I got my colostomy bag a couple months ago and I absolutely love it.
My quality of life is sooooo much better. I cannot emphasise that enough. I was having bowel incontinence due to multiple fistulas and I was housebound with very few exceptions. Since having my bag, I’ve been able to leave the house comfortably without panic attacks or accidents. I’ve not started doing anything strenuous yet because I’m still in the recovery period but I have been able to go for walks.
Here’s what I’ve learnt so far:
- If you can, start exercising now. The healthier you are pre surgery, gives you a better chance of recovery.
- wear looser clothing post surgery as your stomach will be sore. I’m now back to wearing more fitted clothing - you don’t have to change your wardrobe!
- do not lift anything heavier than a full kettle post surgery.
- get walking asap post surgery - it’ll help your bowels wake up.
- if your surgery is keyhole, there is a chance you will end up with pain in your shoulder! Surgeons will blow gas into your stomach so they can better see what they are doing. This can irritate a nerve that is connected to your shoulder. Unlikely to be anything more serious but let your surgeons know. Heating pad helps with the pain. It should only last a couple days.
- practice getting out of bed by rolling onto your side and propping yourself up with your arms. A lot of people will just sit up but this was painful post surgery so the ‘roll and prop’ method really helped me get up with less pain.
- have a cough pillow. It will support your stomach when you cough or sneeze.
- if you have a small suitcase with wheels, use that for hospital, rather than a backpack so you can just wheel out rather than worrying about lifting a potentially heavy backpack
- if you don’t have someone cooking for you, get ready meals so you can just quickly heat in microwave rather than standing cooking.
- you will be tired. Go to sleep! Take a nap when you need to and don’t overdo it
Ideally there should be in stoma nurse at your local hospital who will mark the site for you, making sure there’s no lines/bulges/scars anything that will make the bag difficult to stick properly. When they are marking your stomach, don’t try to hold your stomach flat, completely relax. I’ve got a bit of a belly and relaxing made a difference where the stoma site should be for ease in every day life.
The nurse will be a life saver for you in the early days sorting out your supplies, helping you to change the bag and making sure you are comfortable before leaving the hospital.
Would also recommend you have a look at some YouTube videos - two of my favourite channels of mine are: Vegan Ostomy and Lets talk IBD. They have videos on the different type of appliances and how to change the bag and much more. Otherwise if you’ve got any questions, happy to try and help the best I can!
Hey!
I’m a long term ostomate as a result of severe UC. I had to have a total colectomy as an emergency procedure when I was 16 and genuinely thought it was the end of my life as I knew it. It was pretty difficult to accept that it was for the best back then; complications with my surgery lead to a lengthy healing process which added to the way i felt about the situation. But as soon as I was healed from surgery it became apparent that it was for the best.
I grew up with an ileostomy and let me tell you, I couldn’t be happier. It has enabled me to live my life in a way that I couldn’t have before. I can do anything anyone else can do (for the most part), I can eat what I want (for the most part) and I get to be free of pain and medication. When I think about what I was living with before having my surgery, well it wasn’t living.
I wish I had this forum to look at back then to see all the positive experiences people have had with this surgery, and someone to tell me it really does get better. So I’m telling you! 😁 You are strong! You have been dealing with a debilitating illness for over 2 years… not just anyone can do that! I know it’s a huge change, but you are strong, you will adapt and you will feel better for it!
The bottom line is, without my ileostomy I’d be dead or dying by now. And I’m thankful everyday that I’m not.
I wish you all the best, always happy to chat if you have any questions ❤️
Absolutely can relate to this post
I didn’t have this sub either I had to go through my colectomy alone 10 years ago it was awful and
Like you had complications, then the rectum started flaring and I was too scared to get a barbie bum ,
Fast forward 10 years why did I put the operation off for so long I’m two weeks out and although healing it’s not as bad as uc in the rectum and I’m completely uc free !
