My special needs 25 year old son had a traumatic surgery 2 weeks ago removing his large intestine. He has not healed well. He just had another surgery today and they ended up needing to do a stoma. We are so emotional. I just watched your youtube and felt I must tell you how thankful I am to see a beautiful girl both inside and out explaining how you throw your bags away. The tears are flowing with relief because of you. You are have helped more than you can know. Thank you for being such a brave amazing person sharing your personal story. Thank you!!!!!! Mb
Hey mary, hope your son is doing well I was 21 when I had my colon removed back in 2016 I was diagnosed with indeterminate colitis but my doctors leaned more toward UC so I just last week was discharge from hospital from just having my reversal it's been 4 years with no flare ups so I'm assuming I must have UC and no CD, it is one hell of a ride I'm in bed now recovering if your son wants to talk to someone his age just hit me up it's good to open up and talk to someone especially someone his age as mentally it is very draining as well as physically ,give him my wishes, giving you and the family love, take care.
I’m so sorry , my grandson has one and all I can say is time heals. The best thing we found was a pouch holder that fastens around the waste and supports the bag. He will be fine he has now joined these amazing young people that handle this beautifully.
I’m training to be a general surgeon, so I’m regularly involved with caring for people who have just recently gotten their ostomy. I love your videos because they give such a good insight into what daily life with an ostomy bag is really like and that’s what most of my patients’ questions are about.
the fact that you're in med school and seeking out these sources of information is really uplifting. first, its just amazing that these platforms and technologies exist to let people share their lives with the world. second, it's so smart of you to utilize this as a learning tool!! i can't imagine how valuable this style of information is, compared to the years of textbooks and short patient interactions i imagine are involved in the training process. hats off to you, i wish you the best in your studies!!
I have an ostomy and have only had less than I can count on my hand the number of accidents once I learned how to empty the bag. When you add a little water into the bag, everything comes out of the bag easier. Being able to clean by bag, I have been able to keep the same bag on for a couple of days. I will say that I have been in the hospital three different times and the nurses don't know how to clean them either. I have had to show them the way that I clean them. When I did it their way, it just made a mess and not easy to clean up. I did enjoy listening to your video and am glad that there is something out there to help new patients.
Thanks so much for sharing this video. It's been such a big help for me. Life saving colon cancer surgery a few months ago and ended up with a colostomy. The only thing that bothered me was emptying the bag for all the reasons, you mention; messy, hard to control, etc. This has made living with my bag so much easier!!! So simple to do. it's really brilliant and haven't seen or heard it anywhere else.
Thank you for all your vids. I use the same Hollister 9” nondrainable bags as you for all the same reasons. I’m 73 now and I just think I’ve outgrown touching and playing with my own “stuff” if you know what I mean. Such a relief to not have to smell. Medicare allows me one box of 60 per month which is plenty. I use hand cut pieces of extra thin Duoderm to reinforce the flange because the stoma has some “fatty herniation” around the stoma. To protect the skin in the area I use Cavilon spray instead of the little Cavilon wipes. Slightly more expensive if you aren’t on Medicare but well worth it. I can go nearly two weeks without changing the flange of the colostomy without affecting skin integrity, though normally I replace the flange weekly. Stay safe.
I just got mine this month on the first. I'm also seventy five so old timer to old timer how long did it take to adjust to using these bags? I've been going through all kinds of troubles with leaking at the barrier. I mean you think you have a good seal and ten minutes later it blown out on one of the sides. That and waking up at four in the morning with an over full condition ( yeah nice way to start the day). This whole situation seems to be compounded by having a stoma with two smoking barrels , not just one. If you have some advice that might be helpful bring it on I'm open.
@@bradargyle5524 thanks.. I am a 73 year old Ostamate, using HOLLISTER DRAIN: how are you coming? I had a great Team of,Ostomy Training at U OF Chicago some five years ago, *& really no problems ( a small,Bleeder occasional), etc. I,am,checking with MY new HOSPITAL Team soon: have herniated, some , we should always check out our Procedures……etc
Keith, how are you coming,? I am five years post colectomy, use HOLLISTER Drainable/ ADAPT LIQUID, etc. I was interested in those FLANGE/ disposable , as I have never used .. I do have good luck withHollister Drainable, other than DOING/ Larger volume occasionally…I am age 73 , semiRetired Pharmacist ( Oncology/ Then retail).. Interestingly, just our of pharmacy School I. 1969-70 my first DRUGSTORE was close to GI SURGERY HOSPITAL We had a few COLECTOMY PATIENTS that got a lot of Squibb/Supplies for & the CLNVAGEC/Squibb REPRESENTATIVES helped stock for GI/ Colectomy Patients(** a few struggled, *& lots,of medications,** as TREATEMNTS HAVE IMPROVED IN 50 years)*** Also,, my Team at U OF CHICAGO ran thru lots , of training after Surgery, *& I continue to use **EDGEPARK **for Supplier of HOLLISTER OSTOMY.. Not used much CAVILON, & some miscellaneous helpers. Though we just changed to BLUE CROSS Montana for my MEDICARE SUPPLEMENT INSURANCE THIS YEAR (( AARP/United Health way To expensive),& seem to be having trouble with DEDUCTIBLE, *& EDGEPARK , not getting Paid or something. I am DENNIS Mock, @……..etc. Actually, calling to have my new Hospital Team check my Stoma routine,and I am herniating some also… My Physician suggested I gained 15 LB this past year…etc. Drop me a line,
I used the drainable bags in the hospital. Once I got home my Ostomy nurse told me about the closed end pouches; & I've been using them ever since. Sooooo much more sanitary and quick
Thank you so much for your transparency and knowledge. I began watching your videos prior to my husbands ostomy surgery. You really helped me to prepare for it. I am my husbands caregiver, he is a paraplegic of over 40 years. I love your positive attitude!!
thank you for your feedback i have had an ostomy now for 10 years now. i use a one piece ostomy used to use a 2 piece but had issuses with them. the one piece is good for me but everyone has to be comfortable with yourself. glad i came to this channel thank you for your experience and help.
Well my best luck originally was with the single piece bags but after a few months of experimentation I'm having much better results with the Hollister two piece bags and the support strap that holds everything firm against my abdomin. Now don't laugh! Rather than using The adapt paste To fill in the skin creases to help seal the shield I tried denture adhesive and found that because of its higher tac it works better than the regular paste. And now for the really crazy. Super glue, yep, super glue. By putting a continuous bead around the outside edge of the base piece I found it really stabilized the shield and gave me a second line of defense against leakage while getting four days of use out the base instead of 10 to 20 hours. Yeah that's right four times the performance . I wouldn't be afraid of the glue while it sticks harder then the regular adhesive it's not a big problem to peal off. Sounds a little crazy but it's worked well for me and given back my freedom to venture out in the world with alot more confidence. Yeah that's me the crazy old guy.
When I had my temporary ileostomy, I was taught to sit in a chair in front of the toilet to empty my bag. (I had a folding chair in the bathroom) Also, to reduce the possibility of splash back, I was taught to put toilet paper in the toilet prior to emptying the bag. Hope these tips help someone.
Thick thighs here. 42 male. I do the tp, but I stand like I’m peeing and get low as possible. That’s my style. Bc there’s no way I’m going to dump between my legs. It would be a mess let’s just say. Love you guys.
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Thank you! I’m taking care of my mother-in-law. She has ostomy. I’m very thankful because I updated my knowledges with you, and I also learned a lot! Blessings🙏!
I'm a nurse and I feel your pain with cleaning the end /velcro on the bag! No matter how hard I tried, it was a bit messy. I wish we could use one pieces in my hospital. Thanks for sharing your experiences.
I understand as a 42 yr old male. It has to be hard to help or totally clean someone else’s bag. My wife did it for a week until I understood that it’s mine. It’s hard mentally.
As a CNA I often had to change bags...then we were told to reuse. I simply couldn’t do it..seemed disrespectful to the patients as well.. I told the R.N that I would pay for the bags myself!
Love your TH-cam site and your refreshing, positive spirit! Just had colostomy surgery and getting used to everything "stoma", have learned so much from your videos. Thank you, thank you, thank you.
I knew a girl who had an ostomy bag. I always wondered how people did all of this. Thank you so much for these videos. I don’t have this but I know for sure you’re helping people all over. So yeah, thank you so much.
Nurse taught me to wrap toilet paper around my finger to clean inside the end. I do that till is clean. I have an illeostomy. I use converter 2 piece system. Love your videos!
Thanks for sharing this very valuable ostomy tip! I don't have an ostomy but worked as an RN (as both a hospital and a Home Health nurse), for 25 years and never heard of nor ever saw a nondrainable pouch in all that time. As such, you taught me some new things, today! :) This option is a wonderful solution, as there tend to be more leakage issues from the bottom of a pouch rather than around the seal. The reason why people look at you as though you're bizarre, when talking about "nondrainable pouches", has to do with the fact most people don't know that there are one piece and two piece pouches, let alone a range of drainage options. As most of the people I worked with who had ostomies (including urostomies), were elderly people, they tend to have trouble both with vision issues (accurately seeing all parts of their stoma and pouch/seals while on the body) , along with problems manipulating all of the ostomy supplies, due to arthritis issues. A nondrainable pouch would be a huge relief for many elderly or disabled individuals who are living with an ostomy. Generally, we teach those who are dealing with a new ostomy to either sit on a chair at the toilet, to drain the pouch and/or to use a plastic bag as a collection device for the pouch contents. This saves one's back and allows one to take their time with the complex procedure. I've never heard of Velcro being used in place of a pouch clip before. Without even trying it, I'm certain there isn't anyone who can keep that kind of appliance sanitary, let alone dry, especially on an ileostomy or urostomy! You've learned so much in the very hardest of ways. I'm sorry you've had to go through so much misery. I admire your willingness to teach others who are novices and walking in your shoes all of the "inside scoop tips" that RNs either don't have time to share with novice ostomy patients or don't know about (thanks to the enormous and ever-changing new types of medical supplies, equipment, surgeries, medications, diagnostic imaging tests, lab tests, insurance requirements, etc.). No doubt, you are improving the quality of life for so many confused and anxious individuals. Thanks for being a great role model and human being! :)
My husband had a bag for about a year and we hated trying to empty it. Yes his skin was very sore if we changed the whole thing because of the glue. We loved just changing the bag! The Hollister bag that clicks on was a game changer! He almost didn't want to go through the surgery to get put back together. We also lit a candle everytime we changed it. Lol. This is very informative!
I have had IBS since I was young. Always causes problems. I will think of what you go through and try not to complain! Feel better and God Bless you! You are a beautiful woman, stay strong!
When I was around 12, I had a married friend in Brooklyn who had a daughter with a "bag" and I was very fascinated. The mom was secretive however about the whole thing. Even though my husband is a physician, this was not his specialty so I am glad for the opportunity to finally understand this whole process and the openness. I am now 75!
Thanks for sharing and teaching.My sister recently had a colostomy and I want to become more knowledgeable to help her and be able to understand her challenges.
