was looking for a better way to empty it. Thank you for demonstrating how you do this! I’m saving on toilet paper and getting it done so much quicker!
I'm so glad you found the channel & it's helped, Roger!! It took me several weeks of irritating my arthritic pain & gobs of wiping with TP to figure it out! Good for you!!
I’ve switched to the proposal approach, I installed a hand bidet on my toilet, then I kneel on one knee in front of the toilet then if my lbs (little bag of stuff) slips it is no issue. If you’re using the reverse seat position then a slip could be a mess.
Haha yes, Gregory!! I have already made a mess but it wasn’t from falling off, it was from emptying while still mostly asleep and forgetting to close the end of the pouch before “swishing” it…then I woke up 🤦🏻♀️🤪!! I really can’t sit backwards safely on the round toilets anyway but I’m still good on the oval style. It makes all the difference! Aside from that, I’d love another bidet. My hubby has one he uses in our other bathroom but it doesn’t have a handheld sprayer. He likes that one but I’d love the handheld so it’s on my shopping list 😄. Ps - LOVE your stoma/pouch name!! 😄
This was a TOTAL game changer for me! I’m a pretty new ostomate (surgery was in July) and this has made all the difference for me feeling cleaner. Yes, it extends wear time, but for me, the feeling of freshness is totally worth it. Thank you for this video because I would never have thought about this on my own. ❤
My nurses and surgeon didn't help much at all. They didn't help me get supplies set up for when I went home. No education about it was given. It's almost just one of those things that can't really be explained or taught unless you've been through it I guess.
Oh wow, Pamela! It’s so saddening to hear stories like this when so many people have Ostomies! I’m so grateful for my WOCN in the hospital and that TH-cam had creators here before me that I learned a lot from but I was still dumbfounded how to even close an ostomy pouch 🤦🏻♀️🤷🏻♀️ because watching wasn’t enough for me. I needed that one on one - we all deserve it!! There’s probably just not enough ostomy nurses to go around and this is why I & many others try to help here 💜.
Like you I have to feel clean, I even have to remove the bag to clean the output off my stoma. I’m a new colostomate as of July 2024. I had home health for two months and they told me nothing about taking care of my stomach so I’m figuring thing out for myself. Rinsing my bag out makes me feel much cleaner.
Thanks for sharing! I do wish there were more nurses with Ostomy education and experience. Until then, those of us that are out here on YT will continue to share what we’ve learned 🥰. My hope for this channel is all about community and education as we learn from each other!
Thank you so much for letting us see how you do it =) I was diagnosed with Stage 3b Rectal cancer, age 46. I am currently into oral chemo 5 pills/2x day. I also have a huge fibroids. So I will be getting my surgery, uterus and rectum in one operation, maybe this coming December 2024 or by next year. I was thingking of rinsing/re-use as well until I found your video and it could be done! =) Thank you so much for sharing !!!!! Sending love and hugs to you! =)
Thank you so much for this, you’re awesome!! That brava lubricating deodorant is a necessity! I’ve been using it to rinse my bag every day since I’ve had my ileostomy. The doctors and nurses won’t tell you this, bc they don’t have one! I much rather get my ideas and advice online, from ppl who have the same struggles as me. Thank you again! 💕
Awwe Thanks so much!! You’re very welcome!! Yes!! I did a LOT of TH-cam research and found a lot of help from other ostomates here so I’m just trying to do the same 💜
FyI ladies and gents** 5 or 6 drops of spearmint essential oil with some coconut oil for lubrication in your deodorizing solution helps the smell immensely.
Thank you, I was clueless as to how to rinse it out and you gave me a complete clarity now. I am paralyzed so I can’t go over the toilet but at least I can put it into a container. Thank you again, what a relief.
Karah. Awesome video. I've had my Ostomy for three years. Rinsing now for two years. I bought what's called a portable bedet. It's just a little hose like we all have on our kitchen sinks but it hooks to the bottom of the toilet tank. Nice little squeeze handle. Makes the process much easier. Then I kneels and empty. Cold water isn't a problem at all. Obviously I don't feel it as the Ostomy has no nerves. Almost always get 14 days out of my bag. And I use a clear front bag so I'm know I'm getting everything out of the bag. Rarely any skin irritation. I realize we're all different and nothing works for everyone but... rinsing has been a game changer. I fly a lot and when so doing, I carry a collapsible bottle. I use the handicap stall when possible. Thanks so much.
Thank you and thanks so much for sharing, Bob!! So glad rinsing is working for you as well! My husband loves his bidet we added to the main bath. I’d love one that has the hose (his showers water from the unit attachment that sits under the seat). I love the collapsing water bottle idea!! Makes boarding with it possible then? I’ve not flown as an ostomate. Although I only use cooler water, if I absolutely have to, whereas warm water is not available, one benefit of using cold water that I’ve noticed is if I have a gap between my seal and my skin, the skin will feel it, but that may not be for everyone (maybe if the nerves have not healed yet…not the stoma itself, but rather the skin close to it). Then I know I need to change my full appliance ASAP. But I love that you’re not getting any downsides to rinsing and you are getting really good wear time without noticeable irritation. Way to go keeping that peristomal skin healthy! 🎉
I have had my colostomy since September 2021, the hospital nurse who instructed me on my appliance never mentioned rinsing my bag...I found out through videos like this where it is mentioned. I like that you show how you do it, not just describe how to...like how you sit on the stool backwards, use warm water, and slosh the bag to be more effective. I don't regularly use lubricant, but I find that just using water really helps with getting my bag to empty much more easily. While I am hopeful to have a reconstruction, I know that I have an entire community on TH-cam for resources and almost any question I might have. Thank you for sharing your journey.
I’m so glad this has been helpful to you Charmin! I know I learn in multiple ways & visual tends to stick with me more than anything. I am hoping with you for that reconstruction or reversal - whatever is proposed and yes, there is a wonderful online AND in person community (when we can all meet in person again) too! My closest United Ostomy Associations of America support group is a little over an hour away but they do meet on Zoom as well. I’m not sure where you’re located but if you’re in the states, that is a great resource too! (Ostomy.org). I’ve heard of other countries having similar organizations or that might be for IBD(?) but I’m not familiar with them. And then speaking of international, there is a “Ladies Ileostomy Group” on Facebook (private) that is wonderful! I hope you’ll keep us posted and yes - definitely feel free to post any questions here too 🙂.
I know right? 🙂 I have heard some say that they’ve had a nurse suggest it and then others that say a nurse had said it will break down your wafer too quickly - pretty much all over the map so that’s why I put a disclaimer video up because it may not work for everybody but for me, it was worth a try and it still works almost six years later. I was never told either way. Thanks for sharing, Rosemary! I hope this channel is helpful for you!!
Kara Thanks for sharing this. I also have been rinsing for a long time but never saw anywhere else that taught this. I agree, it just is fresher and clean. Thanks much for sharing
Some bags have narrower openings than others: I use a long narrow funnel that I purchased at an auto parts store to pour the warm water into my bag and sometimes use the long stem to target the top area of the bag if the stuff is sticky there. It was YOUR video that got me started with rinsing, and it helps keep me 'on-top' of things in many different ways. Thanks.
You’re so welcome!! I hope rinsing works for you as well as it has for me! It definitely takes a few weeks to get into a routine of changing the appliance, recognizing the sensations of a leak starting etc…and hopefully rinsing will be at least one part of your emptying routine that makes things easier 🥰.
Life changing ostemy video! First off, I have never tried facing backwards on the toilet - and wow - doesn't make anywhere near the mess in the toilet bowl. And rinsing is genuis - it will take a couple of times to get all of the stuff from the top of the bag out but way better! I only get about 3 days our of a bag, especially if I am sweating. The ring is usually fine, but the adhesive on the flange itself breaks down and comes off. Thank you so much, new subscriber here!!
Hey Tony - thanks so much for sharing here and subscribing!! And I’m so glad this video has been helpful!! It can take a few times for me too - depending on what is in there…that’s where some gentle “swishing” helps me. If you have one, often, an Ileostomy is generally watery so many folks may not need to rinse but my goal has been to increase my water retention to avoid dehydration so adding more veggies (that’s been slow for me because I don’t want a blockage) and whole grains is helping there. But for anyone else reading this, it is very possible to increase the bulk of the stool, depending on diet. And my ring / wafer 😅can last 2+ weeks (I know - crazy!) but the papery outside edge adhesive is wearing off & peeling usually by a week-ish so that’s where the Hy-Tape (or Pink tape) or Brava type strips work to keep the wafer on. Love that stuff!! It usually buys me more time between full appliance changes too. 🙂
I was so happy to see your video posting. My husband is retiring so we will be on medicare and it costs more. I recently started using 2piece colostomy bag after 6yrs. I always thought the hard plastic ring would hurt. Since I began using this system i feel it helps to support my stoma prolapse . Anyway it looks as if 2piece pouch is more expensive and I now am encouraged to try rinsing the bag to help stretch my budget. Thank you so much. Mary
You are so welcome, Mary! Thanks for sharing here! Whether you have straight Medicare or an advantage plan or a supplement, definitely find out what the allowance is per month - if you haven’t already. My supplier has yet to figure out that they don’t need to call me every month to remind me to order but they still do. I’ve saved a lot of money on my coinsurance, not sacrificing my routine or skin, and I hope you all can as well! 🥰
Thank you for sharing this video,I’ve been doing this for 3 yrs now since I’ve had my illiostomy bag as well but since I didn’t see anyone else doing it,I taught I was doing something wrong 😑 but since my skin is very sensitive that’s why I started doing it.You have a such a confidence to share this personal time with us,I’m going to continue to do this to see if it’ll continue to work 🙏🏽God bless 🙏🏽
That is AWESOME Lucia!! I know I didn’t see anybody else doing it either until after I started doing it and then I thought, “well let me look on TH-cam” 🤣 That was before I had my own channels and decided I would share what I was doing. Thanks so much for your kind words, support, and sharing your experience too! God bless you as well!! 🤗🙏🏻
I always rinse my bag. It just feels cleaner. It’s nice to know that others do it as well. I was told not to rinse it because it can break down the adhesive but I never experienced that. Thanks you
I just came across you site a few minutes ago and I have to say I've never came across anyone speaking about this and honestly I was like yes ok someone else does this. Glad you spoke in this
Thanks for stopping by and sharing that, Trudy!! I had no idea the video would be so helpful or even confirmation to so many people!! I just know it’s worked for me (and now I know I’m not alone too!) 🙂😎🥰
You’re very welcome!! I’ve heard that from others too (told not to rinse) but I was never told that and I had a leader of the WOCN’s as my personal Ostomy nurse when I was in the hospital. 🤷🏻♀️ I just know I tried it out of total frustration with the whole “emptying thing” several times a day and not feeling clean…and it’s worked to my betterment so I’m absolutely thrilled it’s worked for others too!
My ostomy nurse told me to try it cuz I told her when I leave the bathroom I still feel dirty. So I've been rinsing for quite some time now and I definitely feel cleaner when I walk out of the bathroom. Thank you for your video. It was great.
@@ElfLooMom you’re so welcome! I didn’t start rinsing for several weeks - after my poor hands just couldn’t “move the stool” (when it wasn’t pure water) down the “neck” of the pouch. The inflammation esp in my hands was terrible after everything & then the total colectomy…so it was out of necessity & completely out of the blue to try it 😌. I remembered my surgeon telling me not to worry about the water hitting my stoma and taking showers and I thought, “why couldn’t rinse?” I hope it helps you too, Helen!
Thank you so much for your videos! It is a huge help. My mom is just 4 weeks in post OP and we are in desperate need of help, tips and tricks, so thank God I found you! 😊❤
Thank you for stopping by! I’m so glad you’re getting help here!! Have you been told about support groups for Ostomates through the United Ostomy Association (UOAA)? Family members attend as well and I’ve gotten some great support there, especially early on. Feel free to ask any questions too - if I don’t know the answer, someone else here may or we can point you in the right direction 🥰.
Thank you for sharing your great ideas for making life that little bit better for us with pouches. I do rinse myself but have read somewhere that rinsing can interfere with the air filter and stop it working so well at releasing gases. So it is very reassuring to see that others find rinsing a good idea. I rinse with cold water using a Bidet Sprayer that comes in kit form and very easy to fit, This comes in handy for spraying down the toilet bowl too thus stopping the need to line the bowl with toilet paper prior to emptying. The kit only cost me £24 and has made life a lot easier. Once again thank you for taking the time to share your very helpful ideas and practices.
Thank YOU Brendan! I just posted a short about a bidet my husband wanted for the bathroom he normally uses (guest) and I told him “my” bath (off the master bedroom) will have a sprayer! The only challenge for me is I love rinsing my pouch with warm water and you know, that ain’t no warm water coming off the pipe 🤣! It would still help for when I don’t need to “swish” the whole pouch as I rinse. Which leads me to your great comment - many people do have a filter in their pouch & I’ve seen that complaint about them too. I prefer none. I had nothing but staining on my clothes and bag clogs (even before I started rinsing) so I try the little stickers? Meh. I switched to a no-filter and never went back 😄. I do have a mini pouch for some occasions that only comes with a filter but it’s closed so I just toss it anyway; no rinse. I think a bidet is wonderful as long as it doesn’t irritate an existing “rear” that may still have leakage (No proctectomy here yet…). His bidet has a “front and back” sprayer in the toilet but said the front is much better (pressure wise) even on a low setting. I’m glad the manufacturer thought of both ends so to speak and it came with a lot of great reviews. Just maybe not for someone struggling with active UC or Crohn’s (or recent surgery). Is too strong for sensitive areas he said. He’s going in for open heart surgery soon so he was concerned stretching out his arms (after they crack open his chest) would inhibit his abilities to take care of the rear. I’m glad we could get him an alternative option 😎🥰. Ima wait for the sprayer version myself. I do love the handheld idea right there at the commode though so that version is on my wish list! Can you share (which bidet you purchased) with us, if it’s available online? Thanks!!
@@TheKarahLife I also have a bidet toilet seat that is fantastic, Warm seat, warm water and a whole lot of settings: temperature, position and pressure. I have had this seat a long time and well before I had the blockage that lead to emergency surgery and the removal of the whole of my large intestine. I had diverticulosis. I still have my rectum and may opt for reversal but am happy at the moment to wait. This is the hand held spray I bought and I am very happy with it, I have fitted it to 3 of our toilets and find it does a great job of rinsing, I don't feel the cold water because my stoma is numb. www.amazon.co.uk/gp/product/B08D9MP12X/ref=ppx_yo_dt_b_asin_title_o04_s00?ie=UTF8&th=1 Best wishes, Brendan
Hi, thanks for sharing your video. I was very lucky to have a talented son in law when I got my ostomy several years ago. He installed a sink just at the right height for me to be able to empty y bag easily & rinse it out directly from the tap or faucet as you call it. It is plumbed into the waste & everyone knows that is my sink. When I need to empty when I am out, I just use a water bottle. Best wishes from Kit in York England ❤️
That’s AWESOME Kit!! What a sweet son in law!! The house we were in when I got my ostomy was just the right height too. It was an older house and a tiny bathroom but hey - it worked! Thanks for sharing 💜.
Thank🥰. You have make me so happy to know how to help my husband. Risintly he have done the ostomy. This video of yours make us to be more strong for another 26 years.
@karensimon1580 Thats GREAT, Karen! I’m so glad this works for you too!! It just seemed like a natural solution to me & I didn’t know anyone else was either 🤷🏻♀️ 🙂 Especially if you’re getting a thicker (than water) consistency and that’s really the sweet spot for absorption (pudding/applesauce) & hydration.
Thank you SOOO MUCH for sharing this🙏🏼 I am 1 month and 4 days in with my ostomy and the lubricant only helps so much! I’m developing an obsession problem with my bag almost always being dirty but I keep getting leaks needing to push my stool down it constantly pancakes and gets stuck so im changing my bag every 2 days!
Thank you so much! I just got an Ostomy and wanted to know how to clean the bag, I really hate going to bed with residual feces in my bag after emptying it.
Were you not assigned an ostomy nurse? My nurse is the one who taught me how to clean, change, directed me to a nutritionist because you can't just eat like before, and how to even pick up objects without hurting myself. Ask about that and see if they help you out. The nutritionist is very important, I suffered with an impaction a month after my surgery because I ate too much roughage that I now couldn't digest due to the amount of gut they removed. And stay hydrated it helps with digestion.
I think your reply was for Jen but I totally agree with nutritionist! My GI doc set me up post op with theirs. My nurse was also amazing (runs out UOAA support group too) so when they are available - and I’ve heard there’s shortages all over the world - I say, definitely utilize them!
Thank you for sharing this! I do exactly the same rinsing as you do and also lubricate with the same product. I've wondered if I was alone doing this but now I know I'm not. Think this was a very needed information to many people with ostomy bags! Thank you so much!
Karah, I just want to start by thanking you for making this video. I think you are very brave and thank you again for sharing your wisdom with the rest of us. I had to get a colostomy a few months ago. Initially, I was totally against the idea but, after watching a few videos like yours, I have found it's not the end of the world. Initially, the local ostomy nurse had me on a two piece Hollister appliance. What a disaster that was! It was fine for 24 hours but, after that, it became a ticking time bomb until it leaked. We switched me over to a one piece and things have been pretty good ever since. For the first 8-9 weeks, output was loose but has gotten firm ever since. I would empty a few times a day but didn't really feel clean until I started rinsing the bag. It makes you feel so much cleaner and lighter! Like just having put on a new bag. My only problem is, I experience pancaking and I think the rinsing water may breakdown the seal of my ring prematurely. The longest I have gone between changes is 6 days. It blew my mind that you were able to go two weeks or so without changing. Anyway, just wanted to know how much I appreciate your videos. Cheers!
Awwwe - THANKS so much for the kind words, David! For me, so much of this life is about helping each other seek to thrive even through difficult circumstances so seeing what I've been through help anyone else in any way is worth the risk =) I was originally given a one piece and told if I just gave it some time - 3 months-ish - I could look at new products bc that's when my stoma would likely be settled enough that I didn't have to keep cutting a wafer etc...especially once I found the moldable line!! Game changer!! I still get the pancaking too - esp when I'm trying new, thicker or fiberous foods or if I am on medication that dries me out. like Mucinex - uggh. But, I remember I need to keep drinking more to compensate too. A little air or even water left in the pouch is a free way to try and combat that. I don't do the air option at night bc I'm a bit of a risktaker...I do often sleep on my stomach. as long as I'm not filling up or am really good at not eating after dinner, I'm not up much to empty either. But hey - 6 days is AWESOME, tho!! I was only getting a couple days in the beginning which led to redness so I was very happy to start trying a new appliance routine. Blessed that I landed on what I did right away when I did. If 6 days means no leaks or irritation - that's really a good sign. IMHO anyway. Keep up the great job!! Cheers to you as well!!
I too rinse out with warm water. It is easier and much cleaner than what the wound nurses taught me. I have gotten 18 days out of a change and almost never get below 14 days. Thanks for making this video.
That’s so sweet of you to share! Thank you! If what I go through can help someone else, the experience is not only not wasted, but to me, can take on a positive aspect 🥰.
