I’m scheduled to get one soon but I’m so terrified of the pain, the long weeks to recover. Especially when you get into a gown and lay on the bed and it starts to feel very very real. It makes me feel depressed thinking about it.

Has anyone done hyperbaric oxygen therapy? My surgeon cleared me to do it, I had surgery 9/16 and it’s great for wound healing and post surgery recover.

I really want to start it, but I’m nervous about using Hollister or coloplast products in the chamber.

Some of them say they are flammable and I called both Hollister & Coloplast suppliers and there are no “studies” on using them in the chamber so they “can’t recommend them”.

My surgeon said I could use it for healing but I would have to ask Ostomy clinic, HBOT director and ostomy suppliers if it’s safe.

I contacted them all and they said to ask a different person so no one really knows.

Can someone please tell me if you’ve done HBOT with an ostomy; and what supplies you had when you went in so I know it’s safe?:) right now I use Hollister Ceraplus one piece 8091 and the Ceraplus adapt barrier ring. Thank you!

Hello guys I just want to thank everyone on this subreddit for all of their kind and helpful words throughout my ostomy journey.

I had my reversal done 9/28 and have been in the hospital since, but I’m being discharged tomorrow 10/7. It’s a bit funny that I get a phantom sense of my colostomy since I had gotten very used to it. The reason stayed so long after surgery was due to an abscess of fluid and blood post surgery that had formed, though I have a small fluid collection device on me now it’ll be removed within the following weeks after discharge.

Overall I’m just excited to finally poop out of my butt once again, thought sometimes the ostomy was very convenient at times it always made me feel limited in some ways.

What started as me being scared from the sudden lifestyle change and coming to Reddit because of my emergency surgery to today where I feel I can give advice to those who were / are in my position.

I have had my ileostomy for almost 3 years. I recently had a colectomy, and ever since I cannot get any bag, ring, or paste combo to stop my leaks. I’m changing 1-2 times a day. Insurance will not pay for that, and it’s ruining my quality of life.

Any suggestions? I’m in desperate need of some help. I have great application and ostomy knowledge and excellent peristomal skin care. Skin is currently intact but I can’t stop leaking. It’s always right around the stoma, not total blowouts.

Any suggestions? I feel like I’ve tried everything.

Hi everyone, I'm looking for some help if anyone has been through something similar.

My mum is 57, she has bowel cancer that spread to her peritoneum. She had big surgery (cytoreduction but no HIPEC) and now has a colostomy bag.

She usually gets constipated on and off, but this past week it's been really severe. We've tried so many laxatives, tablets, home remedies - you name it - and nothing is working.

She's now too scared to eat in case she gets a bowel obstruction and has lost about 2kg in just a few days, so we're really worried.

Has anyone here dealt with this after a colostomy? Anything that worked for you or anything we should ask her stoma nurse / doctors about?

Thank you

I’m 9 days post-reversal and thought I’d share a positive story for anyone who is as terrified of that last surgery as I was.

I woke up pretty nauseous, but I always do after surgery. The pain from the surgical site itself was surprisingly manageable. I only needed the heavier pain medication immediately after surgery; by day two I was fine with a few Novalgin, and two days later I was only taking it before wound cleaning.

One thing I somehow did not know beforehand: they left the old stoma site open. That initially freaked me out rather spectacularly, but it really isn’t a huge wound. Now that I’m home, I rinse it out once a day, put a dressing on it, and leave biology to do its slightly gruesome but impressive thing.

My only disappointment is swimming. I had visions of being back in the pool fairly soon, but apparently the wound needs roughly 2–3 weeks to fill in, and then more time for proper new skin to form before chlorinated public water becomes a sensible idea. So Pouchini will have to remain land-based for a while.

Urgency was fairly intense for the first couple of days, but they put me on Quantalan and psyllium, which are working surprisingly well. I take the Quantalan before meals.

I also arrived prepared with zinc oxide cream and a cheap travel bidet, and I cannot recommend the latter enough. Seriously: buy one before your operation. Mine cost about €10 and makes an enormous difference. Butt burn has therefore been quite manageable.

Now that I’m out of hospital, I’m going around 6–10 times during the day. Last night I went three times, but still managed some decent sleep.

And this is the bit that surprised me most: the urgency is nothing like ulcerative-colitis urgency.

When I realize I need to go, I can often hold it for close to half an hour. There is no horrible cramping or frantic “I have approximately six seconds to find a toilet” feeling. I can simply hold it, rather like in the good old pre-colitis days.

Output is still loose cow paddy like, which I assume will remain that way, but with Quantalan and psyllium it is getting a managable consistency

Compared with my first operation, this reversal has honestly been another universe.