I have a colostomy, I wear a definable pouch, but I don't change it. I was doing it for quite a long time, but I've gotten so weary of emptying, cleaning, and then reusing the bags, so now , even though it's a bit more expensive per month, I order an extra box of the bags (there are 10 bags per box). I'm much happier, and I just change my bag when it's full (once or twice a day), and I'm good to go. I am so glad I've discovered your videos, because even though I have had my colostomy for about seven years now, it is still so nice to know there are lots of other people out there dealing with living with an ostomy or colostomy,. Thank you for doing these videos, you present the issues in such a wonderful, caring, fun way. I'm looking forward to seeing more of your videos. 😊
I’m watching this second video because I thought you were so sweet and confident in the first video I accidentally watched. But I’m kind of lost and feel like I need to watch all of your videos to understand what your talking about here -or have Crohn’s disease to understand. But I love your outlook on your illness - keep your chin up girl! Good luck! 🥰🥰
This video put me at ease a bit, thank you. I’m 2 months post op and go back to work tomorrow. I’ve been using the drainable Hollister bags as well, and a nurse of mine recommended the disposables for me.
Thank you so much for taking the time to create your videos!! Your advice is very helpful and minimizes frustrations. I am supporting my wife who recently had the surgery. My wife is very particular with her healthcare and cleanliness. The skin irration has been the most difficult part, and your videos have greatly helped!! Thank you, thank you, thank you!!!
Have you ever used pouch liners? I use Attiva pouch liners and LOVE LOVE LOVE them!!! They allow me to re-use the same pouches over and over again (and save me TONS of money). Just line your pouch with the liner. When you need to change pouches, you simply pull out the liner, drop it in the toilet, flush it away, and you're left with a clean pouch! I especially love my liners when I'm out, because essentially I have TWO pouches - the lined pouch which is inside the clean pouch I'm wearing. So when I need to change pouches, I dump the liner into the toilet and snap the same pouch (now unlined) on and away I go!!! I don't have to carry several pouches because I always have TWO on me!!! Try the Attiva pouch liners (through The Parthenon Company in Utah) and you'll be hooked on them! They will save you a TON of money. No, insurance does not cover them, but they're extremely reasonably priced. I can buy two boxes of new pouches (30 per box) for the cost of one box (100 liners per box) of the Attiva liners. The savings are HUGE!!! Best wishes from me and Rosebud (my colostomy).
I don't understand how you can pull out a liner and replace it. Is this something that can be done with two-piece pouches? Also, I would never do this, as plastic should never be flushed.
You are a very brave woman and when I got mine the nurse started me on the drainage ones for the drs to see the output and such but within one month she changed me to the closed pouch and I have used them for 11 years now. I use Hollister closed small pouches with karaya paste around the skin of my stoma then a skin barrier, then a wafer with regular paste and finally my pouch. Sounds like a lot but it's not and it's a skin color. Got in in 2007 and have not changed. Karaya paste may help your skin though, give it a shot. It's karaya paste item number 7910....take care and I applaud you on your bravery to put your stoma on TH-cam. :)
The Salts ones are the best. I'm a wheelchair user so have to try and empty it while sitting on the toilet. I've stopped emptying most of the time now too.
I love salts too! I’m six months post op so was using the drainable one pieces but I never empty mine (it’s a colostomy I’m changing twice a day usually) so thinking about changing to a one or two piece closed bag just ordered loads of samples so will see what I like!
I found that emptying my colostomy bag “ backwards “ into the toilet helps me. Right now, I have the one- piece and it’s easier than aiming at a small spot. I haven’t had mine so long (2-3 weeks) so I am still “ training “ !😂😂 Thank you for your helpful videos .❤️
What is "backwards"? I stand up over the toilet. Is that how you do it? It never occurred to me to sit. I squat down to get closer. But this woman's video is making a lot of sense to me!
I did this same thing with my first ostomy & everyone thought I was crazy! M output was so thick and moved through me really slow so I had a really hard time getting in out of the pouch. I would change it in the morning, afternoon and at night. Glad someone else out there does the same thing! When I got switched to my loop ileostomy my liquid was fast and watery so the drainables worked a lot better.
Loop ileostomy here, and I can't even imagine non-drainables. I've had times where my bag goes from empty to full in about 30 seconds. When that happens in public, PANIC.
Thanks for making this video! I just got my ileostomy less than 2 weeks ago, and it's always neat to see the unique ways other people use various products and tailor their ostomies to their own needs. My ileostomy is oddly quite low output, so this may be an option for me to consider down the road.
I was taught to rinse mine thoroughly with water, so I carry a water bottle with me. I have the Convatec clear "velcro" closable types so I can clearly monitor what is happening. It is so much easier to tip the bag up, add water and aim it all at the toilet. Then I am completely clean and good to go on!
I was told by an ostomy nurse that you should not use water to rinse the bag because it can break the adhesive seal. But if it works for you and you have a good deal, keep at it! Plus, psychogically, it must make you feel clean and fresher! Go for it!
Marcia Kopp I use water to rinse mine, but I do Not allow it to reach the area where the adhesive is. After I empty the bag contents is when I gently rinse, put the closure clip on , wipe the end with tissue & go on my way.
Attempting to empty the bag directly into the toilet bowl is quite a challenge for me, and likely to be a bit messy. I have discovered this method, adapted from how I was trained to empty it while in hospital. I use a jug, and to get the correct height for me (while sitting on the toilet), I place the jug on top of an upturned bucket. Being quite old - 73 years - and have the bag for just 4 months, I need a clean method, one that does not challenge an older body too much, bending down, etc. This works perfectly for me, and it is easy to disinfect the jug after use. I store it in the bathroom, discreetly out of sight, ensuring no one mistakingly uses it.
I get really excited when I see other people talk about these things! I talk about them on my channel too. I've just now gotten brave enough to discuss my ostomy openly, which makes me a bit sad. I'm 36 & have had mine for 13 years.
I changed to the bags and love them. I didn’t like The drainable bags because I just felt like it wasn’t clean after I drained it because you can’t get all up in the bag. I loved watching this video because I completely agree with what you’re saying with the one piece bags non-drainable.
This was great to hear. I'm about to undergo thumb/hand surgery and will be casted and one-handed for several weeks. I couldn't fathom how I'd clean the end of my bag after emptying. I'm going to go for these non-drainables, and hopefully will be able to pop them off and on easier with one hand than emptying/cleaning with one hand. Thanks so much for the info, love it.
I don't have IBD but my boyfriend does. And your videos have helped me so much to understand his condition, especially since that means I can support him better. Keep it up, you're so strong and you're doing so much great work!
Your channel was suggested and I’m so glad to find it! Thank you for your candor and transparency with this topic. It is fascinating. I feel embarrassed for being such a lazy ass dolt with no health issues but not a very productive person. You are so splendid and cheerful. I am going to try harder in life a s do better in honor of you. ❤️🙌
If you're too lazy you might end up with health issues. So be careful! Do it in honor of yourself as well as this lovely woman Maggie. I had no health issues, but now I have a colostomy. It's temporary, supposedly, but I'm still going to have a big scar all over my stomach. And that was just a side issue to the heart surgery that I suddenly needed. At the very least, don't be too lazy to get checkups regularly!
I had colon cancer removed July 29th 2020 and now I have an ileostomy... I hate having to clean the drainable bags especially when I get faeces on my hands... thanks for sharing. I have to try this!
Saddest thing I've seen was a homeless guy, cutting his bag off, and a transit cop, telling him the local county hospital could help him get a replacement...thank you for talking about this. Being paralyzed from the neck down, being blind, and this which you're dealing with are my worst fears in life.
I use a smaller size Hollister drainable bag. My technique for cleaning the end is to fold up 2-4 squares of toilet paper into little "wands"--just fold in half, turn it, and repeat til I have a little thick rectangle. I can insert these into the end of the pouch and clean it thoroughly, then wipe the outside off with another square of toilet paper. As needed, I also use baby wipes to clean the outside of the pouch end and the clip. Everyone's different, but the amount of trash my ostomy generates is my least favorite thing about it already and I get so anxious imagining 7-10 bags per day in my trash can! Figured I'd share this tip in case it helped anyone who also prefers drainable pouches.
I am currently recovering from a partial colectomy,total hysterectomy and hernia repair. I was terrified my diverticular disease would leave me requiring a bag after my surgery. Thankfully it didn't,but for all you incredibly brave that have one,you deserve a medal! God bless.
Both the Coloplast Sensura Mia and Convatec bags have little Velcro circles that hold the velcro strip out of the way. Once it's out of the way then I don't get output on the velcro strip in the first place. As mentioned in another comment, I use a single layer of toilet paper on the the top of the toilet water which prevents splashing. I kneel in front of my toilet on top of a squatty potty to get close to the toilet, and just crouch down in the rare cases I have to drain in a public bathroom (my quads are pretty strong from yogo). I use disposable food service gloves to protect my hands which is more sanitary and makes hand cleaning faster. Finally, the velcro strip ends can be folded up inside the bag cover which make the bag smaller and hides the end. Thanks for your vids; hope this helps.
I love my two piece system... i do have a few drainable bags. Simply for colon scopes, my ostomy is the result of colon/rectal cancer. My rectum is sewn shut... gone! I found out about the two piece/ non drainable pouches from my at home care nurse.. She was an angel for me.
Hey Cynthia are we able to speak in private ? I’m about to go through a pan procoloctemy the colon and rectum and anus fully removed and I’m scared about the anus part at present I’ve had a illostomy for past year and it hasn’t helped at all. I’m still passing from rear and it hurts like insane I’m not supposed to be able to pass from the rear at all. What I’m getting at it I visit the bathroom 7-10 a hour and I straight like mad mad but so when they sew mine up and remove it it’s got me wondering how they heck I’ll manage to not to straight immediately I’ve got fear I’ll pop the stitches open. Any advice would be awesome I should say I have horrid Crohn’s disease I’ve already lost part of my small intestine and fitted with Stoma etc and now I’m the next coming months full pans proctocolectomy with me going the bathroom 7-10x a hour and straining every time how will I stop that so I can heal! Any help would be very useful indeed
Please tell me what the item #s are for the non drainable bags I called one place and they did not know what I was talking about and I have looked on line but drainable ones only show up. Do you know if these work for all Ileostomy's?
@@dawnswanson4203 Hollister new image closed mini pouch with filter 18393 this also comes in bigger sizes. You will need at least the wafer also item # 14603 and I put on the barrier 8800 also. Good luck. I have used them for over ten yrs and would never go back to the ones you have to empty. There is also an irrigation process instead but I have not gotten the courage to change or try it.
the most surprising is even people at the hospital nurses techs etc are not very well trained on these ostomy seals and bags like im new to this scene and am learning problay the hard way but i am very surprised of the extreme lack of knowledge on installs and even just emptying these devices. i dig ur vids thanks
I agree...my husbands ostomy nurse was fantastic and taught me exactly what to do...the regular nurses didn't seem to find any in supply and half- assed it so when I was at the hospital was when I would change it...gotta' learn sometime...he was like a watery faucet and septic...but I learned...not their fault it isn't something they spent a lot of time learning.