Thank you so much for this video. I just got a stoma three days ago and I'm lying here in my hospital bed learning ostomy care. I found that pouring water in the bag made it so much easier to empty it but I wasn't sure if that was allowed. I asked a couple of my nurses but they said they didn't think that was a good idea. Now I feel so much better. The part about keeping the bag on for up to 15 days as long as the deal is still intact put a huge smile on my face. I was not looking forward to changing this thing every few days. I am a 69 year old with limited feelings in my fingers so changing the bag is going to be a nightmare.
You are so welcome, Jack!! First of all - good for you for doing the research! I found that my journey with this ostomy life has been so much more manageable by getting all the knowledge I can! You’re just beginning and the good part (yep…good) is not only is an ostomy a life-saver - but we learn mainly by “doing”, so, in the beginning, you will likely be getting a lot of practice changing when you either 1) schedule a day or several days to just get the practice OR when a leak starts (always carry extra supply bag when leaving the house). And lots of practice - that’s OK because it’s the “doing” thing, right? 🙂 I’m in my 7th year post total colectomy and tho I do still get that kind of time, it took several months before that 💡 moment happened and I forgot it was actually on. When a leak begins, you’ll start to feel that itch, tickle or “wet” feeling on your skin. In the beginning, incision nerves can be numb so it’ll take a bit, but when you do notice, that’s the time to change. “If it itch, make the switch!” The more you recognize - the easier it will become getting it early. Rinsing - there really are soooooo many opinions are out there. Of course, I can’t comment from a medical standpoint & medical staff are certainly a blessing but I personally know (as many here), that after almost seven years, I’ve never had any negative reactions on my stoma or peristomal skin. If I can get tap water on my stoma by showering (OK’d very early by my surgeon) why can’t I rinse it? 🤷🏻♀️So, that’s been what’s worked for me 🙂. Do you have anyone to help you maybe find an alternative way to change your appliance? There are some “helps” out there like Stoma Genie and a stand/appliance they have that holds the Stoma Genie tube in place to catch output as you prep. All the best of healing to you and feel free to ask questions here - we have a very wonderful TH-cam community 🙏🏻🤗!
I have always rinsed my bag; 36 years. I do it when I go potty to pee or just to clean out when it gets heavy or noticeable. Plain truth is that I can't stand any waste in the bag. I also use a plastic measuring cup tha I have had for over 25 years. LOL When I travel, I just use a plastic water bottle. :) When I shower I wash my bag with antibacterial soap and gently clean my stoma area, with or without my wafer. Thank you for posting, I thought I was the only one.
That’s awesome!! Same, same, same!! 😃 Thanks for sharing!! I love hearing how others find the benefits too & how rinsing is more common than I realized 🙌🏻👍🏻🙂.
Sure! I think as long as the skin is clean of any residual soap, then that sets us up for a solid seal! I love using Aveeno oatmeal bar when I do the “nak*d” shower But I’ve heard of others, using various soaps that wash clean, too. Bottom line is if it works, it ain’t broken, there’s no need to fix it!! Good stuff! Thanks!!
@@TheKarahLife Actually I use Ivory Soap but I have used whatever liquid soap is available; Dawn Antibacterial being the best for cleaning the bag and the around the wafer. But if people have very sensitive skin use caution. But truly I have never had a reaction to any soap and I'm pretty sensitive to additives. I do change every 3 days and blown dry the wafer and bag after every shower. The moisture can grow bacteria especially if waste somehow spills out. Plus, if it does, I use baby wipes if not at home. You can tell I've been doing this for a long time, way before wafer were Band-Aid thin. LOL Only time I remember having an issue is when I super sweated working in the yard or when running and not showering quickly after my workouts. But you're right, clean, clean, is the answer and change often.
I have had my ostomy for almost 2 months. I was thinking about doing what you're doing on my own, but I really needed to get better at changing my bag before I attempted it. One piece bag with a gasket. I'm pretty good at it now and I think I will give this a try tomorrow.
Good for you!! It does become more familiar the more we change the appliance! I started with the one piece, drainable as well (at the hospital) and at about 90 days-ish, my stoma size settled and I started looking at the “no cut” moldable wafer set up I’m still using now (my surgery was 11/8/17). I’ll add too on rinsing, that I started “swishing” around my stoma to clear the “pancaking” but even just rinsing the bottom of the pouch at least removes what’s just at the bottom (until I get home or access to warm water). When I only have access to cold water, I have done only that - no “swish” - just to “relieve” my pouch of that bottom weight. I hope you’ll share again how it goes for you! 🙂
Great video. Helpful comments and great replies. This is sooo helpful! I don’t have a Stoma. I had a major stroke and I am in a wheelchair I do have bowel problems. It’s very difficult. There’s very little help available here so I have been using a wonderful physio on TH-cam and learning about other related solutions on TH-cam. Thanks soo much for posting this. At Least I have some awareness now! Hopefully it may not be required! Thank you again ❤
Thank you so much for stopping by & for the kind comments! I’m so very sorry Sheilagh - I don’t know what it means to have had a stroke but - and by no means the same reasons - I did spend several months partially paralyzed time in a wheelchair and full leg brace post op due to a pre-op anesthesia block mishap (the doc numbed my leg as well as my stomach) so I can offer some suggestions how to navigate this process from a laying down and a seated position (as well as standing) IF this will be part of your journey - whether for you and/or your caregivers. I pray that you will recover and not need to go down this road but feel free to reach out at any point either way! ♥️🤗🙏🏻
@@TheKarahLife So sorry to hear about your story, but please know you are an inspiration. I have had diarrhea for more than a year, it may be my meds or it may be Chrons/IBS. I’m hoping neither, it happens mostly when I stand to use my fame to get to the bathroom. Otherwise I’m in bed or in my Wheelchair. Good luck on your journey, you have taken the foreboding mystery away. That’s a very good thing! Thank you ☺️
You’re very welcome!! I am amazed to see how many are sharing that they’ve been doing this a whole lot longer than me with a lot of success too so I pray it works for you as well!!
Thanks for posting. I'm 5 weeks post opp and installed a bidet sprayer (bum gun) to my toilet a week ago. The water isn't warm but I'm in Queensland Australia.
Oh my goodness I LOVE that!! “Bum gun”!!!! 🤣 Thanks for sharing!! My friend got me a shirt that says “Frog Whisperer” LOL!! We have the cutest baby frogs here right now and I’m forever asking them to not poop on my storm door (they’re cute but hard of hearing I think 🤣🤷🏻♀️🐸).
I use a bidet sprayer to rinse mine. It’s not to get multi days of wear. I just do it so the bag is clean. The area where the bag is attached is alway itching so I change my bag every other day
Thanks for sharing, Linda! I'd love to get that type of bidet. My husband and I added one that sprays from the seat but that's not helpful for the pouch (he love it LOL!). I'm just curious, when you get the itching, is it also leaking? or is it related to maybe the adhesive?
I had to do this just because it’s a mess and I don’t like mess, smells anything. I actually change pouches every day or other day. But anyways I’m happy to see You can wash them out. Thxx
Oh please tell! A portable? Can you share the make/model you use? I love the idea of our bidet but it is one that only has the sprayer built in, under the seat area. I’d love to have one in our camper bathroom too (I lug jugs of water bc I don’t trust campground water that much to drink or rinse with it…) 🫣
Thank you so... so much I've bin doing this rinsing for four years Can't stand the pouch half full, Love lisernning to you.... Regards Simon.. England Cambridge,
I have a retracted stoma so the smallest amount of waste left behind causes huge amounts of skin irritation and damage. I compare it to the feeling of pouring ketchup on a hundred paper cuts. Each time it outputs it feels like lava flowing over a stab wound in my stomach. If I do not completely rinse out the bag and stoma area I will be miserable for hours. I have lost over 60 lbs (30 of which were not needed to be lost and am now way way underweight) because it's easier to feel hunger than the pain of the output. I have since purchased hand held bidet kits for my bathrooms. They have been a game changer in emptying and cleaning my stoma. I can adjust the flow and direct it into the bag to make the waste flow straight into the toilet. It also keeps my hands and legs from getting waste all over them. When I am out in public I carry a bottle that I purchased on Amazon that is specifically made to rinse ostomy bags. It is only $10. I know how physically difficult this journey is. Even tougher is the mental side. I'm glad there are folks like you who are brave enough and willing to share your stories and ideas that help the rest of us out.
Oh my goodness that has got to be painful! I’m so very sorry to hear you have had to struggle with a hiding stoma 😢. Ripley, occasionally (if I fast) gets back to her original size - just enough above the skin - but the moldable wafer still moves with her otherwise I’m sure I’d be in agony. I have experienced leaks - especially early on - but my skin healed thankfully. Just one leak does a number on the skin and by the time we feel it, it’s already doing so. Does skin prep help at all? “Crusting”? I’m glad you have found a rinse bottle that works - I think I’ve seen it online; it has a long straw-like tube? I may post that under the community tab for others but if you can share a link that would be great for others too! Have you talked to a stoma nurse or the surgeon? Is it an option to revise your stoma? Do you use a convex wafer? My heart goes out to you! These stoma things are made to save our lives and give us a better quality too, not give us a new issue to contend with. Thanks for your kind comments and sharing part of your story too. Likeminded folks on this unpredictable journey help give me strength too 💜🙏🏻!
I just got my temporary appliance three weeks I started doing this when I could finally found a pouch that stays on I feel so much better helps if it becomes logged, my bag seems to last longer. Thanks 😊
Oh I’m so glad you found a pouch system that works for you, Peaceful lady!! That’s the key and rinsing just does the same for me! I wish more ostomates knew. Hopefully we’ll get the word out here and more will at least try 🙂. It may not be for everyone and that’s OK - I’m just sharing what’s done wonders for me too 💜.
Just found your video about changing the pouch. Very good info. Love your sense of humor. I have an ileostomy. So my output is very liquidy. Sometimes i get the skin around the stoma irritated. Love the boyshorts. I also wear a belt. It feels alot mor secure. Thanks again
LOL! Thanks! I have to laugh cuz we go through far too much right? 😁 I do live in those shorts I have to say (not outside the house 🤣) Yes I have seen where some people have so many surgeries that they go between Ileostomies and colostomies and J pouches etc… i’ve only known an iliostomy and had significant high water output for my first few years. Only recently have I been able to really figure out how to try and firm things up without getting a blockage. There’s definitely some more video ideas in there 😎. Do you use the stoma prep applications? I love the Cavilon 3M. Even though I can get those mini watery leaks, my skin still is protected.
Karah, thanks for putting out this video! I am new to this whole world, thanks to a bad case of diverticulitis that resulted in a perforated colon. I an 6 weeks post surgery, and have always hated emptying my bag as it seems I can never really get it empty. I tried your method and was very pleasantly surprised at how well it worked, but I also noticed a pleasant side effect, and that was a significant decrease in odor when emptying it. Another little trick that I was given was to drop a couple of tic tac's into the bag after emptying and when putting in deodorizer. So far between rinsing in the morning and evening, and using tic tac's, the odor has been greatly reduced!
You're very welcome!! That's great you've found some wonderful results from such a simple thing, Norman!! I've not used them yet, but I have heard about the tic tac's too!! THANKS so much for sharing!! Your experience gives others ideas too! =)
I honestly don't know. I had my surgery on May 18th, and my case was very severe. It was crazy for me as I was working overtime the Saturday before feeling great, started getting sick Sunday evening, and by Tuesday midnight I was in ICU and they did surgery on Thur. The surgeon said he had never seen a case of infection as bad as mine in his 20 years of doing surgery. They ended up taking 6 inches out of my sigmoid colon and the surgeon said that they would probably take more when they go back in to put me together because there was too much inflammation at the time of the original surgery. My surgeon said he would evaluate my colon health with a colonoscopy after 6 months and make a determination as to when to put me back together. I thank God that I have been able to to bounce back and get back on my feet as quickly as I did. I went back to work the 1st of July and even with the Kansas heat, I have been going strong ever since. I am a comercial HVAC service tech and my job is very physically demanding. I am out doors and climbing, lifting and caring 50+ pounds every day and I am in my mid 50's. I have found using a stealth belt was a great way to conceal my bag and keep it from getting caught up when working. At work I carry a 2 bags with 4 - 12 oz Gatorade bottles full of water and that way I can take care any thing at work, even if it is in a porta john. Norm@@crystalebner954
Thanks for the video! I’m new to the bag and have been rinsing even though my ostomy nurse said not to because it can cause moisture and might be causing my leaks. But I needed to feel cleaner. This is helpful how to do it right. Some days it’s so hard to have this. My first week home I was a wreck. This is second week and I’m trying to adjust. Output can be so often some days too and it’s gross. Also I wear gloves each time and am trying to not have the bag so dirty after dumping.
Hey there! I get it!! I totally feel like I need to get everything I can out of the pouch / bag each time I use the restroom even though in the beginning for me, it just filled right back up (with water before my output started thickening). I have heard a few others saying that they were told the same thing or they found that to be true themselves that with their particular situation, rinsing has the opposite effect (they change more often) but comparatively speaking, it really is just a small few that I’ve heard of. Now, that can depend on many factors - like maybe how well the wafer is made, cold or warm water, or maybe how good of a seal we get against the skin when we first change, which takes a little while to get down (and it’s totally normal because that’s just a learning curve in the beginning) or even just our skin response to a particular brand of appliance. I can’t say for sure, but we all do what we need to do in order to effectively deal with this new way of doing things and that does include making sure our peristomal skin stays healthy. I don’t have a medical degree to comment from a professional standpoint. I just know what works for me 🥰. I actually used gloves in the very beginning myself, because it just didn’t seem like a natural thing to have output, even splash on my fingers 🥴 but I don’t now, because I am in the bathroom anyway, and always have plenty of soap on hand (like a few bottles on my sink!) & use a dedicated wash rag or baby wipe for my hands if it happens and of course wash as soon as I’m done. A bleach based cleaner is always near my reach for toilet cleaning too…It’s just a preference and honestly if that helps you feel better - again, do what you need to do 🙂. I still keep a couple of gloves with my supplies in the bathroom anyway - mainly now, just in case I have any broken skin - I will use it. Hang in there!! With each appliance change, and each day with your ostomy you will continue to learn what works & what doesn’t. I’m not sure where you are in the world, but I’ve also had a lot of support from online communities from Facebook to other TH-camrs, as well as the ostomy nurses and staff at my suppliers & manufactures. I am also very blessed to have a United Ostomy Association (UOAA) support group within a little over an hours drive from me. Support is so important with such a HUGE life change and that’s why I’m out here doing this myself, so please feel free to reach out with any questions & comments!! 🤗
I do the eaact same thing with my osotomy pouch from time-to-time, or better still, if have left-over tissues, I soak them in water and pardon the pun, "dump" them into the pouch to absorb the output. I definitely make sure hands are clean also the outlet.
@chinlesswonderkid YES!! Thanks for sharing! I have been putting some toilet tissue in my pouch (well, about 3-4 pieces and folded up) when I need to absorb especially runny output. I love the “Diamonds” sachets but they can be an expensive expense just to flush! TP is pretty affordable in comparison 😁 Thankfully, it doesn’t happen often anymore but it does work and the next time I rinse, it flows out with the rest of the output! 🤯 🙂
Thank you for sharing , I’ve always rinsed my bag it helps so it’s not so heavy I can’t stand when it weights down on my stomach I like it when it feels very light I’ve done it since day one even when they say not to , one I just don’t want to see all the poo sitting on the bag that’s left over so I rinse . Great for you to last 14 days on the same bag wow I can’t even go a couple with out leaks and my rashes are horrible and not to mention I have a very large parastomal hernia that’s gonna get fixed here in just a couple weeks and sadly I have to go from a colostomy to a permanent Ileostomy in a few weeks , some just don’t know how lucky they are to get theirs reversed or to never have to go through all this , but I just keep telling myself there’s always someone out there that has it worse than me so I have to keep pushing on one day at a time I know it’ll get better , I’ve had my colostomy for almost a year now this month . Anyways love your videos keep them coming we can learn alot from each other 👍🤗❤️😉
Thanks so much!! And Thank YOU for sharing as well 🙂! Yes - after I empty, I actually can forget about it for a while! It’s such a nice feeling!! I’m sorry you’ll not be able to reverse - I’m not planning on a j-pouch myself. It’s Ripley and me for the duration in this body. I started this channel originally with the “how I change…” to show my hubs how to help me if I ever needed him to do it. He encouraged me to keep going and it’s been a labor of love. Our stories can be so encouraging to others simply just by sharing them 💜! Definitely keep me posted 🤗🙏🏻
Thank you!!! I've had my stoma for 5 mths and started to try a 2 piece for travelling again. However, I couldn't get any real answers about cleaning under the rim of the base plate, even from online support groups. I nearly gave up until your video suddenly appeared. Fantastic! Thanks so much from Sth Australia. ❤
I have no doubt rinsing extends the life of the appliance. In the morning usually got a bile rich output, very corrosive. That looks really clean I'll give it a try. Sit backwards on the toilet also!
Exactly Ehn! If diluting works in other applications in life why not ours? 🙂 One thing I’ll add about the toilet seat; when I first got out of the hospital, we had a home with very small toilets so one thing I didn’t remember - and sharing this now & I’ll post here that you can always use a stool or even an old plastic bowl if your sink height works for you and empty into that, then dump it into the toilet. Because of my leg being in a full brace most of the day, in order for me to even stand up (I had a few other challenges when it came to emptying) rinsing always made my life easier - wherever I emptied the pouch: in the toilet or in the plastic bowl (then toilet). All to say the toilet you see in the video is the toilet we have in the house we are in now with oblong not round toilets so as long as I don’t gain too much more weight I’ll still be able to see it that way 😁. Otherwise, a stool in front of the toilet can also work. That’s how I made the round toilet emptying work once I was able to bend my leg and sit appropriately there. Hope that helps! Thanks so much for your comments and support!!
Thank you so much! I've never thought about doing it that way. I really hate throwing away dirty bags. I have colostomy with thick output. Would it be useful to put anything in the water to make it go away easier?
You're very welcome! And great question! I don't first hand knowledgeable about colostomy but am aware that since you still have some colon - even a little - depending on where the stoma was created - it would be thicker than my output as an ileostomate and no colon (some ostomates could still have a colon but not attached so basically same output when it's placed above or at the ileum). So, rinsing with water alone may still be beneficial and provide extended wear time. Remember the swishing motion can also get the pancaked stool too. This is one reason I love using clear pouches. I can see what's there and swish gently to remove it. I generally don't actually add anything to the water but you bring up an interesting point. I have used the deodorant/lubricant when rinsing to remove the odor as I'm rinsing. Usually, that's when I'm sick - that seems to be a telltale sign for me so I don't necessarily need to change the pouch if that works. When it doesn't - the pouch is gone! But it does work often. I'm all about saving my supplies for the rainy day but I won't sacrifice beyond what is reasonable and odor is a big nope - not doin' it! So, maybe that's worth a try and see but I've not added anything else, although other's have posted here that they'll use diluted essential oils to help with odor. I just can't say I've done that myself. Another mentioned baby oil and I've seen that somewhere on this platform too so of course, I'm not a medical professional and can't suggest either way - just sharing what other's have mentioned. I'd love to know if you do try something, let us know if it worked or didn't because we all learn from each other first hand as fellow ostomates =)
Thank you very much for this. I was diagnosed with UC recently, no surgery yet, but I'm just looking at the possibilities and everyone I see with an ileostomy or stoma seems so matter of fact/routine about it like it becomes second nature to live with. It gives me hope. Can I ask about the deodorant? How do you manage that while on the go? I can't imagine you always have it around for emptying the bag, or do you? Thanks again.