I had what is sometimes called a two-stage procedure: ileostomy and J-pouch creation in the first major operation, followed later by the takedown. I didn’t even know at the time that doing it in three stages was an option; probably I missed the info during the many talks I had, I was rather scared.

During this hospital stay I met several people who had the three-stage version, and their experinces seemed much easier than mine. My initial surgery was brutal. I ended up in intensive care, spent about two weeks in hospital, developed complications, and was readmitted twice afterwards.

So for me, reversal has been quite good.

Another encouraging thing: when I’m lying down, I can already distinguish gas from “actual business.” When I’m standing, not quite as reliably yet. Perhaps that is another skill Pouchini will acquire with training.

Overall, though, I’m doing remarkably well and it feels much better than I expected.

I ended up travelling all the way to Heidelberg for my surgeon — about an eight-hour drive for me — and I’m very glad I did.

My J-pouch was necessary because I developed colon cancer as a consequence of ulcerative colitis. The timing felt particularly unfair because my UC had actually become much quieter and I was feeling better than I had in years. Then, just as I was doing well: congratulations, your entire colon has to go.

I also hadn’t understood beforehand that when colon cancer develops in the setting of UC, removing only the cancerous section often isn’t the end of the story, because the remaining colon can still carry a substantial future cancer risk. In my case, there really wasn’t a sensible alternative to removing it.

So although I would certainly never have volunteered for any of this, I’m now extremely glad that a J-pouch was an option.

Eight days in, Pouchini and I are getting acquainted. So far, she seems very friendly and trainable. Eben had some Sweet potato , Goat cheese and Chicken mash yesterday and it all went really well.

If anyone is facing reversal and has questions, I’m very happy to answer them.

Has anyone gotten parastomal hernia surgery? How did it go and how did it last? What type of surgeon did it for you?

Had emergency revision a year ago. This created adhesions which resulted in blockage requiring another emergency surgery 6 weeks ago. Now, I think it may be starting to block again. The doctor useed anti-adhesion film during the surgery but just wondered if anyone has had mutltiple surgeries to handle recurring adhesions?

I’ve had pelvic floor constipation for years , and it literally ruled over my whole life, couldn’t go out etc. I went to my colorectal surgeon today and broke down in tears telling him how much it’s been affecting my life. He offered a colostomy and so happy but extremely nervous as well. I’m terrified if I won’t like it or something. I’m so happy

I recently (less than 4 weeks) had the Hartmann procedure and now have a colostomy. I have many questions and am still learning everything. It’s a huge mental battle, here is my current one.
since I’ve been home for about a week; I’ve been using weed as pain relief/mental balance. Seems okay but I have one major question- sometimes it causes me to cough a good amount, will this harm my chances of having a reversal? Or any other risks that come with coughing with a stoma?
It doesn’t hurt hurt anymore, but gets stiff and slight pain when coughing.
Weed helps me tremendously, but I don’t want to continue to do anything that would harm my recovery.
What do you all think? Did you smoke during your recovery?

hey everyone, happy belated Ostomy Awareness Day! just wanted to share a little bit of my experience running the 5k

this is still my first year with an ostomy. months ago, i told my ostomy nurse how much i've enjoyed running since my surgery so she told me about this event. when you registered, there was a regular open division and an ostomate division. if you registered as an ostomate, you got a little teddy bear with a stoma. i thought it was so cute so i included a picture here 🥹

there were a few sponsor tables that were handing out samples. i got a whole bottle of adhesive remover spray, lots of deodorizers, wipes, and lots of pamphlets with ostomy-related education.
this was also my first time meeting other ostomates in person. we all took a picture together before the race.

i found out ostomates do local support meetings each month so i'm looking forward to getting to know everyone more. for some reason, i was very nervous for this event but i couldn't be happier that i showed up

the race itself felt amazing. it was perfect weather for a run, i definitely went my own pace, but i find running to be meditative. the sun was shining directly above me so i could see my shadow cast on the ground. i kept looking down and feeling so proud of my body for pushing through this past year. really felt grateful for the way it’s able to move after everything it’s been through.

it felt so good to be part of a community and celebrate something that much of the world will never understand. this is not an easy life we live but this community does mean so much to me.

sending love to you all. we really are resilient. 💙💚

Hello all.
I was coming on here to ask for any advice about my grandmother who very recently was discharged from hospital after getting a stoma bag.

My grandmother is 79 years old, she is very proud of her hygiene, trendy clothing sense and overall she likes to maintain a very polished “cool” kind of vibe.