I live with an ostomy. Mine is due to a perforation from diverticulitis. I've had it almost 2 yrs now. And it's SUPPOSE to be temporary, but thank u Corona, something supposed to be temporary and has been healed and ready for reversal for almost a yr now, I'm having to still deal with. I've already had one revision done cause it wasn't made properly the first surgery and was healing itself up. Which it is again doing. Noon will check the ostomy itself. Noone in medical that is. Between me and my husband (I wouldn't still b here without. He married even after a short time together and the surgery happening while we were dating) we have made ways to make me comfortable with this. I still leak constantly and have to stay on watch. The cleaning and changing, now we have finally learned how to do it properly definitely goes much smoother and way less messier now. I had about 4 visits from so called Ostomy nurses, but honestly, they were clueless. And had me not leaving my house for fear of accidents. I do leave the house some now, if rarely, and for the same reasons. I suffer from depression and anxiety which this has only complicated. No real friends. I couldn't make myself go out the house and still struggle with company. I always feel like my house smells like shit. Disability keeps denying my claims, the ostomy is part of my health issues, along with heart issues and PTSD. I've been suicidal on a few occasions, thanks to support from my husband I have somehow survived till now. I know the upside of all this is I'm alive. But, I'm not. I haven't learned how to deal with this. I've gained 40 pounds sitting on my butt, but hard to get up and go when u get YOU GO and occasionally on yaself. I have suffer incontinence now. Worst than I have in my whole life. And I have NOONE to talk to about any of this that wld understand. I'm glad to see there is a life for someone out there that has this issue. And I'm happy for you that you found it. All I can do i pray one day, hopefully soon like I'm promised, I'll win the lottery and get my reversal. If it isn't to late for my body to be able to be reversed. I do appreciate you trying to help others with this. It's an amazing thing. But be honest!! Some of us out here are in hell with this thing. My apologies for all this negative. And it's usually not my nature, before March 2019, when I had my first heart attack, which was the beginning of 3 mths of the worst days of my life. 🤷. And the 29 day hospital stay that left me with this ostomy. And not to mention, seeing my mother the day I got home and being called she was found dead in her bed the very next morning. And I'll stop there. My story is enough to push anyone off the ledge. Bless you though. Keep doing what u do. You are helping others. Take it from me. Any help, if just somewhere to tell ya story, make a difference.
FYI - I emptied thru the ring which wound up being easier/cleaner than emptying a drainable pouch, so NO I was not going through 5 bags a day, but rather one the entire lifespan of my wafer. In public though, I at least had that quick option to toss and click on a new one.
I never knew you could get non drainable bags. Neat solution. I found that it was more convenient for me to empty my bag in the hand basin. Sounds gross, but it's easier on the body, and very simple to clean the basin each time with some disinfectant and water. As your poo is very soft, it drains easily, and the U bend stops any smells. My plumber confirmed that the waste goes to the same pipes as my toilet, so no issues there. Obviously, if you are using a grey water system, you can't do this.
No one should have to drain or clean a bag. I change mines when it’s full or stinky. I know not everyone can afford that but it’s easier and more hygienic.
In France these bags are free because our Social Security System pay them or refund them. Your medical supplies should be free, we shouldn't have to be wealthy to afford good medical care and medical supplies. I'm in a wheelchair and without our health system I would probably kill myself to relieve my family because my disease cost too much every month. For example my wheelchair cost 7000€ and I need to change it every 2 years, it's unaffordable for a lot of families in France.
my self I have had mine for over 30 years and found my ideal way for my change, I am confined to wheelchair, so I had a tee placed in my water supply line to the toilet, then got a kitchen sink sprayer with hose, installed it, brought it up on topside of toilet, so easy to reach from my wheelchair, I just pull up to toilet, grab all supplies - i put on disposable rubber gloves - new bag, tp about 4 wands, if bag is really full I will use (crock spread butter container - my choice ),and un-clip bottom of bag and drain some then dump in toilet, then I remove bag set aside wipe around inside of base, couple of wands tp, tossing them in toilet,snap on clean bag, close pants, now the ugly part, I grab the used bag and my sprayer - with clip off , I spray through top opening while holding bag over toilet and wash out bag, place it aside for future use, I know this does not might not work for some, but it works for me, in-fact this is the easy part for me, the hard part for me is to take my daily shower and not get the base seal wet, cause then the base will turn loose just when not expected, taping a plastic shopping just above the base tape works pretty well but it is not a sure thing, some time the water gets by that also, I am a VietNam veteran and supplies are minimal through VA, so re-use is a necessity, [[[ NOW for when those that are more outwardly going, take extra bag and gloves and zip-lock bag-big enough to put used bag in, I un-snap bag and wipe snap-ring of base with tp, then replace new bag, dump as much as possible in toilet, if sink is available add some water and rinse and dump, place used bag it zip-lock bag and place in your supply back pack, when home, take it to bathroom and use the sprayer method to rinse clean, place aside for re-use ]]] hope this might help all that need it. my
Thank you for not talking about purses! :) some people watching might be facing a future with ostomy bags... So thank you for sharing, baring, and caring :)
Maggie, thank you so much for all this info you are putting out here! I had a subtotal colectomy almost five years ago because of colonic inertia, but have ongoing complications with intense pain, bowel issues, anastomosis stricture and ulcers....I'm seeing another GI surgeon and will need surgery, with a possibility of ileostomy. Like you, I have felt like I would probably need this sometime in my future, especially with how bad the pain gets. At this point I just want to feel better and get on with my life, but I do have some worries and questions about life after especially with my job and active lifestyle. You have answered many of my questions in the videos I've watched so far, and seeing others be able to get thru daily living with such positivity helps immensely. Thank you for what you do, and for your strength and positivity!!
I have a two piece made by Hollister. It has the velcro closure. I open it and use a nose/sinus squirt bottle to clean out the throat of the bag after you empty. I started out just using just toilet paper and I was using a lot. Also, I sit on a milk crate leaning over the toilet to empty it, so "aiming" is not much of a problem. When changing out the barrier I sit on a milk crate in the shower so if there is leakage it is not a problem. Thanks for your information.
To avoid splash back I was told to place some toilet paper in the bowl so you would end up with a big mess. I’ve had my bag for 35 years and have never had any real trouble emptying my bag. I guess I’m lucky😂
As an colostomy patient with a thicker output (usually) I've gone a different route. In the morning once I've emptied my bag via. the velcro tab I'll disconnect such and rinse with hot water via the bathroom faucet. I'll add I remove the stopper in the sink so waste goes quickly down the drain and doesn't stay in the basin. By holding the bag near the attachment point near the faucet outlet and aiming the bottom of the bag towards/in the drain such can be accomplished with little mess with a bit of practice. Once I've rinsed through a few times and cleaned out I'll leave my bag on a towel to dry while I clean the top surface of my wafer around my stoma before reattaching my bag. I've quickly learned their are a number of benefits. Reduces the weight of the bag not having left over fecal matter inside, reduces odors and helps you feel cleaner especially if you keep your ostomy on for days. The biggest benefit is the cost savings which can be significant. As a side note being a hairy guy I shave around my stoma every time I change my wafer (every 5+ days). My issue in the past was leakage via breakthrough of the adhesive where wafer meets the skin. I'd rather spend a bit of extra time making sure I have very secure seal around my stoma once or twice a week than multiple times a day if I were changing my bag every time it was getting full. I've also reduced the supplies necessary for my ostomy care drastically. All I need these days is wafers, bags and adhesive nothing else (no adhesive removers, rings, extra tabs, etc.). Another thing I've learn due to different body shapes and ostomy locations care for such can be highly individualized so what works for one person won't necessarily work for everyone. Best wishes to anyone who ends up in life with appliances they didn't expect.
After reading the majority of these Posts/Comments, I can add a few tips,. I have a Permanent Ileostomy. I did have an Ostomy coach but we had sort of worked together & apart in Hospital Supply, & prior to that employ I managed a Medical Durable Goods & Supplies Store in New Mexico, so I had sort of heard it all... When I left the Hospital after Surgery I took home a plastic Urinal that has the little-attached lid, You may have a plastic tall juice jug or The GO-LITELY jug because like me you thought it might be handy, :) . (Or go buy one). You can sit or stand to empty your pouch into the container. I then use an old plastic cup holds about 2 cups water, pour some water into your pouch, swish it around dump in urinal & do it over 2-3 times (I use the Lock & Roll style which helps when cleaning as the end is a little stiffer for emptying & cleaning & I dry to about the 3rd bend. I can empty jug in the toilet & wash it out. This is Great for Home... I do carry an empty squeeze bottle with my extra supplies in my now oversized purse, when I go to the Restroom I fill my h2o bottle, try to get the Handicapped stall & do the paper on the water first, sit & do my thing, (If I have room, I remove one leg from my undies kinda roll it & tuck under other side,& now since I can not wear tight pants or skirts, due to pressure on Ille, I can toss one pant leg over my left (I'm right-handed) shoulder, same with leaving skirt on.I hope this might be of some help out there. If you do change out in public do use your brown baggies, & use Sanitary Napkin Disposal Box or where you would dispose a Baby Diaper. (the bag helps tone down the Oder ). Our lives have all made some changes we never expected, & my Heart Goes out to All of you since I can relate, But the best thing we can do is remember, IT COULD BE WORSE,...Your Attitude Helps YOU & THOSE around you, whether or not they know. Best Of Wishes.
Liquid Laundrey Detergent jugs are Good too & don't look as strange in the Bathroom as an Orange Juice Jug, there wide enough to work with. Best of Wishes
I've found the doctors and nurses don't appreciate the fact that your life has changed to the extreme. I found that the two piece system is the best over everthing else. I repeatedly expressed to the doctor and visiting nurse that i preferred the bags by convatec that snapped on which made it quick and easy to get on with life. The push back i get is that the insurance won't pay of some of the supplys i preferred and i get what i get. Just like the ostomy. I didn't asked for that, it was thrusted upon me with no other alternative. So now i pay for most of my supplys out of pocket and thats fine but its not right when you have insurance that should pay for at least some or all of it. Convenience is paramount when you have an ostomy. Enough said.
Interesting that American's need insurance and can't always get cover for the Stoma supplies needed. In England, as long as we work and pay taxes, all ostomy supplies are free. It's incredible how much just one person can cost the NHS. I'm very grateful for the service.
We use the Hollister urostomy bags with a plastic turn valve. We empty into plastic beaker. No leaning or aiming or anything. and doesn't leak My wife's ostomy is an inie, that I have to cut the wafer to fit the stoma. We need a clear bag so I can align it to the stoma to attach to her. We wear a downdrain bag at night and when she takes a nap. clips right to the valve stem and we just open the valve. We have to have a one piece, the two piece pouches came unseated or would pop off when she turned over.
I'm relatively new to this but I empty my pouch several times a day because the weight of the waste pulls the skin. Since it can become rather costly to change out the pouch, I've found that if I pour warm water in it before emptying that it dilutes the waste and empties out easier and cleaner. As for using public restrooms, not an option unless it's an emergency situation. Timing is everything.
I’d recommend a sanitary bin, just as it’s more convenient. You could keep it next to the toilet in your bathroom and when you change you can use the same liners and make disposal easier xx
Great video!! I've had my colostomy for 17 years (Crohn's) and have been lucky, no issues. Unfortunately, it has become completely prolapsed (coming out too far) due to an intestinal hernia so i have to have surgery shortly to correct that. No point to my comment really, it's just sometimesi get so tired of having Crohn's. It's effected my life since i was about 11 and it's relentless. So many days of pain, not being able to eat, hospital stays...I'm just sick of it. But it's nice to see your videos. You speak well and educate people. Keep it up😊👍
Some people have had less internal pain and irritation by eating a small amount of yogurt each day, but this doesn't work for everyone and I am not a doctor.
the closed bags are much more sanitary. i use 1-3 per day. I do not re-use them. I agree with everything you said about the open end bags. Ive had an ileostomy for 26 years.