Thanks so much for your question and your kind comments Rhino!! I actually did the same thing because after I was diagnosed with IBD, it became very difficult to get under control. First it was proctitis, then it was pancolitis, then it was because I was so sick from head to toe they believed it was more Crohn’s, then after my ileostomy the biopsy of the colon gave me a UC diagnosis but I still have upper G.I. issues so I’m back to - is there still the question of Crohn’s? They were never able to get the bleeding and inflammation under control for long and I ended up with pancolitis again - which is the entire colon inflamed - and C. diff at the same time. I went on to have C. diff a couple more times and that’s eventually the combination they took out my colon for good. So I did a lot of research too because something inside told me I was on a fast track no matter what we did I might end up needing the total colectomy. The best case scenario is they are able to get it under control and you don’t need to go through this. But if you do, I think it is wise to check out all of your options. For me, the sooner I accepted it, the better I was able to shift my focus to: “it is what it is what do I do next(?)”. As far as the odor control is concerned have you seen my odor control video? About the 5:30-ish time stamp, I talk specifically about the little pocket sized packs of deodorizer that if you don’t carry any kind of a backpack or pocketbook with you, you can always stick the packet it in your pocket; if you feel like you need to have it with you all the time. th-cam.com/video/6D2RjYHxZ7c/w-d-xo.html If you carry a backpack, which I do, I use these little Dollar Tree store sample packs plastic bottles & spray. So yes, I actually do carry a mini air deodorizer and a mini version of the Brava deodorant with me. And also a 16.9 ounce water bottle for rinsing. I always keep an empty water bottle in my car and if I’m going into a store or restaurant I make sure I stick that in my backpack. Even if you don’t carry a backpack, lots of people walk around with water bottles and nobody really notices I think anyway. It doesn’t matter to me now either way if they do - I’m just remembering what it was like early on when I was a bit intimidated and self-conscious first going out. Now it doesn’t bother me. I can fill up my water bottle at the sink in a multi stall bathroom say hello to the person next to me as I’m filling it and not think anything about. Ironically enough, that’s actually my planned video for this week: emptying or even changing your appliance in a public restroom. Feel free to save these videos, if they’re helpful, to a playlist of your own. I watched a lot of TH-cam & had my GI playlist ready before my surgery. Now, if I remember to use the deodorizer before I left the house, I wouldn’t necessarily need it but it really does depend on your diet & how foods affect you. Cheese and fish are my big odor issues! I have tuna fish & baked fish once-twice a week & that’s usually for lunch or dinner which is mostly at home - where I have all my supplies. I hope that helps! Definitely let me know if you have any other questions or comments! All the best to you!
You’re welcome! Just about every ostomate out here on TH-cam or other public social media like me wants to normalize having an ostomy. None of us chose it “just because” - It’s done to save our lives and we know that. Thank YOU for taking the time to watch the videos and comment here too. Feel free to ask any questions at any time and many blessings on your journey into the medical field. Thank you for serving!!
Great video. I change mine every day. I shower normally. Then last thing. Take my bag off, and wash my stoma. My skins in good shape is I clean it with warm water. Had a few blow outs in six years. Own fault, pigged out the day before. Good wishes to you…
Thank you! I really had no idea so many people would get so much from this video! I just felt like it needed to be done 🤷🏻♀️. I’m glad to hear you can change every day with good skin!! That’s awesome!! Yes - my one and only bad blowout so far was when I thought hummus and whole grain bread chips (I made) together was a good idea…it was tasty - but she blew three bags in a row - all in a few hours. Never did that again 🤣🤦🏻♀️. Livin’ & learnin’ 🤓!
Hi Karen. Long time no hear. Yeah I still rinse my pouch. It keeps me from getting red skin around the stoma. Thanks for the great tip. Take care girl.😁
Marlene!! Sooooo good to hear from you!! I know - I haven’t had anything really channel related to share video-wise but my bi-yearly sigmoidoscopy is this week so I will soon!! Keep up the great work girl!! 😎
I sit on toilet normally but I sit way back against the toilet seat lid, an legs apart this has helped me a lot with rinsing or emptying my bag , in public I used to Neal down an people thought I was getting sick, an I would get bruises a lot of my legs my skin bruises easily anyway
Yes! I can do that on some larger toilets but I’m generally more comfy reversed. Unfortunately that also means I’ve slid off a couple times being that I get up a few times a night and am not always awake and my butt is a little big for sitting on the “skinny” end! 🤪. I’ve tried the knees thing too - same! Hurts and also I bruise very easily. Now, I have knee issues so that’s ruled out as an option anyway. I’ve stood at the sink with a large bowl and emptied into that too - then poured it down the toilet but it’s an extra step bc you gotta clean out the bowl too. The important thing is we find what works for each of us! 😎👍🏻. Thanks for sharing, Trisha!!
I know this video is a couple of years old but it just showed up on my feed and I love seeing how other people manage their ostomies. I had initially tried rinsing my bag after emptying but the seal would fall apart and my bag would always end up leaking. How do you manage to keep the seal intact? Thank you!
Well, yay for TH-cam because “they” feel it’s relevant still to so many people - which is awesome!! I haven’t even considered updating it because it has seemed to help people as is - which is my hope! 🙂 I am inclined to wonder two things when it comes to the wafer breaking down: 1) the manufacturer simply doesn’t have the composition that favors water rinsing. 2) it’s also possible if this happens soon after changing to a fresh appliance/wafer, possibly there was a section of the wafer that may not have adhered as well as the rest. For number one, I have only rinsed since using the ConvaTec moldable wafer/barrier. But I don’t think it’s reasonable to assume everyone that has mentioned rinsing works for them uses what I use. I would say if you were open to trying other products, that would be one I would certainly give a try. But you bring up a great point, because I have heard people mention (some on YT, but mostly in a Facebook group) that it breaks down their wafer, so maybe we can do a poll here and see if we can shed some light on this question! What do people use if they rinse, type of question. So, to number two, I would say, are you able to get a really good seal? What do you notice about timing? Meaning, if you don’t rinse, when do you notice a leak starting or need to change? Or do you have a change routine where you change your appliance on a specific day no matter what? Of course, I rinse all the way up to the wafer by swishing it around in the pouch but even if you wanted to just rinse what’s below the wafer and let the output on the stoma (kinda pancaking…) make its way down naturally. I wonder if that would be a benefit? I would say “yes” for me because it would at least not be as heavy. Thanks for sharing and your question! Maybe we’ll be able to collect some data that will be helpful for everybody!
How often do you empty during the night? My brother just came home from having a stroke and my sister in law is having to take care of his emptying and she sets alarm for 1 am but because of some brain damage he messes with bag after the 1 am dumping and leaks all over…. He only has his left hand that works and we think he is not really awake but somehow he gets it open and lord I can only imagine the mess. She has someone coming in twice a week to change his bag but I’m thinking if they cut that back to once a week with an overnight bag used regularly it might save them from disaster every night. Such a terrible situation
Oh Pamela, I’m so sorry for these challenges. It’s not easy for anyone in those situation. I hope something I’m typing here will help. It’s definitely dependent on (for me) when I stop eating for the night, what I’m eating for dinner & drinking (caffeine and sugar substitutes can cause higher, thinner output, fiber thickens…) and if I’m fighting a stomach bug but I usually am up every hour or two if I snack after dinner or eat dinner too late. If I don’t snack or do finish eating dinner 5-6 hours before bed, it’s closer to every 3-4 hours that I’m up to empty. If he is new to the ostomy or has had a new (different routine, diet, having been inpatient recently etc…), this can take a little while for his body to just settle too. I had a very high and watery output the first few years after my stoma was created and recovering from being so sick. I do know of people with high output (mine is generally more predictable now because of my keeping track of food intake) that will set their alarm to empty and that’s more predictable. You mentioned overnight pouches - yes - there are also high output pouches. These are more capacity & longer than the regular sizes and your sister-in-law can call the manufacturer for samples (I have done this several times - if your brother is in the USA; I’m not sure about other countries but I’d call anyway). I have not needed them yet but did get some samples in case my output is too high again and I can’t get any sleep. I get up to pee anyway so twice a night is my norm for those reasons (at least). There may also be a drainable appliance option - I’d definitely make those calls or have her do that to see what is available for his particular situation. Sometimes the supplier or manufacturer may require a change in prescription for the addition or change in appliances/pouches so they usually contact the prescribing MD for that. She may need to ask his doctor first before they will release an actual order but I think getting samples is the quickest option. Are his pouches drainable? If the closure on the pouch is Velcro, or clip, maybe add an extra clip. Those can be obtained through the supplier or manufacturer samples programs. Maybe even a binder clip could double as an extra security in the meantime(?). Y’all could also use an ostomy pouch cover - or tucked into ostomy underwear too. It may make it harder for him to open the pouch unknowingly. I will use high waisted briefs and cut a hole for the pouch to go through. And also, if his appliance is two-piece, simply taking off a non-drainable pouch would eliminate his being able to open it because it’s a “closed end” pouch; take one pouch off, replace without needing to replace the flange/baseplate. By the way, if his skin is irritated from the leaks, I’d be sure to be using skin prep if not doing so already to help protect the peristomal skin. Certainly, if he gets a good seal, and doesn’t unknowingly open it, he may safely go longer without needing a full appliance change but ultimately it may take - as you say - an overnight pouch to get there. When I was in the hospital, I was encouraged to shoot for full appliance change every 3 days, to be safe (leaks can cause peristomal skin disruptions and that can be painful before it heals - and the healing can take time if it’s rough). Some of the main reasons I can go as long as I do now, is because I have the right appliance for me, take time to get a good seal, rinsing helps, and I watch those eating schedules/food I eat (but it took a while to get that all figured out). Y’all will - it just takes some experimenting - but - while making sure the skin is protected from stool sitting on it (leak) too long. God bless y’all! It’s challenging circumstances but not impossible ♥️. I hope this info will help but I’d love to see others in our community here chime in too. **HUGS**
Hello...Thanks for sharing. I have a 4 year old daughter that was born with CE (cloacal extrosphy) which means she has a colostomy bag. This was very interesting to know you can rinse the bag out like this. Thanks for this idea. New subbie here!
Hello there! Thanks so much for joining us on the journey! Bless your hearts!!! I do hope the info shared here is helpful for you and your sweet girl!! Most of us that caught on to rinsing were never told but if you have an Ileostomy, it’s higher up than a colostomy so it tends to be more watery anyway. Mine has been all over the map for consistency and my hands were hurting trying to “move” it down the pouch - well, I shared all that 🙂 but we really all need to find what works best for each of us so I hope the info here is also helpful to y’all 💜
Quick question.....and if it is personal I understand if you don't want to answer, but do you get a lot of gas in your bag? My daughter does and I'm trying to figure out how to minimize that. It is not like she eat a lot of gassy foods. Sometimes when we wake up in the morning her bag is really bloated/big which sometimes cause lifting which eventually cause leaking.
Awwe! Oh no worries here LOL! “Air in the bag” a part of stoma life in varying degrees. I have only had one time that I had a major issue; after I ate hummus & whole grain chips. It was a rough few hours of multiple bag changes. Generally, unless there’s an unknown or non-obvious cause, those types of foods are possible reasons. Other things can cause it too for me - like any human with or without a stoma; drinking canned sodas, almost anything through a straw, or eating too fast as well. If you don’t seem to pinpoint a cause, and you’re not doing it already, I’d probably start a food / beverage journal & track for at least a week or maybe ask her pediatrician or specialist. 💜
@@TheKarahLife ok thank you. Don’t know why I haven’t thought about journaling what she eats and drinks for at least a week to see what is the cause of it. Hmmmm I will try that.
I rinse my bag too. I live in the south so A lot of sweating! And my stoma directs downward and I feel that adds to break down of wafer. That is my experience at least. I have had to wear an ostomy 4 times in my life already
Same here Claudia!! My stoma tends to point down & that’s where I reeeeeaaaly have to swish to get the output that gets stuck there! Living in the south is challenging for me at best! I have to be diligent about staying hydrated too. Like tomorrow - supposed to be low 80’s. Ugh! I was hoping winter would last a little while longer 😬. So, are you going to be able to reverse this Ostomy?
I am trying to determine if rinsing shortens my wear time. Your experience seems to be it lengthens it. All the of the ring barriers seem to swell up and melt or fall apart, break down. I am using coloplast one piece and am trying to see if I really need a barrier ring or not. A coloplast rep suggested no ring. I have seen in a few videos suggestions that the various manufacturers say rinsing is okay, but none of them have any information about it. I am changing bags every other day as I am learning what works and doesn't work. I feel so much cleaner when I can do that. I do have a bad pancaking problem so that is why rinsing a couple of times a day seems necessary. EVen my ostomy RN didn't have much info and was cautious about me doing it. So, I am experimenting to see what works best. Thanks for your videos, you have helped me a lot. I am 2 months post op.
Good for you for seeking the answers that fit your situation, Anne! At 2 months is about when I started questioning if “moving the stool down the neck” was gonna be my process bc it was killing my hands. Watery output was the norm many times a day but after my hands hurt from the thicker output, I was done with that process of emptying (and all the TP usage - and poop to clean off my hands. 👎🏻) Rinsing definitely extends wear time for me but I have to wonder if it’s just how certain products are made & how we practice rinsing. I wear a transparent pouch so I can see how long it takes for the wafer to breakdown and the ConvaTec moldable has held up longer than the Hollister had by leaps and bounds. I really didn’t have to try any others after I found the moldable but I know in the Facebook group for Ileostomates, there’s others that also have experimented and found it to go either way with other appliances. We really do need to find what works for us & that’s everything from products, our skin, warm water vs cold, wear time needs + so I hope you keep us posted on what you find out for you!
Just found your channel. I;ve had may ostomy since 88 and 89 and did not rinse because it seemed too messy and bothersome but with your suggestions I think I will try now. Thanks I have a convex stoma. Also I would imagine you also get more wear time because your stoma extends furthur out, or at least it helps. Mine is a lot smaller and if I eat raw vegetables sometimes it can pull in almost flush to my skin so I try and drink a lot of water when I do this.
Thanks for sharing! I have heard that convex can be more challenging for getting and keeping a good seal. Even with a protruding stoma, tho, I know that the thinner my output is, the more likely I am to leak so I do try and eat more fiber now than ever. It’s such a delicate balance. If you decide to try, I hope you let us know how rinsing goes for you! 🥰
Thank you Karah. Really good advice for rinsing your pouch. I tried that but standing up at my sink. However i found that it wasn't good to empty the pouch into the sink. I will try your method next time. Thanks again
I hope it works better for you Marlene! I have person recommended the sink or bowl to anyone who couldn’t stand, but is able to sit in a chair. It really needs to be at a height that works too though. Let us know if this does work any better or you find something else!
I rinse mine every time I need to empty I last 7 days . But I never thought about setting backwards on the toilet . That saves splashing and having to clean up
Seven days is great! I can usually sit backwards on the toilet if it’s an oblong toilet, but not some of the older ones - which I have had in an older house that are round. I used a plastic bowl in the sink and then discarded contents down the toilet. I had to do that when I was limited to even sitting the “normal” way (was wearing a full leg cast). I was doing good to empty my bladder!! 🤷🏻♀️ I do still have some splash back, but sometimes what mitigates that is placing toilet paper in the toilet before I empty. it can soften the impact, so to speak 😉. Thanks so much for sharing!!
I do similar, but stand or sit in front of the toilet w/the toilet seat up, no wiping needed. Then just a quick dry on the opening of my pouch with 2 pieces of toilet paper before closing it.
Thank you for sharing here, Mike! You bring up a great point regarding odor. Whether it’s GI or not. I notice certain foods are stronger “on their way out” than others. Is that the case for you? Coffee is one. Strong urinary odor. I also noticed certain foods can literally turn not only my output, a certain color, but my urine as well. Beets, primarily = very red tinted. It was unexpected and quite alarming until I looked up some folks dont process beets as well as others; pigment wise. That wasn’t the case when I had a colon so I’m thinking it’s the inability to absorb some nutrients without a colon.
It's cool that you make these videos. I've only recently got my pouch and been trying to get into a maintenance routine. I am doing the same as you and it works fine. The rinsing result also depends on how sticky the stool is. Several more rinses may be needed. Diet may have to be tweeked a little to improve stool consistency. I want to see how many days I can go without a pouch change. Thank you again!
You’re welcome Jan! Thanks for stopping by and commenting!! It is amazing to see how many people really do this practice, so I’m always encouraged to continue hearing how it works for other folks!! For most people, definitely increasing fiber content slowly can give a good indication as to what consistency would be like. Sometimes that means it all punches up together at the bottom of the pouch and it’s super easy to rinse and then other times, it’s super sticky and it takes a lot more effort to swish around my stoma to remove the “pancaking”! Early on I definitely made some missteps but I wouldn’t have known had I not so that’s OK!! Six years (today, 11/8) and I’m still experimenting!! I will always say IF I can safely add more wear time then I do. BUT if I start to feel, see, (or smell) anything out of place, I do not want skin issues so I change it. Skin prep spray / wipes for me is a wonderful thing but that wears off after a while too - for everyone it would be different. “if it itches make, the switches”!! Ultimately, protecting our peristomal skin care is crucial to longevity and health 🙂.
Great video. I am going to try this when I get home. I can see the output collecting around my stoma and this would definitely help. Do you have any tips to reduce the puffiness of the bag?
TY 💜 Inside the bag, like gas? That’s the only place it can go until you let the air out. (Burping). It just may be your body getting used to the newness. Or the gas used to pump up your stomach with air so they can operate. Was your surgery laparoscopic? Open doesn’t cause as much gas. Down the road, you’ll find that some foods can cause more gas than others. Definitely talk to the doc about what you can eat now but the UOAA recommendation is low fiber, low residue the first 4-6 weeks. High carbs, yuck, for weight gain but in the beginning, it’s actually better because it’s easy on you 🙂.
About 4:22 I show how I carefully, partially, unsnap the top and open the bottom end of my pouch. This helps let air out. th-cam.com/video/6D2RjYHxZ7c/w-d-xo.html If you have a one piece, you’ll only be able to do this with the bottom end but it works - as long as you keep the bottom end facing upwards so nothing but air comes out. 🙂
Yessssss girl! That’s it! My endometrial procedures were sooooo uncomfortable that way. Can they give you anything like Gas-ex? Walking will help move it along too.
@@janicesteele1248 I have heard of folks using mints! Good to know the Altoids have more than one purpose! Inexpensive too 😎 Thanks for sharing, Janice!