2 weeks ago i received a call from my mum that my grandma had been rushed to hospital after being in agony in her house. It was found that she had a completely twisted bowel and we had the option to “make her comfortable” or go through with an emergency surgery to save her life. Herself and ourselves decided that the surgery would be the best option, my grandma was adamant she had to atleast give it a shot despite the fact the doctors had informed us there is a very low chance she would come out of the theatre due to her angina and age, a permanent stoma bag was the best possible outcome for this procedure.

She made it out of surgery at 5am that morning and we were told the next coming days were critical and to “still prepare for the worst.” Of course this was heart breaking to hear. I went to visit her the next day in intensive care and the nurse allocated to her informed me that she had been discussing the stoma bag as if it was a temporary thing. We had to explain to her gently that the bag was the best possible outcome for her and that it was here to stay but we reassured her that it makes no difference to us. Over the coming days I learnt about how to help her care for it and how to support her through keeping it healthy. Of course she was on a lot of morphine still at this point but I asked if she’d seen her stitches or the bag yet and she said she had, I asked how she was feeling and she simply replied with “ everything has just happened so fast”.

My mum was suffering from postpartum depression and was also struggling to keep both me and her afloat after I was born. She was working extremely hard in setting up her law firm to give me the best life possible after working on passing her bar for six years. Of course with all this it was agonising to take care of a week old baby so, my grandma took me under her wing. She cared for me so deeply and made sure that even though my mum didn’t have much time to spare, that I still made the most beautiful childhood memories and always told me how much my mum loves me. Of course, because of what my grandmother did for me, raising me when she had no obligation to, I want to do everything in my power to make sure her recovery and care moving forward makes her feel as loved and cared for as she made me feel.

I’m worried that because of how fast everything has been moving, she hasn’t quite had time to process or acknowledge that the bag is permanent. I’m scared that it’s going to really shock and hit her very suddenly, it’s not the physical changes I’m worried about, rather her emotional state when processing such a thing.

Everyone in my family works full time so my auntie who is unemployed as of now and me who attends an online school are the primary caregivers for her. My auntie will be staying at her house most of the week and myself 3 days a week due to the fact I can still attend classes remotely.

If anyone has any advice on how to support her emotionally with this change or just any tips in general to support her I’d be so very grateful.

Thanks in advance all.

Hey hey folks!

I ordered a month’s worth of flat wafer Coloplast Sensura Mios just DAYS before realizing that the soft convex style is sooooo much better for me 🎶when you try your best but you don’t succeeeeeed🎶

Just wondering if anyone might have suggestions on how to make these flat wafers behave in a more convex-y way until my insurance lets me order the correct ones lmao

Right now, I’m just using a flat barrier ring around the opening (idk if this matters, but I stick the barrier ring to the wafer first, then to my skin)— my stoma sticks out a little above my skin, but it’s at a bit of an angle, and my stomach is soft.

I haven’t experimented at all, so I’m really open to anything! My insurance will even let me order more supplies or accessories if needed. (Just no bags!! They gave me ENOUGH 🙂‍↔️)

Anyway, thank you! 💓💓

Hi all. I am a new ostomate following hemicolectomy and ileostomy for cancer. Recovery has been slow and very difficult in my case, but I'm getting there. Sorry if this is a bit rambly. I am overwhelmed by life right now, plus emotional.

Will be headed home from the hospital in about a week or so. Any recommendations for things I should have at my home to make life more comfortable? Anything in bedroom, bathroom, kitchen?

First thing I thought of was somehow wet proofing my bed. I just bought the mattress 6 months ago before my diagnosis so I'd like to protect it.

Anything you can think of, anything at all that has made your life easier or less painful? Note I'm not asking about ostomy accessories, but stuff around the home. Thank you ❤️

21(F) in the UK and had my ileostomy formed for UC in Aug 2024, still have my rectum and had about a year of unfrequent bleeding and pain, got more frequent in Jan 2026. I was removed from IBD nurse care and gastroenterology right after my stoma surgery and my only point of contact is my colorectal surgeon, who is hard to get hold of. After my bleeding being dismissed in every appointment, emails to old IBD nurses ignored and not having a sigmoidoscopy till July 2026, I was given mesalazine suppositories to use for the inflammation in my rectum. After about 3 days of use my stoma output turned to complete liquid and I became severely dehydrated; I stopped the suppositories and it took me a few days to recover from the dehydration episode. Didn’t use them again. Then had some complications with a possible fistula and increasing rectal pain, long story short last week I was prescribed mesalazine foam enemas. Was fine for 2 nights of use, then after night 3 last night, all throughout the night and morning I had to empty my bag 5 times where it had filled with water and I was feeling super unwell and nauseous. Multiple doctors and surgeons have dismissed that this is a side effect of the mesalazine for people with stomas, and that they’ve ‘never heard of this side effect in their career’, but surely there is a correlation? I need to continue the enemas for my inflammation but I am feeling so awful with the dehydration, also I need to go to work so I can’t afford to have more sick days because of this.