Hello, my late Grandma and I went on a journey together getting to know how this all works. I played nurse for her whenever she would stay the week with me. She had a hard time seeing where it connected. I'm so grateful for other companies letting her try samples out until she found what she liked. She used the drainable with the clip, but when shopping she would use the disposable. She called hers her "baby". Lol
I loved reading about your Grandma. I miss mine so much. Calling it her baby is such a Grandma thing to do! They enrich our lives tremendously. It sounds like she won the jackpot with her grandchild too. 😀
@@sherrimiller5258 thank you so much! Yes, we were so incredibly close. My only regret is not calling her more often. I spent weekends and summers at her house. She was such a wonderful role model and Godly woman. 🥰
I have those clips for extended larger bags. Hate em. Both Coloplast & Hollister use them, as thick poop can plug up the tiny opening cap. I'm 73 w/ poor vision. Kudos to Grandma. I call mine "Little Buddy"(Gilligan's Island). I greet it every am "Hey little buddy" Alan Hale Jr. RIP
I've always had the 2 PC since surgery, Hollister has them in many sizes, drainable and nondrainable. The drainable ones are less expensive if having to pay for your own, thank the Lord mine are covered by insurance, but they can be used once and thrown away. I never drain mine either. Another blessing is that I'm getting the reversal done in 6 wks, so bye bye to colostomy!! But very high chance I'm coming out of surgery with an ileostomy for 3 months, then be completely free from ostomy all together!!
@@toni5543 waaaaaaay easier....my medical covers my supplies....i go through 5-6 mini closed pouches a day....i use baby wipes in the plastic tub so its easier to open with one hand and i just wipe under and around the side of my stoma with one wipe while i hold my bag under my pouch and making sure my stoma in aimed down into the bag...just in case I make sure the ring on the flange in clean and then i put the bag on .....make sure to flip your bag up and make sure no output has gotten on the backside of your pouch or on the flange. I make sure its all snapped down....i tie up my bag and toss it into my ostomy garbage can. Switching out take maybe 30 seconds....honestly, i had trouble with drips out of the roll and lock pouches....and i would have to get down on my knees, and for me it was alot harder as i have knee and hip issues. I dont like having a big bag dangling down at the bottom of my shirts. With the minis they can just free hang and they dont show under my shirts.....they are less heavy as they hold less output....and i dont like having lots in there to begin with. Hope this helps and I hope you try it, it will change everything for you.
@@toni5543 also i forot to mention that i ussually get about 4 hours hour of each pouch.....i change it first thing in tge morning and right before i go to get aswell
I’m thinking of changing to a non drainable pouch, had colostomy surgery 6 yrs ago, but isn’t it hard on your skin changing bag as often as you do? I would think skin around stoma may get sore and tender?
They gave us a bag, but no clip. Over the holidays. I agree that disposable is the right answer. We can't get the adhesive to stick. Plus severe ulcer now. Agree that the velcro gets dirty. And emptying the bag is just too hard for all of the reasons you're saying. I hope there's a better way than what we're doing now.
I’m getting ready for surgery Thursday Morning at 8:15 am. You are so incredibly amazing and have really helped me so much. You are young, beautiful and so honest. I want you to know how incredibly grateful for every minute of these videos. Wish me luck and I’ll be grateful for any and all Prayers from anyone out there. 😇🙏
To mitigate the problem with cleaning...fold end back always and wipe...then squeegie it back and I wipe again...Then when I clip it...I double fold and run the clip real tight and make sure it clips and that stopped some of those problems.
I use a wheelchair and have a colostomy. I empty my bag by pushing out the poop then pouring a cup of water into the bag. I pour out the poop water then I push in a lot of toilet paper into the pouch. I slowly use the Toilet paper inside and just run it up and down the bag and around the wafer. And done no mess and works amazingly well. No accidents or anything.
This works so well to clean the poo near the end of the pouch. I also recommend if you have Bunchy pb texture output that’s hard to remove from the pouch. Adding cold water serves to ball up the poo making it so easy to empty. Also if you hate clips or Velcro try Coloplast sensura. They have by far the best closure system. You just turn the end twice, then the sides adhere to the end. Whoever thought of the traditional Velcro of hollister where poo gets stuck everywhere needs to be fired. I took one look at that pouch and said this will never work. Plus hollister pouches have a super small output area. Coloplast has wider so it’s a lot easier to clean and empty
This is what I've done since day one! Ice had an ostomy for almost 6years .. To be fair I started out with a colostomy so I was used to non drainables..(had surgery to remove the remaining part of my colon 2 years after my intial surgery) even though they put me in them while I'm the hospital- I went right back to the non drsinables that I knew and loved .. I use holster but at one point I was using coloplast pediatric bags and they were so tiny and perfect for intimacy and beach ... I never felt clean enough - especially keeping the same bag on for multiple days!! I'll even empty through the 'big hole' that connects it.. if I'm trying to conserve bags or just at home and don't care :-) they are so much nicer/smaller/cleaner IMO! Overall I had the exact issues as you did!!
I switched to closed bags based on this advice. This is about a million times more convenient and less leaky. Also price is not that much different. Thanks!
Just got one myself about 6 weeks ago. I was not having it. It was my biggest fear about surgery was getting colostomy. I have to say that im just starting to get more used to it and realize that it had to be done to save my life. I think about the quality of life and how much better it is to not deal with the medical issues i was experiencing . Might be a bit bumpy at first but it gets better and quicker and thank goodness there are people kind enough to open up their lives to help us...like Maggie! Bless you and wish you the best.
Hi Maggie, I have stage 1 rectal cancer and my surgeon said that since it involves the sphincter muscle , that I will have to have a permanent bag. Are the bags that you're talking about available at the pharmacy. I'm 53 and super nervous and scared
I had my ileostomy about 30 years ago. One of my biggest problems was recurring fistulas, the pain was unbearable, and they were frequent , very frequent. The Dr didn't know why it kept happening. They had to be surgically cut and cleaned and drained. It might start like a small cyst, next thing, it was goofball size,( by now I was trying to find a way to get to a hospital), if let go, it would become baseball size and the pain increased the bigger they got. The biggest one was the size of a good sized grapefruit. When the cut it to release the pressure the relief was unbelievable. At 1st I was embarrassed because it had a vile odor, but the Dr that was doing it said.. that's my job, and if I can put up with it, you'll be able too.He also said that after a while NOTHING would embarrass me. Was that ever prophetic!!!!! When they did my surgery, they took my rectum, and anus , sewed everything up and sent me home I was on hospital only one night. I still have problems with leakage around the stoma. And the skin I'd ulcerated there almost all the time. I try every new product as they come out . I need deep convecity,pouches. Because my belly sinks in around the protruding stoma. I just moved in with my daughter and I am so careful to clean up everything as I go along.I was married 43 years and widowed in 2013. He was very understanding about it, which helped.I just found you and will be watching your videos, maybe you know something that this old lady dosen't. Thanks for your courage and strength, I am sure many people will find it useful. Too bad the doctors don't watch them, then they would have a little more understanding as to what we go thru post surgery and on to the rest of our lives. God bless you and your attitude.
Maggie you are courageous woman I take my hat off to you just explaining this this got to be horrible for you to go through everyday God bless you sweetheart and my hope is for you that you can get that bag off in and live a normal life without the bag if it's all possible
I have opaque drainable with velcro no output has ever gotten onto it. I just clean it off with a squared wad of paper and up into the opening then fold it up and away i go. It's just a matter of finding what works for you. I also use the Salts Aloe Rings, work well for any skin irritation around the stoma.
I can’t imagine what you’ve gone through. You know you have to make life work for you. I don’t have a bag, I am not aware of anyone I know in this situation( lack of using the medical terms I don’t know) it just sounds you have a system that works for you and isn’t that what we all do. I have blood clots in my legs, I have to ware stocking that go from foot to crotch. I even have to go to a woman’s lingerie store to get these medical pressure stocking. I always the only man in the store needing help from a sales clerk. Yes my wife loved it and likes to photograph me walking in and out of the store and I don’t mind at all. We just learn how to live. Best wishes to you I am going to watch more of your videos now. Best wishes
My special needs 25 year old son had a traumatic surgery 2 weeks ago removing his large intestine. He has not healed well. He just had another surgery today and they ended up needing to do a stoma. We are so emotional. I just watched your youtube and felt I must tell you how thankful I am to see a beautiful girl both inside and out explaining how you throw your bags away. The tears are flowing with relief because of you. You are have helped more than you can know. Thank you for being such a brave amazing person sharing your personal story. Thank you!!!!!!
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♡♡♡ I hope he heals quickly. Please let me know if you have any questions! What a wonderful family he must have doing research on his new surgery!
Hey mary, hope your son is doing well I was 21 when I had my colon removed back in 2016 I was diagnosed with indeterminate colitis but my doctors leaned more toward UC so I just last week was discharge from hospital from just having my reversal it's been 4 years with no flare ups so I'm assuming I must have UC and no CD, it is one hell of a ride I'm in bed now recovering if your son wants to talk to someone his age just hit me up it's good to open up and talk to someone especially someone his age as mentally it is very draining as well as physically ,give him my wishes, giving you and the family love, take care.
I’m so sorry , my grandson has one and all I can say is time heals. The best thing we found was a pouch holder that fastens around the waste and supports the bag. He will be fine he has now joined these amazing young people that handle this beautifully.
I pray for your son❤️
@@crunchybiscuits4080 praying for your son. I was just diagnosed with colon cancer and I will have to have a is ostomy bag!
I’m training to be a general surgeon, so I’m regularly involved with caring for people who have just recently gotten their ostomy. I love your videos because they give such a good insight into what daily life with an ostomy bag is really like and that’s what most of my patients’ questions are about.
Gabriela Rentsch it’s fucking miserable every single minute.
Finally! A surgeon that listens!👍😊
You can also recommend the videos to your younger patients. Much more relatable than an office lecture!
the fact that you're in med school and seeking out these sources of information is really uplifting. first, its just amazing that these platforms and technologies exist to let people share their lives with the world. second, it's so smart of you to utilize this as a learning tool!! i can't imagine how valuable this style of information is, compared to the years of textbooks and short patient interactions i imagine are involved in the training process. hats off to you, i wish you the best in your studies!!
Nobody cares that your “training to be a general surgeon” 🙄
I have an ostomy and have only had less than I can count on my hand the number of accidents once I learned how to empty the bag. When you add a little water into the bag, everything comes out of the bag easier. Being able to clean by bag, I have been able to keep the same bag on for a couple of days. I will say that I have been in the hospital three different times and the nurses don't know how to clean them either. I have had to show them the way that I clean them. When I did it their way, it just made a mess and not easy to clean up.
I did enjoy listening to your video and am glad that there is something out there to help new patients.
Thanks so much for sharing this video. It's been such a big help for me. Life saving colon cancer surgery a few months ago and ended up with a colostomy. The only thing that bothered me was emptying the bag for all the reasons, you mention; messy, hard to control, etc. This has made living with my bag so much easier!!! So simple to do. it's really brilliant and haven't seen or heard it anywhere else.
