Also if you drink a cup of hot coffee about a half hour before changing or cleaning it helps your stoma have a movement and reduces the possibility of movement as you are messing with cleaning it or changing it. Hope this helps someone
@@sidhudal So do fluffernutter sandwiches. On white bread only, spread smooth peanut butter on one piece and marshmallow fluff on the other piece. Works great. Well, unless I'm on antibiotics. Not even a fluffernutter sandwich helps that much.
I'm allergic to coffee so what I will do is change it in the morning and since I haven't eaten in a few hours nothing will come out (unless I ate late or overate)
You are so welcome. I had zero info or help afterwards. I had to learn everything on my own. Knowledge of maintaining isn't really out there, especially from the medical field. But it's not something they can do really, it's a hands on thing , from those who have been there
My husband had emergency surgery and ended up with a colostomy. The small local hospital didn't have an ostomy nurse and 1 hour before discharge a nurse came in to show us how to change bag and a print out of directions (!) Needless to say the internet became our best friend for information.
Wow. It amazes me that we have such a huge gaping hole in health care with this issue. My hospital had a nurse and she tried to help but there are so much they dont know. I surely hope you are adjusting. I am 9 wks with a stoma and have challenges but try to stay positive. I learned so much more from these sights than from the hospital.
When I had my first surgery and had a Colostomy I only had it for a few months then my life changed when whey took all of my large intestines and most of my small, I was left with only 4ft of small intestines, my still is all watery, I had a nurse in the hospital but when I went home I was left to fend for my self, to make the story short, I use a urine bag for my iliostomy, my poo is watery so I found that urine bag is best for me and soooooo much easier to use and less messy. I hope that helps for those who have water stools. God bless you all 🙏🙏
m@@thewisepowerchair2369 I wasn't aware you can use a urinology bag for an ileostomy. Aren't the stoma's different and in different locations? I lost my entire bowel and half of the small intestine, of which gave me Shortbowel Syndrome which is basically constant diarrhea. I live in a constant state of dehydration and malnutrition which requires 3 days every week in the infusion unit for electrolyte replacements, fluids replacements,, venifer and B-12 injections for the rest of my life in order to hopefully keep me alive! How is the urine bag better than ileostomy bag? People don't understand how debilitating it is. I can't leave the house unless I fast for fear of bag leak or bursting! It has happened too many times that I am desperate for an answer to get some part of my normal life back! This other bag sounds intriguing and I will definitely look into this. Thank you for giving me some hope! All the best to you!💕
Try to avoid watery stools. Eat foods that thicken and take medication for thickening it as our bodies can't absorb the goodness from our food if it passes too quickly thru our intestines. Just learnt this.
I'd heard that Marshmallows could be used to thicken output but hadn't thought of using them before a pouch change. I think it could also be used beforehand if you wanted to take a 'naked' shower as it could lower the output while the barrier and pouch are removed (I try to take showers first thing in the morning when I planned to change the barrier anyway and last ate a few hours before bed)
Thank you for these tips. I've just begun encountering colostomies as a nurse and knowing of your experiences is going to be so helpful with educating patients! Appreciate the content!
My experience the doctors and nurse no one tell you anything you have to figure it out on your own it should have somewhere to go where you could dicuuss these differences many people would like to know
there have been times when I had nowhere to go but behind a dumpster and empty out the bag. It helps to have some wipes or paper towels in your car to keep from shitting on your shoes. This is real.
Hi everyone. It is best to get involved with people that have an ostomy - ostomy groups and videos and chats. There are thousands of us out there who have colostomy ileostomy urostomy. We are all here to help.
One week post placement of my colostomy here in the UK. Can’t believe yours is the first US video and only second overall. Excellent, thanks 👏🏿👏🏿👏🏿🙏🏿🇬🇧
Hey there, have had an ostomy (ili) for 20 years and I have learned more from your videos than anyone else... especially "pancaking" thank you for being so brave! Did not have an ostomy nurse or anything but experience! I am a 71 y/o Veteran and my birthday is tomorrow.. So thanks for the B/day present!
Aw, happy belated birthday 🎂 I've just had my Stoma 3 weeks. I had Sepsis and woke up in Intensive Care with it. I had to have extensive surgery down below, 3 times. I have a Wound Vacuum which I'll leave Hospital with and a Catheter. I'm blessed to be here. I was very ill. I've had a lot of issues due to the Stoma bag not sticking. My skin is broken and bleeding, it's causing the issue. Hopefully it will settle down. Best wishes from Northern Ireland 🇬🇧 🙂
A lot of this info is now included in the ostomy certification so newer ostomy nurses are aware of it by now, and hopefully ostomy nurses are doing the job of keeping updated. Thanks for the video
My Ostomy bag was installed late February 2023. Thanks for the frank discussion. I am 70 and retired so I have less problems than younger people. I use vented bags and have a clothing staining problem. Not sure of a good resolve for that yet. Olive oil sounds like something I need to incorporate for pancaking. Cooking spray may be easier and faster
Thank you so much! This comment just made my day. Unfortunately, there is no magic guide for learning how to cope with devastating medical issues. My best advice to new ostomates is that whatever you're going through, don't lose hope. Sorrow, frustration, anger, disappointment--they're all part of the process. My mom always reminds me that it's okay to be sad but it's not okay to give up. That's something I'm still trying to master every day. Wishing you all the best. 💖
Awesome. So good to see that and appreciate you sharing so openly. I have been 103 days ripping that thing off every day and putting it back on but my stoma has prolapsed and I struggle to fit it by myself. I have a Colyostomy and I loop Ileostomy and I’m struggling… a great deal. Just to empty and to live life and interact with my partner. because I worry. Im just a little lost right now because they changed me. Im ugly now and I can’t fix it. There’s no gym. There’s no drugs there’s nothing. But there’s beautiful support from my friends and family but that doesn’t mean shit right now…
When ever possible, I change my wife's ostomy mount in the morning before she consumes anything. 95% of the time her stoma is "quiet" during the whole process. Love the marshmallow suggestion!!
When I wore the adhesive/tape ostomies, I showered in the morning. So, I've been fasting 8+ hours. Since I'm severely allergic to tapes and adhesives, I wear a Perm-type appliance with semi-permanent vinyl bags. No worries with when to shower because you have no prep work, no measuring and no worrying if your skin is dry enough. Take it off. Wipe it if it needs it, shower, dry off and put it back on. Or if you prefer to use adhesive, you can shower with it on. Just dry it off or use a blow dryer. The face plate won't break down whether your skin is irritated and/or feverish. You can use lotions, scented wipes and body wash on that part of your skin, too. The face plate is hard rubber. No tape or adhesives necessary. But that means I have to wear a belt for security. I also use bits of a Karaya washer. It's like those Eakin Seals, only softer and a dark brown color. It heals any broken skin under your appliance. The con: if you don't have insurance, they can be pricey. But, for people with severe allergies to tapes and adhesives, it's totally worth it. Now, my dark purple skin that would weep is now almost the color of my normal skin. Also, I sleep on those pink hospital pads. It definitely saves me from washing all my bed covers whenever I leak. I just have to wash the hospital pad. Get a few of them.
Iv had a ileostomy and now I have colostomy and it's a learning curve for both I found that changing before I eat or drink anything in the was best for my ileostomy but now I change at night before bed so my filter isn't blocked with stool and it's not filling with gas through the night
Have had a big pancaking problem constantly.One day after eating well nothing was coming out into the bag.Oh oh I thought it must be pancaking.I didn't have the Brava product so I tried a little olive oil.I wasn't expecting much results if any.I was shocked how stool was immediately going into the bag where it belongs.Thank you!