Hey there! It’s “Brava Lubricant Deodorant”, made by Coloplast. You may be able to get some samples from them directly or if you have a regular supplier. I just love the scent - it’s not perfumey & can really help control “in pouch” odors. In the USA: products.coloplast.us/coloplast/ostomy-care/brava/brava-lubricating-deodorant/
Not had my operation yet but I absolutely love this idea of rinsing out the bag.. rinsing liquid output.. (poo) from around the stoma knowing it clean sound good.. should the water be sterilised first.. I thought it should the but don't know x
Hi Cookies! Thanks for commenting! And that’s a great question! I only used bottled water when I first started this (safe to drink should be good, I thought). I’m not a medical professional so I can’t comment on that from a nurse or other practitioner’s medical expertise, but I can say that it’s been told to me (and others) that “naked shower” is perfectly fine (no appliance on during a shower) so if that water can run across my stoma and be OK, why not using it to rinse or even using warm drinking water from a bottle? I was good with that reasoning and I’ve never had a problem. I do know of several people in my online group that do the same. I’d say unless there is a medical professional telling you not to, though I would love to know why, and you’re using clean water, I don’t see why it needs to actually be sanitized water but of that helps you feel more comfortable about doing so, you could boil it and keep that in a large water bottle specifically saved for rinsing. Clean enough to drink, and same tap my shower is (my tap is safe for drinking too) that’s the level I am good with 🙂💜
Hi. Did i hear right that you can go 15 days? I can barely get mine to last more than 2 days. And also i was told by my ostomy nurse to always change it every 4th day because of bacteria. If i could keep mine from leaking i would love for it to last longer without a change Thank you for the videos..so helpful ❤
Hi Alicia! How long have you had your ostomy and is it a colostomy or an ileostomy? When I was in the hospital, it was recommended that I try & go 2 to 3 days and then change but not to be rigid (I can be) about it . The great part about changing often was the more I changed it, the less intimidated I felt. I was learning how to do what I needed to do for what look like the rest of my life, so I was OK with the learning process even though it could get frustrating. Practice, practice, practice. When I got to around 90 days, I wanted to try a two-piece because I had only been doing the one. At my Ostomy Group, a representative came in from ConvaTec and had demonstrated their moldable wafer line. I was intrigued - not needing to cut wafers anymore? And the fact that if I could get a good seal, it would continue to hug my stoma, as is part of the unique feature that line? Maybe I’d get more time between changes? (My thoughts) The leaking I was having from using the former set up, begin to become less and less frequent, after trying the moldables. One day, I went on a trip, and I was so engrossed in everything that was going on. I had totally forgotten that I hadn’t changed my wafer in several days. I felt like I “ought to” - just because but - there was no leak. No irritation. There was no evidence of one about to start either. After that day, I just kept trying to see how long I could go before I either had an itch or saw a leak about to start. This product and getting a really good seal has allowed me to go even further than two weeks but my goal is 7 to 10 days. That does get lengthen out if I happen to be sick or honestly just forget. I’ve never heard anything about the bacteria, but I’m not a nurse either. That may be where the fact that I love to rinse out anything that’s in my pouch throughout the day, so stool does not sit in there for very long comes in to play 🤷🏻♀️. I’m not sure from a medical standpoint, though. But yes, it is possible to get more safe wear time but I believe it takes getting a really good seal, (warm the wafer - big plus!) taking the time to do that, monitoring, and when taking a shower, drying the wafer immediately and it will reseal (at least on my product it does). I will also utilize the brava strips for extra hold - especially If I know I’m going to be in the water, swimming, etc.. I don’t believe the manufacturers will ever promote the amount of time that I get and that’s OK - I’m merely stating that it’s possible to go longer than a couple of days with the right product & the right administration of it - safely (skin stays healthy). And in this day and age, if I can save some money, not having to purchase as many units I’m going to do that. I’m so glad these videos are helpful for you! Definitely let me know if you have any questions. If I don’t have the answers, I will point you in the direction of folks that hopefully do. ♥️
Thank you for this. I am about to have a hysterectomy soon for severe adenomyosis and a bowel reconstruction due to severe endometriosis that is invading my bowel. They told me that I will likely wake up with a stoma. I am preparing myself and arming myself with knowledge. Thanks to your video I can go into this with more confidence. I do have a question, how bad does it smell and do you have tips for either reducing the smell or how to learn to cope with it? I have a pretty bad gag reflex and I recently almost threw up trying to get a poo sample for my doctor. 😂
Oh Sheree - that endo is brutal!! I suffered for years and they saw endometriomas were on my colon on CT but thankfully it was just seeing the backside and they were attached to my uterus. My second ever (until 4 years later) colonoscopy was done just to make sure there was no intestinal puncture. I sooooo feel for you!!! My supracervical hysterectomy (2011) was actually six years before my total colectomy (2017) but the good part about all that was, no more endo (ever) & no more pain for the next few years (IBD symptoms started up again in 2014). Good for you in researching before your surgery!! I do have an “odor control” ideas video. I’m not as squeamish as I thought I’d be - I consider that a gift for sure - but I do have some stinky stuff when I rinse - especially a few hours after tuna…cheeses can be pretty bold too for me. If you find yourself really challenged with the odor, I would definitely recommend staying in stock with odor control tabs or liquid, using 24/7. But, you may find you only need it for certain foods. Everyone really is different on the “poop process”. You can also add the odor control to your pouch after you eat. It can take 4-6 hours (on average) for the food to make its way to my pouch. A room deodorizer is a good idea too. I cover all of that in that video 🙂. I also have a video on what to expect when you get home / what to bring to the hospital etc too. I tried to think of sharing about the things I’ve experienced on this journey too. Thanks for the question & kind comments! I hope you’ll keep us posted too. Feel free to reach out anytime! We have so many great folks in this community who have lots of experiences to share here! 💜🙏🏻 Hospital & post op tips: th-cam.com/video/ZFDNa6CVucs/w-d-xo.htmlsi=5czRcUSKsyPpHt0m th-cam.com/video/Wi9XJzh_zi8/w-d-xo.htmlsi=_jPrLJv5jN7ZZYJD Odor control: th-cam.com/video/6D2RjYHxZ7c/w-d-xo.htmlsi=sq2VXvDfMbPLxrkE
@@TheKarahLife I am sorry that you suffered from endo for years. :( I am so glad you had relief for a few years at least. Is there a relationship at all with endo and IBD? I have unrelated cancer and during the PET scan they found that my ileocaecal valve lit up and enlarged lymph nodes surrounding it. This happens to be exactly where my aunt has Crohns. I also have appendicitis like pain like my aunt did before they opened her up to remove her appendix and found Crohns. They’re telling me I don’t have Crohns and that its the endometriosis causing all my pain, blood in stool, bowel obstructions etc. I will check out your videos! I am not usually a squeamish person around pretty much anything else, just poo. Poo is my thing that I cannot deal with. Not even my animals poop, and definitely not my own haha. Thank you so much for these tips! I am sad that cheese makes it worse, cheese is life!! I really appreciate your kind words, advice and reassurance. Thank you. ❤
@iSheree oh my goodness that’s quite a journey too! I’m so sorry you’re having to deal with multiple concerns!! Hopefully this surgery will answer questions and get you on the healing path!! ♥️ They do look at family with gynecology & GI conditions…have you had gene testing done? I’ve only had blood tests for MTHFR (it came back two copies) but no Lynch tests yet. I need to get that done. It’s more specific to family hx, GYN & GI. They originally thought mine was Crohn’s first - no family hx tho (outside of colorectal cancer - I unfortunately lost my dad to it and his sister - my aunt had it too 🧐). They said they thought that because of how malnourished & underweight I was - and how depleted (and wacky) my electrolytes were but the biopsy came back as ulcerative colitis after the total colectomy. I still have esophagus and stomach / duodenum issues but it’s still not been diagnosed as CD 🤷🏻♀️. My GI doc does check w/the endoscopy every few years tho and checks me for increased inflammation / cellular changes in my rectal sigmoidoscopies which are every 2 years since UC carries that CRC risk. I’ve seen other gals in FB groups ask the same question tho, the “any relationship between endo & IBD?”. I wouldn’t be surprised if the NIH has studies out there. I’ve not looked but it is asked by others so… I wish I had any suggestions for the 💩😭!! Outside of a mask or not breathing through your nose (?) have you asked the doctor for some advice? Maybe spray the area first with something like Odoban? Instead of emptying first, spray first? Hang in there!! Maybe some of the other folks here can chime in!! I’ll go ahead and post for some suggestions in the community tab and see if people will respond with some helpful tips!! 🙂🥰
@@TheKarahLife Thank you, I really hope so too! ❤ I actually saw a genetic oncologist about my family history of cancer and they felt no need to run any tests on my DNA. I had my referral to normal genetics rejected. :( In Australia we can't just ask for certain tests and it is so frustrating! I am sorry you lost your dad and aunt to cancer, it is a cruel disease. I hope you don't get cancer. I am obese due to psych meds, lack of thyroid gland and hormonal/endocrine problems (including insanely high cortisol and inflammatory markers). I can't lose the weight either, I am bleeding all the time so no swimming (which is one of the reasons why I need this hysterectomy so bad) and thats the only exercise I can do due to spina bifida and other health problems... So maybe thats why they wont take me seriously. 😢
@@iSheree oh my goodness yes it can be soooooo frustrating!!!🤦🏻♀️!! I’m so sorry to hear that happens there too 😭!! I haven’t spoken much about this here yet but I’m in testing for adrenal issues again (first time as a teen) as well. Initial I went for memory issues & weight - I was always slender but after my total colectomy and somehow NOT my hysterectomy (earlier) I started putting on weight 🤷🏻♀️ and it’s a beast to lose. I’m completely stuck and they found a RCC or Rathke’s Clef Cyst. Seems it can mess with the pituitary gland function (it’s wedged & it can mess with weight) in but most of my bloodwork is normal (including cortisol) and the cyst isn’t large enough for them to do anything. It is so frustrating when you have multiple concerns - I hear you!! Have they scanned your pituitary gland? It regulates so much in the body…and the inflammatory markers - RF? ANA? But no IBD - but IBD is autoimmune…have they suggested another? Man o man! So let’s get that surgery done soon so you can get to swimming eh?!?!? That’s a wonderful exercise!! Good for the body & soul too!! Oh - and I did a very quick video about swimming at the beach but essentially, these ostomy appliances are designed to get wet from showers & swimming too so if the subject comes up, definitely don’t let that stop you!! I took way too long to go in the water after my surgery but it doesn’t phase me now 😎. You can just towel dry off the wafer and pouch and be sure to bring spares in case you need to change it. There’s Brava strips for extra protection too (yep - I have more videos on those LOL) 🙂🥰.
I do this also! I have to be careful though as it can sometimes encourage leaks, but like you I prefer the fresh feeling. Also, I thought I was the only one that sat on toilets like riding a horse, lol
Haha!! I can’t do it on any toilet that’s round Freezy! and I don’t know where you live but there is some old houses that we’ve lived in that do not have oblong toilet so that’s not really possible for me 😂! I can now, but it’s because our current living situation has newer oblong toilets!
Haha!! I can’t do it on any toilet that’s round Freezy! and I don’t know where you live but there is some old houses that we’ve lived in that do not have oblong toilet so that’s not really possible for me 😂! I can now, but it’s because our current living situation has newer oblong toilets!
I’m quite new to this. Tomorrow will be five weeks post surgery. I was told to change it every day but I am now wondering about the possibility of also stretching it out a few days 🙂
Hi there! Thanks for your comment! Five weeks! If you’re changing daily, you have probably have had some good practice! 🙂 My stoma nurse and I talked about scheduling changes while I was still in the hospital (I had complications that kept me in another 8 days), but I never really stuck to it the way I “planned”; a leak would eventually happen but for the most part, it was 2-3 changes a week back then. Different appliance too. I wanted to try something new after my stoma size had “settled”, which they told me takes about 90 days (give or take). I found out about the moldable wafers and two pc appliances at an ostomy support meeting. I was using a one pc - same as I left the hospital with but my nurse had contacted the top three manufacturers here in the USA, and they sent me lots of samples and “welcome” packets. If you’re in the USA or I think even UK, that is a cool deal (it was free for me). And it was actually after I’d switched to my current set up, when I took a road trip to a neighboring state that I realized I’d forgotten to change my appliance! It was then I knew I didn’t have to do it the same way I’d been. 🤯😁 I know of folks who just feel comfortable changing daily and others who do get more time - so really - it’s totally up to you (and your doctor of course). 🙂 Definitely let us know if you do decide to try something different (extending wear time safely and/or trying new appliances) and how it goes! We all learn from each other 💜.
Thanks for sharing that, Patsy! A bottle of water is all it takes when traveling! Let me & the community know if you decide to try this way too! P.s. my guest bath has a bidet we installed for my husband and there’s a video on my channel for that. He LOVES it but it’s only cold water so I don’t use it AND it sprays from the underside of the seat but if it had a hook up to warm water and a hose, then I would 🙂.
Oh my goodness I’m so sorry! Are they planning on doing a repair? Can I tell you - I understand that fear - I’d say everybody here probably does, and the more we change our appliance and learn about how our body adapts, the simpler our routine becomes - and fear does subside. **HUGS** 🙏🏻🥰
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The only comment I would add is if ur on chemo i would recomment wearing gloves and u can clean off after w soap and water my appliance last about 8 to 9 days no flushing thanks
Thanks so much for sharing that tip!! Good point - I actually do keep gloves handy if I have a cut on my hand / finger any kind of broken skin, etc…And that’s great wear time without rinsing too! 👏🏻👍🏻
And I’m pinning your comment because, although I have not, many of us with ostomies do have medical history where chemo is a part of the journey to healing - so I think it’s important to share. Thanks again!
You should use distilled water not tap or bottled it could have bacteria in it.
@@gloriadavis828 hi Gloria! Thanks for sharing with us!
I actually don’t believe it’s necessary because 1), post op, my surgeon was the first to authorize me to take “naked showers” (no pouch, and the shower isn’t distilled water), and 2), 6 years of this practice and no issues.
Of course if you use the same pitcher, I’d always make sure it’s clean (I do, but to me, that’s just a common assumption).
Certainly if you feel that distilled water is a safer option for you and your doctor ok’s it, by all means do as you feel safe! No medical (or otherwise) advice is given on this channel by me - I just my experience 🙂.
I was told not to do this by the ostomy nurse saying it'll break down the protective barriers made into the bag....BS...my output would cake so much even using the lubrication. I went back to rinsing every time i empty my bag and like you i get longer wear time. Warm water helps break down the output making for easier emptying. My main problem is my stoma is in my natural waistline crease so i wasn't getting a good seal with using the rings and paste. Last week i experimented with using nothing and found my bag seals so much better.
Due to have takedown surgery in May. Can't wait to be able to poop out my own butt again. Prayers all goes well.
Blessings to you for validation on rinsing.
🎉 I’m so glad it’s working for you too, Cherie!! 🙌🏻 Thanks so much for sharing!!
That’s AWESOME you will be able to move forward with the takedown too!! Absolutely in my prayers - please keep us updated too!! (I know you’re not the only person with a temporary stoma on this channel 🥰).
Hi everyone. I'm sorry I haven't updated prior to this. I've been dealing with my recovery from my takedown surgery.
EVERYTHING WENT WELL WITH THE SURGERY and I'm two appointments post op already. Go back on the 1st of July to see the surgeon, but so far so good. Scars have healed and closed. Bowels are getting better and every day without a diaper is a good day.
Diet is anything I want to eat except corn, nuts and popcorn. I'm ok with that.
I've lost a bunch of weight, which is concerning for the PA's, but I'm ok with it. Went from 150 back in October to 119 this past Monday. I feel good and I'm eating more healthy these days.
I've been blessed with a great surgical team and happy that I'm almost myself again.
Thank you for your prayers and well wishes. 👍❤😘
YAY!! Thanks for the update Cherie!! Sounds like you’re well on your way to recovering!!
When I lost a lot of weight before my colectomy, a friend turned my attention to protein shakes for rebuilding muscle. I’m sure they’ll discuss that at your next visit (if not, maybe they have a nutritionist available?).
Please keep us posted!! Prayers continue 💜!!
@@TheKarahLife I do drink protein drinks...Ensure.
Thanks. I'll keep you posted
It is so thoughtful that people share helpful information. You certainly don’t get this information in the hospital. I had an ostomy for 3 months but now I will need a permanent one. Every bit of information you get from an ostomate is far better than from someone who has never worn one! Thank you sincerely for the help you and others give us!
You’re so welcome, Barbara!! I know my hospital is blessed to have a group with volunteers who will visit new ostomates - if they would like. I was visited by another Crohn’s and colitis patient with an ostomy, and it was very encouraging. I was also blessed to have an ostomy nurse who was actually running the UOAA ustomy support group. She still is.
I’m not in a position to volunteer in person, so this was the next best thing that I felt I could do and I’m truly grateful that it is helping folks 🥰.
Since my ostomy is stable, and I have no plans to not have it, you could say I’m choosing to be permanent, at least for the foreseeable future. I have a couple of ideas for new videos, but honestly - just about everything that I have already done here is the best of what I have to offer so far since my ostomy is stable. But if you don’t see something in my videos, and you do have questions, don’t hesitate to ask. There is something special about being a peer to peer advocate in other medical disciplines, and I see it here with us of a special importance that we can not only encourage each other, but literally see how we manage with an ostomy - which is where the videos have been helpful to me too. 🙂
After 6yrs and just as many surgeries I still find help. Especially this one. All I can say is keep reading, keep searching and asking questions. No you don't learn much from hospital.
Good luck,
Mary
Thank you! I just got my ostomy last week and it is a bit overwhelming. I am so glad that people like you post these helpful videos.
You’re very welcome, Marc! Thanks for the sweet comment!
It can be overwhelming to navigate a new way of doing life - especially this way - even if it’s temporary (or not) but there’s really hundreds of thousands of us out there (725,000+) and we are building a great community of likeminded people here too so feel free to ask any questions as you’re comfortable 🙂.
Also check out the United Ostomy Association. UOAA. I’m not sure where you are but you can find them online at www.ostomy.org.
This is really great. This is now my 9th month when I became an ostomate and I thought that using water was something that would help me feel clean and fresh. I tried it without getting it from anybody, and it worked. I can now make 7 days with one bag and with all these insights I may come to 15 days soon. Thank you so much for sharing.👌
I'm so glad for you!! I hope you let us know how it goes! I'm learning from y'all too! =)
I’ve had a pouch less than a week and was looking for a better way to empty it. Thank you for demonstrating how you do this! I’m saving on toilet paper and getting it done so much quicker!
I'm so glad you found the channel & it's helped, Roger!! It took me several weeks of irritating my arthritic pain & gobs of wiping with TP to figure it out! Good for you!!
I’ve switched to the proposal approach, I installed a hand bidet on my toilet, then I kneel on one knee in front of the toilet then if my lbs (little bag of stuff) slips it is no issue. If you’re using the reverse seat position then a slip could be a mess.
Haha yes, Gregory!! I have already made a mess but it wasn’t from falling off, it was from emptying while still mostly asleep and forgetting to close the end of the pouch before “swishing” it…then I woke up 🤦🏻♀️🤪!!
I really can’t sit backwards safely on the round toilets anyway but I’m still good on the oval style. It makes all the difference!
Aside from that, I’d love another bidet. My hubby has one he uses in our other bathroom but it doesn’t have a handheld sprayer. He likes that one but I’d love the handheld so it’s on my shopping list 😄.
Ps - LOVE your stoma/pouch name!! 😄
This was a TOTAL game changer for me! I’m a pretty new ostomate (surgery was in July) and this has made all the difference for me feeling cleaner. Yes, it extends wear time, but for me, the feeling of freshness is totally worth it. Thank you for this video because I would never have thought about this on my own. ❤
Oh YAY!! I’m so glad you found this channel and rinsing has helped you too!! ♥️🙌🏻 Thanks for sharing, Jean-Marie!!