Thank you for all your vids. I use the same Hollister 9” nondrainable bags as you for all the same reasons. I’m 73 now and I just think I’ve outgrown touching and playing with my own “stuff” if you know what I mean. Such a relief to not have to smell. Medicare allows me one box of 60 per month which is plenty. I use hand cut pieces of extra thin Duoderm to reinforce the flange because the stoma has some “fatty herniation” around the stoma. To protect the skin in the area I use Cavilon spray instead of the little Cavilon wipes. Slightly more expensive if you aren’t on Medicare but well worth it. I can go nearly two weeks without changing the flange of the colostomy without affecting skin integrity, though normally I replace the flange weekly. Stay safe.
I just got mine this month on the first. I'm also seventy five so old timer to old timer how long did it take to adjust to using these bags? I've been going through all kinds of troubles with leaking at the barrier. I mean you think you have a good seal and ten minutes later it blown out on one of the sides. That and waking up at four in the morning with an over full condition ( yeah nice way to start the day). This whole situation seems to be compounded by having a stoma with two smoking barrels , not just one. If you have some advice that might be helpful bring it on I'm open.
@@bradargyle5524 thanks.. I am a 73 year old Ostamate, using HOLLISTER DRAIN: how are you coming? I had a great Team of,Ostomy Training at U OF Chicago some five years ago, *& really no problems ( a small,Bleeder occasional), etc. I,am,checking with MY new HOSPITAL Team soon: have herniated, some , we should always check out our Procedures……etc
Keith, how are you coming,? I am five years post colectomy, use HOLLISTER Drainable/ ADAPT LIQUID, etc. I was interested in those FLANGE/ disposable , as I have never used .. I do have good luck withHollister Drainable, other than DOING/ Larger volume occasionally…I am age 73 , semiRetired Pharmacist ( Oncology/ Then retail).. Interestingly, just our of pharmacy School I. 1969-70 my first DRUGSTORE was close to GI SURGERY HOSPITAL We had a few COLECTOMY PATIENTS that got a lot of Squibb/Supplies for & the CLNVAGEC/Squibb REPRESENTATIVES helped stock for GI/ Colectomy Patients(** a few struggled, *& lots,of medications,** as TREATEMNTS HAVE IMPROVED IN 50 years)*** Also,, my Team at U OF CHICAGO ran thru lots , of training after Surgery, *& I continue to use **EDGEPARK **for Supplier of HOLLISTER OSTOMY.. Not used much CAVILON, & some miscellaneous helpers. Though we just changed to BLUE CROSS Montana for my MEDICARE SUPPLEMENT INSURANCE THIS YEAR (( AARP/United Health way To expensive),& seem to be having trouble with DEDUCTIBLE, *& EDGEPARK , not getting Paid or something. I am DENNIS Mock, @……..etc. Actually, calling to have my new Hospital Team check my Stoma routine,and I am herniating some also… My Physician suggested I gained 15 LB this past year…etc. Drop me a line,
I used the drainable bags in the hospital. Once I got home my Ostomy nurse told me about the closed end pouches; & I've been using them ever since. Sooooo much more sanitary and quick
Thank you so much for your transparency and knowledge. I began watching your videos prior to my husbands ostomy surgery. You really helped me to prepare for it. I am my husbands caregiver, he is a paraplegic of over 40 years. I love your positive attitude!!
thank you for your feedback i have had an ostomy now for 10 years now. i use a one piece ostomy used to use a 2 piece but had issuses with them. the one piece is good for me but everyone has to be comfortable with yourself. glad i came to this channel thank you for your experience and help.
Well my best luck originally was with the single piece bags but after a few months of experimentation I'm having much better results with the Hollister two piece bags and the support strap that holds everything firm against my abdomin. Now don't laugh! Rather than using The adapt paste To fill in the skin creases to help seal the shield I tried denture adhesive and found that because of its higher tac it works better than the regular paste. And now for the really crazy. Super glue, yep, super glue. By putting a continuous bead around the outside edge of the base piece I found it really stabilized the shield and gave me a second line of defense against leakage while getting four days of use out the base instead of 10 to 20 hours. Yeah that's right four times the performance . I wouldn't be afraid of the glue while it sticks harder then the regular adhesive it's not a big problem to peal off. Sounds a little crazy but it's worked well for me and given back my freedom to venture out in the world with alot more confidence. Yeah that's me the crazy old guy.
When I had my temporary ileostomy, I was taught to sit in a chair in front of the toilet to empty my bag. (I had a folding chair in the bathroom) Also, to reduce the possibility of splash back, I was taught to put toilet paper in the toilet prior to emptying the bag. Hope these tips help someone.
Thick thighs here. 42 male. I do the tp, but I stand like I’m peeing and get low as possible. That’s my style. Bc there’s no way I’m going to dump between my legs. It would be a mess let’s just say. Love you guys.
Thank you! I’m taking care of my mother-in-law. She has ostomy. I’m very thankful because I updated my knowledges with you, and I also learned a lot!
Blessings🙏!
I'm a nurse and I feel your pain with cleaning the end /velcro on the bag! No matter how hard I tried, it was a bit messy. I wish we could use one pieces in my hospital. Thanks for sharing your experiences.
I understand as a 42 yr old male. It has to be hard to help or totally clean someone else’s bag. My wife did it for a week until I understood that it’s mine. It’s hard mentally.
Thank you for posting. I have a family member with a new ileostomy and I'm glad that there are these kinds of resources and information available.
As a CNA I often had to change bags...then we were told to reuse.
I simply couldn’t do it..seemed disrespectful to the patients as well..
I told the R.N that I would pay for the bags myself!
Love your TH-cam site and your refreshing, positive spirit! Just had colostomy surgery and getting used to everything "stoma", have learned so much from your videos. Thank you, thank you, thank you.
That is one beautiful lady with an awesome, positive personality.
I cannot IMAGINE having to clean a Velcro end! I’m so glad you found what works for you, and appreciate you sharing your experiences!
It's no big deal. I can be in and out of the toilet in less than a minute. Empty it 3-4 times a say change bag every night after a shower.
I knew a girl who had an ostomy bag. I always wondered how people did all of this. Thank you so much for these videos. I don’t have this but I know for sure you’re helping people all over. So yeah, thank you so much.
Love your user name! 😂
Your videos prove....DON'T SWEAT THE SMALL STUFF IN LIFE!!! You have beautiful eyes!!!
Nurse taught me to wrap toilet paper around my finger to clean inside the end. I do that till is clean. I have an illeostomy. I use converter 2 piece system. Love your videos!
I love that you also still work as a nurse , most people give up and can’t or won’t work , you’re amazing
Thanks for sharing this very valuable ostomy tip! I don't have an ostomy but worked as an RN (as both a hospital and a Home Health nurse), for 25 years and never heard of nor ever saw a nondrainable pouch in all that time. As such, you taught me some new things, today! :) This option is a wonderful solution, as there tend to be more leakage issues from the bottom of a pouch rather than around the seal. The reason why people look at you as though you're bizarre, when talking about "nondrainable pouches", has to do with the fact most people don't know that there are one piece and two piece pouches, let alone a range of drainage options.
As most of the people I worked with who had ostomies (including urostomies), were elderly people, they tend to have trouble both with vision issues (accurately seeing all parts of their stoma and pouch/seals while on the body) , along with problems manipulating all of the ostomy supplies, due to arthritis issues. A nondrainable pouch would be a huge relief for many elderly or disabled individuals who are living with an ostomy. Generally, we teach those who are dealing with a new ostomy to either sit on a chair at the toilet, to drain the pouch and/or to use a plastic bag as a collection device for the pouch contents. This saves one's back and allows one to take their time with the complex procedure. I've never heard of Velcro being used in place of a pouch clip before. Without even trying it, I'm certain there isn't anyone who can keep that kind of appliance sanitary, let alone dry, especially on an ileostomy or urostomy!
You've learned so much in the very hardest of ways. I'm sorry you've had to go through so much misery. I admire your willingness to teach others who are novices and walking in your shoes all of the "inside scoop tips" that RNs either don't have time to share with novice ostomy patients or don't know about (thanks to the enormous and ever-changing new types of medical supplies, equipment, surgeries, medications, diagnostic imaging tests, lab tests, insurance requirements, etc.). No doubt, you are improving the quality of life for so many confused and anxious individuals. Thanks for being a great role model and human being! :)
Amen!
My husband had a bag for about a year and we hated trying to empty it. Yes his skin was very sore if we changed the whole thing because of the glue. We loved just changing the bag! The Hollister bag that clicks on was a game changer! He almost didn't want to go through the surgery to get put back together. We also lit a candle everytime we changed it. Lol. This is very informative!
You are such a blessing to so many folks. Pragmatic, purposeful and powerful! Thanks for you videos!
I have had IBS since I was young. Always causes problems. I will think of what you go through and try not to complain!
Feel better and God Bless you!
You are a beautiful woman, stay strong!
Thank you so much for sharing - your honesty and willingness to share is insperational to ALL
When I was around 12, I had a married friend in Brooklyn who had a daughter with a "bag" and I was very fascinated. The mom was secretive however about the whole thing. Even though my husband is a physician, this was not his specialty so I am glad for the opportunity to finally understand this whole process and the openness. I am now 75!
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This sounds perfect! Seal it one time and just change the bag. Amazing , god bless you.
Thanks for sharing and teaching.My sister recently had a colostomy and I want to become more knowledgeable to help her and be able to understand her challenges.
I have a colostomy, I wear a definable pouch, but I don't change it. I was doing it for quite a long time, but I've gotten so weary of emptying, cleaning, and then reusing the bags, so now , even though it's a bit more expensive per month, I order an extra box of the bags (there are 10 bags per box). I'm much happier, and I just change my bag when it's full (once or twice a day), and I'm good to go. I am so glad I've discovered your videos, because even though I have had my colostomy for about seven years now, it is still so nice to know there are lots of other people out there dealing with living with an ostomy or colostomy,. Thank you for doing these videos, you present the issues in such a wonderful, caring, fun way. I'm looking forward to seeing more of your videos. 😊
That should say drainable pouch in that first line, sorry!!
I’m watching this second video because I thought you were so sweet and confident in the first video I accidentally watched. But I’m kind of lost and feel like I need to watch all of your videos to understand what your talking about here -or have Crohn’s disease to understand. But I love your outlook on your illness - keep your chin up girl! Good luck! 🥰🥰
This video put me at ease a bit, thank you. I’m 2 months post op and go back to work tomorrow. I’ve been using the drainable Hollister bags as well, and a nurse of mine recommended the disposables for me.
It is much easier to empty than to replace, if you are talking about one-piece pouches. Two-piece pouches can separate, creating a mess.
Thank you so much for taking the time to create your videos!! Your advice is very helpful and minimizes frustrations.
I am supporting my wife who recently had the surgery. My wife is very particular with her healthcare and cleanliness. The skin irration has been the most difficult part, and your videos have greatly helped!!
Thank you, thank you, thank you!!!