THANK YOU! I have an ileostomy due to a Crohn's bowel resection and fistula repair. There was a 50-50 chance that I would not have one but lo and behold when I woke up from surgery, there it was. I had literally been praying for weeks that this terrible nightmare would not happen. I am thankful that my surgeon says it is temporary but in the meantime it has been very stressful for me. The day before I was discharged from the hospital, I had to go through seven bag changes in one night because it kept leaking and it has all sorts of peristomal skin damage. I'm finally slowly starting to get the hang of things but these tips are so helpful to me. I now keep marshmallows in my nightstand so that if I start having a leak in the night, I can start eating them before I have to go to make an apparatus change. Fortunately I'm happily divorced so I don't have to worry about someone questioning the presence of marshmallows in my night table. And my dogs don't really mind as long as I share the marshmallows with them once in awhile.. in all seriousness though, thank you for your candor and this great advice. This has been very emotionally traumatizing for me and these tips are helpful
I have had an ileostomy stoma for 27 years. I am now 82. In 2918 at the age of 75 I remarried , your stoma should not define who you are …..it’s a mark of courage as someone pointed out to me. Good wishes to you. Xx
Thank you so much 👍 I have ovarian cancer and am having surgery soon and they will be removing part of my colon and I was told I will be getting a stoma and need ostomy bag. I was lost on all this so this really helps in advance ❤
I've had Kermit, my ileostomy, for 8 years. My output is always thick and I get a lot of problems with pancaking and resulting seeping under the bag and skin irritation which needs to be dealt with straight away when it happens. I use the Brava lubricating deodorant, which is great. The main reason for my leaks is a parastomal hernia which has already been repaired twice and I'm awaiting surgery for a third attempt. It means much more frequent bag changing than there should be. I see you use the same bags as me! Great, aren't they. I haven't seen a stoma nurse for several years as I manage everything OK, but initially they were absolutely brilliant. Nothing fazed them when I was freaking out because of constant leaks and other problems, until I eventually went on the convex version of the bag and that sorted the problem. I could never get on with rings or seals - they just made the problem worse! I am now in my 70s. I had ulcerative colitis all my adult life (misdiagnosed as IBS in my 20s until my first routine colonoscopy screening for colon cancer came up with the correct diagnosis. 18 months later I had a second colonoscopy and they found a large stage 3 tumour, so I am now completely without a colon for life. Best thing that could have happened in the long run, despite a year out of my life having scans, surgery, chemo etc., because it completely dealt with the inflammatory bowel disease and having the bag is liberating, once I'd got through the initial teething problems. Not to say I haven't had major problems with subsequent surgeries because of the hernia and an obstruction, and post-operative sepsis in 2018 which nearly killed me! I'm still here, though, and still smiling!
Something else that helps me with breaking out is using plain yogurt. I get yeast around CJ when on antibiotics. My aunt told me put yogurt on for few minutes, wipe off and go. Works better than the pills
I’ve had a stoma since I was 6 and I’m 21 coming 22 what I do when emptying the back instead of sitting down and putting the toilet paper in the toilet I find that just kneeling down and empty it hardly ever get splash back
That's a great suggestion. Thank you so much for sharing. The GutSquad is fortunate to have the benefit of your many years of experience. Wishing you 15 more years with a healthy stoma!
We have to be our own advocates nowadays. Try fluffernutter sandwiches. Use white bread only. Spread one piece with smooth peanut butter and one piece with marshmallow fluff. That works awesone at really slowing the flow.
Hubby just got his ostomy Wed this week ..I got the smug look why haven't we read the 400 page booklet?..maybe because I haven't slept more than 6 hours in one week..hubby has parkinsons with probable Lewy body dementia ..so I will be caring for it...he has a stick through his stoma...I think that comes out in about 2 weeks .The prices on Amazon are well pricey..I am so so grateful for all the info...Marshmallow tech sounds so 😉 sweet 🤣🤣omy gosh u have a fabulous variety..where did u find them?
Thanks so much!! Friday will make it a month I've had my ileostomy. Fingers crossed I will only have it for a couple months. My dr is gonna reverse it when my jpouch heals up. But my family has the biggest family with FAP. But thanks for the tips. I also been having problems with pancaking so thanks I'm gonna try that out. My aunt Also told me about the marshmallows. Definitely gonna try that too lol.
@sylviaedwards7749 FAP run in my family as well and I'm dealing with it just over 25 and half years, but my 2 brother's and one sister are fine so far, good for them. I went through a Whipple surgery last year and it was major surgery and went through a total hip replacement just over 2 weeks ago and 4 more surgeries too go. I'm 54 years old. I hope this finds you well.
@sarahlouisestafford2448 omg I'm so sorry your having to go through this. I definitely will keep you in my prayers!!! Please God be with Sarah as she has gone thru so much already and continue to be with her as she has more surgeries. Be with her, her family, all the Dr's and nurses. Touch them all Lord. There's nothing you can't do. Heal her and take away all her worries and pain Amen!!! I hope this helps you. Thanks for taking the time to comment on my comment. Maybe we could stay in touch. If you want. God bless you!!!
@sarahlouisestafford2448 I'm 31 years old. My mom has had her ileostomy for 16yrs and my grandma has had hers for 32 or 33ish yrs. My great grandma had one. I have alot of aunts n uncle and cousins that have one as well. They have theirs permanently but I'm praying that I will have my reversal surgery by September or October. I have a pouchosopy the end of August.
"Splashback" seems like a very tiny problem in the LONG list of problems there is. Best way to deal with that is take your bag off and move it closer to the toilet bowl, simple. My main question is who do I talk to to help me with stuff if I've never seen an ostomy nurse in my 3 years of having a colostomy? My second problem is how do you keep it sealed when you have liquid shit? My third question is why is adapt paste so useless?
Best are marshmallow treats(rice krispies n melted marshmallows) ❤ I eat that almost every day w/ 'Monster' 👻 (my Illiostomies nameI😊) I figured it out myself over 2 years ago! Helps ALOT! 😘😜
Recycle your empty deodorant bottles. Mix baby oil and water in the bottles and carry along to rinse out your bag after emptying. Cleaned out the bag nicely and lubricant the bag for easy emptying next time. I also installed a bidet to rinse out my bags. Mine is also an ileostomy and empty about every 45 minutes to 1 hour. If I really push the fluids it can be every 20-30 minutes. I have itching so bad anywhere the appliance touches the skin I sometimes think I’m going to go crazy. I go through times where I change the bag everyday and the most I go is every other day. Between the itching and I personally think a bag is pretty disgusting looking after 2 days. I’m not sloppy dumping the bag but it still get nasty looking. I rinse and wipe but the bags get food stains and I will not use ones with clear fronts. Ugh! I can’t imagine what people put up with colostomy bags. At least 90% of mine are liquid and just dump right out
For me marshmallows technique only gave me about 30 minutes. I use lucky charms marshmallows I try to change everything in the morning as soon as possible
It’s not terrible. I was originally hoping to keep my rectum and anus but the cancer didn’t allow that and now I have a colostomy. It is pretty easy to manage. I’m just here researching ways to keep small amounts of poop from collecting behind the soft plastic that adheres to your skin and causes minor irritation.
Hi JD! So sorry for my late reply to your question. In hindsight, I should have given a demonstration of lubrication application in my video. The idea is to get the lubricant evenly distributed within your pouch. I apply the lubricant by squeezing it into the bag through the hole I cut in the wafer before applying the bag to my stoma. That way, it gets all over the interior of the bag and the stool can easily slide down as I output throughout the day, avoiding pancaking and keeping the bag smelling fresh. I regularly pour the lubricating deodorant into the spout of my bag every day to help maintain this effect until my next bag change. I hope this helps. Please let me know if you need further help or have other questions!
@@CecilyLivingBeyondtheBag Thabk you for your response. That’s actually what I’m doing but it really does not prevent pancaking. I have OCD and when stools penetrate around and inside the ring of my skin barrier, I don’t stop cleaning until it’s totally clean. It takes me between 10-20 minutes to clean the skin barrier. I wrap napkins around the skins barrier to prevent this but sometimes, it does not help. I would greatly appreciate any other suggestions you may have. Thank you for your time. Take care.
Ileostomy: This is why I favor a two piece snap on appliance with a proprietary turtle collar. I can empty, rinse open and clean most of any pancake with a wet TP Then step into the shower and spray what little is left while the plate is attached to me. For me it does not affect the faceplate adhesive paper, or the flexible wafer around the stoma.
I have an illiostomy. Had a blowout this afternoon. Hasn't eaten for 16 hours. Still pancaked and blew out the sides. My stoma is concaved. Any suggestions?
Do you have any suggestions for the pancaking that doesn't involve the lubricating deodorant? That product just doesn't seem to work for me for some reason, so I am constantly squishing down my bag and having to pull the top edge back up cause it will stick to itself. I almost always have really thick stool. The only time I get liquid stool is if I don't eat, but drink a bunch.
I'll tell you for a woman you certainly do have balls. Emptying that bag in front of everyone takes guts. You did a good job with this video. I had an ileostomy for 4 months and it was the most miserable time of my life I had to live with that parasite stuck on me and I got to watch it fill up with my own stool. The thing have you ever stopped it was always running. It was normal for me to empty the pouch 12 times a day. I would kneel in front of the toilet and hang the bag over and empty it and that smell would get me right in the face. I have smelled burning flesh decaying bodies in the smell of that output is worse. Because of that I would never go to anybody's house. Several times it sprung a leak. One night in bed I rolled over and put my whole weight on it the seal burst and it was liquid stool all over me all over the sheets everywhere. One time I was having intercourse and it came loose it got stole all over my partner and me. I'm sitting in a restaurant and I looked down and I see this wet spot getting bigger it was leaking at the seal by the time I got home I had liquid stool all down my legs and everything else below the waist. I hated that thing
Hi Cecily, it was very helpful to watch your video. I have a question, is it normal to have sudden sharp pain either where the bag is or on the opposite side of the stomach? I had some yesterday and now they are gone. I was worried; I have access to an ostomy nurse, but not on the weekend. Thanks.
Wow! I just experienced this…near the stoma & on the ither side of my belly button…sudden sharp pains!😩Not something continuous but when they hit it HURT! I figured maybe its my intestines tryna move food through🤷🏽♀️.