My nurses and surgeon didn't help much at all. They didn't help me get supplies set up for when I went home. No education about it was given. It's almost just one of those things that can't really be explained or taught unless you've been through it I guess.
Oh wow, Pamela! It’s so saddening to hear stories like this when so many people have Ostomies!
I’m so grateful for my WOCN in the hospital and that TH-cam had creators here before me that I learned a lot from but I was still dumbfounded how to even close an ostomy pouch 🤦🏻♀️🤷🏻♀️ because watching wasn’t enough for me. I needed that one on one - we all deserve it!! There’s probably just not enough ostomy nurses to go around and this is why I & many others try to help here 💜.
Like you I have to feel clean, I even have to remove the bag to clean the output off my stoma. I’m a new colostomate as of July 2024. I had home health for two months and they told me nothing about taking care of my stomach so I’m figuring thing out for myself. Rinsing my bag out makes me feel much cleaner.
Thanks for sharing! I do wish there were more nurses with Ostomy education and experience. Until then, those of us that are out here on YT will continue to share what we’ve learned 🥰. My hope for this channel is all about community and education as we learn from each other!
Thank you so much for letting us see how you do it =) I was diagnosed with Stage 3b Rectal cancer, age 46. I am currently into oral chemo 5 pills/2x day. I also have a huge fibroids. So I will be getting my surgery, uterus and rectum in one operation, maybe this coming December 2024 or by next year. I was thingking of rinsing/re-use as well until I found your video and it could be done! =) Thank you so much for sharing !!!!! Sending love and hugs to you! =)
Thank YOU!! It’s folks like you who share your journey here that encourage me (((💙))).
I hope you’ll keep us posted on your recovery
🙏🏻!
Thank you so much for this, you’re awesome!! That brava lubricating deodorant is a necessity! I’ve been using it to rinse my bag every day since I’ve had my ileostomy. The doctors and nurses won’t tell you this, bc they don’t have one! I much rather get my ideas and advice online, from ppl who have the same struggles as me. Thank you again! 💕
Awwe Thanks so much!! You’re very welcome!!
Yes!! I did a LOT of TH-cam research and found a lot of help from other ostomates here so I’m just trying to do the same 💜
FyI ladies and gents** 5 or 6 drops of spearmint essential oil with some coconut oil for lubrication in your deodorizing solution helps the smell immensely.
Thank you, I was clueless as to how to rinse it out and you gave me a complete clarity now. I am paralyzed so I can’t go over the toilet but at least I can put it into a container. Thank you again, what a relief.
I’m so glad this video was helpful Amber!!
Karah. Awesome video. I've had my Ostomy for three years. Rinsing now for two years. I bought what's called a portable bedet. It's just a little hose like we all have on our kitchen sinks but it hooks to the bottom of the toilet tank. Nice little squeeze handle. Makes the process much easier. Then I kneels and empty. Cold water isn't a problem at all. Obviously I don't feel it as the Ostomy has no nerves. Almost always get 14 days out of my bag. And I use a clear front bag so I'm know I'm getting everything out of the bag. Rarely any skin irritation. I realize we're all different and nothing works for everyone but... rinsing has been a game changer. I fly a lot and when so doing, I carry a collapsible bottle. I use the handicap stall when possible. Thanks so much.
Thank you and thanks so much for sharing, Bob!! So glad rinsing is working for you as well!
My husband loves his bidet we added to the main bath. I’d love one that has the hose (his showers water from the unit attachment that sits under the seat).
I love the collapsing water bottle idea!! Makes boarding with it possible then? I’ve not flown as an ostomate.
Although I only use cooler water, if I absolutely have to, whereas warm water is not available, one benefit of using cold water that I’ve noticed is if I have a gap between my seal and my skin, the skin will feel it, but that may not be for everyone (maybe if the nerves have not healed yet…not the stoma itself, but rather the skin close to it). Then I know I need to change my full appliance ASAP. But I love that you’re not getting any downsides to rinsing and you are getting really good wear time without noticeable irritation. Way to go keeping that peristomal skin healthy! 🎉
Oh by the way, I love your personality and the way you share what you have learned on your way of this trying part of our lives, thanks!
@rosariostarr3483 ♥️♥️♥️ Thank you for sharing that!!
I have had my colostomy since September 2021, the hospital nurse who instructed me on my appliance never mentioned rinsing my bag...I found out through videos like this where it is mentioned. I like that you show how you do it, not just describe how to...like how you sit on the stool backwards, use warm water, and slosh the bag to be more effective. I don't regularly use lubricant, but I find that just using water really helps with getting my bag to empty much more easily. While I am hopeful to have a reconstruction, I know that I have an entire community on TH-cam for resources and almost any question I might have. Thank you for sharing your journey.
I’m so glad this has been helpful to you Charmin! I know I learn in multiple ways & visual tends to stick with me more than anything.
I am hoping with you for that reconstruction or reversal - whatever is proposed and yes, there is a wonderful online AND in person community (when we can all meet in person again) too! My closest United Ostomy Associations of America support group is a little over an hour away but they do meet on Zoom as well. I’m not sure where you’re located but if you’re in the states, that is a great resource too! (Ostomy.org). I’ve heard of other countries having similar organizations or that might be for IBD(?) but I’m not familiar with them.
And then speaking of international, there is a “Ladies Ileostomy Group” on Facebook (private) that is wonderful!
I hope you’ll keep us posted and yes - definitely feel free to post any questions here too 🙂.
Same issue,
I’ve learned wayyyyyyyy more from TH-cam and TikTok than I have from my ostomy nurses.
This makes so much sense, why hasn't anyone told me before ?? Thank you for this !!
I know right? 🙂 I have heard some say that they’ve had a nurse suggest it and then others that say a nurse had said it will break down your wafer too quickly - pretty much all over the map so that’s why I put a disclaimer video up because it may not work for everybody but for me, it was worth a try and it still works almost six years later. I was never told either way.
Thanks for sharing, Rosemary! I hope this channel is helpful for you!!
Kara
Thanks for sharing this. I also have been rinsing for a long time but never saw anywhere else that taught this. I agree, it just is fresher and clean. Thanks much for sharing
Yes!! 👏🏻 I HAVE to rinse!! 😊
Thank YOU!!
Adhesive remover spray 👍🏻
Thanks for the tip rinsing the pouch. I think this minimize odours aswell. I will try it. 🙋🏼♀️
You're welcome! I hope you let us know! We all learn from each other =)
Some bags have narrower openings than others: I use a long narrow funnel that I purchased at an auto parts store to pour the warm water into my bag and sometimes use the long stem to target the top area of the bag if the stuff is sticky there. It was YOUR video that got me started with rinsing, and it helps keep me 'on-top' of things in many different ways. Thanks.
Oooooh!! Great idea with the funnel!! Thanks for sharing it!! I'm sooooo thankful this video has been helpful too =) !!
This is exactly what I needed to see a week after surgery. Thank you!
You’re so welcome!! I hope rinsing works for you as well as it has for me! It definitely takes a few weeks to get into a routine of changing the appliance, recognizing the sensations of a leak starting etc…and hopefully rinsing will be at least one part of your emptying routine that makes things easier 🥰.
Life changing ostemy video! First off, I have never tried facing backwards on the toilet - and wow - doesn't make anywhere near the mess in the toilet bowl. And rinsing is genuis - it will take a couple of times to get all of the stuff from the top of the bag out but way better! I only get about 3 days our of a bag, especially if I am sweating. The ring is usually fine, but the adhesive on the flange itself breaks down and comes off. Thank you so much, new subscriber here!!
Hey Tony - thanks so much for sharing here and subscribing!! And I’m so glad this video has been helpful!!
It can take a few times for me too - depending on what is in there…that’s where some gentle “swishing” helps me. If you have one, often, an Ileostomy is generally watery so many folks may not need to rinse but my goal has been to increase my water retention to avoid dehydration so adding more veggies (that’s been slow for me because I don’t want a blockage) and whole grains is helping there. But for anyone else reading this, it is very possible to increase the bulk of the stool, depending on diet.
And my ring / wafer 😅can last 2+ weeks (I know - crazy!) but the papery outside edge adhesive is wearing off & peeling usually by a week-ish so that’s where the Hy-Tape (or Pink tape) or Brava type strips work to keep the wafer on. Love that stuff!! It usually buys me more time between full appliance changes too. 🙂
I was so happy to see your video posting. My husband is retiring so we will be on medicare and it costs more. I recently started using 2piece colostomy bag after 6yrs. I always thought the hard plastic ring would hurt. Since I began using this system i feel it helps to support my stoma prolapse . Anyway it looks as if 2piece pouch is more expensive and I now am encouraged to try rinsing the bag to help stretch my budget. Thank you so much. Mary
You are so welcome, Mary! Thanks for sharing here!
Whether you have straight Medicare or an advantage plan or a supplement, definitely find out what the allowance is per month - if you haven’t already. My supplier has yet to figure out that they don’t need to call me every month to remind me to order but they still do. I’ve saved a lot of money on my coinsurance, not sacrificing my routine or skin, and I hope you all can as well! 🥰
Thank you for sharing this video,I’ve been doing this for 3 yrs now since I’ve had my illiostomy bag as well but since I didn’t see anyone else doing it,I taught I was doing something wrong 😑 but since my skin is very sensitive that’s why I started doing it.You have a such a confidence to share this personal time with us,I’m going to continue to do this to see if it’ll continue to work 🙏🏽God bless 🙏🏽
That is AWESOME Lucia!! I know I didn’t see anybody else doing it either until after I started doing it and then I thought, “well let me look on TH-cam” 🤣 That was before I had my own channels and decided I would share what I was doing.
Thanks so much for your kind words, support, and sharing your experience too! God bless you as well!! 🤗🙏🏻
I always rinse my bag. It just feels cleaner. It’s nice to know that others do it as well. I was told not to rinse it because it can break down the adhesive but I never experienced that. Thanks you
Yes - Right? Neither have I! Glad it works for you too! Thanks for sharing here, Arlice!
I just came across you site a few minutes ago and I have to say I've never came across anyone speaking about this and honestly I was like yes ok someone else does this. Glad you spoke in this
Thanks for stopping by and sharing that, Trudy!! I had no idea the video would be so helpful or even confirmation to so many people!! I just know it’s worked for me (and now I know I’m not alone too!) 🙂😎🥰
Thank you so much. I've been being told that I shouldn't rinse my pouch and now I feel so much better and that it's okay to rinse my pouch.
You’re very welcome!! I’ve heard that from others too (told not to rinse) but I was never told that and I had a leader of the WOCN’s as my personal Ostomy nurse when I was in the hospital.
🤷🏻♀️
I just know I tried it out of total frustration with the whole “emptying thing” several times a day and not feeling clean…and it’s worked to my betterment so I’m absolutely thrilled it’s worked for others too!
My ostomy nurse told me to try it cuz I told her when I leave the bathroom I still feel dirty. So I've been rinsing for quite some time now and I definitely feel cleaner when I walk out of the bathroom. Thank you for your video. It was great.
Oh, I’m so glad to hear your ostomy nurse told you to try it!! Thanks so much for sharing!! Maybe we’ll see more nurses doing so in the future!! 🙌🏻✌🏻🙂
I have had my stoma one week. No one showed me the rinsing trick but what a great idea ! Thanks for sharing.❤️
@@ElfLooMom you’re so welcome! I didn’t start rinsing for several weeks - after my poor hands just couldn’t “move the stool” (when it wasn’t pure water) down the “neck” of the pouch. The inflammation esp in my hands was terrible after everything & then the total colectomy…so it was out of necessity & completely out of the blue to try it 😌. I remembered my surgeon telling me not to worry about the water hitting my stoma and taking showers and I thought, “why couldn’t rinse?”
I hope it helps you too, Helen!
Thank you so much for your videos! It is a huge help. My mom is just 4 weeks in post OP and we are in desperate need of help, tips and tricks, so thank God I found you! 😊❤
Thank you for stopping by! I’m so glad you’re getting help here!!
Have you been told about support groups for Ostomates through the United Ostomy Association (UOAA)? Family members attend as well and I’ve gotten some great support there, especially early on.
Feel free to ask any questions too - if I don’t know the answer, someone else here may or we can point you in the right direction 🥰.
Thank you for sharing your great ideas for making life that little bit better for us with pouches.
I do rinse myself but have read somewhere that rinsing can interfere with the air filter and stop it working so well at releasing gases.
So it is very reassuring to see that others find rinsing a good idea. I rinse with cold water using a Bidet Sprayer that comes in kit form and very easy to fit, This comes in handy for spraying down the toilet bowl too thus stopping the need to line the bowl with toilet paper prior to emptying. The kit only cost me £24 and has made life a lot easier. Once again thank you for taking the time to share your very helpful ideas and practices.
Thank YOU Brendan! I just posted a short about a bidet my husband wanted for the bathroom he normally uses (guest) and I told him “my” bath (off the master bedroom) will have a sprayer! The only challenge for me is I love rinsing my pouch with warm water and you know, that ain’t no warm water coming off the pipe 🤣! It would still help for when I don’t need to “swish” the whole pouch as I rinse. Which leads me to your great comment - many people do have a filter in their pouch & I’ve seen that complaint about them too. I prefer none. I had nothing but staining on my clothes and bag clogs (even before I started rinsing) so I try the little stickers? Meh. I switched to a no-filter and never went back 😄. I do have a mini pouch for some occasions that only comes with a filter but it’s closed so I just toss it anyway; no rinse.
I think a bidet is wonderful as long as it doesn’t irritate an existing “rear” that may still have leakage (No proctectomy here yet…). His bidet has a “front and back” sprayer in the toilet but said the front is much better (pressure wise) even on a low setting. I’m glad the manufacturer thought of both ends so to speak and it came with a lot of great reviews. Just maybe not for someone struggling with active UC or Crohn’s (or recent surgery). Is too strong for sensitive areas he said. He’s going in for open heart surgery soon so he was concerned stretching out his arms (after they crack open his chest) would inhibit his abilities to take care of the rear. I’m glad we could get him an alternative option 😎🥰.
Ima wait for the sprayer version myself.
I do love the handheld idea right there at the commode though so that version is on my wish list! Can you share (which bidet you purchased) with us, if it’s available online? Thanks!!
@@TheKarahLife I also have a bidet toilet seat that is fantastic, Warm seat, warm water and a whole lot of settings: temperature, position and pressure. I have had this seat a long time and well before I had the blockage that lead to emergency surgery and the removal of the whole of my large intestine. I had diverticulosis. I still have my rectum and may opt for reversal but am happy at the moment to wait. This is the hand held spray I bought and I am very happy with it, I have fitted it to 3 of our toilets and find it does a great job of rinsing, I don't feel the cold water because my stoma is numb. www.amazon.co.uk/gp/product/B08D9MP12X/ref=ppx_yo_dt_b_asin_title_o04_s00?ie=UTF8&th=1
Best wishes, Brendan
Hi, thanks for sharing your video. I was very lucky to have a talented son in law when I got my ostomy several years ago. He installed a sink just at the right height for me to be able to empty y bag easily & rinse it out directly from the tap or faucet as you call it. It is plumbed into the waste & everyone knows that is my sink. When I need to empty when I am out, I just use a water bottle. Best wishes from Kit in York England ❤️
That’s AWESOME Kit!! What a sweet son in law!!
The house we were in when I got my ostomy was just the right height too. It was an older house and a tiny bathroom but hey - it worked!
Thanks for sharing 💜.
Thank🥰. You have make me so happy to know how to help my husband. Risintly he have done the ostomy. This video of yours make us to be more strong for another 26 years.
I'm so glad this has been helpful for you both!
This is exactly what I do and didn’t know if I was rinsing correctly. Love your videos. Stay well!!
That’s awesome Lettie!! Thanks!!
im doing it this way also. before i even saw this video. im glad i 'm doing the correct way you are.. thanks for share ing the video
@karensimon1580 Thats GREAT, Karen! I’m so glad this works for you too!! It just seemed like a natural solution to me & I didn’t know anyone else was either 🤷🏻♀️ 🙂 Especially if you’re getting a thicker (than water) consistency and that’s really the sweet spot for absorption (pudding/applesauce) & hydration.
Thank you SOOO MUCH for sharing this🙏🏼 I am 1 month and 4 days in with my ostomy and the lubricant only helps so much! I’m developing an obsession problem with my bag almost always being dirty but I keep getting leaks needing to push my stool down it constantly pancakes and gets stuck so im changing my bag every 2 days!
You’re so welcome and it does get easier the more we get used to empty (or rinsing) and changing so you hang in there!! 🥰
Thank you so much! I just got an Ostomy and wanted to know how to clean the bag, I really hate going to bed with residual feces in my bag after emptying it.
You’re so welcome Jen! I know exactly what you mean!!
I hope this channel is encouraging and helpful to you!
Were you not assigned an ostomy nurse? My nurse is the one who taught me how to clean, change, directed me to a nutritionist because you can't just eat like before, and how to even pick up objects without hurting myself. Ask about that and see if they help you out. The nutritionist is very important, I suffered with an impaction a month after my surgery because I ate too much roughage that I now couldn't digest due to the amount of gut they removed. And stay hydrated it helps with digestion.
I think your reply was for Jen but I totally agree with nutritionist! My GI doc set me up post op with theirs. My nurse was also amazing (runs out UOAA support group too) so when they are available - and I’ve heard there’s shortages all over the world - I say, definitely utilize them!
Had stoma for 3 weeks, thank you for sharing as how to clean it.
You’re so welcome! Thank you for sharing here!
Thank you for sharing this! I do exactly the same rinsing as you do and also lubricate with the same product. I've wondered if I was alone doing this but now I know I'm not. Think this was a very needed information to many people with ostomy bags!
Thank you so much!
That’s awesome, Eva!! Thank you for commenting❣️ I’m realizing that I’m not alone too 🙂!
Thank you so much. I’m having a hard time with this situation. I just had surgery on the third and you answer a lot of questions.
You are so welcome, Shontel! Hang in there - the more we practice the routines and what to watch / feel for, the more familiar it becomes 💜🥰.
Karah, I just want to start by thanking you for making this video. I think you are very brave and thank you again for sharing your wisdom with the rest of us. I had to get a colostomy a few months ago. Initially, I was totally against the idea but, after watching a few videos like yours, I have found it's not the end of the world. Initially, the local ostomy nurse had me on a two piece Hollister appliance. What a disaster that was! It was fine for 24 hours but, after that, it became a ticking time bomb until it leaked. We switched me over to a one piece and things have been pretty good ever since. For the first 8-9 weeks, output was loose but has gotten firm ever since. I would empty a few times a day but didn't really feel clean until I started rinsing the bag. It makes you feel so much cleaner and lighter! Like just having put on a new bag. My only problem is, I experience pancaking and I think the rinsing water may breakdown the seal of my ring prematurely. The longest I have gone between changes is 6 days. It blew my mind that you were able to go two weeks or so without changing. Anyway, just wanted to know how much I appreciate your videos. Cheers!
Awwwe - THANKS so much for the kind words, David! For me, so much of this life is about helping each other seek to thrive even through difficult circumstances so seeing what I've been through help anyone else in any way is worth the risk =)
I was originally given a one piece and told if I just gave it some time - 3 months-ish - I could look at new products bc that's when my stoma would likely be settled enough that I didn't have to keep cutting a wafer etc...especially once I found the moldable line!! Game changer!!