Have you ever used pouch liners? I use Attiva pouch liners and LOVE LOVE LOVE them!!! They allow me to re-use the same pouches over and over again (and save me TONS of money). Just line your pouch with the liner. When you need to change pouches, you simply pull out the liner, drop it in the toilet, flush it away, and you're left with a clean pouch! I especially love my liners when I'm out, because essentially I have TWO pouches - the lined pouch which is inside the clean pouch I'm wearing. So when I need to change pouches, I dump the liner into the toilet and snap the same pouch (now unlined) on and away I go!!! I don't have to carry several pouches because I always have TWO on me!!! Try the Attiva pouch liners (through The Parthenon Company in Utah) and you'll be hooked on them! They will save you a TON of money. No, insurance does not cover them, but they're extremely reasonably priced. I can buy two boxes of new pouches (30 per box) for the cost of one box (100 liners per box) of the Attiva liners. The savings are HUGE!!! Best wishes from me and Rosebud (my colostomy).
I don't understand how you can pull out a liner and replace it. Is this something that can be done with two-piece pouches? Also, I would never do this, as plastic should never be flushed.
Where you get them from?
@@abigailstoney6103 j
You are a very brave woman and when I got mine the nurse started me on the drainage ones for the drs to see the output and such but within one month she changed me to the closed pouch and I have used them for 11 years now. I use Hollister closed small pouches with karaya paste around the skin of my stoma then a skin barrier, then a wafer with regular paste and finally my pouch. Sounds like a lot but it's not and it's a skin color. Got in in 2007 and have not changed. Karaya paste may help your skin though, give it a shot. It's karaya paste item number 7910....take care and I applaud you on your bravery to put your stoma on TH-cam. :)
The Salts ones are the best. I'm a wheelchair user so have to try and empty it while sitting on the toilet. I've stopped emptying most of the time now too.
I love salts too! I’m six months post op so was using the drainable one pieces but I never empty mine (it’s a colostomy I’m changing twice a day usually) so thinking about changing to a one or two piece closed bag just ordered loads of samples so will see what I like!
I found that emptying my colostomy bag “ backwards “ into the toilet helps me. Right now, I have the one- piece and it’s easier than aiming at a small spot. I haven’t had mine so long (2-3 weeks) so I am still “ training “ !😂😂 Thank you for your helpful videos .❤️
What is "backwards"? I stand up over the toilet. Is that how you do it? It never occurred to me to sit. I squat down to get closer. But this woman's video is making a lot of sense to me!
I did this same thing with my first ostomy & everyone thought I was crazy! M output was so thick and moved through me really slow so I had a really hard time getting in out of the pouch. I would change it in the morning, afternoon and at night. Glad someone else out there does the same thing! When I got switched to my loop ileostomy my liquid was fast and watery so the drainables worked a lot better.
Emily Parris I love ur channel 💜
Loop ileostomy here, and I can't even imagine non-drainables. I've had times where my bag goes from empty to full in about 30 seconds.
When that happens in public, PANIC.
Yes, disposing of pouches only works when the output is very thick. Otherwise, way too expensive.
Holy shit balls why did TH-cam recommend this video for me ☹️sorry you guys have to do this
+Cwazy C
Having an ostomy is a lot of shit to deal with... but it's better than cancer, Crohn's, or colitis!
Thanks for making this video! I just got my ileostomy less than 2 weeks ago, and it's always neat to see the unique ways other people use various products and tailor their ostomies to their own needs. My ileostomy is oddly quite low output, so this may be an option for me to consider down the road.
I want to tell you how awesome you are in sharing all you experiences. Thank you so much. Keep up the great content.
I was taught to rinse mine thoroughly with water, so I carry a water bottle with me. I have the Convatec clear "velcro" closable types so I can clearly monitor what is happening. It is so much easier to tip the bag up, add water and aim it all at the toilet. Then I am completely clean and good to go on!
I was told by an ostomy nurse that you should not use water to rinse the bag because it can break the adhesive seal. But if it works for you and you have a good deal, keep at it! Plus, psychogically, it must make you feel clean and fresher! Go for it!
Marcia Kopp I use water to rinse mine, but I do Not allow it to reach the area where the adhesive is. After I empty the bag contents is when I gently rinse, put the closure clip on , wipe the end with tissue & go on my way.
Attempting to empty the bag directly into the toilet bowl is quite a challenge for me, and likely to be a bit messy. I have discovered this method, adapted from how I was trained to empty it while in hospital. I use a jug, and to get the correct height for me (while sitting on the toilet), I place the jug on top of an upturned bucket. Being quite old - 73 years - and have the bag for just 4 months, I need a clean method, one that does not challenge an older body too much, bending down, etc. This works perfectly for me, and it is easy to disinfect the jug after use. I store it in the bathroom, discreetly out of sight, ensuring no one mistakingly uses it.
I get really excited when I see other people talk about these things! I talk about them on my channel too. I've just now gotten brave enough to discuss my ostomy openly, which makes me a bit sad. I'm 36 & have had mine for 13 years.
Good for you to be confident about a part of life that many many people go through/ have to live with. Bravo. Sarah UK ❤
It makes it less traumatic for others that you can talk about it (hopefully without crying) though. It's all overwhelming at first.
I changed to the bags and love them. I didn’t like The drainable bags because I just felt like it wasn’t clean after I drained it because you can’t get all up in the bag. I loved watching this video because I completely agree with what you’re saying with the one piece bags non-drainable.
This was great to hear. I'm about to undergo thumb/hand surgery and will be casted and one-handed for several weeks. I couldn't fathom how I'd clean the end of my bag after emptying. I'm going to go for these non-drainables, and hopefully will be able to pop them off and on easier with one hand than emptying/cleaning with one hand. Thanks so much for the info, love it.
I don't have IBD but my boyfriend does. And your videos have helped me so much to understand his condition, especially since that means I can support him better. Keep it up, you're so strong and you're doing so much great work!
My grandma had an ostomy for many many years-she named it Wilbur.
My mums name for hers was Albert 😂😂 The things people do to cope
So funny, women were even tougher back then 👍
I named mine Oscar the grouch when I had one.
Mine is - Hector
The Dexcom is Dexter.
I’ve called mine pickle, because I’ve been in a pickle ever since I’ve got it.
That’s cute 😂
It's a struggle!
Your channel was suggested and I’m so glad to find it! Thank you for your candor and transparency with this topic. It is fascinating. I feel embarrassed for being such a lazy ass dolt with no health issues but not a very productive person. You are so splendid and cheerful. I am going to try harder in life a s do better in honor of you. ❤️🙌
If you're too lazy you might end up with health issues. So be careful! Do it in honor of yourself as well as this lovely woman Maggie. I had no health issues, but now I have a colostomy. It's temporary, supposedly, but I'm still going to have a big scar all over my stomach. And that was just a side issue to the heart surgery that I suddenly needed. At the very least, don't be too lazy to get checkups regularly!
PS: I'm Still lazy! Imagine that. Dumb! Must be other issues: need to solve my problems. PPSS: Take care.
I had colon cancer removed July 29th 2020 and now I have an ileostomy... I hate having to clean the drainable bags especially when I get faeces on my hands... thanks for sharing. I have to try this!
Saddest thing I've seen was a homeless guy, cutting his bag off, and a transit cop, telling him the local county hospital could help him get a replacement...thank you for talking about this. Being paralyzed from the neck down, being blind, and this which you're dealing with are my worst fears in life.
I use a smaller size Hollister drainable bag. My technique for cleaning the end is to fold up 2-4 squares of toilet paper into little "wands"--just fold in half, turn it, and repeat til I have a little thick rectangle. I can insert these into the end of the pouch and clean it thoroughly, then wipe the outside off with another square of toilet paper. As needed, I also use baby wipes to clean the outside of the pouch end and the clip. Everyone's different, but the amount of trash my ostomy generates is my least favorite thing about it already and I get so anxious imagining 7-10 bags per day in my trash can! Figured I'd share this tip in case it helped anyone who also prefers drainable pouches.
I am currently recovering from a partial colectomy,total hysterectomy and hernia repair. I was terrified my diverticular disease would leave me requiring a bag after my surgery. Thankfully it didn't,but for all you incredibly brave that have one,you deserve a medal! God bless.
Just curious why you had those at the same time
Both the Coloplast Sensura Mia and Convatec bags have little Velcro circles that hold the velcro strip out of the way. Once it's out of the way then I don't get output on the velcro strip in the first place. As mentioned in another comment, I use a single layer of toilet paper on the the top of the toilet water which prevents splashing. I kneel in front of my toilet on top of a squatty potty to get close to the toilet, and just crouch down in the rare cases I have to drain in a public bathroom (my quads are pretty strong from yogo). I use disposable food service gloves to protect my hands which is more sanitary and makes hand cleaning faster. Finally, the velcro strip ends can be folded up inside the bag cover which make the bag smaller and hides the end. Thanks for your vids; hope this helps.
I love my two piece system... i do have a few drainable bags. Simply for colon scopes, my ostomy is the result of colon/rectal cancer. My rectum is sewn shut... gone! I found out about the two piece/ non drainable pouches from my at home care nurse.. She was an angel for me.
Hey Cynthia are we able to speak in private ? I’m about to go through a pan procoloctemy the colon and rectum and anus fully removed and I’m scared about the anus part at present I’ve had a illostomy for past year and it hasn’t helped at all. I’m still passing from rear and it hurts like insane I’m not supposed to be able to pass from the rear at all. What I’m getting at it I visit the bathroom 7-10 a hour and I straight like mad mad but so when they sew mine up and remove it it’s got me wondering how they heck I’ll manage to not to straight immediately I’ve got fear I’ll pop the stitches open. Any advice would be awesome I should say I have horrid Crohn’s disease I’ve already lost part of my small intestine and fitted with Stoma etc and now I’m the next coming months full pans proctocolectomy with me going the bathroom 7-10x a hour and straining every time how will I stop that so I can heal! Any help would be very useful indeed
Please tell me what the item #s are for the non drainable bags I called one place and they did not know what I was talking about and I have looked on line but drainable ones only show up. Do you know if these work for all Ileostomy's?
@@dawnswanson4203 Hollister new image closed mini pouch with filter 18393 this also comes in bigger sizes. You will need at least the wafer also item # 14603 and I put on the barrier 8800 also. Good luck. I have used them for over ten yrs and would never go back to the ones you have to empty. There is also an irrigation process instead but I have not gotten the courage to change or try it.
Same here sown shut colon rectal cancer. Keep on being strong and hope you are doing well.
the most surprising is even people at the hospital nurses techs etc are not very well trained on these ostomy seals and bags like im new to this scene and am learning problay the hard way but i am very surprised of the extreme lack of knowledge on installs and even just emptying these devices. i dig ur vids thanks
Shaun Solenberger indeed the nurses don’t know much about it
Go to Hollister.com or Convatec.com. They have instructional videos these days.
I agree...my husbands ostomy nurse was fantastic and taught me exactly what to do...the regular nurses didn't seem to find any in supply and half- assed it so when I was at the hospital was when I would change it...gotta' learn sometime...he was like a watery faucet and septic...but I learned...not their fault it isn't something they spent a lot of time learning.