To prevent toilet splashing, I empty my bag into a medium size bowl and dump that into the toilet. I live in Thailand and almost every toilet has a sprayer (like you often find on a kitchen sink) connected to the toilet water supply. This comes in very handy for rinsing. If you know someone a little bit knowledgeable about plumbing, it would be pretty easy to install.
Me neither, Brandon! My surgeon never mentioned the possibility of prolapses until it happened to me. I feel that surgeons and ostomy nurses should do a better job of explaining what can cause a prolapse and how they look so people aren't going into surgery blind, but I understand that they don't want to scare their patients. In any case, I'm glad you know now and have an idea of what they look like!
I was worried about mine prolapsing because the reason I had to have the surgery is cause of stage 4 pelvic organ prolapse when I was 15. But surprisingly mine didn't prolapse. I can't imagine the struggles that come with a prolapsing stoma
Super great info. I am 64, had iliostomy on march 2021, super great health condition, motorcycle adventurer. Found colon cancer, and know with iliostomy, my life has changed 180 degrees. I am very thankful of the information you post on your videos, it is so helpful. And congratulation for your breveness of making this videos. Thank you very much. Regards from Mexico
And, so you know, after 8 months of my surgery, today I continue with my adventures, this past weekend made a 6 hour off road ride, I felt great, but before ending my ride, my wafer came off and I felt how lots of stool was coming out on my body armor, pants etc. But I was so happy thinking that that was just uncomfortable, my health is perfect, and I accomplished a great adventure.
Well done! Having an ileostomy shouldn't change your life and it's great to hear about your motorcycle adventures. Getting Kermit (my ileostomy) 8 years ago was liberating for me, releasing me from being tied to the toilet with an inflammatory bowel disease! It sounds odd to be thankful for colon cancer, but I am, because it sorted the problem! My life was also changed 180 degrees - for the better!
Hi Cecily thank you for your help. I have just become an Ostomate after having my J-Pouch removed and also my rectum & anus. One tip I use is that after emptying my pouch I add a 1/2 cup of water and close the bag to be able to swish the water around the inside and clean out the bag, then release it and close the pouch.
Hi there, Iggy! Thanks so much for your comment--I think many ostomates will benefit from this tip. In my experience, washing out the bag helps to prevent pancaking and keeps the odor to a minimum. Do you just keep some water handy or do you have another method? I used to have a hose bidet on the side of my toilet at my old apartment and it was soooo useful for emptying/rinsing out the bag. Great advice 👏
I am 8 weeks into my ostomy. I had a great ostomy nurse in the hospital. But like you mentioned she hadn't had an ostomy. So for some of the practical day-to-day stuff she would respond "You'll figure it out, everyone does". This is the first video I've found (I'm sure there are others that I haven't found) that did not only explain the TP splash back remedy, but showed it! Not only to help with splash back, but also just showing your positioning, etc. Seeing it done by someone else has been the single most helpful thing for me to this point! Thank You!! No colon, keep rollin'!
Right I have had mine since May 2nd and the Dr just released me to go back to work this week on the 28th but I'm not on any restrictions because it's been 8 weeks but I do maintenance at work. I really think I should have restrictions. They don't have a bag so they don't know. Thank God my mom n other family members have it so I can call on them if I need help. They told me to be careful because it could mess up on me at work. How embarrassing would that be smh
Seeing her emptying in to the toilet by straddling across the toilet seat was new to me. I have been an Ostomate since August 1994 -.almost 30 years now. I find it much easier to kneel in front of the toilet and hold the bag over the rim. I always add toilet paper to the bowl first. Before emptying I tip some water via a jug into the bag opening, give it a swish, then empty into the bowl. I then give the bag another swish with the water jug until the contents of the bag are clear. Hope it helps 🎉
Hope you are doing well, a year on from your comment. I'm 8 years in, and so grateful for it. Changed my life for the better! Getting help and advice from fellow ostomates is the best thing - stoma nurses are great especially at the beginnning to get you started, but for day to day stuff there's nothing like experience.
I have to kneel in front of the toilet to empty mine. In men's restrooms it's absolutely disgusting. I'm 4 months in and hoping for a reconnection celebration in the coming months. It's been incredibly difficult adjusting to life like this. I applaud anyone that's living life with an ostomy. I've felt work early the last two days due to a breach. It's a very humbling experience.
I feel you on this. I've had my iliostomy done just one week ago and I'm feeling super down. I was told I could get a reversal in 3 to 4 months I hope that time-line is correct
@@elisendamurillo5165I also had mine 26th of August it prolapsed and had to go to get it refashioned when it prolapsed. Now it's retracted and has many leakages , but I try to remain positive and research on ways to fix it however in my country which is a 3rd world we don't have many colostomy products so have to wing it with substandard things
Brava skin protective pads are a LIFESAVER to prevent pancaking, especially severe pancaking as the wafer adheres to the pads MUCH better than your skin, so even VERY firm stools wont typically be able to cause separation. This is very helpful info, thank you!
Thank you, you are a blessing. I’m one month in on my new stoma and the nurse was very rushed and I saw her twice the whole week I was in the hospital. You have no idea how much I appreciate this video.❤
Oh my goodness you are a God send! I am 1 week into this and wow! It was an emergency surgery we were trying other avenues in 2 weeks + hospital stay. 😮 I recd 3 , 30 minute lessons as a prize! So I am not sleeping yet maybe 2 hrs a night, when I accidentally found YOU! Thank you thank you thank you
Hi Brenda, I’m so glad you found the channel. An emergency surgery is so hard on the body and mind; I sincerely hope that your recovery gets easier. With time, I’m sure it will. Sleep will also come with time. At first, ostomies output a lot because your bowel hasn’t adapted to re-absorbing enough fluid in the small intestine to make up for the loss of the colon (or, in some cases, parts of it). Adding that nearly constant output to the immense pain of abdominal surgery, sleeplessness is usually the hardest part of being post-op. I promise that things will get better. Please let me know if you need more advice. I’ll do my best to help! 💜
@@CecilyLivingBeyondtheBag I thank you again for the advice. Still haven’t a nurse promised me ended up back in the hospital with straight blood no mix and the hospital where I had it done is 25 min away when going over speed limit! All regular doctors were in shock. No one had ever seen such b4 . They couldn’t after 3 days of observation figure it out. I am supposed to see the surgeon who did the surgery in the morning at 9:00 now my ride says they can’t take me after a weeks notice. They told me 20 minutes ago! And he was to determine if another surgery is necessary or medicine or home nursing. Geese.
Thank you so much for the tips your sharing. I became an ostomate a month ago and I'm learning so much from co ostomates and their experiences that have proven so valuable. I'm learning something new from every video that I've been watching that only come from experience not theory. Looking forward to more posts from you !
Hi Angel! You are so very welcome, I am really happy that some of my tips could be of use to you. I am a firm believer that when it comes to ostomies, the best teacher is experience. I remember when having a stoma was new to me and everything felt so foreign, but I promise that everything from bag changes to eating right to sleeping soundly and leak-free will become second-nature with time. If you're not already following Ostomy Buddies and The Real Ostomy Support Group on Facebook, I would highly recommend joining those groups. They are full of encouragement, advice, and are also just a great place to vent. Wishing you the best of luck; please let me know if you ever have questions. I'll be happy to answer them as best as I can. ❤️
Thanks so much for your info! I watched your video while still in the hospital and now 2 weeks with my new friend, it makes more sense. With swelling changing daily, it's been hard to keep up with leaks. A lightweight elastic "girdle" helps support the bag while the new stoma stitches are tender. Also learned that cutting the wafer offset from the center hole, or turning it sideways makes the stiff backing shorter between the stoma and belly button. Less pinch and no more leak! Best discovery is the lubricant & deodorant. I'm super self conscious about being stinky. Had a little necrosis on edge of stoma and EXTRA bad smell! The lube- -deod helps the smell, but makes emptying a quick slide then the bag looks new. It's a weird life change, but cutting pain is so worth it! Thanks for all the help and advice- you are so strong and so inspiring!
Thank you for your video. I'm dealing with colon cancer and was told I will have a permanent ostomy. My cancer has affected my self esteem and I feel really down about what's going on. Your video was informative and refreshing.