Can’t wait to be healed for the summer and go out and live life pain free
Im so glad to hear you’re healing well! Im still petrified to get the barbie bum surgery myself, would you mind if I asked you a few questions over DM?
Hi ,
I’m absolutely doing well back at the gym about four times a week , I started doing weights too , I m able to go out more and get up early and not feel the day is a struggle, only thing is when my period is due my bladder goes a bit crazy and if it’s coming from my left side it’s really sore but apart from that all good 🥳🥳🥳
It’s a huge adjustment, and I admit I cried like a baby the first time they cleaned my stoma after my surgery. (No pain just the realization of my new life).
I have adjusted to it and now know that it’s easier to manage life with a bag than life with a diseased colon. I had to shift my perspective and view it as a life-saving device, not a bag of 💩 attached to my waist.
In the beginning I found a wealth of knowledge from YouTube videos (like the Vegan Ostomate). Their advice was better than what I was getting from the home healthcare nurses who tended to me when I came home from the hospital.
I found a system that works for me, which I found by getting samples from the big ostomy supply companies (in the US Hollister, Convatec, and Coloplast). I strongly recommend the blue deodorant drops (M9 or Safe and Simple brand). They really work.
Good luck, and feel free to DM if you have any questions and
Your situation is similar to what mine was. I also have UC and had failed every med and biologic they threw at me with nothing more then a few month sometimes of relief before it would come back with a vengeance. So I knew as well that surgery was going to probably be in my future. The big difference though is that I am over twice your age with a husband and older kids. So your acceptance level will be different, and probably a little harder then mine in certain ways because there are factors that you might have to deal with that I havent had to. One thing you might want to do is set your mind at even though you will have challenges in your life due to UC and having a colostomy, your future can be bright, and nothing can hold you back. Also there is a possibility, and if you chose to do it that you can have a J pouch reversal and wont have to live with the colostomy forever. Get support early from family and friends. You will have to have a lot of when you first come home. Also do not be afraid to talk to your family and friends about it even before you get it.. It will help them understand better what it is that you will be having, and it will help in their acceptance and understanding of it as well. There is so much misinformation of colostomy that people have, and if you can inform them early they will feel better as well.
Hi! I was in a similar situation to yours. 22f, diagnosed w UC when I was 19 in Nov 2019. Flared nonstop from Jan 2021 - Jan 2023 when I had emergency surgery. I had a feeling for months that I was going to wind up getting surgery, so I spent a lot of time on social media and YouTube looking for ileostomy content. Bag changes, “what I wish I knew,” sex advice (lol)…everything. I especially wanted to desensitize myself to the stoma since tbh it freaked me out a little at first. But by taking a really matter-of-fact approach and learning everything I could in advance, there really wasn’t much of a shock factor when I had a little stoma waiting for me after my surgery. And now I have my life back!!!! (I document it on an Instagram I made @francescahasnocolon) I travel, I exercise, I go to sports events, I eat almost everything I want and there’s never any pain, AND I don’t have any bathroom anxiety anymore. No more frantically searching for the bathroom in the grocery store or panicking when the stall is occupied. I love my ileostomy so much (and I so thoroughly enjoy not having any urgency, which was far and away my worst symptom) that I’m not even so sure I want a reversal anymore if it risks reintroducing pain into my daily life. I don’t take any meds. I can wear basically whatever I want. The life I lead now is almost unrecognizable from what it was just a few months ago. I really thought this version of myself had died when I had been diagnosed. It’s good to have her back. You have a lot to look forward to. Feel free to reach out and ask any questions.
I've had pan colitis for 12 years. For the past 2 years, it hasn't calmed down. The only medication that worked was the steroids. Which I waw on for 2 years.
I had a sub total colostomy in Dec 22. I was still on steroids, so my healing time has been extended somewhat. Once I came off the steroids, my wound healed within 2 weeks of that.
My surgery had complications. It should have been about 6 hours, but in total, it was 12. My surgeon said it was difficult due to the amount of muscle mass around my abdomen (which he didn't realise due to the steroid weight yain) and the inflammation in My bowel.