I still get the pancaking too - esp when I'm trying new, thicker or fiberous foods or if I am on medication that dries me out. like Mucinex - uggh. But, I remember I need to keep drinking more to compensate too. A little air or even water left in the pouch is a free way to try and combat that. I don't do the air option at night bc I'm a bit of a risktaker...I do often sleep on my stomach. as long as I'm not filling up or am really good at not eating after dinner, I'm not up much to empty either.
But hey - 6 days is AWESOME, tho!! I was only getting a couple days in the beginning which led to redness so I was very happy to start trying a new appliance routine. Blessed that I landed on what I did right away when I did. If 6 days means no leaks or irritation - that's really a good sign. IMHO anyway. Keep up the great job!! Cheers to you as well!!
Thanks v.m.
@@idemeade You’re very welcome!
I actually use a hand held bidet”a kitchen sprayer that adapts to toilet supply” and it makes it so nice and much easier.
I would LOVE that!! Sweet!! Thanks for sharing!!
I too rinse out with warm water. It is easier and much cleaner than what the wound nurses taught me. I have gotten 18 days out of a change and almost never get below 14 days. Thanks for making this video.
That’s AWESOME Mark!! Thanks for sharing!!
I Admire your braveness. Thanks for sharing and I’m sure you have help many.
That’s so sweet of you to share! Thank you!
If what I go through can help someone else, the experience is not only not wasted, but to me, can take on a positive aspect 🥰.
Thank you so much for this video. I just got a stoma three days ago and I'm lying here in my hospital bed learning ostomy care. I found that pouring water in the bag made it so much easier to empty it but I wasn't sure if that was allowed. I asked a couple of my nurses but they said they didn't think that was a good idea. Now I feel so much better. The part about keeping the bag on for up to 15 days as long as the deal is still intact put a huge smile on my face. I was not looking forward to changing this thing every few days. I am a 69 year old with limited feelings in my fingers so changing the bag is going to be a nightmare.
You are so welcome, Jack!!
First of all - good for you for doing the research! I found that my journey with this ostomy life has been so much more manageable by getting all the knowledge I can!
You’re just beginning and the good part (yep…good) is not only is an ostomy a life-saver - but we learn mainly by “doing”, so, in the beginning, you will likely be getting a lot of practice changing when you either 1) schedule a day or several days to just get the practice OR when a leak starts (always carry extra supply bag when leaving the house). And lots of practice - that’s OK because it’s the “doing” thing, right? 🙂
I’m in my 7th year post total colectomy and tho I do still get that kind of time, it took several months before that 💡 moment happened and I forgot it was actually on.
When a leak begins, you’ll start to feel that itch, tickle or “wet” feeling on your skin. In the beginning, incision nerves can be numb so it’ll take a bit, but when you do notice, that’s the time to change. “If it itch, make the switch!” The more you recognize - the easier it will become getting it early.
Rinsing - there really are soooooo many opinions are out there. Of course, I can’t comment from a medical standpoint & medical staff are certainly a blessing but I personally know (as many here), that after almost seven years, I’ve never had any negative reactions on my stoma or peristomal skin. If I can get tap water on my stoma by showering (OK’d very early by my surgeon) why can’t I rinse it? 🤷🏻♀️So, that’s been what’s worked for me 🙂.
Do you have anyone to help you maybe find an alternative way to change your appliance? There are some “helps” out there like Stoma Genie and a stand/appliance they have that holds the Stoma Genie tube in place to catch output as you prep.
All the best of healing to you and feel free to ask questions here - we have a very wonderful TH-cam community 🙏🏻🤗!
I have always rinsed my bag; 36 years. I do it when I go potty to pee or just to clean out when it gets heavy or noticeable. Plain truth is that I can't stand any waste in the bag. I also use a plastic measuring cup tha I have had for over 25 years. LOL When I travel, I just use a plastic water bottle. :) When I shower I wash my bag with antibacterial soap and gently clean my stoma area, with or without my wafer. Thank you for posting, I thought I was the only one.
And you can use soapy water and then rinse with clean water.
That’s awesome!! Same, same, same!! 😃 Thanks for sharing!! I love hearing how others find the benefits too & how rinsing is more common than I realized 🙌🏻👍🏻🙂.
Sure! I think as long as the skin is clean of any residual soap, then that sets us up for a solid seal! I love using Aveeno oatmeal bar when I do the “nak*d” shower But I’ve heard of others, using various soaps that wash clean, too. Bottom line is if it works, it ain’t broken, there’s no need to fix it!! Good stuff! Thanks!!
@@TheKarahLife Actually I use Ivory Soap but I have used whatever liquid soap is available; Dawn Antibacterial being the best for cleaning the bag and the around the wafer. But if people have very sensitive skin use caution. But truly I have never had a reaction to any soap and I'm pretty sensitive to additives. I do change every 3 days and blown dry the wafer and bag after every shower. The moisture can grow bacteria especially if waste somehow spills out. Plus, if it does, I use baby wipes if not at home. You can tell I've been doing this for a long time, way before wafer were Band-Aid thin. LOL Only time I remember having an issue is when I super sweated working in the yard or when running and not showering quickly after my workouts. But you're right, clean, clean, is the answer and change often.
Oh yeah, the best deodorant is M-9; works amazing. And carry small Ozium spray in your purse or pocket, LOL
I have had my ostomy for almost 2 months. I was thinking about doing what you're doing on my own, but I really needed to get better at changing my bag before I attempted it. One piece bag with a gasket. I'm pretty good at it now and I think I will give this a try tomorrow.
Good for you!! It does become more familiar the more we change the appliance!
I started with the one piece, drainable as well (at the hospital) and at about 90 days-ish, my stoma size settled and I started looking at the “no cut” moldable wafer set up I’m still using now (my surgery was 11/8/17).
I’ll add too on rinsing, that I started “swishing” around my stoma to clear the “pancaking” but even just rinsing the bottom of the pouch at least removes what’s just at the bottom (until I get home or access to warm water). When I only have access to cold water, I have done only that - no “swish” - just to “relieve” my pouch of that bottom weight.
I hope you’ll share again how it goes for you! 🙂
Baby oil works great for odors and makes emptying easy after the water.
Thanks for sharing that, Bill! I've heard and seen others mention this works for them too!
karah this video is so brave ! you are an inspiration. I love you sis! so happy to have you in my life. look at how many people you help!
Awwwe!! Thanks hon!! I love you too!! We were meant to shine so you keep on too 💜
That’s how I have always done it. I feel clean, and have never had a problem.
Awesome, Sharleen!! Thanks for sharing! It’s amazing how so many of us know this “secret” but it’s not really a secret 🤷🏻♀️🙂!!
Great video. Helpful comments and great replies. This is sooo helpful! I don’t have a Stoma. I had a major stroke and I am in a wheelchair I do have bowel problems. It’s very difficult. There’s very little help available here so I have been using a wonderful physio on TH-cam and learning about other related solutions on TH-cam. Thanks soo much for posting this. At Least I have some awareness now! Hopefully it may not be required! Thank you again ❤
Thank you so much for stopping by & for the kind comments! I’m so very sorry Sheilagh - I don’t know what it means to have had a stroke but - and by no means the same reasons - I did spend several months partially paralyzed time in a wheelchair and full leg brace post op due to a pre-op anesthesia block mishap (the doc numbed my leg as well as my stomach) so I can offer some suggestions how to navigate this process from a laying down and a seated position (as well as standing) IF this will be part of your journey - whether for you and/or your caregivers.
I pray that you will recover and not need to go down this road but feel free to reach out at any point either way! ♥️🤗🙏🏻
@@TheKarahLife So sorry to hear about your story, but please know you are an inspiration. I have had diarrhea for more than a year, it may be my meds or it may be Chrons/IBS. I’m hoping neither, it happens mostly when I stand to use my fame to get to the bathroom. Otherwise I’m in bed or in my Wheelchair. Good luck on your journey, you have taken the foreboding mystery away. That’s a very good thing! Thank you ☺️
I hope your docs figure that out for you! I’m happy to help 🙂💜
Wonderful idea..thank you..never tried that but will now because of you!!
You’re very welcome!! I am amazed to see how many are sharing that they’ve been doing this a whole lot longer than me with a lot of success too so I pray it works for you as well!!
Thank you so very much you asked her to question I've often thought about I'm very grateful❤
Glad to help!! Thanks for the feedback 🙂♥️!!
Thanks for posting.
I'm 5 weeks post opp and installed a bidet sprayer (bum gun) to my toilet a week ago.
The water isn't warm but I'm in Queensland Australia.
Oh my goodness I LOVE that!! “Bum gun”!!!! 🤣 Thanks for sharing!!
My friend got me a shirt that says “Frog Whisperer” LOL!! We have the cutest baby frogs here right now and I’m forever asking them to not poop on my storm door (they’re cute but hard of hearing I think 🤣🤷🏻♀️🐸).
Wow, smart way of prolonging your appliance and stay clean and light!👍
Thanks Tim!! Yes and it definitely is the way to go when you have arthritis in your hands too!! 🙂
I use a bidet sprayer to rinse mine. It’s not to get multi days of wear. I just do it so the bag is clean. The area where the bag is attached is alway itching so I change my bag every other day
Thanks for sharing, Linda! I'd love to get that type of bidet. My husband and I added one that sprays from the seat but that's not helpful for the pouch (he love it LOL!).
I'm just curious, when you get the itching, is it also leaking? or is it related to maybe the adhesive?
I had to do this just because it’s a mess and I don’t like mess, smells anything. I actually change pouches every day or other day. But anyways I’m happy to see You can wash them out. Thxx
Yes! Thanks for sharing, Debb! TY!!
I too feel the need to rinse but a total game changer for me is a hand held portable bidet
Oh please tell! A portable? Can you share the make/model you use? I love the idea of our bidet but it is one that only has the sprayer built in, under the seat area. I’d love to have one in our camper bathroom too (I lug jugs of water bc I don’t trust campground water that much to drink or rinse with it…) 🫣
Excellent demo!
Thanks, Colleen! I’m glad it was helpful!
Thank you so... so much I've bin doing this rinsing for four years Can't stand the pouch half full,
Love lisernning to you.... Regards Simon.. England Cambridge,
Rinsers unite! 😀 So glad to hear and THANK YOU, Simon!
Brilliant idea im going to give it a go. Iv had my Stoma 9 weeks now so looking for anything to help me out. Thanks
Thank you, Jakki! I hope it helps!!
I have a retracted stoma so the smallest amount of waste left behind causes huge amounts of skin irritation and damage. I compare it to the feeling of pouring ketchup on a hundred paper cuts. Each time it outputs it feels like lava flowing over a stab wound in my stomach. If I do not completely rinse out the bag and stoma area I will be miserable for hours. I have lost over 60 lbs (30 of which were not needed to be lost and am now way way underweight) because it's easier to feel hunger than the pain of the output.
I have since purchased hand held bidet kits for my bathrooms. They have been a game changer in emptying and cleaning my stoma. I can adjust the flow and direct it into the bag to make the waste flow straight into the toilet. It also keeps my hands and legs from getting waste all over them. When I am out in public I carry a bottle that I purchased on Amazon that is specifically made to rinse ostomy bags. It is only $10.
I know how physically difficult this journey is. Even tougher is the mental side. I'm glad there are folks like you who are brave enough and willing to share your stories and ideas that help the rest of us out.
Oh my goodness that has got to be painful! I’m so very sorry to hear you have had to struggle with a hiding stoma 😢.
Ripley, occasionally (if I fast) gets back to her original size - just enough above the skin - but the moldable wafer still moves with her otherwise I’m sure I’d be in agony. I have experienced leaks - especially early on - but my skin healed thankfully. Just one leak does a number on the skin and by the time we feel it, it’s already doing so. Does skin prep help at all? “Crusting”?
I’m glad you have found a rinse bottle that works - I think I’ve seen it online; it has a long straw-like tube? I may post that under the community tab for others but if you can share a link that would be great for others too!
Have you talked to a stoma nurse or the surgeon? Is it an option to revise your stoma? Do you use a convex wafer? My heart goes out to you! These stoma things are made to save our lives and give us a better quality too, not give us a new issue to contend with.
Thanks for your kind comments and sharing part of your story too. Likeminded folks on this unpredictable journey help give me strength too 💜🙏🏻!
I just got my temporary appliance three weeks I started doing this when I could finally found a pouch that stays on I feel so much better helps if it becomes logged, my bag seems to last longer. Thanks 😊
Oh I’m so glad you found a pouch system that works for you, Peaceful lady!! That’s the key and rinsing just does the same for me! I wish more ostomates knew. Hopefully we’ll get the word out here and more will at least try 🙂. It may not be for everyone and that’s OK - I’m just sharing what’s done wonders for me too 💜.
Thanks very informative your a very brave woman
@@Thomas-g5t2k you’re so welcome! Thank You for the kind words❣️
Just found your video about changing the pouch. Very good info. Love your sense of humor. I have an ileostomy. So my output is very liquidy. Sometimes i get the skin around the stoma irritated. Love the boyshorts. I also wear a belt. It feels alot mor secure. Thanks again
LOL! Thanks! I have to laugh cuz we go through far too much right? 😁
I do live in those shorts I have to say (not outside the house 🤣)
Yes I have seen where some people have so many surgeries that they go between Ileostomies and colostomies and J pouches etc… i’ve only known an iliostomy and had significant high water output for my first few years. Only recently have I been able to really figure out how to try and firm things up without getting a blockage. There’s definitely some more video ideas in there 😎.
Do you use the stoma prep applications? I love the Cavilon 3M. Even though I can get those mini watery leaks, my skin still is protected.
I also rinse my pouch and I get 8 days before hanging . I feel much cleaner rinsing the pouch . Thanks for your reassurance. Fran
That’s AWESOME wear time, Fran!! Thanks so much for sharing!!
Karah, thanks for putting out this video! I am new to this whole world, thanks to a bad case of diverticulitis that resulted in a perforated colon. I an 6 weeks post surgery, and have always hated emptying my bag as it seems I can never really get it empty. I tried your method and was very pleasantly surprised at how well it worked, but I also noticed a pleasant side effect, and that was a significant decrease in odor when emptying it. Another little trick that I was given was to drop a couple of tic tac's into the bag after emptying and when putting in deodorizer. So far between rinsing in the morning and evening, and using tic tac's, the odor has been greatly reduced!
You're very welcome!! That's great you've found some wonderful results from such a simple thing, Norman!! I've not used them yet, but I have heard about the tic tac's too!! THANKS so much for sharing!! Your experience gives others ideas too! =)
Hi, the same has happened to me with diverticulitis. Have only had my bag for 3 weeks. When will you get your reversal, if you dont mind me asking.
I honestly don't know. I had my surgery on May 18th, and my case was very severe. It was crazy for me as I was working overtime the Saturday before feeling great, started getting sick Sunday evening, and by Tuesday midnight I was in ICU and they did surgery on Thur. The surgeon said he had never seen a case of infection as bad as mine in his 20 years of doing surgery. They ended up taking 6 inches out of my sigmoid colon and the surgeon said that they would probably take more when they go back in to put me together because there was too much inflammation at the time of the original surgery. My surgeon said he would evaluate my colon health with a colonoscopy after 6 months and make a determination as to when to put me back together. I thank God that I have been able to to bounce back and get back on my feet as quickly as I did. I went back to work the 1st of July and even with the Kansas heat, I have been going strong ever since. I am a comercial HVAC service tech and my job is very physically demanding. I am out doors and climbing, lifting and caring 50+ pounds every day and I am in my mid 50's. I have found using a stealth belt was a great way to conceal my bag and keep it from getting caught up when working. At work I carry a 2 bags with 4 - 12 oz Gatorade bottles full of water and that way I can take care any thing at work, even if it is in a porta john. Norm@@crystalebner954
Thanks for the video! I’m new to the bag and have been rinsing even though my ostomy nurse said not to because it can cause moisture and might be causing my leaks. But I needed to feel cleaner. This is helpful how to do it right. Some days it’s so hard to have this. My first week home I was a wreck. This is second week and I’m trying to adjust. Output can be so often some days too and it’s gross. Also I wear gloves each time and am trying to not have the bag so dirty after dumping.
Hey there! I get it!! I totally feel like I need to get everything I can out of the pouch / bag each time I use the restroom even though in the beginning for me, it just filled right back up (with water before my output started thickening).
I have heard a few others saying that they were told the same thing or they found that to be true themselves that with their particular situation, rinsing has the opposite effect (they change more often) but comparatively speaking, it really is just a small few that I’ve heard of. Now, that can depend on many factors - like maybe how well the wafer is made, cold or warm water, or maybe how good of a seal we get against the skin when we first change, which takes a little while to get down (and it’s totally normal because that’s just a learning curve in the beginning) or even just our skin response to a particular brand of appliance. I can’t say for sure, but we all do what we need to do in order to effectively deal with this new way of doing things and that does include making sure our peristomal skin stays healthy. I don’t have a medical degree to comment from a professional standpoint. I just know what works for me 🥰.
I actually used gloves in the very beginning myself, because it just didn’t seem like a natural thing to have output, even splash on my fingers 🥴 but I don’t now, because I am in the bathroom anyway, and always have plenty of soap on hand (like a few bottles on my sink!) & use a dedicated wash rag or baby wipe for my hands if it happens and of course wash as soon as I’m done. A bleach based cleaner is always near my reach for toilet cleaning too…It’s just a preference and honestly if that helps you feel better - again, do what you need to do 🙂. I still keep a couple of gloves with my supplies in the bathroom anyway - mainly now, just in case I have any broken skin - I will use it.
Hang in there!! With each appliance change, and each day with your ostomy you will continue to learn what works & what doesn’t. I’m not sure where you are in the world, but I’ve also had a lot of support from online communities from Facebook to other TH-camrs, as well as the ostomy nurses and staff at my suppliers & manufactures. I am also very blessed to have a United Ostomy Association (UOAA) support group within a little over an hours drive from me. Support is so important with such a HUGE life change and that’s why I’m out here doing this myself, so please feel free to reach out with any questions & comments!! 🤗
I do the eaact same thing with my osotomy pouch from time-to-time, or better still, if have left-over tissues, I soak them in water and pardon the pun, "dump" them into the pouch to absorb the output. I definitely make sure hands are clean also the outlet.
@chinlesswonderkid YES!! Thanks for sharing! I have been putting some toilet tissue in my pouch (well, about 3-4 pieces and folded up) when I need to absorb especially runny output. I love the “Diamonds” sachets but they can be an expensive expense just to flush! TP is pretty affordable in comparison 😁 Thankfully, it doesn’t happen often anymore but it does work and the next time I rinse, it flows out with the rest of the output! 🤯 🙂
Even with some left-over regular gauze dressings I do it. I must keep an eye on videos in future.@@TheKarahLife
Yes! On the TP - I’ll roll some up in a ball and tuck it inside too! Cheap absorber!! Especially for those very watery days. Thanks for sharing that!