Thank you so much for sharing, Richard. I’m deeply sorry about your diagnosis. Ostomies are intimidating, but I believe a better life awaits you on the other side. Please stay strong! 💪🏻
I get it bub. .I've had mine for 18 years in February. Sometimes it bothers me too. My ex gf has had my back for a few years now. She's gotten me out of some dark scary places. You gotta keep your sense of humor, it helps
Richard, someone told me that folks who name their ostomies take better care of them. My colostomy's name is Rosebud Poopybutt and she is a real cutie! Rosebud has become like her own 'person' and I celebrate her birthday every year (April 1st). She will be 8 years old on April 1, 2022. One of the things you can do that will help you the most is not to be ashamed of your ostomy. No need to take special pains to cover up or disguise your ostomy under your clothes. Wear what you want, when you want. I had Rosebud put up on my midriff because I usse her as a teaching tool when talking with people and encouraging them to get that colonoscopy, lest they end up with their own colostomy. Rosebud came about because I had Stage 3-C Rectal Cancer that was growing out my butt. (I thought it was just hemorrhoids - but what did I know?) The longer I have my stoma, the more I love it because it lets me live my best life. No more racing for a bathroom. No more messes. No more anxiety. Life is way better with Rosebud and I wouldn't trade her for anything!!!! I sure do hope you're doing well and feeling much better about life in general. Over time, things definitely will get much, much more comfortable. You and I have both beaten cancer!!!! Your colostomy has given you years more of living!!!!! Enjoy them!!!!!
Hi Richard, I've had an ileostomy for 14 years and I feel like yourself, my problem is I'm too conscious of needing to use the toilet when I visit anyone or have to go out socially so I've kind off stopped. It's not that I'm glad you have self esteem problems it's just that videos I've watched seem to be from people who don't seem to mind and are confident. I so envy them and wish I could be like that as well. Maybe we'll improve I really really hope so. I wish you all the very very best.
I got the same diagnosis about a year ago too but I thought I was gonna keep the use of my rectum. Well that changed and Ive adapted well to my stoma after 2 months. Richard, how are you doing brotha. Let us know.
Thanks for the tips, I recently took a long flight and had to use the toilet. I used the technique of “lining” the toilet with a couple of pieces of toilet paper. Flushing worked much more easily with a single flush, I even traveled with marshmallows 😊 so you can control output while you’re travelling.
So glad I just found you by accident. Thanks so much for doing this. I am one month in on this unexpected life changing experience. So nice to know I am not alone. My Ostomy Nurse told me about the marshmellows yesterday and also introduced me to "crusting" to help with my skin issues.
Yes. the toilet paper in the toilet first works well. The other thing is something a nurse told me about. When you are changing your bag, roll up a piece of toilet paper or paper towel and put it in the stoma opening. Nothing comes out. At least that works for me. Thank you to this lovely lady for sharing. So much help I have found on sites like this. They are a blessing.
You are so brave and just so beautiful and upbeat it’s really thoughtful and thought provoking- what most may take for granted and still not have such a positive attitude. Girl you have grit and a great personality!! Kudos to you beautiful soul, thank you 🙏🏼
I have found in the 2+ years with my ostomy, if I drink up to 1/2 gallon of fluids a day, my output is liquids. If I fail to drink this amount, I am constipated. Mine is a cross between an ostomy and an ileostomy.
Thank you for being so explaining.. its good to know that I'm not the only one... trying to come to terms with this change of Life... God bless you, xx
You’re so welcome, Simone! You’re definitely not alone…please don’t forget that. Ostomies are difficult to manage and care for. It takes a lot of time and patience to cope, but it does get better. Just take a few breaths every now and then and remind yourself that it really will be okay 💜
I am due to have a Colostomy soon. I am scared but know that I will have a better quality of life albeit problems from a bag of my own waste at my side and intestines through my abdomen. I do not think there is such a thing as 'problem free'.
@@CecilyLivingBeyondtheBag Cecily, I have my ostomy just over 25 and half years. For splashback, if I kneel and empty it then, no splashback . Did have to stand up to empty it a few days this last 2 weeks, due to having a total hip replacement, while waiting for a raised toilet seat and it took me a wee while too get used to emptying it siting down. I now aim for the side of the toilet bowl, no splashback. Happy days 😅 Changing the bag. I find if I change it in the morning immediately after I eat, 5 mins I have the bag changed. It doesn't get time to act. My ostomy nurse is no great help to me, so I just figure out things for myself. I had more surgery last year and the surgeon and his team didn't tell me everything last year as I was told by a nurse. just a day before I had the total hip replacement, that I had a pulmonary embolism in my lung, last year, imagine the shock I got. We do need a sense of humour. Sorry for the long comment. I hope this finds you doing well. I'm only 54 years old and when I got the ostomy I was 28, I had polyposis in my colon and the surgeon in my local hospital thought it might have been cancerous, so by the time I had the surgery, I found out it wasn't cancerous.
Pancaking: I've been told to put a drop of vegetable oil in the bag opposite of the stoma. Not putting pressure on the region where the stoma is , I guess also helps. Give the "things" a chance to drop into the bag.
Great tip! Thank you so much for adding this, it is really important to get the oil/lubricating agent on the side opposite to the stoma. I love ostomy hacks that only require a quick trip to the grocery store rather than having to order a bunch of expensive medical supplies.
@Paul McinnisNot really practical in a public restroom. Also I tried this and had some accidents if the output was too liquid. I discovered that if I stack three large kleenex and hold and fold under the bag I can really slow the output before it hits the water, and it contains most of it. Sometimes I missed the tissue I would place and then there are the new toilets that flush the paper before you can use it.
Splashback is caused by hydraulic rebound much like a trampoline. I found that if you get into position hold your bag valve with one hand and flush your toilet it will vector hydraulic pressure away. You really want to let the water to start receding before you release the valve but you will see zero splashback. The only downside is you will be flushing your toilet twice since you have some cleanup work on your ostomy bag after the dump. An extra flush is worth the next to zero splashback in my mind. Good luck all
I have too many issues with leaking from the barrier. I use Glad Press ‘n Seal over the bag to help and it has helped avoid some embarrassing situations.
@@debtreat7382 I just use a large sheet of Glad Press ‘n Seal and stick it over the entire bag and press it on my stomach. It won’t stop leaking but it buys me a few minutes and might save me from disaster. My stoma is very small and does not rise very high from the skin that is why there is a problem. Dr said my colon was too damaged from radiation to create a larger stoma.
Very helpful. As a nurse (not an ostomate), I’d recommend this video to my patients.
Thank you so much Mary--that means a lot to me.
Also if you drink a cup of hot coffee about a half hour before changing or cleaning it helps your stoma have a movement and reduces the possibility of movement as you are messing with cleaning it or changing it. Hope this helps someone
Marshmellows sloooow it all down.
@@sidhudal
So do fluffernutter sandwiches.
On white bread only, spread smooth peanut butter on one piece and marshmallow fluff on the other piece.
Works great.
Well, unless I'm on antibiotics.
Not even a fluffernutter sandwich helps that much.
I'm allergic to coffee so what I will do is change it in the morning and since I haven't eaten in a few hours nothing will come out (unless I ate late or overate)
@@gimygaming8655 you can drink warm water or hot tea. Anything hot
@@pamelamayeaux7458 oh good to know!!
As a home health nurse, I appreciate all of your tips, and experience! Thank you so much!
You are so welcome. I had zero info or help afterwards. I had to learn everything on my own. Knowledge of maintaining isn't really out there, especially from the medical field. But it's not something they can do really, it's a hands on thing , from those who have been there
My husband had emergency surgery and ended up with a colostomy. The small local hospital didn't have an ostomy nurse and 1 hour before discharge a nurse came in to show us how to change bag and a print out of directions (!) Needless to say the internet became our best friend for information.
Wow. It amazes me that we have such a huge gaping hole in health care with this issue. My hospital had a nurse and she tried to help but there are so much they dont know. I surely hope you are adjusting. I am 9 wks with a stoma and have challenges but try to stay positive. I learned so much more from these sights than from the hospital.
The dietian was lousy, the case Manger was non-existent. This was bas guys!!!
Fourteen months from surgery and still struggling with leaking. 😢
@ediereay7507 Oh my goodness. Why? I'm so sorry! I'm a month and a half into my colostomy and still learning. I hope you are doing ok. ❤
When I had my first surgery and had a Colostomy I only had it for a few months then my life changed when whey took all of my large intestines and most of my small, I was left with only 4ft of small intestines, my still is all watery, I had a nurse in the hospital but when I went home I was left to fend for my self, to make the story short, I use a urine bag for my iliostomy, my poo is watery so I found that urine bag is best for me and soooooo much easier to use and less messy. I hope that helps for those who have water stools. God bless you all 🙏🙏
What is a urine bag?
@@dewarsbramangus A urine bag is usually for those with urostomies. It has a spout which, when opened, releases the liquid.
m@@thewisepowerchair2369
I wasn't aware you can use a urinology bag for an ileostomy. Aren't the stoma's different and in different locations? I lost my entire bowel and half of the small intestine, of which gave me Shortbowel Syndrome which is basically constant diarrhea. I live in a constant state of dehydration and malnutrition which requires 3 days every week in the infusion unit for electrolyte replacements, fluids replacements,, venifer and B-12 injections for the rest of my life in order to hopefully keep me alive!