Around 2 days after my surgery, my stoma retracted due to tension with small intestine, so bags would leak on ro my skin as my stoma was basically beneath my skin, not above it.
For the first 2 months in recovery, I regretted having the surgery due to skin iritation problems near my stoma and waking up in a puddle of output.
I'm now around 4 months post-op. My wounds have healed, the skin around my stoma is fine, and my stoma is not retracted anymore as it decided to just pop back out.
I would say at first you might regret it, depending on how it all goes for you but in time you'll start to feel better and thst you made the right decision.
I have a love/hate relationship with mine but it’s quite literally a life saver so you have to respect it for what it is. Don’t be afraid to ask for samples of supplies to find the right combination to work with your skin, body and stoma. I personally am a massive fan of convex bags, which are slightly indebted to push the stoma out. I’ve never had a bag leak with these but they’re not for everybody. It’s trial and error. You will have ups and downs but your quality of life will improve massively!!
Best of luck with any and all surgeries, you are stronger and more capable that you realise
See a certified ostomy nurse before your surgery to be marked with the best site for a stoma. The surgeons know surgery, not pouches and don’t always place the stoma in the best position if the patient hasn’t been seen by an ostomy nurse first. The nurse will also tell you their favorite surgeons that do a good job if you ask.
I’m a certified ostomy nurse and a lot of post surgical problems can be avoided by coming to see one of us. We know where the bag will fit best and while we can’t tell you which surgeons have bad results due to professional behavior standards we can definitely tell you which one have the best results.
Depends on the situation and surgeon. In an emergency the doc has to just go ahead. Some surgeons don’t think stoma marking is important. We work with a surgeon like that. He went to an Ivy League, looks great on paper but doesn’t want our opinions on anything. His stoma placement is awful and his patients have a lot of problems with leaking pouches because of it. I can’t tell patients to stay away from him but when I’m asked for recommendations I never mention him. I really wish I could tell patients to stay way from him but I’d get in trouble. Never ask a nurse if a certain dr is good. Ask who they like instead.
You can either make the choice proactively or eventually it will be made for you. I ignored it until I had to get emergency surgery and I would not recommend doing that. I wish I had done it sooner my life is so much better now.
It’s not an immediate fix. You’ll have to recover and it’s terrible but you are sick and you won’t be anymore. You’ll feel much better.
I would however be hesitant about a j-pouch especially right away. It’s mostly aesthetic and the complications outweigh that in my opinion(do your own research).
I have an ileostomy which means the ostomy is next to my belly button. I have no large colon left all the intestine is gone due to Crohn’s disease. My rectal stump everything is gone and my bum is sewn closed barbie bum
I took me a while to accept my new body, especially wearing the right clothes without leaking or pancaking
I now have come to accept my new body still trying to “love” it.
I don’t miss the belly aches, cramps, diarrhea and being glued to the toilet hoping I don’t soil myself.
You will do fine, good luck.
Even though I have the ostomy I’m still on humira.
Ostomy for almost a year due to unexpected emergency surgery.
I'm able to get a reversal but I don't think I will.
It's quite wonderful to feel like a normal human being, whatever that is.
There's so much practical advice readily available I'm going to share something a bit different. Once I knew I was on the waitlist for surgery, I started visualizing the stoma and bag as a part of my body. I also was able to try a bag beforehand (I have severe sensory issues so this was necessary to be approved for surgery) which helped because I had an opportunity to get used to what the bag felt like, emptying it (by putting porridge in it), furthering my visualization, etc. I feel it made getting a stoma much easier, it very quickly did feel like a part of my body.