Thank you for sharing , I’ve always rinsed my bag it helps so it’s not so heavy I can’t stand when it weights down on my stomach I like it when it feels very light I’ve done it since day one even when they say not to , one I just don’t want to see all the poo sitting on the bag that’s left over so I rinse . Great for you to last 14 days on the same bag wow I can’t even go a couple with out leaks and my rashes are horrible and not to mention I have a very large parastomal hernia that’s gonna get fixed here in just a couple weeks and sadly I have to go from a colostomy to a permanent Ileostomy in a few weeks , some just don’t know how lucky they are to get theirs reversed or to never have to go through all this , but I just keep telling myself there’s always someone out there that has it worse than me so I have to keep pushing on one day at a time I know it’ll get better , I’ve had my colostomy for almost a year now this month . Anyways love your videos keep them coming we can learn alot from each other 👍🤗❤️😉
Thanks so much!! And Thank YOU for sharing as well 🙂!
Yes - after I empty, I actually can forget about it for a while! It’s such a nice feeling!!
I’m sorry you’ll not be able to reverse - I’m not planning on a j-pouch myself. It’s Ripley and me for the duration in this body. I started this channel originally with the “how I change…” to show my hubs how to help me if I ever needed him to do it. He encouraged me to keep going and it’s been a labor of love. Our stories can be so encouraging to others simply just by sharing them 💜!
Definitely keep me posted 🤗🙏🏻
Thank you!!! I've had my stoma for 5 mths and started to try a 2 piece for travelling again. However, I couldn't get any real answers about cleaning under the rim of the base plate, even from online support groups. I nearly gave up until your video suddenly appeared. Fantastic! Thanks so much from Sth Australia. ❤
@@annepomeroy3339 awwwwwe!! I’m so glad this has been helpful! YAY!! Happy travels 🙂
I have no doubt rinsing extends the life of the appliance. In the morning usually got a bile rich output, very corrosive. That looks really clean I'll give it a try. Sit backwards on the toilet also!
Exactly Ehn! If diluting works in other applications in life why not ours? 🙂
One thing I’ll add about the toilet seat; when I first got out of the hospital, we had a home with very small toilets so one thing I didn’t remember - and sharing this now & I’ll post here that you can always use a stool or even an old plastic bowl if your sink height works for you and empty into that, then dump it into the toilet. Because of my leg being in a full brace most of the day, in order for me to even stand up (I had a few other challenges when it came to emptying) rinsing always made my life easier - wherever I emptied the pouch: in the toilet or in the plastic bowl (then toilet).
All to say the toilet you see in the video is the toilet we have in the house we are in now with oblong not round toilets so as long as I don’t gain too much more weight I’ll still be able to see it that way 😁. Otherwise, a stool in front of the toilet can also work. That’s how I made the round toilet emptying work once I was able to bend my leg and sit appropriately there.
Hope that helps! Thanks so much for your comments and support!!
Thank you so much! I've never thought about doing it that way. I really hate throwing away dirty bags. I have colostomy with thick output. Would it be useful to put anything in the water to make it go away easier?
You're very welcome! And great question! I don't first hand knowledgeable about colostomy but am aware that since you still have some colon - even a little - depending on where the stoma was created - it would be thicker than my output as an ileostomate and no colon (some ostomates could still have a colon but not attached so basically same output when it's placed above or at the ileum). So, rinsing with water alone may still be beneficial and provide extended wear time. Remember the swishing motion can also get the pancaked stool too. This is one reason I love using clear pouches. I can see what's there and swish gently to remove it.
I generally don't actually add anything to the water but you bring up an interesting point. I have used the deodorant/lubricant when rinsing to remove the odor as I'm rinsing. Usually, that's when I'm sick - that seems to be a telltale sign for me so I don't necessarily need to change the pouch if that works. When it doesn't - the pouch is gone! But it does work often. I'm all about saving my supplies for the rainy day but I won't sacrifice beyond what is reasonable and odor is a big nope - not doin' it!
So, maybe that's worth a try and see but I've not added anything else, although other's have posted here that they'll use diluted essential oils to help with odor. I just can't say I've done that myself. Another mentioned baby oil and I've seen that somewhere on this platform too so of course, I'm not a medical professional and can't suggest either way - just sharing what other's have mentioned. I'd love to know if you do try something, let us know if it worked or didn't because we all learn from each other first hand as fellow ostomates =)
d3
Thank you very much for this. I was diagnosed with UC recently, no surgery yet, but I'm just looking at the possibilities and everyone I see with an ileostomy or stoma seems so matter of fact/routine about it like it becomes second nature to live with. It gives me hope. Can I ask about the deodorant? How do you manage that while on the go? I can't imagine you always have it around for emptying the bag, or do you? Thanks again.
Thanks so much for your question and your kind comments Rhino!!
I actually did the same thing because after I was diagnosed with IBD, it became very difficult to get under control. First it was proctitis, then it was pancolitis, then it was because I was so sick from head to toe they believed it was more Crohn’s, then after my ileostomy the biopsy of the colon gave me a UC diagnosis but I still have upper G.I. issues so I’m back to - is there still the question of Crohn’s?
They were never able to get the bleeding and inflammation under control for long and I ended up with pancolitis again - which is the entire colon inflamed - and C. diff at the same time. I went on to have C. diff a couple more times and that’s eventually the combination they took out my colon for good.
So I did a lot of research too because something inside told me I was on a fast track no matter what we did I might end up needing the total colectomy.
The best case scenario is they are able to get it under control and you don’t need to go through this. But if you do, I think it is wise to check out all of your options.
For me, the sooner I accepted it, the better I was able to shift my focus to: “it is what it is what do I do next(?)”.
As far as the odor control is concerned have you seen my odor control video? About the 5:30-ish time stamp, I talk specifically about the little pocket sized packs of deodorizer that if you don’t carry any kind of a backpack or pocketbook with you, you can always stick the packet it in your pocket; if you feel like you need to have it with you all the time.
th-cam.com/video/6D2RjYHxZ7c/w-d-xo.html
If you carry a backpack, which I do, I use these little Dollar Tree store sample packs plastic bottles & spray. So yes, I actually do carry a mini air deodorizer and a mini version of the Brava deodorant with me. And also a 16.9 ounce water bottle for rinsing. I always keep an empty water bottle in my car and if I’m going into a store or restaurant I make sure I stick that in my backpack.
Even if you don’t carry a backpack, lots of people walk around with water bottles and nobody really notices I think anyway. It doesn’t matter to me now either way if they do - I’m just remembering what it was like early on when I was a bit intimidated and self-conscious first going out. Now it doesn’t bother me. I can fill up my water bottle at the sink in a multi stall bathroom say hello to the person next to me as I’m filling it and not think anything about. Ironically enough, that’s actually my planned video for this week: emptying or even changing your appliance in a public restroom. Feel free to save these videos, if they’re helpful, to a playlist of your own. I watched a lot of TH-cam & had my GI playlist ready before my surgery.
Now, if I remember to use the deodorizer before I left the house, I wouldn’t necessarily need it but it really does depend on your diet & how foods affect you. Cheese and fish are my big odor issues! I have tuna fish & baked fish once-twice a week & that’s usually for lunch or dinner which is mostly at home - where I have all my supplies.
I hope that helps! Definitely let me know if you have any other questions or comments! All the best to you!
Iam a medical student and I wanted to see my patients perspective of life with a stoma. Thank you!
You’re welcome! Just about every ostomate out here on TH-cam or other public social media like me wants to normalize having an ostomy. None of us chose it “just because” - It’s done to save our lives and we know that.
Thank YOU for taking the time to watch the videos and comment here too. Feel free to ask any questions at any time and many blessings on your journey into the medical field.
Thank you for serving!!
Great video. I change mine every day. I shower normally. Then last thing. Take my bag off, and wash my stoma. My skins in good shape is I clean it with warm water. Had a few blow outs in six years. Own fault, pigged out the day before. Good wishes to you…
Thank you! I really had no idea so many people would get so much from this video! I just felt like it needed to be done 🤷🏻♀️.
I’m glad to hear you can change every day with good skin!! That’s awesome!!
Yes - my one and only bad blowout so far was when I thought hummus and whole grain bread chips (I made) together was a good idea…it was tasty - but she blew three bags in a row - all in a few hours. Never did that again 🤣🤦🏻♀️. Livin’ & learnin’ 🤓!
Hi Karen. Long time no hear. Yeah I still rinse my pouch. It keeps me from getting red skin around the stoma. Thanks for the great tip. Take care girl.😁
Marlene!! Sooooo good to hear from you!! I know - I haven’t had anything really channel related to share video-wise but my bi-yearly sigmoidoscopy is this week so I will soon!!
Keep up the great work girl!! 😎
I sit on toilet normally but I sit way back against the toilet seat lid, an legs apart this has helped me a lot with rinsing or emptying my bag , in public I used to Neal down an people thought I was getting sick, an I would get bruises a lot of my legs my skin bruises easily anyway
Yes! I can do that on some larger toilets but I’m generally more comfy reversed. Unfortunately that also means I’ve slid off a couple times being that I get up a few times a night and am not always awake and my butt is a little big for sitting on the “skinny” end! 🤪.
I’ve tried the knees thing too - same! Hurts and also I bruise very easily. Now, I have knee issues so that’s ruled out as an option anyway.
I’ve stood at the sink with a large bowl and emptied into that too - then poured it down the toilet but it’s an extra step bc you gotta clean out the bowl too.
The important thing is we find what works for each of us! 😎👍🏻. Thanks for sharing, Trisha!!
😊...Excellent advice, thanks for sharing
I’m so glad you found it helpful, Tony! Thank You!!
Thank you for sharing. May God bless you in a great way. Hello from Puerto Rico. ❤
You’re very welcome, Mary! Thank YOU!! God bless you too my sister❣️
Sister?
Yes, I want to be your sister!
Would you accept me?
@@marysanmartin Whenever someone shares their wish that God would bless me, I’m reminded that all who are in Christ are family!
@@TheKarahLife Yes, you are right: in Christ we are family. So now you have a new sister down here in Puerto Rico. Nice meeting you Karah! ❤️
@marysanmartin YAY!! ♥️ 🤗
I know this video is a couple of years old but it just showed up on my feed and I love seeing how other people manage their ostomies. I had initially tried rinsing my bag after emptying but the seal would fall apart and my bag would always end up leaking. How do you manage to keep the seal intact? Thank you!
Well, yay for TH-cam because “they” feel it’s relevant still to so many people - which is awesome!! I haven’t even considered updating it because it has seemed to help people as is - which is my hope! 🙂
I am inclined to wonder two things when it comes to the wafer breaking down:
1) the manufacturer simply doesn’t have the composition that favors water rinsing.
2) it’s also possible if this happens soon after changing to a fresh appliance/wafer, possibly there was a section of the wafer that may not have adhered as well as the rest.
For number one, I have only rinsed since using the ConvaTec moldable wafer/barrier. But I don’t think it’s reasonable to assume everyone that has mentioned rinsing works for them uses what I use. I would say if you were open to trying other products, that would be one I would certainly give a try. But you bring up a great point, because I have heard people mention (some on YT, but mostly in a Facebook group) that it breaks down their wafer, so maybe we can do a poll here and see if we can shed some light on this question! What do people use if they rinse, type of question.
So, to number two, I would say, are you able to get a really good seal? What do you notice about timing? Meaning, if you don’t rinse, when do you notice a leak starting or need to change? Or do you have a change routine where you change your appliance on a specific day no matter what?
Of course, I rinse all the way up to the wafer by swishing it around in the pouch but even if you wanted to just rinse what’s below the wafer and let the output on the stoma (kinda pancaking…) make its way down naturally. I wonder if that would be a benefit? I would say “yes” for me because it would at least not be as heavy.
Thanks for sharing and your question! Maybe we’ll be able to collect some data that will be helpful for everybody!
How often do you empty during the night? My brother just came home from having a stroke and my sister in law is having to take care of his emptying and she sets alarm for 1 am but because of some brain damage he messes with bag after the 1 am dumping and leaks all over…. He only has his left hand that works and we think he is not really awake but somehow he gets it open and lord I can only imagine the mess. She has someone coming in twice a week to change his bag but I’m thinking if they cut that back to once a week with an overnight bag used regularly it might save them from disaster every night. Such a terrible situation
Oh Pamela, I’m so sorry for these challenges. It’s not easy for anyone in those situation. I hope something I’m typing here will help.
It’s definitely dependent on (for me) when I stop eating for the night, what I’m eating for dinner & drinking (caffeine and sugar substitutes can cause higher, thinner output, fiber thickens…) and if I’m fighting a stomach bug but I usually am up every hour or two if I snack after dinner or eat dinner too late. If I don’t snack or do finish eating dinner 5-6 hours before bed, it’s closer to every 3-4 hours that I’m up to empty.
If he is new to the ostomy or has had a new (different routine, diet, having been inpatient recently etc…), this can take a little while for his body to just settle too. I had a very high and watery output the first few years after my stoma was created and recovering from being so sick.
I do know of people with high output (mine is generally more predictable now because of my keeping track of food intake) that will set their alarm to empty and that’s more predictable.
You mentioned overnight pouches - yes - there are also high output pouches. These are more capacity & longer than the regular sizes and your sister-in-law can call the manufacturer for samples (I have done this several times - if your brother is in the USA; I’m not sure about other countries but I’d call anyway). I have not needed them yet but did get some samples in case my output is too high again and I can’t get any sleep. I get up to pee anyway so twice a night is my norm for those reasons (at least).
There may also be a drainable appliance option - I’d definitely make those calls or have her do that to see what is available for his particular situation. Sometimes the supplier or manufacturer may require a change in prescription for the addition or change in appliances/pouches so they usually contact the prescribing MD for that. She may need to ask his doctor first before they will release an actual order but I think getting samples is the quickest option.
Are his pouches drainable? If the closure on the pouch is Velcro, or clip, maybe add an extra clip. Those can be obtained through the supplier or manufacturer samples programs. Maybe even a binder clip could double as an extra security in the meantime(?).
Y’all could also use an ostomy pouch cover - or tucked into ostomy underwear too. It may make it harder for him to open the pouch unknowingly. I will use high waisted briefs and cut a hole for the pouch to go through. And also, if his appliance is two-piece, simply taking off a non-drainable pouch would eliminate his being able to open it because it’s a “closed end” pouch; take one pouch off, replace without needing to replace the flange/baseplate.
By the way, if his skin is irritated from the leaks, I’d be sure to be using skin prep if not doing so already to help protect the peristomal skin. Certainly, if he gets a good seal, and doesn’t unknowingly open it, he may safely go longer without needing a full appliance change but ultimately it may take - as you say - an overnight pouch to get there. When I was in the hospital, I was encouraged to shoot for full appliance change every 3 days, to be safe (leaks can cause peristomal skin disruptions and that can be painful before it heals - and the healing can take time if it’s rough). Some of the main reasons I can go as long as I do now, is because I have the right appliance for me, take time to get a good seal, rinsing helps, and I watch those eating schedules/food I eat (but it took a while to get that all figured out). Y’all will - it just takes some experimenting - but - while making sure the skin is protected from stool sitting on it (leak) too long.
God bless y’all! It’s challenging circumstances but not impossible ♥️.
I hope this info will help but I’d love to see others in our community here chime in too. **HUGS**
Thanks Karah for tnie video! I’m new to the whole ostomy world nad didn’t know how to rinse the bag even though my Nurze mentioned it. Thank u!
You’re so welcome Teresa! I’m glad to know your nurse actually mentioned it too!!
Hello...Thanks for sharing. I have a 4 year old daughter that was born with CE (cloacal extrosphy) which means she has a colostomy bag. This was very interesting to know you can rinse the bag out like this. Thanks for this idea. New subbie here!
Hello there! Thanks so much for joining us on the journey! Bless your hearts!!! I do hope the info shared here is helpful for you and your sweet girl!!
Most of us that caught on to rinsing were never told but if you have an Ileostomy, it’s higher up than a colostomy so it tends to be more watery anyway. Mine has been all over the map for consistency and my hands were hurting trying to “move” it down the pouch - well, I shared all that 🙂 but we really all need to find what works best for each of us so I hope the info here is also helpful to y’all 💜
@@TheKarahLife Yes…. Thank you so much. 🥰
Quick question.....and if it is personal I understand if you don't want to answer, but do you get a lot of gas in your bag? My daughter does and I'm trying to figure out how to minimize that. It is not like she eat a lot of gassy foods. Sometimes when we wake up in the morning her bag is really bloated/big which sometimes cause lifting which eventually cause leaking.
Awwe! Oh no worries here LOL! “Air in the bag” a part of stoma life in varying degrees.
I have only had one time that I had a major issue; after I ate hummus & whole grain chips. It was a rough few hours of multiple bag changes. Generally, unless there’s an unknown or non-obvious cause, those types of foods are possible reasons.
Other things can cause it too for me - like any human with or without a stoma; drinking canned sodas, almost anything through a straw, or eating too fast as well. If you don’t seem to pinpoint a cause, and you’re not doing it already, I’d probably start a food / beverage journal & track for at least a week or maybe ask her pediatrician or specialist. 💜
@@TheKarahLife ok thank you. Don’t know why I haven’t thought about journaling what she eats and drinks for at least a week to see what is the cause of it. Hmmmm I will try that.
I rinse my bag too. I live in the south so A lot of sweating! And my stoma directs downward and I feel that adds to break down of wafer. That is my experience at least. I have had to wear an ostomy 4 times in my life already
Same here Claudia!! My stoma tends to point down & that’s where I reeeeeaaaly have to swish to get the output that gets stuck there!
Living in the south is challenging for me at best! I have to be diligent about staying hydrated too. Like tomorrow - supposed to be low 80’s. Ugh! I was hoping winter would last a little while longer 😬.
So, are you going to be able to reverse this Ostomy?
I am trying to determine if rinsing shortens my wear time. Your experience seems to be it lengthens it. All the of the ring barriers seem to swell up and melt or fall apart, break down. I am using coloplast one piece and am trying to see if I really need a barrier ring or not. A coloplast rep suggested no ring. I have seen in a few videos suggestions that the various manufacturers say rinsing is okay, but none of them have any information about it. I am changing bags every other day as I am learning what works and doesn't work. I feel so much cleaner when I can do that. I do have a bad pancaking problem so that is why rinsing a couple of times a day seems necessary. EVen my ostomy RN didn't have much info and was cautious about me doing it. So, I am experimenting to see what works best. Thanks for your videos, you have helped me a lot. I am 2 months post op.
Good for you for seeking the answers that fit your situation, Anne! At 2 months is about when I started questioning if “moving the stool down the neck” was gonna be my process bc it was killing my hands. Watery output was the norm many times a day but after my hands hurt from the thicker output, I was done with that process of emptying (and all the TP usage - and poop to clean off my hands. 👎🏻)
Rinsing definitely extends wear time for me but I have to wonder if it’s just how certain products are made & how we practice rinsing. I wear a transparent pouch so I can see how long it takes for the wafer to breakdown and the ConvaTec moldable has held up longer than the Hollister had by leaps and bounds. I really didn’t have to try any others after I found the moldable but I know in the Facebook group for Ileostomates, there’s others that also have experimented and found it to go either way with other appliances.
We really do need to find what works for us & that’s everything from products, our skin, warm water vs cold, wear time needs + so I hope you keep us posted on what you find out for you!
Just found your channel. I;ve had may ostomy since 88 and 89 and did not rinse because it seemed too messy and bothersome but with your suggestions I think I will try now. Thanks I have a convex stoma. Also I would imagine you also get more wear time because your stoma extends furthur out, or at least it helps. Mine is a lot smaller and if I eat raw vegetables sometimes it can pull in almost flush to my skin so I try and drink a lot of water when I do this.