How is the urine bag better than ileostomy bag? People don't understand how debilitating it is. I can't leave the house unless I fast for fear of bag leak or bursting! It has happened too many times that I am desperate for an answer to get some part of my normal life back! This other bag sounds intriguing and I will definitely look into this. Thank you for giving me some hope! All the best to you!💕
Try to avoid watery stools. Eat foods that thicken and take medication for thickening it as our bodies can't absorb the goodness from our food if it passes too quickly thru our intestines. Just learnt this.
Thank you for this video. I’m just over 2 months into living with a colostomy, so things are still new for me.
I'd heard that Marshmallows could be used to thicken output but hadn't thought of using them before a pouch change. I think it could also be used beforehand if you wanted to take a 'naked' shower as it could lower the output while the barrier and pouch are removed (I try to take showers first thing in the morning when I planned to change the barrier anyway and last ate a few hours before bed)
Thank you for these tips. I've just begun encountering colostomies as a nurse and knowing of your experiences is going to be so helpful with educating patients! Appreciate the content!
My experience the doctors and nurse no one tell you anything you have to figure it out on your own it should have somewhere to go where you could dicuuss these differences many people would like to know
there have been times when I had nowhere to go but behind a dumpster and empty out the bag. It helps to have some wipes or paper towels in your car to keep from shitting on your shoes. This is real.
Hi everyone. It is best to get involved with people that have an ostomy - ostomy groups and videos and chats. There are thousands of us out there who have colostomy ileostomy urostomy.
We are all here to help.
how old r you?
I would love to make ostomy friends. I'm new at this. Friday will be a month I've had my ostomy.
Fantastic tips. I just had a reversal on January 20th. I wish I saw your video sooner. God bless you.
One week post placement of my colostomy here in the UK.
Can’t believe yours is the first US video and only second overall.
Excellent, thanks 👏🏿👏🏿👏🏿🙏🏿🇬🇧
Hey there, have had an ostomy (ili) for 20 years and I have learned more from your videos than anyone else... especially "pancaking" thank you for being so brave! Did not have an ostomy nurse or anything but experience! I am a 71 y/o Veteran and my birthday is tomorrow.. So thanks for the B/day present!
Aw, happy belated birthday 🎂 I've just had my Stoma 3 weeks. I had Sepsis and woke up in Intensive Care with it. I had to have extensive surgery down below, 3 times. I have a Wound Vacuum which I'll leave Hospital with and a Catheter. I'm blessed to be here. I was very ill. I've had a lot of issues due to the Stoma bag not sticking. My skin is broken and bleeding, it's causing the issue. Hopefully it will settle down. Best wishes from Northern Ireland 🇬🇧 🙂
Happy Birthday!
A lot of this info is now included in the ostomy certification so newer ostomy nurses are aware of it by now, and hopefully ostomy nurses are doing the job of keeping updated. Thanks for the video
Who gets a new ostomy nurse? All the ones I got were oldies that thought they were experts and wound up in wound care because they were total duds.
My Ostomy bag was installed late February 2023. Thanks for the frank discussion. I am 70 and retired so I have less problems than younger people. I use vented bags and have a clothing staining problem. Not sure of a good resolve for that yet. Olive oil sounds like something I need to incorporate for pancaking. Cooking spray may be easier and faster
As it turns out, I use Vaseline to prevent pancaking. I use a 1 3/4×4 inch Band-Aid with no adhesive on two sides over the vent
When I run out of the deodorant lubrication I use baby oil. So far its worked to stop pancakes in my ileostomy.
Your video is so educative. You got a subscriber. I'm so glad I found your video so I can share it with my patients. :) :)
Thank you! It took me a year to figure all this stuff out, but all good to know.
You are such an inspiration!
Thank you so much! This comment just made my day. Unfortunately, there is no magic guide for learning how to cope with devastating medical issues. My best advice to new ostomates is that whatever you're going through, don't lose hope. Sorrow, frustration, anger, disappointment--they're all part of the process. My mom always reminds me that it's okay to be sad but it's not okay to give up. That's something I'm still trying to master every day. Wishing you all the best. 💖
Awesome. So good to see that and appreciate you sharing so openly. I have been 103 days ripping that thing off every day and putting it back on but my stoma has prolapsed and I struggle to fit it by myself. I have a Colyostomy and I loop Ileostomy and I’m struggling… a great deal. Just to empty and to live life and interact with my partner. because I worry. Im just a little lost right now because they changed me. Im ugly now and I can’t fix it. There’s no gym. There’s no drugs there’s nothing. But there’s beautiful support from my friends and family but that doesn’t mean shit right now…
I've used mineral oil for years to help with the stool being able to make it down the bag. Thank you for your video.
I suppose after 30 years of living with a stoma it becomes a way of life. Hang in there you are not alone . . .
When ever possible, I change my wife's ostomy mount in the morning before she consumes anything. 95% of the time her stoma is "quiet" during the whole process.
Love the marshmallow suggestion!!
I've found the same with my wife.
When I wore the adhesive/tape ostomies, I showered in the morning. So, I've been fasting 8+ hours.
Since I'm severely allergic to tapes and adhesives, I wear a Perm-type appliance with semi-permanent vinyl bags. No worries with when to shower because you have no prep work, no measuring and no worrying if your skin is dry enough. Take it off. Wipe it if it needs it, shower, dry off and put it back on.
Or if you prefer to use adhesive, you can shower with it on.
Just dry it off or use a blow dryer.
The face plate won't break down whether your skin is irritated and/or feverish.
You can use lotions, scented wipes and body wash on that part of your skin, too.
The face plate is hard rubber. No tape or adhesives necessary.
But that means I have to wear a belt for security. I also use bits of a Karaya washer. It's like those Eakin Seals, only softer and a dark brown color.
It heals any broken skin under your appliance.
The con: if you don't have insurance, they can be pricey.
But, for people with severe allergies to tapes and adhesives, it's totally worth it.
Now, my dark purple skin that would weep is now almost the color of my normal skin.
Also, I sleep on those pink hospital pads.
It definitely saves me from washing all my bed covers whenever I leak. I just have to wash the hospital pad.
Get a few of them.
Did you have to have surgery for a perm-type appliance? Thank you.
Iv had a ileostomy and now I have colostomy and it's a learning curve for both I found that changing before I eat or drink anything in the was best for my ileostomy but now I change at night before bed so my filter isn't blocked with stool and it's not filling with gas through the night
Have had a big pancaking problem constantly.One day after eating well nothing was coming out into the bag.Oh oh I thought it must be pancaking.I didn't have the Brava product so I tried a little olive oil.I wasn't expecting much results if any.I was shocked how stool was immediately going into the bag where it belongs.Thank you!
Thank you so much and I will share this with my patients ❤❤❤
THANK YOU! I have an ileostomy due to a Crohn's bowel resection and fistula repair. There was a 50-50 chance that I would not have one but lo and behold when I woke up from surgery, there it was. I had literally been praying for weeks that this terrible nightmare would not happen. I am thankful that my surgeon says it is temporary but in the meantime it has been very stressful for me. The day before I was discharged from the hospital, I had to go through seven bag changes in one night because it kept leaking and it has all sorts of peristomal skin damage. I'm finally slowly starting to get the hang of things but these tips are so helpful to me. I now keep marshmallows in my nightstand so that if I start having a leak in the night, I can start eating them before I have to go to make an apparatus change. Fortunately I'm happily divorced so I don't have to worry about someone questioning the presence of marshmallows in my night table. And my dogs don't really mind as long as I share the marshmallows with them once in awhile.. in all seriousness though, thank you for your candor and this great advice. This has been very emotionally traumatizing for me and these tips are helpful
I have had an ileostomy stoma for 27 years. I am now 82. In 2918 at the age of 75 I remarried , your stoma should not define who you are …..it’s a mark of courage as someone pointed out to me. Good wishes to you. Xx
Thank you so much 👍 I have ovarian cancer and am having surgery soon and they will be removing part of my colon and I was told I will be getting a stoma and need ostomy bag. I was lost on all this so this really helps in advance ❤
A great splash back hack I discovered is to squirt some thick shave foam into the toilet first. This works incredibly well.
Thank you so much for this helpful information. Many blessings
Thank you for sharing! Side note: I love your makeup!
Thank you!! Getting some marshmallows!
I've had Kermit, my ileostomy, for 8 years. My output is always thick and I get a lot of problems with pancaking and resulting seeping under the bag and skin irritation which needs to be dealt with straight away when it happens. I use the Brava lubricating deodorant, which is great. The main reason for my leaks is a parastomal hernia which has already been repaired twice and I'm awaiting surgery for a third attempt. It means much more frequent bag changing than there should be. I see you use the same bags as me! Great, aren't they. I haven't seen a stoma nurse for several years as I manage everything OK, but initially they were absolutely brilliant. Nothing fazed them when I was freaking out because of constant leaks and other problems, until I eventually went on the convex version of the bag and that sorted the problem. I could never get on with rings or seals - they just made the problem worse!