I live with an ostomy. Mine is due to a perforation from diverticulitis. I've had it almost
2 yrs now. And it's SUPPOSE to be temporary, but thank u Corona, something supposed to be temporary and has been healed and ready for reversal for almost a yr now, I'm having to still deal with. I've already had one revision done cause it wasn't made properly the first surgery and was healing itself up. Which it is again doing. Noon will check the ostomy itself. Noone in medical that is. Between me and my husband (I wouldn't still b here without. He married even after a short time together and the surgery happening while we were dating) we have made ways to make me comfortable with this. I still leak constantly and have to stay on watch. The cleaning and changing, now we have finally learned how to do it properly definitely goes much smoother and way less messier now. I had about 4 visits from so called Ostomy nurses, but honestly, they were clueless. And had me not leaving my house for fear of accidents. I do leave the house some now, if rarely, and for the same reasons. I suffer from depression and anxiety which this has only complicated. No real friends. I couldn't make myself go out the house and still struggle with company. I always feel like my house smells like shit. Disability keeps denying my claims, the ostomy is part of my health issues, along with heart issues and PTSD. I've been suicidal on a few occasions, thanks to support from my husband I have somehow survived till now. I know the upside of all this is I'm alive. But, I'm not. I haven't learned how to deal with this. I've gained 40 pounds sitting on my butt, but hard to get up and go when u get YOU GO and occasionally on yaself. I have suffer incontinence now. Worst than I have in my whole life. And I have NOONE to talk to about any of this that wld understand.
I'm glad to see there is a life for someone out there that has this issue. And I'm happy for you that you found it. All I can do i pray one day, hopefully soon like I'm promised, I'll win the lottery and get my reversal. If it isn't to late for my body to be able to be reversed. I do appreciate you trying to help others with this. It's an amazing thing. But be honest!! Some of us out here are in hell with this thing. My apologies for all this negative. And it's usually not my nature, before March 2019, when I had my first heart attack, which was the beginning of 3 mths of the worst days of my life. 🤷. And the 29 day hospital stay that left me with this ostomy. And not to mention, seeing my mother the day I got home and being called she was found dead in her bed the very next morning. And I'll stop there. My story is enough to push anyone off the ledge. Bless you though. Keep doing what u do. You are helping others. Take it from me. Any help, if just somewhere to tell ya story, make a difference.
I named mine Flo btw.
FYI - I emptied thru the ring which wound up being easier/cleaner than emptying a drainable pouch, so NO I was not going through 5 bags a day, but rather one the entire lifespan of my wafer. In public though, I at least had that quick option to toss and click on a new one.
It cant be cheap
Ohhhh okay. That makes more sense now. Ignore my question about cost. Lol
My stoma is Maybelle. When she's making her moans and groans, I tell her to sing the blues like Big Maybelle (terrific blues singer).
I never knew you could get non drainable bags. Neat solution. I found that it was more convenient for me to empty my bag in the hand basin. Sounds gross, but it's easier on the body, and very simple to clean the basin each time with some disinfectant and water. As your poo is very soft, it drains easily, and the U bend stops any smells. My plumber confirmed that the waste goes to the same pipes as my toilet, so no issues there. Obviously, if you are using a grey water system, you can't do this.
In UK we're not allowed to put faeces into dustbin. We have to empty pouches before throwing away. Thanks for sharing.
No one should have to drain or clean a bag. I change mines when it’s full or stinky. I know not everyone can afford that but it’s easier and more hygienic.
In France these bags are free because our Social Security System pay them or refund them. Your medical supplies should be free, we shouldn't have to be wealthy to afford good medical care and medical supplies. I'm in a wheelchair and without our health system I would probably kill myself to relieve my family because my disease cost too much every month. For example my wheelchair cost 7000€ and I need to change it every 2 years, it's unaffordable for a lot of families in France.
is it expensive to do it like that? how much are those bags, if i may ask
Oh please. Crap is a part of life. Some people are too prissy. Get real.
my self I have had mine for over 30 years and found my ideal way for my change, I am confined to wheelchair, so I had a tee placed in my water supply line to the toilet, then got a kitchen sink sprayer with hose, installed it, brought it up on topside of toilet, so easy to reach from my wheelchair, I just pull up to toilet, grab all supplies - i put on disposable rubber gloves - new bag, tp about 4 wands, if bag is really full I will use (crock spread butter container - my choice ),and un-clip bottom of bag and drain some then dump in toilet, then I remove bag set aside wipe around inside of base, couple of wands tp, tossing them in toilet,snap on clean bag, close pants, now the ugly part, I grab the used bag and my sprayer - with clip off , I spray through top opening while holding bag over toilet and wash out bag, place it aside for future use, I know this does not might not work for some, but it works for me, in-fact this is the easy part for me, the hard part for me is to take my daily shower and not get the base seal wet, cause then the base will turn loose just when not expected, taping a plastic shopping just above the base tape works pretty well but it is not a sure thing, some time the water gets by that also, I am a VietNam veteran and supplies are minimal through VA, so re-use is a necessity, [[[ NOW for when those that are more outwardly going, take extra bag and gloves and zip-lock bag-big enough to put used bag in, I un-snap bag and wipe snap-ring of base with tp, then replace new bag, dump as much as possible in toilet, if sink is available add some water and rinse and dump, place used bag it zip-lock bag and place in your supply back pack, when home, take it to bathroom and use the sprayer method to rinse clean, place aside for re-use ]]] hope this might help all that need it. my
I'm so glad that I found your page.
Ziploc baggie ! You can drain your duece the cleanest and easiest way by far ! Always carry some with you and your good to go ! Literally !
Thank you for not talking about purses! :) some people watching might be facing a future with ostomy bags... So thank you for sharing, baring, and caring :)
Maggie, thank you so much for all this info you are putting out here! I had a subtotal colectomy almost five years ago because of colonic inertia, but have ongoing complications with intense pain, bowel issues, anastomosis stricture and ulcers....I'm seeing another GI surgeon and will need surgery, with a possibility of ileostomy. Like you, I have felt like I would probably need this sometime in my future, especially with how bad the pain gets. At this point I just want to feel better and get on with my life, but I do have some worries and questions about life after especially with my job and active lifestyle. You have answered many of my questions in the videos I've watched so far, and seeing others be able to get thru daily living with such positivity helps immensely. Thank you for what you do, and for your strength and positivity!!
hey how are you doing now i also suffer from colonic inertia
I have a two piece made by Hollister. It has the velcro closure. I open it and use a nose/sinus squirt bottle to clean out the throat of the bag after you empty. I started out just using just toilet paper and I was using a lot. Also, I sit on a milk crate leaning over the toilet to empty it, so "aiming" is not much of a problem. When changing out the barrier I sit on a milk crate in the shower so if there is leakage it is not a problem. Thanks for your information.
I have the Velcro kind, I like it cuz it's a one piece unit. But putting a new bag on sounds even better. I change it every 3 days.
To avoid splash back I was told to place some toilet paper in the bowl so you would end up with a big mess.
I’ve had my bag for 35 years and have never had any real trouble emptying my bag. I guess I’m lucky😂
Yes. Works well for me.
I love how you have a name for your stoma. That's adorable.
As an colostomy patient with a thicker output (usually) I've gone a different route. In the morning once I've emptied my bag via. the velcro tab I'll disconnect such and rinse with hot water via the bathroom faucet. I'll add I remove the stopper in the sink so waste goes quickly down the drain and doesn't stay in the basin. By holding the bag near the attachment point near the faucet outlet and aiming the bottom of the bag towards/in the drain such can be accomplished with little mess with a bit of practice. Once I've rinsed through a few times and cleaned out I'll leave my bag on a towel to dry while I clean the top surface of my wafer around my stoma before reattaching my bag. I've quickly learned their are a number of benefits. Reduces the weight of the bag not having left over fecal matter inside, reduces odors and helps you feel cleaner especially if you keep your ostomy on for days. The biggest benefit is the cost savings which can be significant. As a side note being a hairy guy I shave around my stoma every time I change my wafer (every 5+ days). My issue in the past was leakage via breakthrough of the adhesive where wafer meets the skin. I'd rather spend a bit of extra time making sure I have very secure seal around my stoma once or twice a week than multiple times a day if I were changing my bag every time it was getting full. I've also reduced the supplies necessary for my ostomy care drastically. All I need these days is wafers, bags and adhesive nothing else (no adhesive removers, rings, extra tabs, etc.). Another thing I've learn due to different body shapes and ostomy locations care for such can be highly individualized so what works for one person won't necessarily work for everyone. Best wishes to anyone who ends up in life with appliances they didn't expect.
After reading the majority of these Posts/Comments, I can add a few tips,. I have a Permanent Ileostomy. I did have an Ostomy coach but we had sort of worked together & apart in Hospital Supply, & prior to that employ I managed a Medical Durable Goods & Supplies Store in New Mexico, so I had sort of heard it all... When I left the Hospital after Surgery I took home a plastic Urinal that has the little-attached lid, You may have a plastic tall juice jug or The GO-LITELY jug because like me you thought it might be handy, :) . (Or go buy one). You can sit or stand to empty your pouch into the container. I then use an old plastic cup holds about 2 cups water, pour some water into your pouch, swish it around dump in urinal & do it over 2-3 times (I use the Lock & Roll style which helps when cleaning as the end is a little stiffer for emptying & cleaning & I dry to about the 3rd bend. I can empty jug in the toilet & wash it out. This is Great for Home... I do carry an empty squeeze bottle with my extra supplies in my now oversized purse, when I go to the Restroom I fill my h2o bottle, try to get the Handicapped stall & do the paper on the water first, sit & do my thing, (If I have room, I remove one leg from my undies kinda roll it & tuck under other side,& now since I can not wear tight pants or skirts, due to pressure on Ille, I can toss one pant leg over my left (I'm right-handed) shoulder, same with leaving skirt on.I hope this might be of some help out there. If you do change out in public do use your brown baggies, & use Sanitary Napkin Disposal
Box or where you would dispose a Baby Diaper. (the bag helps tone down the Oder ). Our lives have all made some changes we never expected, & my Heart Goes out to All of you since I can relate, But the best thing we can do is remember, IT COULD BE WORSE,...Your Attitude Helps YOU & THOSE around you, whether or not they know. Best Of Wishes.
Liquid Laundrey Detergent jugs are Good too & don't look as strange in the Bathroom as an Orange Juice Jug, there wide enough to work with. Best of Wishes
I've found the doctors and nurses don't appreciate the fact that your life has changed to the extreme. I found that the two piece system is the best over everthing else. I repeatedly expressed to the doctor and visiting nurse that i preferred the bags by convatec that snapped on which made it quick and easy to get on with life. The push back i get is that the insurance won't pay of some of the supplys i preferred and i get what i get. Just like the ostomy. I didn't asked for that, it was thrusted upon me with no other alternative. So now i pay for most of my supplys out of pocket and thats fine but its not right when you have insurance that should pay for at least some or all of it. Convenience is paramount when you have an ostomy. Enough said.
Interesting that American's need insurance and can't always get cover for the Stoma supplies needed. In England, as long as we work and pay taxes, all ostomy supplies are free. It's incredible how much just one person can cost the NHS. I'm very grateful for the service.
We use the Hollister urostomy bags with a plastic turn valve. We empty into plastic beaker. No leaning or aiming or anything. and doesn't leak My wife's ostomy is an inie, that I have to cut the wafer to fit the stoma. We need a clear bag so I can align it to the stoma to attach to her. We wear a downdrain bag at night and when she takes a nap. clips right to the valve stem and we just open the valve. We have to have a one piece, the two piece pouches came unseated or would pop off when she turned over.
I'm relatively new to this but I empty my pouch several times a day because the weight of the waste pulls the skin. Since it can become rather costly to change out the pouch, I've found that if I pour warm water in it before emptying that it dilutes the waste and empties out easier and cleaner.