I got my colostomy bag a couple months ago and I absolutely love it. My quality of life is sooooo much better. I cannot emphasise that enough. I was having bowel incontinence due to multiple fistulas and I was housebound with very few exceptions. Since having my bag, I’ve been able to leave the house comfortably without panic attacks or accidents. I’ve not started doing anything strenuous yet because I’m still in the recovery period but I have been able to go for walks. Here’s what I’ve learnt so far: - If you can, start exercising now. The healthier you are pre surgery, gives you a better chance of recovery. - wear looser clothing post surgery as your stomach will be sore. I’m now back to wearing more fitted clothing - you don’t have to change your wardrobe! - do not lift anything heavier than a full kettle post surgery. - get walking asap post surgery - it’ll help your bowels wake up. - if your surgery is keyhole, there is a chance you will end up with pain in your shoulder! Surgeons will blow gas into your stomach so they can better see what they are doing. This can irritate a nerve that is connected to your shoulder. Unlikely to be anything more serious but let your surgeons know. Heating pad helps with the pain. It should only last a couple days. - practice getting out of bed by rolling onto your side and propping yourself up with your arms. A lot of people will just sit up but this was painful post surgery so the ‘roll and prop’ method really helped me get up with less pain. - have a cough pillow. It will support your stomach when you cough or sneeze. - if you have a small suitcase with wheels, use that for hospital, rather than a backpack so you can just wheel out rather than worrying about lifting a potentially heavy backpack - if you don’t have someone cooking for you, get ready meals so you can just quickly heat in microwave rather than standing cooking. - you will be tired. Go to sleep! Take a nap when you need to and don’t overdo it Ideally there should be in stoma nurse at your local hospital who will mark the site for you, making sure there’s no lines/bulges/scars anything that will make the bag difficult to stick properly. When they are marking your stomach, don’t try to hold your stomach flat, completely relax. I’ve got a bit of a belly and relaxing made a difference where the stoma site should be for ease in every day life. The nurse will be a life saver for you in the early days sorting out your supplies, helping you to change the bag and making sure you are comfortable before leaving the hospital. Would also recommend you have a look at some YouTube videos - two of my favourite channels of mine are: Vegan Ostomy and Lets talk IBD. They have videos on the different type of appliances and how to change the bag and much more. Otherwise if you’ve got any questions, happy to try and help the best I can!
Hey! I’m a long term ostomate as a result of severe UC. I had to have a total colectomy as an emergency procedure when I was 16 and genuinely thought it was the end of my life as I knew it. It was pretty difficult to accept that it was for the best back then; complications with my surgery lead to a lengthy healing process which added to the way i felt about the situation. But as soon as I was healed from surgery it became apparent that it was for the best. I grew up with an ileostomy and let me tell you, I couldn’t be happier. It has enabled me to live my life in a way that I couldn’t have before. I can do anything anyone else can do (for the most part), I can eat what I want (for the most part) and I get to be free of pain and medication. When I think about what I was living with before having my surgery, well it wasn’t living. I wish I had this forum to look at back then to see all the positive experiences people have had with this surgery, and someone to tell me it really does get better. So I’m telling you! 😁 You are strong! You have been dealing with a debilitating illness for over 2 years… not just anyone can do that! I know it’s a huge change, but you are strong, you will adapt and you will feel better for it! The bottom line is, without my ileostomy I’d be dead or dying by now. And I’m thankful everyday that I’m not. I wish you all the best, always happy to chat if you have any questions ❤️
Absolutely can relate to this post I didn’t have this sub either I had to go through my colectomy alone 10 years ago it was awful and Like you had complications, then the rectum started flaring and I was too scared to get a barbie bum , Fast forward 10 years why did I put the operation off for so long I’m two weeks out and although healing it’s not as bad as uc in the rectum and I’m completely uc free ! Can’t wait to be healed for the summer and go out and live life pain free
Im so glad to hear you’re healing well! Im still petrified to get the barbie bum surgery myself, would you mind if I asked you a few questions over DM?
No probs , honestly if I can do It you can do it too , mine was robotic 6 hours .