I am now in my 70s. I had ulcerative colitis all my adult life (misdiagnosed as IBS in my 20s until my first routine colonoscopy screening for colon cancer came up with the correct diagnosis. 18 months later I had a second colonoscopy and they found a large stage 3 tumour, so I am now completely without a colon for life. Best thing that could have happened in the long run, despite a year out of my life having scans, surgery, chemo etc., because it completely dealt with the inflammatory bowel disease and having the bag is liberating, once I'd got through the initial teething problems. Not to say I haven't had major problems with subsequent surgeries because of the hernia and an obstruction, and post-operative sepsis in 2018 which nearly killed me! I'm still here, though, and still smiling!
Something else that helps me with breaking out is using plain yogurt. I get yeast around CJ when on antibiotics. My aunt told me put yogurt on for few minutes, wipe off and go. Works better than the pills
I’ve had a stoma since I was 6 and I’m 21 coming 22 what I do when emptying the back instead of sitting down and putting the toilet paper in the toilet I find that just kneeling down and empty it hardly ever get splash back
That's a great suggestion. Thank you so much for sharing. The GutSquad is fortunate to have the benefit of your many years of experience. Wishing you 15 more years with a healthy stoma!
We have to be our own advocates nowadays.
Try fluffernutter sandwiches.
Use white bread only. Spread one piece with smooth peanut butter and one piece with marshmallow fluff.
That works awesone at really slowing the flow.
Hubby just got his ostomy Wed this week ..I got the smug look why haven't we read the 400 page booklet?..maybe because I haven't slept more than 6 hours in one week..hubby has parkinsons with probable Lewy body dementia ..so I will be caring for it...he has a stick through his stoma...I think that comes out in about 2 weeks .The prices on Amazon are well pricey..I am so so grateful for all the info...Marshmallow tech sounds so 😉 sweet 🤣🤣omy gosh u have a fabulous variety..where did u find them?
How do rinse the pouch with the bidet? Seems like there would be some positional issues.
Thanks so much!! Friday will make it a month I've had my ileostomy. Fingers crossed I will only have it for a couple months. My dr is gonna reverse it when my jpouch heals up. But my family has the biggest family with FAP. But thanks for the tips. I also been having problems with pancaking so thanks I'm gonna try that out. My aunt Also told me about the marshmallows. Definitely gonna try that too lol.
@sylviaedwards7749 FAP run in my family as well and I'm dealing with it just over 25 and half years, but my 2 brother's and one sister are fine so far, good for them. I went through a Whipple surgery last year and it was major surgery and went through a total hip replacement just over 2 weeks ago and 4 more surgeries too go. I'm 54 years old. I hope this finds you well.
@sarahlouisestafford2448 omg I'm so sorry your having to go through this. I definitely will keep you in my prayers!!! Please God be with Sarah as she has gone thru so much already and continue to be with her as she has more surgeries. Be with her, her family, all the Dr's and nurses. Touch them all Lord. There's nothing you can't do. Heal her and take away all her worries and pain Amen!!! I hope this helps you. Thanks for taking the time to comment on my comment. Maybe we could stay in touch. If you want. God bless you!!!
@sarahlouisestafford2448 I'm 31 years old. My mom has had her ileostomy for 16yrs and my grandma has had hers for 32 or 33ish yrs. My great grandma had one. I have alot of aunts n uncle and cousins that have one as well. They have theirs permanently but I'm praying that I will have my reversal surgery by September or October. I have a pouchosopy the end of August.
Hello. wow where would I be without you! Do you have any suggestions for waterproof around bag. Thanks for everything!
"Splashback" seems like a very tiny problem in the LONG list of problems there is. Best way to deal with that is take your bag off and move it closer to the toilet bowl, simple.
My main question is who do I talk to to help me with stuff if I've never seen an ostomy nurse in my 3 years of having a colostomy? My second problem is how do you keep it sealed when you have liquid shit?
My third question is why is adapt paste so useless?
Thank you for the extremely helpful information and tips! Do you have any recommendations of how to help cover the costs of ostomy bags/materials??
Best are marshmallow treats(rice krispies n melted marshmallows) ❤ I eat that almost every day w/ 'Monster' 👻 (my Illiostomies nameI😊) I figured it out myself over 2 years ago! Helps ALOT! 😘😜
Recycle your empty deodorant bottles. Mix baby oil and water in the bottles and carry along to rinse out your bag after emptying. Cleaned out the bag nicely and lubricant the bag for easy emptying next time. I also installed a bidet to rinse out my bags. Mine is also an ileostomy and empty about every 45 minutes to 1 hour. If I really push the fluids it can be every 20-30 minutes. I have itching so bad anywhere the appliance touches the skin I sometimes think I’m going to go crazy. I go through times where I change the bag everyday and the most I go is every other day. Between the itching and I personally think a bag is pretty disgusting looking after 2 days. I’m not sloppy dumping the bag but it still get nasty looking. I rinse and wipe but the bags get food stains and I will not use ones with clear fronts. Ugh! I can’t imagine what people put up with colostomy bags. At least 90% of mine are liquid and just dump right out
For me marshmallows technique only gave me about 30 minutes. I use lucky charms marshmallows I try to change everything in the morning as soon as possible
Did you ever listen to "Kent Carnivore" - he is amazing what he experienced and learned about food and how to be in control with a stoma bag.
I’m thinking about getting Colostomy, my rectum have a mind of it own
too many trip to the bathroom
It’s not terrible. I was originally hoping to keep my rectum and anus but the cancer didn’t allow that and now I have a colostomy. It is pretty easy to manage. I’m just here researching ways to keep small amounts of poop from collecting behind the soft plastic that adheres to your skin and causes minor irritation.
Is it the gelatin in the marshmallows that causes the slowing down? Would gummies also work?
Finally someone who is living it. I have a urostomy and it’s true, stoma nurses are lovely but until you live with it you really don’t know.
Great info.
How and where do you apply the lubricant to hopefully prevent or minimize pancaking? Thank you.
Hi JD! So sorry for my late reply to your question. In hindsight, I should have given a demonstration of lubrication application in my video. The idea is to get the lubricant evenly distributed within your pouch. I apply the lubricant by squeezing it into the bag through the hole I cut in the wafer before applying the bag to my stoma. That way, it gets all over the interior of the bag and the stool can easily slide down as I output throughout the day, avoiding pancaking and keeping the bag smelling fresh. I regularly pour the lubricating deodorant into the spout of my bag every day to help maintain this effect until my next bag change. I hope this helps. Please let me know if you need further help or have other questions!
@@CecilyLivingBeyondtheBag Thabk you for your response. That’s actually what I’m doing but it really does not prevent pancaking. I have OCD and when stools penetrate around and inside the ring of my skin barrier, I don’t stop cleaning until it’s totally clean. It takes me between 10-20 minutes to clean the skin barrier. I wrap napkins around the skins barrier to prevent this but sometimes, it does not help. I would greatly appreciate any other suggestions you may have. Thank you for your time. Take care.
Ileostomy: This is why I favor a two piece snap on appliance with a proprietary turtle collar. I can empty, rinse open and clean most of any pancake with a wet TP Then step into the shower and spray what little is left while the plate is attached to me. For me it does not affect the faceplate adhesive paper, or the flexible wafer around the stoma.
I’ve had my stoma a year now why am I always hungry at night I mean I am staving even though I eat enough in the day ?
I have an illiostomy. Had a blowout this afternoon. Hasn't eaten for 16 hours. Still pancaked and blew out the sides. My stoma is concaved. Any suggestions?
Thank you very much!!!!!
Do you have any suggestions for the pancaking that doesn't involve the lubricating deodorant? That product just doesn't seem to work for me for some reason, so I am constantly squishing down my bag and having to pull the top edge back up cause it will stick to itself. I almost always have really thick stool. The only time I get liquid stool is if I don't eat, but drink a bunch.
Super blog thank you
I'll tell you for a woman you certainly do have balls. Emptying that bag in front of everyone takes guts. You did a good job with this video. I had an ileostomy for 4 months and it was the most miserable time of my life I had to live with that parasite stuck on me and I got to watch it fill up with my own stool. The thing have you ever stopped it was always running. It was normal for me to empty the pouch 12 times a day. I would kneel in front of the toilet and hang the bag over and empty it and that smell would get me right in the face. I have smelled burning flesh decaying bodies in the smell of that output is worse. Because of that I would never go to anybody's house. Several times it sprung a leak. One night in bed I rolled over and put my whole weight on it the seal burst and it was liquid stool all over me all over the sheets everywhere. One time I was having intercourse and it came loose it got stole all over my partner and me. I'm sitting in a restaurant and I looked down and I see this wet spot getting bigger it was leaking at the seal by the time I got home I had liquid stool all down my legs and everything else below the waist. I hated that thing
Mines is swollen. Any suggestions?
My hospital d8dnt have an Ostomy Nurse. Can you believe that!?