As for using public restrooms, not an option unless it's an emergency situation. Timing is everything.
Hi, Thanks for this video, I had my surgery about 12 weeks ago, those bags I'd not heard before. I will check them out.
Do you dispose of your bags in the sanitary towel bin or just the regular trash can?
I’d recommend a sanitary bin, just as it’s more convenient. You could keep it next to the toilet in your bathroom and when you change you can use the same liners and make disposal easier xx
Great video!! I've had my colostomy for 17 years (Crohn's) and have been lucky, no issues. Unfortunately, it has become completely prolapsed (coming out too far) due to an intestinal hernia so i have to have surgery shortly to correct that.
No point to my comment really, it's just sometimesi get so tired of having Crohn's. It's effected my life since i was about 11 and it's relentless. So many days of pain, not being able to eat, hospital stays...I'm just sick of it.
But it's nice to see your videos. You speak well and educate people. Keep it up😊👍
Some people have had less internal pain and irritation by eating a small amount of yogurt each day, but this doesn't work for everyone and I am not a doctor.
@@david203 Well thank you for taking the time to comment. I'm going to try that and who knows, maybe it'll help. Thanks, buddy.
I had my bag for 2 years, used drainable ones. Once I started rinsing the bag out with water I flew through emptying and was so easy.
the closed bags are much more sanitary. i use 1-3 per day. I do not re-use them. I agree with everything you said about the open end bags. Ive had an ileostomy for 26 years.
How do you replace pouches only 3 per day? I have to empty 6 times a day or more.
David Spector I’m a small person. I eat consciously.
David Spector I do empty the closed end bag and if I don’t mess it up I will put it back on.
I wonder if that person who developed biodegradable plastic from seaweed would be interested in making disposable bags
That would be amazing
Yes there are flushable biodegradable bags now! 🥰
@@Budgie-Vic Can you please tell us what they're called and where to buy them?
Hello, my late Grandma and I went on a journey together getting to know how this all works. I played nurse for her whenever she would stay the week with me. She had a hard time seeing where it connected. I'm so grateful for other companies letting her try samples out until she found what she liked. She used the drainable with the clip, but when shopping she would use the disposable. She called hers her "baby". Lol
I loved reading about your Grandma. I miss mine so much. Calling it her baby is such a Grandma thing to do! They enrich our lives tremendously. It sounds like she won the jackpot with her grandchild too. 😀
@@sherrimiller5258 thank you so much! Yes, we were so incredibly close. My only regret is not calling her more often. I spent weekends and summers at her house. She was such a wonderful role model and Godly woman. 🥰
I have those clips for extended larger bags. Hate em. Both Coloplast & Hollister use them, as thick poop can plug up the tiny opening cap. I'm 73 w/ poor vision. Kudos to Grandma. I call mine "Little Buddy"(Gilligan's Island). I greet it every am "Hey little buddy" Alan Hale Jr. RIP
I've always had the 2 PC since surgery, Hollister has them in many sizes, drainable and nondrainable. The drainable ones are less expensive if having to pay for your own, thank the Lord mine are covered by insurance, but they can be used once and thrown away. I never drain mine either. Another blessing is that I'm getting the reversal done in 6 wks, so bye bye to colostomy!! But very high chance I'm coming out of surgery with an ileostomy for 3 months, then be completely free from ostomy all together!!
I was never comfortable with a drainable pouch! I always had a bag I pulled out and flushed but I also had a colostomy!
I finally got my non-drainable in today and I have my first one on right now...I hope everything goes good :p
How'd it go?! X
@@toni5543 waaaaaaay easier....my medical covers my supplies....i go through 5-6 mini closed pouches a day....i use baby wipes in the plastic tub so its easier to open with one hand and i just wipe under and around the side of my stoma with one wipe while i hold my bag under my pouch and making sure my stoma in aimed down into the bag...just in case
I make sure the ring on the flange in clean and then i put the bag on .....make sure to flip your bag up and make sure no output has gotten on the backside of your pouch or on the flange. I make sure its all snapped down....i tie up my bag and toss it into my ostomy garbage can.
Switching out take maybe 30 seconds....honestly, i had trouble with drips out of the roll and lock pouches....and i would have to get down on my knees, and for me it was alot harder as i have knee and hip issues.
I dont like having a big bag dangling down at the bottom of my shirts. With the minis they can just free hang and they dont show under my shirts.....they are less heavy as they hold less output....and i dont like having lots in there to begin with.
Hope this helps and
I hope you try it, it will change everything for you.
@@toni5543 also i forot to mention that i ussually get about 4 hours hour of each pouch.....i change it first thing in tge morning and right before i go to get aswell
I’m thinking of changing to a non drainable pouch, had colostomy surgery 6 yrs ago, but isn’t it hard on your skin changing bag as often as you do? I would think skin around stoma may get sore and tender?
I clicked on this video thinking it was about purses.
Katherine Harrington Haha! That's a purse alright! I might be getting one soon. But. I will see! 😂
Katherine Harrington me to,lol.
Katherine Harrington 😂😂😂😂😂
@ Katherine. Buahahaha !
Katherine Harrington LOL
They gave us a bag, but no clip. Over the holidays. I agree that disposable is the right answer. We can't get the adhesive to stick. Plus severe ulcer now. Agree that the velcro gets dirty. And emptying the bag is just too hard for all of the reasons you're saying. I hope there's a better way than what we're doing now.
I’m getting ready for surgery Thursday Morning at 8:15 am. You are so incredibly amazing and have really helped me so much. You are young, beautiful and so honest. I want you to know how incredibly grateful for every minute of these videos. Wish me luck and I’ll be grateful for any and all
Prayers from anyone out there. 😇🙏
To mitigate the problem with cleaning...fold end back always and wipe...then squeegie it back and I wipe again...Then when I clip it...I double fold and run the clip real tight and make sure it clips and that stopped some of those problems.
Idk what I’m doing here but you’re amazing
Thanks you just opened my eyes have a pending surgery so helpful
I use a wheelchair and have a colostomy. I empty my bag by pushing out the poop then pouring a cup of water into the bag. I pour out the poop water then I push in a lot of toilet paper into the pouch. I slowly use the Toilet paper inside and just run it up and down the bag and around the wafer. And done no mess and works amazingly well. No accidents or anything.
that is what I did also
Keri, I wouldn't reuse pouches like this even if you paid me to do it.
She does this as a job. She knows how. Lol
I also take take a empty bottle water and fill with water then fill bag up with water maybe twice and it cleans the bag real well
This works so well to clean the poo near the end of the pouch. I also recommend if you have Bunchy pb texture output that’s hard to remove from the pouch. Adding cold water serves to ball up the poo making it so easy to empty.
Also if you hate clips or Velcro try Coloplast sensura. They have by far the best closure system. You just turn the end twice, then the sides adhere to the end. Whoever thought of the traditional Velcro of hollister where poo gets stuck everywhere needs to be fired. I took one look at that pouch and said this will never work. Plus hollister pouches have a super small output area. Coloplast has wider so it’s a lot easier to clean and empty
This is what I've done since day one! Ice had an ostomy for almost 6years .. To be fair I started out with a colostomy so I was used to non drainables..(had surgery to remove the remaining part of my colon 2 years after my intial surgery) even though they put me in them while I'm the hospital- I went right back to the non drsinables that I knew and loved .. I use holster but at one point I was using coloplast pediatric bags and they were so tiny and perfect for intimacy and beach ... I never felt clean enough - especially keeping the same bag on for multiple days!! I'll even empty through the 'big hole' that connects it.. if I'm trying to conserve bags or just at home and don't care :-) they are so much nicer/smaller/cleaner IMO! Overall I had the exact issues as you did!!
danielle regan I do the same thing! I empty thru the ring to conserve bags! Glad I'm not the only one :D
I switched to closed bags based on this advice. This is about a million times more convenient and less leaky. Also price is not that much different. Thanks!
do you also have a ostomy i am also indian will be getting one soon
I go into surgery next Friday August 3rd and they are giving me an Ostomy. I'm super nervous so thank you for all your vids!
You will be fine. Like anything new it takes an adjustment. Blessings to you!
Just got one myself about 6 weeks ago. I was not having it. It was my biggest fear about surgery was getting colostomy. I have to say that im just starting to get more used to it and realize that it had to be done to save my life. I think about the quality of life and how much better it is to not deal with the medical issues i was experiencing . Might be a bit bumpy at first but it gets better and quicker and thank goodness there are people kind enough to open up their lives to help us...like Maggie! Bless you and wish you the best.
Hi Maggie, I have stage 1 rectal cancer and my surgeon said that since it involves the sphincter muscle , that I will have to have a permanent bag. Are the bags that you're talking about available at the pharmacy. I'm 53 and super nervous and scared
I had my ileostomy about 30 years ago. One of my biggest problems was recurring fistulas, the pain was unbearable, and they were frequent , very frequent. The Dr didn't know why it kept happening. They had to be surgically cut and cleaned and drained. It might start like a small cyst, next thing, it was goofball size,( by now I was trying to find a way to get to a hospital), if let go, it would become baseball size and the pain increased the bigger they got. The biggest one was the size of a good sized grapefruit. When the cut it to release the pressure the relief was unbelievable. At 1st I was embarrassed because it had a vile odor, but the Dr that was doing it said.. that's my job, and if I can put up with it, you'll be able too.He also said that after a while NOTHING would embarrass me. Was that ever prophetic!!!!! When they did my surgery, they took my rectum, and anus , sewed everything up and sent me home I was on hospital only one night. I still have problems with leakage around the stoma. And the skin I'd ulcerated there almost all the time. I try every new product as they come out . I need deep convecity,pouches. Because my belly sinks in around the protruding stoma. I just moved in with my daughter and I am so careful to clean up everything as I go along.I was married 43 years and widowed in 2013. He was very understanding about it, which helped.I just found you and will be watching your videos, maybe you know something that this old lady dosen't. Thanks for your courage and strength, I am sure many people will find it useful. Too bad the doctors don't watch them, then they would have a little more understanding as to what we go thru post surgery and on to the rest of our lives. God bless you and your attitude.
Golf ball size! L o l !
Ive only known one person who had a bag and so i didnt realize they even had a drainable option. My friend had the throw out type.
Maggie you are courageous woman I take my hat off to you just explaining this this got to be horrible for you to go through everyday God bless you sweetheart and my hope is for you that you can get that bag off in and live a normal life without the bag if it's all possible
So sorry you have to deal with this. You have such a great attitude.
I have opaque drainable with velcro no output has ever gotten onto it. I just clean it off with a squared wad of paper and up into the opening then fold it up and away i go. It's just a matter of finding what works for you. I also use the Salts Aloe Rings, work well for any skin irritation around the stoma.
I can’t imagine what you’ve gone through. You know you have to make life work for you. I don’t have a bag, I am not aware of anyone I know in this situation( lack of using the medical terms I don’t know) it just sounds you have a system that works for you and isn’t that what we all do. I have blood clots in my legs, I have to ware stocking that go from foot to crotch. I even have to go to a woman’s lingerie store to get these medical pressure stocking. I always the only man in the store needing help from a sales clerk. Yes my wife loved it and likes to photograph me walking in and out of the store and I don’t mind at all. We just learn how to live. Best wishes to you I am going to watch more of your videos now. Best wishes