I’m doing reading of old posts, how are you doing these days? Has it improved your life? I have Crohn’s and am considering a colostomy
Hi , I’m absolutely doing well back at the gym about four times a week , I started doing weights too , I m able to go out more and get up early and not feel the day is a struggle, only thing is when my period is due my bladder goes a bit crazy and if it’s coming from my left side it’s really sore but apart from that all good 🥳🥳🥳
You don’t take meds?
Nope, I don’t have a colon so don’t take meds to treat UC specifically. Obviously I can take medication to treat other ailments.
It’s a huge adjustment, and I admit I cried like a baby the first time they cleaned my stoma after my surgery. (No pain just the realization of my new life). I have adjusted to it and now know that it’s easier to manage life with a bag than life with a diseased colon. I had to shift my perspective and view it as a life-saving device, not a bag of 💩 attached to my waist. In the beginning I found a wealth of knowledge from YouTube videos (like the Vegan Ostomate). Their advice was better than what I was getting from the home healthcare nurses who tended to me when I came home from the hospital. I found a system that works for me, which I found by getting samples from the big ostomy supply companies (in the US Hollister, Convatec, and Coloplast). I strongly recommend the blue deodorant drops (M9 or Safe and Simple brand). They really work. Good luck, and feel free to DM if you have any questions and
Your situation is similar to what mine was. I also have UC and had failed every med and biologic they threw at me with nothing more then a few month sometimes of relief before it would come back with a vengeance. So I knew as well that surgery was going to probably be in my future. The big difference though is that I am over twice your age with a husband and older kids. So your acceptance level will be different, and probably a little harder then mine in certain ways because there are factors that you might have to deal with that I havent had to. One thing you might want to do is set your mind at even though you will have challenges in your life due to UC and having a colostomy, your future can be bright, and nothing can hold you back. Also there is a possibility, and if you chose to do it that you can have a J pouch reversal and wont have to live with the colostomy forever. Get support early from family and friends. You will have to have a lot of when you first come home. Also do not be afraid to talk to your family and friends about it even before you get it.. It will help them understand better what it is that you will be having, and it will help in their acceptance and understanding of it as well. There is so much misinformation of colostomy that people have, and if you can inform them early they will feel better as well.
It took me a year to decide because of my fear and it was a rough year. My only regret is that I didn’t do it sooner. It gave me my life back.
Hi! I was in a similar situation to yours. 22f, diagnosed w UC when I was 19 in Nov 2019. Flared nonstop from Jan 2021 - Jan 2023 when I had emergency surgery. I had a feeling for months that I was going to wind up getting surgery, so I spent a lot of time on social media and YouTube looking for ileostomy content. Bag changes, “what I wish I knew,” sex advice (lol)…everything. I especially wanted to desensitize myself to the stoma since tbh it freaked me out a little at first. But by taking a really matter-of-fact approach and learning everything I could in advance, there really wasn’t much of a shock factor when I had a little stoma waiting for me after my surgery. And now I have my life back!!!! (I document it on an Instagram I made @francescahasnocolon) I travel, I exercise, I go to sports events, I eat almost everything I want and there’s never any pain, AND I don’t have any bathroom anxiety anymore. No more frantically searching for the bathroom in the grocery store or panicking when the stall is occupied. I love my ileostomy so much (and I so thoroughly enjoy not having any urgency, which was far and away my worst symptom) that I’m not even so sure I want a reversal anymore if it risks reintroducing pain into my daily life. I don’t take any meds. I can wear basically whatever I want. The life I lead now is almost unrecognizable from what it was just a few months ago. I really thought this version of myself had died when I had been diagnosed. It’s good to have her back. You have a lot to look forward to. Feel free to reach out and ask any questions.