You're fantastic
Hi Cecily, it was very helpful to watch your video. I have a question, is it normal to have sudden sharp pain either where the bag is or on the opposite side of the stomach? I had some yesterday and now they are gone. I was worried; I have access to an ostomy nurse, but not on the weekend. Thanks.
Wow! I just experienced this…near the stoma & on the ither side of my belly button…sudden sharp pains!😩Not something continuous but when they hit it HURT! I figured maybe its my intestines tryna move food through🤷🏽♀️.
I use Baby Oil...works great
I liked 2 out of about 7 They were pretty much idiots. They changed my barrier a bag an an open wound an I got a shot of morphine cuz they were rough.
To prevent toilet splashing, I empty my bag into a medium size bowl and dump that into the toilet.
I live in Thailand and almost every toilet has a sprayer (like you often find on a kitchen sink) connected to the toilet water supply. This comes in very handy for rinsing.
If you know someone a little bit knowledgeable about plumbing, it would be pretty easy to install.
olive oil and vanilla for smell
Noone told me that prolaps waaa thing
Me neither, Brandon! My surgeon never mentioned the possibility of prolapses until it happened to me. I feel that surgeons and ostomy nurses should do a better job of explaining what can cause a prolapse and how they look so people aren't going into surgery blind, but I understand that they don't want to scare their patients. In any case, I'm glad you know now and have an idea of what they look like!
@@CecilyLivingBeyondtheBag i rushed to the er didnt make it past triage
@@brandonshaw7619 Brandon, how are you now? Did they manage to fix your prolapse?
I was worried about mine prolapsing because the reason I had to have the surgery is cause of stage 4 pelvic organ prolapse when I was 15. But surprisingly mine didn't prolapse. I can't imagine the struggles that come with a prolapsing stoma
Are there any foods that you can't have like nuts corn fried foods french fries Bologna spicy food.
Eu adorei o vídeo. Coisas que a enfermeira nunca saberá dizer.
There has gotta be a better way than this… idk how people
Maintain their sanity through all of this…
Try eating 3 marchmallows and you will have 20 minutes to do your change
Sorry my name is Thomas I m from elk Grove California
Where could I get that
Lubricated deodorant liquid
…bet they didn’t tell ya..Ur now in Ostomy Hell…
Super great info. I am 64, had iliostomy on march 2021, super great health condition, motorcycle adventurer. Found colon cancer, and know with iliostomy, my life has changed 180 degrees. I am very thankful of the information you post on your videos, it is so helpful. And congratulation for your breveness of making this videos. Thank you very much. Regards from Mexico
And, so you know, after 8 months of my surgery, today I continue with my adventures, this past weekend made a 6 hour off road ride, I felt great, but before ending my ride, my wafer came off and I felt how lots of stool was coming out on my body armor, pants etc. But I was so happy thinking that that was just uncomfortable, my health is perfect, and I accomplished a great adventure.
What are the prices like to purchase your supplies in Mexico?
Well done! Having an ileostomy shouldn't change your life and it's great to hear about your motorcycle adventures. Getting Kermit (my ileostomy) 8 years ago was liberating for me, releasing me from being tied to the toilet with an inflammatory bowel disease! It sounds odd to be thankful for colon cancer, but I am, because it sorted the problem! My life was also changed 180 degrees - for the better!
Hi Cecily thank you for your help. I have just become an Ostomate after having my J-Pouch removed and also my rectum & anus. One tip I use is that after emptying my pouch I add a 1/2 cup of water and close the bag to be able to swish the water around the inside and clean out the bag, then release it and close the pouch.
Hi there, Iggy! Thanks so much for your comment--I think many ostomates will benefit from this tip. In my experience, washing out the bag helps to prevent pancaking and keeps the odor to a minimum. Do you just keep some water handy or do you have another method? I used to have a hose bidet on the side of my toilet at my old apartment and it was soooo useful for emptying/rinsing out the bag. Great advice 👏
I do this as well.
I just ordered a travel bidet to use for cleaning my pouch.
I am 8 weeks into my ostomy. I had a great ostomy nurse in the hospital. But like you mentioned she hadn't had an ostomy. So for some of the practical day-to-day stuff she would respond "You'll figure it out, everyone does". This is the first video I've found (I'm sure there are others that I haven't found) that did not only explain the TP splash back remedy, but showed it! Not only to help with splash back, but also just showing your positioning, etc. Seeing it done by someone else has been the single most helpful thing for me to this point! Thank You!! No colon, keep rollin'!
Right I have had mine since May 2nd and the Dr just released me to go back to work this week on the 28th but I'm not on any restrictions because it's been 8 weeks but I do maintenance at work. I really think I should have restrictions. They don't have a bag so they don't know. Thank God my mom n other family members have it so I can call on them if I need help. They told me to be careful because it could mess up on me at work. How embarrassing would that be smh
Seeing her emptying in to the toilet by straddling across the toilet seat was new to me. I have been an Ostomate since August 1994 -.almost 30 years now. I find it much easier to kneel in front of the toilet and hold the bag over the rim. I always add toilet paper to the bowl first. Before emptying I tip some water via a jug into the bag opening, give it a swish, then empty into the bowl. I then give the bag another swish with the water jug until the contents of the bag are clear. Hope it helps 🎉
I om 8 year
To help with pancaking with my Ostomy, I use a little baby oil in my bag before applying it’s great! 😮
Hope you are doing well, a year on from your comment. I'm 8 years in, and so grateful for it. Changed my life for the better! Getting help and advice from fellow ostomates is the best thing - stoma nurses are great especially at the beginnning to get you started, but for day to day stuff there's nothing like experience.
I have to kneel in front of the toilet to empty mine. In men's restrooms it's absolutely disgusting. I'm 4 months in and hoping for a reconnection celebration in the coming months. It's been incredibly difficult adjusting to life like this. I applaud anyone that's living life with an ostomy. I've felt work early the last two days due to a breach. It's a very humbling experience.
I feel you on this. I've had my iliostomy done just one week ago and I'm feeling super down. I was told I could get a reversal in 3 to 4 months I hope that time-line is correct
@@elisendamurillo5165 don't rush it. Make sure you've healed well enough before reconnecting. I'm sorry you're going through this. It's hard.
It took me over a month to be able to kneel again. You can imagine the issues this caused!
@@elisendamurillo5165I also had mine 26th of August it prolapsed and had to go to get it refashioned when it prolapsed. Now it's retracted and has many leakages , but I try to remain positive and research on ways to fix it however in my country which is a 3rd world we don't have many colostomy products so have to wing it with substandard things
Changing the bag first thing in the morning is the best time, before you eat anything.
I’m not sure you can put a blanket over it . Wind it In
Brand new osomate, about to do my first solo bag change... THANK YOU for this invaluable information!
Brava skin protective pads are a LIFESAVER to prevent pancaking, especially severe pancaking as the wafer adheres to the pads MUCH better than your skin, so even VERY firm stools wont typically be able to cause separation. This is very helpful info, thank you!
thanks for sharing. I have had my ileostomy for 9 years now. I have it under control, but new people need your insight....
Thank you, you are a blessing. I’m one month in on my new stoma and the nurse was very rushed and I saw her twice the whole week I was in the hospital. You have no idea how much I appreciate this video.❤
Oh my goodness you are a God send! I am 1 week into this and wow! It was an emergency surgery we were trying other avenues in 2 weeks + hospital stay. 😮 I recd 3 , 30 minute lessons as a prize! So I am not sleeping yet maybe 2 hrs a night, when I accidentally found YOU! Thank you thank you thank you
Hi Brenda, I’m so glad you found the channel. An emergency surgery is so hard on the body and mind; I sincerely hope that your recovery gets easier. With time, I’m sure it will. Sleep will also come with time. At first, ostomies output a lot because your bowel hasn’t adapted to re-absorbing enough fluid in the small intestine to make up for the loss of the colon (or, in some cases, parts of it). Adding that nearly constant output to the immense pain of abdominal surgery, sleeplessness is usually the hardest part of being post-op. I promise that things will get better. Please let me know if you need more advice. I’ll do my best to help! 💜
@@CecilyLivingBeyondtheBag I thank you again for the advice. Still haven’t a nurse promised me ended up back in the hospital with straight blood no mix and the hospital where I had it done is 25 min away when going over speed limit! All regular doctors were in shock. No one had ever seen such b4 . They couldn’t after 3 days of observation figure it out. I am supposed to see the surgeon who did the surgery in the morning at 9:00 now my ride says they can’t take me after a weeks notice. They told me 20 minutes ago! And he was to determine if another surgery is necessary or medicine or home nursing. Geese.
Yes you are a Godsend! I'm hoping to see a change with these new tips!
Since i am new to this club, I found your helpful hints to be the best I have seen so far. Than you!
Thank you so much for the tips your sharing. I became an ostomate a month ago and I'm learning so much from co ostomates and their experiences that have proven so valuable. I'm learning something new from every video that I've been watching that only come from experience not theory. Looking forward to more posts from you !