Thanks for sharing! I have heard that convex can be more challenging for getting and keeping a good seal. Even with a protruding stoma, tho, I know that the thinner my output is, the more likely I am to leak so I do try and eat more fiber now than ever. It’s such a delicate balance.
If you decide to try, I hope you let us know how rinsing goes for you! 🥰
Thank you Karah. Really good advice for rinsing your pouch. I tried that but standing up at my sink. However i found that it wasn't good to empty the pouch into the sink. I will try your method next time. Thanks again
I hope it works better for you Marlene! I have person recommended the sink or bowl to anyone who couldn’t stand, but is able to sit in a chair. It really needs to be at a height that works too though. Let us know if this does work any better or you find something else!
@@TheKarahLife I've tried it and it works good in the sitting position. Thanks again
Yay! That’s great Marlene! 🎉
Just wanted to say Thank you.... I've bin rinsing my bags ever since leaving hospital 4 years ago..💫🧡
You’re very welcome Simon! That’s great!! Thank you for sharing that!
I rinse mine every time I need to empty I last 7 days . But I never thought about setting backwards on the toilet . That saves splashing and having to clean up
Seven days is great! I can usually sit backwards on the toilet if it’s an oblong toilet, but not some of the older ones - which I have had in an older house that are round. I used a plastic bowl in the sink and then discarded contents down the toilet. I had to do that when I was limited to even sitting the “normal” way (was wearing a full leg cast). I was doing good to empty my bladder!! 🤷🏻♀️
I do still have some splash back, but sometimes what mitigates that is placing toilet paper in the toilet before I empty. it can soften the impact, so to speak 😉.
Thanks so much for sharing!!
I do similar, but stand or sit in front of the toilet w/the toilet seat up, no wiping needed. Then just a quick dry on the opening of my pouch with 2 pieces of toilet paper before closing it.
Easy peasy!! Thanks for sharing here, Pam!! 🙂
I have a urostomy pouch and flange. I find I have to change it every other day because of the odor buildup.
Thank you for sharing here, Mike!
You bring up a great point regarding odor. Whether it’s GI or not. I notice certain foods are stronger “on their way out” than others. Is that the case for you? Coffee is one. Strong urinary odor.
I also noticed certain foods can literally turn not only my output, a certain color, but my urine as well. Beets, primarily = very red tinted. It was unexpected and quite alarming until I looked up some folks dont process beets as well as others; pigment wise. That wasn’t the case when I had a colon so I’m thinking it’s the inability to absorb some nutrients without a colon.
very, very helpful. Thank you.
Glad to hear it, Carolyn!! You’re very welcome!!
It's cool that you make these videos. I've only recently got my pouch and been trying to get into a maintenance routine. I am doing the same as you and it works fine. The rinsing result also depends on how sticky the stool is. Several more rinses may be needed. Diet may have to be tweeked a little to improve stool consistency. I want to see how many days I can go without a pouch change. Thank you again!
You’re welcome Jan! Thanks for stopping by and commenting!! It is amazing to see how many people really do this practice, so I’m always encouraged to continue hearing how it works for other folks!!
For most people, definitely increasing fiber content slowly can give a good indication as to what consistency would be like.
Sometimes that means it all punches up together at the bottom of the pouch and it’s super easy to rinse and then other times, it’s super sticky and it takes a lot more effort to swish around my stoma to remove the “pancaking”!
Early on I definitely made some missteps but I wouldn’t have known had I not so that’s OK!! Six years (today, 11/8) and I’m still experimenting!!
I will always say IF I can safely add more wear time then I do. BUT if I start to feel, see, (or smell) anything out of place, I do not want skin issues so I change it. Skin prep spray / wipes for me is a wonderful thing but that wears off after a while too - for everyone it would be different.
“if it itches make, the switches”!!
Ultimately, protecting our peristomal skin care is crucial to longevity and health 🙂.
Great video. I am going to try this when I get home. I can see the output collecting around my stoma and this would definitely help.
Do you have any tips to reduce the puffiness of the bag?
TY 💜 Inside the bag, like gas? That’s the only place it can go until you let the air out. (Burping).
It just may be your body getting used to the newness. Or the gas used to pump up your stomach with air so they can operate. Was your surgery laparoscopic? Open doesn’t cause as much gas.
Down the road, you’ll find that some foods can cause more gas than others. Definitely talk to the doc about what you can eat now but the UOAA recommendation is low fiber, low residue the first 4-6 weeks. High carbs, yuck, for weight gain but in the beginning, it’s actually better because it’s easy on you 🙂.
UOAA reference guide for eating:
www.ostomy.org/diet-nutrition/
About 4:22 I show how I carefully, partially, unsnap the top and open the bottom end of my pouch. This helps let air out.
th-cam.com/video/6D2RjYHxZ7c/w-d-xo.html
If you have a one piece, you’ll only be able to do this with the bottom end but it works - as long as you keep the bottom end facing upwards so nothing but air comes out. 🙂
@@TheKarahLife my surgery was laparoscopic. I am still getting the gas pains in my shoulder so I know it’s still working out.
Yessssss girl! That’s it! My endometrial procedures were sooooo uncomfortable that way. Can they give you anything like Gas-ex? Walking will help move it along too.
Been rinsing mine out since the beginning. It also cuts down on the smell as well.mi also use altoids in my bag with every emptying.
@@janicesteele1248 I have heard of folks using mints! Good to know the Altoids have more than one purpose! Inexpensive too 😎 Thanks for sharing, Janice!
What is the lotion you used in the video and what is it for and how do I use it and buy it thank?
Hey there! It’s “Brava Lubricant Deodorant”, made by Coloplast. You may be able to get some samples from them directly or if you have a regular supplier. I just love the scent - it’s not perfumey & can really help control “in pouch” odors.
In the USA: products.coloplast.us/coloplast/ostomy-care/brava/brava-lubricating-deodorant/
I use water for cleaning too
Awesome!! Thanks for sharing!!
Wow! Game changer! 🙏🏽
For me too, Nizan!! Glad to help!!
@@TheKarahLife takes a small about of getting used to, but small fry compared to The other changes to our right? 😂
Agree!! 😄
Not had my operation yet but I absolutely love this idea of rinsing out the bag.. rinsing liquid output.. (poo) from around the stoma knowing it clean sound good.. should the water be sterilised first.. I thought it should the but don't know x
Hi Cookies! Thanks for commenting! And that’s a great question!
I only used bottled water when I first started this (safe to drink should be good, I thought).
I’m not a medical professional so I can’t comment on that from a nurse or other practitioner’s medical expertise, but I can say that it’s been told to me (and others) that “naked shower” is perfectly fine (no appliance on during a shower) so if that water can run across my stoma and be OK, why not using it to rinse or even using warm drinking water from a bottle? I was good with that reasoning and I’ve never had a problem. I do know of several people in my online group that do the same.
I’d say unless there is a medical professional telling you not to, though I would love to know why, and you’re using clean water, I don’t see why it needs to actually be sanitized water but of that helps you feel more comfortable about doing so, you could boil it and keep that in a large water bottle specifically saved for rinsing.
Clean enough to drink, and same tap my shower is (my tap is safe for drinking too) that’s the level I am good with 🙂💜
Hi. Did i hear right that you can go 15 days? I can barely get mine to last more than 2 days. And also i was told by my ostomy nurse to always change it every 4th day because of bacteria. If i could keep mine from leaking i would love for it to last longer without a change
Thank you for the videos..so helpful ❤
Hi Alicia! How long have you had your ostomy and is it a colostomy or an ileostomy?
When I was in the hospital, it was recommended that I try & go 2 to 3 days and then change but not to be rigid (I can be) about it . The great part about changing often was the more I changed it, the less intimidated I felt. I was learning how to do what I needed to do for what look like the rest of my life, so I was OK with the learning process even though it could get frustrating. Practice, practice, practice.
When I got to around 90 days, I wanted to try a two-piece because I had only been doing the one. At my Ostomy Group, a representative came in from ConvaTec and had demonstrated their moldable wafer line. I was intrigued - not needing to cut wafers anymore? And the fact that if I could get a good seal, it would continue to hug my stoma, as is part of the unique feature that line? Maybe I’d get more time between changes? (My thoughts)
The leaking I was having from using the former set up, begin to become less and less frequent, after trying the moldables.
One day, I went on a trip, and I was so engrossed in everything that was going on. I had totally forgotten that I hadn’t changed my wafer in several days. I felt like I “ought to” - just because but - there was no leak. No irritation. There was no evidence of one about to start either.
After that day, I just kept trying to see how long I could go before I either had an itch or saw a leak about to start. This product and getting a really good seal has allowed me to go even further than two weeks but my goal is 7 to 10 days. That does get lengthen out if I happen to be sick or honestly just forget.
I’ve never heard anything about the bacteria, but I’m not a nurse either. That may be where the fact that I love to rinse out anything that’s in my pouch throughout the day, so stool does not sit in there for very long comes in to play 🤷🏻♀️. I’m not sure from a medical standpoint, though.
But yes, it is possible to get more safe wear time but I believe it takes getting a really good seal, (warm the wafer - big plus!) taking the time to do that, monitoring, and when taking a shower, drying the wafer immediately and it will reseal (at least on my product it does). I will also utilize the brava strips for extra hold - especially If I know I’m going to be in the water, swimming, etc..
I don’t believe the manufacturers will ever promote the amount of time that I get and that’s OK - I’m merely stating that it’s possible to go longer than a couple of days with the right product & the right administration of it - safely (skin stays healthy). And in this day and age, if I can save some money, not having to purchase as many units I’m going to do that.
I’m so glad these videos are helpful for you! Definitely let me know if you have any questions. If I don’t have the answers, I will point you in the direction of folks that hopefully do. ♥️
Thank you for this. I am about to have a hysterectomy soon for severe adenomyosis and a bowel reconstruction due to severe endometriosis that is invading my bowel. They told me that I will likely wake up with a stoma. I am preparing myself and arming myself with knowledge. Thanks to your video I can go into this with more confidence. I do have a question, how bad does it smell and do you have tips for either reducing the smell or how to learn to cope with it? I have a pretty bad gag reflex and I recently almost threw up trying to get a poo sample for my doctor. 😂
Oh Sheree - that endo is brutal!! I suffered for years and they saw endometriomas were on my colon on CT but thankfully it was just seeing the backside and they were attached to my uterus. My second ever (until 4 years later) colonoscopy was done just to make sure there was no intestinal puncture. I sooooo feel for you!!!
My supracervical hysterectomy (2011) was actually six years before my total colectomy (2017) but the good part about all that was, no more endo (ever) & no more pain for the next few years (IBD symptoms started up again in 2014).
Good for you in researching before your surgery!!
I do have an “odor control” ideas video. I’m not as squeamish as I thought I’d be - I consider that a gift for sure - but I do have some stinky stuff when I rinse - especially a few hours after tuna…cheeses can be pretty bold too for me.
If you find yourself really challenged with the odor, I would definitely recommend staying in stock with odor control tabs or liquid, using 24/7. But, you may find you only need it for certain foods. Everyone really is different on the “poop process”.
You can also add the odor control to your pouch after you eat. It can take 4-6 hours (on average) for the food to make its way to my pouch. A room deodorizer is a good idea too. I cover all of that in that video 🙂.
I also have a video on what to expect when you get home / what to bring to the hospital etc too. I tried to think of sharing about the things I’ve experienced on this journey too.
Thanks for the question & kind comments! I hope you’ll keep us posted too. Feel free to reach out anytime! We have so many great folks in this community who have lots of experiences to share here! 💜🙏🏻
Hospital & post op tips:
th-cam.com/video/ZFDNa6CVucs/w-d-xo.htmlsi=5czRcUSKsyPpHt0m
th-cam.com/video/Wi9XJzh_zi8/w-d-xo.htmlsi=_jPrLJv5jN7ZZYJD
Odor control:
th-cam.com/video/6D2RjYHxZ7c/w-d-xo.htmlsi=sq2VXvDfMbPLxrkE
@@TheKarahLife I am sorry that you suffered from endo for years. :( I am so glad you had relief for a few years at least.
Is there a relationship at all with endo and IBD? I have unrelated cancer and during the PET scan they found that my ileocaecal valve lit up and enlarged lymph nodes surrounding it. This happens to be exactly where my aunt has Crohns. I also have appendicitis like pain like my aunt did before they opened her up to remove her appendix and found Crohns. They’re telling me I don’t have Crohns and that its the endometriosis causing all my pain, blood in stool, bowel obstructions etc.
I will check out your videos! I am not usually a squeamish person around pretty much anything else, just poo. Poo is my thing that I cannot deal with. Not even my animals poop, and definitely not my own haha. Thank you so much for these tips! I am sad that cheese makes it worse, cheese is life!!
I really appreciate your kind words, advice and reassurance. Thank you. ❤
@iSheree oh my goodness that’s quite a journey too! I’m so sorry you’re having to deal with multiple concerns!! Hopefully this surgery will answer questions and get you on the healing path!! ♥️
They do look at family with gynecology & GI conditions…have you had gene testing done? I’ve only had blood tests for MTHFR (it came back two copies) but no Lynch tests yet. I need to get that done. It’s more specific to family hx, GYN & GI.
They originally thought mine was Crohn’s first - no family hx tho (outside of colorectal cancer - I unfortunately lost my dad to it and his sister - my aunt had it too 🧐). They said they thought that because of how malnourished & underweight I was - and how depleted (and wacky) my electrolytes were but the biopsy came back as ulcerative colitis after the total colectomy.
I still have esophagus and stomach / duodenum issues but it’s still not been diagnosed as CD 🤷🏻♀️. My GI doc does check w/the endoscopy every few years tho and checks me for increased inflammation / cellular changes in my rectal sigmoidoscopies which are every 2 years since UC carries that CRC risk.
I’ve seen other gals in FB groups ask the same question tho, the “any relationship between endo & IBD?”. I wouldn’t be surprised if the NIH has studies out there. I’ve not looked but it is asked by others so…
I wish I had any suggestions for the 💩😭!! Outside of a mask or not breathing through your nose (?) have you asked the doctor for some advice? Maybe spray the area first with something like Odoban? Instead of emptying first, spray first? Hang in there!! Maybe some of the other folks here can chime in!!
I’ll go ahead and post for some suggestions in the community tab and see if people will respond with some helpful tips!! 🙂🥰
@@TheKarahLife Thank you, I really hope so too! ❤
I actually saw a genetic oncologist about my family history of cancer and they felt no need to run any tests on my DNA. I had my referral to normal genetics rejected. :( In Australia we can't just ask for certain tests and it is so frustrating!
I am sorry you lost your dad and aunt to cancer, it is a cruel disease. I hope you don't get cancer.
I am obese due to psych meds, lack of thyroid gland and hormonal/endocrine problems (including insanely high cortisol and inflammatory markers). I can't lose the weight either, I am bleeding all the time so no swimming (which is one of the reasons why I need this hysterectomy so bad) and thats the only exercise I can do due to spina bifida and other health problems... So maybe thats why they wont take me seriously. 😢
@@iSheree oh my goodness yes it can be soooooo frustrating!!!🤦🏻♀️!! I’m so sorry to hear that happens there too 😭!!
I haven’t spoken much about this here yet but I’m in testing for adrenal issues again (first time as a teen) as well. Initial I went for memory issues & weight - I was always slender but after my total colectomy and somehow NOT my hysterectomy (earlier) I started putting on weight 🤷🏻♀️ and it’s a beast to lose. I’m completely stuck and they found a RCC or Rathke’s Clef Cyst. Seems it can mess with the pituitary gland function (it’s wedged & it can mess with weight) in but most of my bloodwork is normal (including cortisol) and the cyst isn’t large enough for them to do anything. It is so frustrating when you have multiple concerns - I hear you!! Have they scanned your pituitary gland? It regulates so much in the body…and the inflammatory markers - RF? ANA? But no IBD - but IBD is autoimmune…have they suggested another?
Man o man! So let’s get that surgery done soon so you can get to swimming eh?!?!? That’s a wonderful exercise!! Good for the body & soul too!! Oh - and I did a very quick video about swimming at the beach but essentially, these ostomy appliances are designed to get wet from showers & swimming too so if the subject comes up, definitely don’t let that stop you!! I took way too long to go in the water after my surgery but it doesn’t phase me now 😎. You can just towel dry off the wafer and pouch and be sure to bring spares in case you need to change it. There’s Brava strips for extra protection too (yep - I have more videos on those LOL) 🙂🥰.
I do this also! I have to be careful though as it can sometimes encourage leaks, but like you I prefer the fresh feeling. Also, I thought I was the only one that sat on toilets like riding a horse, lol
Haha!! I can’t do it on any toilet that’s round Freezy! and I don’t know where you live but there is some old houses that we’ve lived in that do not have oblong toilet so that’s not really possible for me 😂! I can now, but it’s because our current living situation has newer oblong toilets!
Haha!! I can’t do it on any toilet that’s round Freezy! and I don’t know where you live but there is some old houses that we’ve lived in that do not have oblong toilet so that’s not really possible for me 😂! I can now, but it’s because our current living situation has newer oblong toilets!
I’m quite new to this. Tomorrow will be five weeks post surgery. I was told to change it every day but I am now wondering about the possibility of also stretching it out a few days 🙂
Hi there! Thanks for your comment!
Five weeks! If you’re changing daily, you have probably have had some good practice! 🙂
My stoma nurse and I talked about scheduling changes while I was still in the hospital (I had complications that kept me in another 8 days), but I never really stuck to it the way I “planned”; a leak would eventually happen but for the most part, it was 2-3 changes a week back then. Different appliance too. I wanted to try something new after my stoma size had “settled”, which they told me takes about 90 days (give or take). I found out about the moldable wafers and two pc appliances at an ostomy support meeting. I was using a one pc - same as I left the hospital with but my nurse had contacted the top three manufacturers here in the USA, and they sent me lots of samples and “welcome” packets. If you’re in the USA or I think even UK, that is a cool deal (it was free for me).
And it was actually after I’d switched to my current set up, when I took a road trip to a neighboring state that I realized I’d forgotten to change my appliance!
It was then I knew I didn’t have to do it the same way I’d been. 🤯😁
I know of folks who just feel comfortable changing daily and others who do get more time - so really - it’s totally up to you (and your doctor of course). 🙂
Definitely let us know if you do decide to try something different (extending wear time safely and/or trying new appliances) and how it goes! We all learn from each other 💜.
I never thought of rinsing my bag that way. I take my bag off and rinse using a bidet. It is great at home but not when I travel.
Thanks for sharing that, Patsy! A bottle of water is all it takes when traveling! Let me & the community know if you decide to try this way too!
P.s. my guest bath has a bidet we installed for my husband and there’s a video on my channel for that. He LOVES it but it’s only cold water so I don’t use it AND it sprays from the underside of the seat but if it had a hook up to warm water and a hose, then I would 🙂.
Am on chemo my self always flush the bag
Thank you for sharing! (((💜)))
I have a big hernia already. I just had my surgery 12/25/23 ? Terrified and still learning
Oh my goodness I’m so sorry! Are they planning on doing a repair? Can I tell you - I understand that fear - I’d say everybody here probably does, and the more we change our appliance and learn about how our body adapts, the simpler our routine becomes - and fear does subside. **HUGS** 🙏🏻🥰