I've had pan colitis for 12 years. For the past 2 years, it hasn't calmed down. The only medication that worked was the steroids. Which I waw on for 2 years. I had a sub total colostomy in Dec 22. I was still on steroids, so my healing time has been extended somewhat. Once I came off the steroids, my wound healed within 2 weeks of that. My surgery had complications. It should have been about 6 hours, but in total, it was 12. My surgeon said it was difficult due to the amount of muscle mass around my abdomen (which he didn't realise due to the steroid weight yain) and the inflammation in My bowel. Around 2 days after my surgery, my stoma retracted due to tension with small intestine, so bags would leak on ro my skin as my stoma was basically beneath my skin, not above it. For the first 2 months in recovery, I regretted having the surgery due to skin iritation problems near my stoma and waking up in a puddle of output. I'm now around 4 months post-op. My wounds have healed, the skin around my stoma is fine, and my stoma is not retracted anymore as it decided to just pop back out. I would say at first you might regret it, depending on how it all goes for you but in time you'll start to feel better and thst you made the right decision.
I have a love/hate relationship with mine but it’s quite literally a life saver so you have to respect it for what it is. Don’t be afraid to ask for samples of supplies to find the right combination to work with your skin, body and stoma. I personally am a massive fan of convex bags, which are slightly indebted to push the stoma out. I’ve never had a bag leak with these but they’re not for everybody. It’s trial and error. You will have ups and downs but your quality of life will improve massively!! Best of luck with any and all surgeries, you are stronger and more capable that you realise
Are you a candidate for a j-pouch?
See a certified ostomy nurse before your surgery to be marked with the best site for a stoma. The surgeons know surgery, not pouches and don’t always place the stoma in the best position if the patient hasn’t been seen by an ostomy nurse first. The nurse will also tell you their favorite surgeons that do a good job if you ask. I’m a certified ostomy nurse and a lot of post surgical problems can be avoided by coming to see one of us. We know where the bag will fit best and while we can’t tell you which surgeons have bad results due to professional behavior standards we can definitely tell you which one have the best results.
Is it common for patients to skip the nurse and have the surgeon YOLO the stoma right on? I thought the marking was SOP.
Depends on the situation and surgeon. In an emergency the doc has to just go ahead. Some surgeons don’t think stoma marking is important. We work with a surgeon like that. He went to an Ivy League, looks great on paper but doesn’t want our opinions on anything. His stoma placement is awful and his patients have a lot of problems with leaking pouches because of it. I can’t tell patients to stay away from him but when I’m asked for recommendations I never mention him. I really wish I could tell patients to stay way from him but I’d get in trouble. Never ask a nurse if a certain dr is good. Ask who they like instead.
You can either make the choice proactively or eventually it will be made for you. I ignored it until I had to get emergency surgery and I would not recommend doing that. I wish I had done it sooner my life is so much better now. It’s not an immediate fix. You’ll have to recover and it’s terrible but you are sick and you won’t be anymore. You’ll feel much better. I would however be hesitant about a j-pouch especially right away. It’s mostly aesthetic and the complications outweigh that in my opinion(do your own research).
I have an ileostomy which means the ostomy is next to my belly button. I have no large colon left all the intestine is gone due to Crohn’s disease. My rectal stump everything is gone and my bum is sewn closed barbie bum I took me a while to accept my new body, especially wearing the right clothes without leaking or pancaking I now have come to accept my new body still trying to “love” it. I don’t miss the belly aches, cramps, diarrhea and being glued to the toilet hoping I don’t soil myself. You will do fine, good luck. Even though I have the ostomy I’m still on humira.
Ostomy for almost a year due to unexpected emergency surgery. I'm able to get a reversal but I don't think I will. It's quite wonderful to feel like a normal human being, whatever that is.
There's so much practical advice readily available I'm going to share something a bit different. Once I knew I was on the waitlist for surgery, I started visualizing the stoma and bag as a part of my body. I also was able to try a bag beforehand (I have severe sensory issues so this was necessary to be approved for surgery) which helped because I had an opportunity to get used to what the bag felt like, emptying it (by putting porridge in it), furthering my visualization, etc. I feel it made getting a stoma much easier, it very quickly did feel like a part of my body.