Hi Angel! You are so very welcome, I am really happy that some of my tips could be of use to you. I am a firm believer that when it comes to ostomies, the best teacher is experience. I remember when having a stoma was new to me and everything felt so foreign, but I promise that everything from bag changes to eating right to sleeping soundly and leak-free will become second-nature with time. If you're not already following Ostomy Buddies and The Real Ostomy Support Group on Facebook, I would highly recommend joining those groups. They are full of encouragement, advice, and are also just a great place to vent. Wishing you the best of luck; please let me know if you ever have questions. I'll be happy to answer them as best as I can. ❤️
Thanks so much for your info! I watched your video while still in the hospital and now 2 weeks with my new friend, it makes more sense. With swelling changing daily, it's been hard to keep up with leaks. A lightweight elastic "girdle" helps support the bag while the new stoma stitches are tender. Also learned that cutting the wafer offset from the center hole, or turning it sideways makes the stiff backing shorter between the stoma and belly button. Less pinch and no more leak! Best discovery is the lubricant & deodorant. I'm super self conscious about being stinky. Had a little necrosis on edge of stoma and EXTRA bad smell! The lube- -deod helps the smell, but makes emptying a quick slide then the bag looks new. It's a weird life change, but cutting pain is so worth it! Thanks for all the help and advice- you are so strong and so inspiring!
I have just had a stoma made because of spinal cord injury. Thanks so much for your really useful tips 😊
Great video and thank u for showing actual pouvh emptying it's appreciated as I may be getting this surge.. thank u 🙋
Thank you for your video. I'm dealing with colon cancer and was told I will have a permanent ostomy. My cancer has affected my self esteem and I feel really down about what's going on. Your video was informative and refreshing.
Thank you so much for sharing, Richard. I’m deeply sorry about your diagnosis. Ostomies are intimidating, but I believe a better life awaits you on the other side. Please stay strong! 💪🏻
I get it bub. .I've had mine for 18 years in February. Sometimes it bothers me too. My ex gf has had my back for a few years now. She's gotten me out of some dark scary places. You gotta keep your sense of humor, it helps
Richard, someone told me that folks who name their ostomies take better care of them. My colostomy's name is Rosebud Poopybutt and she is a real cutie! Rosebud has become like her own 'person' and I celebrate her birthday every year (April 1st). She will be 8 years old on April 1, 2022. One of the things you can do that will help you the most is not to be ashamed of your ostomy. No need to take special pains to cover up or disguise your ostomy under your clothes. Wear what you want, when you want. I had Rosebud put up on my midriff because I usse her as a teaching tool when talking with people and encouraging them to get that colonoscopy, lest they end up with their own colostomy. Rosebud came about because I had Stage 3-C Rectal Cancer that was growing out my butt. (I thought it was just hemorrhoids - but what did I know?) The longer I have my stoma, the more I love it because it lets me live my best life. No more racing for a bathroom. No more messes. No more anxiety. Life is way better with Rosebud and I wouldn't trade her for anything!!!! I sure do hope you're doing well and feeling much better about life in general. Over time, things definitely will get much, much more comfortable. You and I have both beaten cancer!!!! Your colostomy has given you years more of living!!!!! Enjoy them!!!!!
Hi Richard, I've had an ileostomy for 14 years and I feel like yourself, my problem is I'm too conscious of needing to use the toilet when I visit anyone or have to go out socially so I've kind off stopped. It's not that I'm glad you have self esteem problems it's just that videos I've watched seem to be from people who don't seem to mind and are confident. I so envy them and wish I could be like that as well. Maybe we'll improve I really really hope so. I wish you all the very very best.
I got the same diagnosis about a year ago too but I thought I was gonna keep the use of my rectum. Well that changed and Ive adapted well to my stoma after 2 months. Richard, how are you doing brotha. Let us know.
Thanks for the tips, I recently took a long flight and had to use the toilet. I used the technique of “lining” the toilet with a couple of pieces of toilet paper. Flushing worked much more easily with a single flush, I even traveled with marshmallows 😊 so you can control output while you’re travelling.
So glad I just found you by accident. Thanks so much for doing this. I am one month in on this unexpected life changing experience. So nice to know I am not alone. My Ostomy Nurse told me about the marshmellows yesterday and also introduced me to "crusting" to help with my skin issues.
What is crusting?
Yes. the toilet paper in the toilet first works well. The other thing is something a nurse told me about. When you are changing your bag, roll up a piece of toilet paper or paper towel and put it in the stoma opening. Nothing comes out. At least that works for me. Thank you to this lovely lady for sharing. So much help I have found on sites like this. They are a blessing.
The tiniest tampon is what the ostomy nurses taught me. The string sticks out to put through the ring for easy removal
@@ladybug4u165What is the tiniest tampon you get. All I can find is normal size. Can’t even find junior ones.
You are so brave and just so beautiful and upbeat it’s really thoughtful and thought provoking- what most may take for granted and still not have such a positive attitude. Girl you have grit and a great personality!! Kudos to you beautiful soul, thank you 🙏🏼
Very brave and this is most appreciated
I have found in the 2+ years with my ostomy, if I drink up to 1/2 gallon of fluids a day, my output is liquids. If I fail to drink this amount, I am constipated. Mine is a cross between an ostomy and an ileostomy.
Thank you for being so explaining.. its good to know that I'm not the only one... trying to come to terms with this change of Life...
God bless you, xx
You’re so welcome, Simone! You’re definitely not alone…please don’t forget that. Ostomies are difficult to manage and care for. It takes a lot of time and patience to cope, but it does get better. Just take a few breaths every now and then and remind yourself that it really will be okay 💜
I am due to have a Colostomy soon. I am scared but know that I will have a better quality of life albeit problems from a bag of my own waste at my side and intestines through my abdomen. I do not think there is such a thing as 'problem free'.
@@CecilyLivingBeyondtheBag Cecily, I have my ostomy just over 25 and half years. For splashback, if I kneel and empty it then, no splashback .
Did have to stand up to empty it a few days this last 2 weeks, due to having a total hip replacement, while waiting for a raised toilet seat and it took me a wee while too get used to emptying it siting down. I now aim for the side of the toilet bowl, no splashback. Happy days 😅
Changing the bag. I find if I change it in the morning immediately after I eat, 5 mins I have the bag changed. It doesn't get time to act.
My ostomy nurse is no great help to me, so I just figure out things for myself. I had more surgery last year and the surgeon and his team didn't tell me everything last year as I was told by a nurse.
just a day before I had the total hip replacement, that I had a pulmonary embolism in my lung, last year, imagine the shock I got. We do need a sense of humour.
Sorry for the long comment.
I hope this finds you doing well.
I'm only 54 years old and when I got the ostomy I was 28, I had polyposis in my colon and the surgeon in my local hospital thought it might have been cancerous, so by the time I had the surgery, I found out it wasn't cancerous.
Pancaking: I've been told to put a drop of vegetable oil in the bag opposite of the stoma. Not putting pressure on the region where the stoma is , I guess also helps. Give the "things" a chance to drop into the bag.
Great tip! Thank you so much for adding this, it is really important to get the oil/lubricating agent on the side opposite to the stoma. I love ostomy hacks that only require a quick trip to the grocery store rather than having to order a bunch of expensive medical supplies.
I guess you could also use some products from the field of "Marital Hygiene" like our grandparents would have called it.
@Paul Mcinnis adding the oil was recommended on an unused bag before using it for preventing sticking.
Reuse was never mentioned.
@Paul McinnisNot really practical in a public restroom. Also I tried this and had some accidents if the output was too liquid. I discovered that if I stack three large kleenex and hold and fold under the bag I can really slow the output before it hits the water, and it contains most of it. Sometimes I missed the tissue I would place and then there are the new toilets that flush the paper before you can use it.
Splashback is caused by hydraulic rebound much like a trampoline. I found that if you get into position hold your bag valve with one hand and flush your toilet it will vector hydraulic pressure away. You really want to let the water to start receding before you release the valve but you will see zero splashback. The only downside is you will be flushing your toilet twice since you have some cleanup work on your ostomy bag after the dump. An extra flush is worth the next to zero splashback in my mind. Good luck all
I have too many issues with leaking from the barrier. I use Glad Press ‘n Seal over the bag to help and it has helped avoid some embarrassing situations.
Could you explain a little more about this technique? I'm having big problems with leakage and really need help. Thanks.
@@debtreat7382 I just use a large sheet of Glad Press ‘n Seal and stick it over the entire bag and press it on my stomach. It won’t stop leaking but it buys me a few minutes and might save me from disaster. My stoma is very small and does not rise very high from the skin that is why there is a problem. Dr said my colon was too damaged from radiation to create a larger stoma.
@@julieestep1964 thank you for the explanation. I will give this a try.
Thank you I am in the hospital and was just given an ostomy.This is great information.
Wish you better very soon, take it very slowly , I am 82 , and 27/years in front of you.🌹🌹🌹🌹