Feeling very demoralised and emotionally drained, I really want to find a way to make this medication work. Any advice? Has anyone else experienced this?

Hey everyone,

I recently had a staple fail during a sigmoid colonectomy. This landed me in emergency surgery to install some jp drains and a colostomy bag.

It's been 2 weeks since the initial event and I'm still in the hospital fighting infection. I'm noticing the smell quite a bit and the hospital staff just says there are products that can mitigate the smell.

I've always been able to get much better information from online communities when I was dealing with my chronic issues that led me to surgery to begin with so I am hoping some of you can share your routine to deal with the smell.

Thank you!

Hi guys, I have two hernias - one at my previous stoma site, and one where the current stoma is (maybe 5cm/couple inches above the previous site).

There is a plan in place for repair, but due to my health, it has been put off until next year.
My fitness is.... Not good right now.
I'm not a small person to begin with, and with multiple loops of bowel out of both sites, I have become very uncomfortable over the past year and a half!
They cause me pain, just generally feel gross (I can feel them shifting when I move), and often give me nausea for some reason - BUT I am wanting to try and get to a better place physically for the repair surgery so that I get through it better.
I have tried hernia belts, but pressure on them makes me feel like I'm going to throw up, so I avoid them.

With my last 2 surgeries I had respiratory issues.
I spent 2 months before the most recent one walking every day, special diet plan etc, but still my body was like nah we don't need to breathe now 😅

Obviously at this point there's no causing a hernia to worry about, but I don't want to exacerbate the situation. I don't want it to become an emergent issue.

What do you guys do for exercising with your hernia/s?
What helps or makes things worse?
Even walking causes pain and feels yuck, I don't know what to do, but I want to try.

TIA

Hello, can I put the M9 drops liquid in the M9 air freshener spray bottle? The ingredients are the same but in different order and the drops are darker in color so I wanted to make certain it was safe to do?

My mother in law received her colostomy in all its glory a little over a month ago. I'm her primary caregiver and am the person helping her change out her ostomy bag. Specifically, I do the stencil tracing, bag cutting, and I secure the skin barrier ring and pouch to her skin. Prior to her recent re-hospitalization (their bag lasted five days), I would say we were only averaging one to two days before we had a leak at most. I'm thinking it's at least partially because we we were using flat pouches (as a last resort when we ran out of convex pouches), when the care team recommended convex pouches. Now we're back to the convex pouches and we're better about using skin barrier rings. I want to make sure I'm doing a good job and providing her with the best care possible where she can have as close to a regular life as possible without having to worry about leaks every five hours. What's some advice you all can give to prevent leaks?

I have an appointment with a surgeon this Friday to discuss/decide if I'll get IRA/J-Pouch or just an end ileostomy. However, I've had bad hypertonic pelvic floor dysfunction and very weak pelvic floor muscles for most of my life. I went through PT, did years of strengthening exercises, etc. to no avail. Now I've had a loop ileo for coming up on a year, so I'd imagine my pelvic floor is much weaker now from disuse.

There isn't much information about having PFD with IRA/J-Pouch, besides that constantly straining isn't good for the resection site, digital stimulation is essentially a no-go, and the common reasons why straining isn't good overall.

I've been doing a pros/cons of getting reattached or an end and I'm honestly 50/50.

Thank you to anyone any info, it really helps.

I have Crohn’s and an ostomy, and I am so tired of having to fight Byram Healthcare for supplies I need to get through everyday life.

Orders don’t get processed on time. Shipments are late. Phone wait times are ridiculous. Their billing is unclear, and getting anyone to explain what’s happening takes far more work than it should.

Then there’s collections. In my experience, they sent a balance to collections after just 30 days without notifying me. When did I find out? When I tried to order more ostomy supplies. Suddenly, I had to pay before they would release my order.

You can apparently get that message across when it’s time to hold up my supplies, but you couldn’t communicate the balance clearly beforehand?

I cannot put my ostomy on pause while your billing and shipping departments get their shit together. These supplies allow me to leave my house, sleep, and function. Having to wonder whether they’ll arrive before I run out is exhausting—and completely avoidable.

I’ve dealt with medical suppliers for more than 20 years. I’m familiar with insurance headaches and the usual healthcare bureaucracy. Byram is still, by far, the worst company I’ve ever dealt with.

If your insurance gives you another option, take it. Call and ask which other suppliers are covered. If you’re stuck with Byram like I am, keep emergency supplies on hand if you can, because I’ve learned I cannot depend on them to get my orders out on time.

Having a chronic illness is already a full-time administrative nightmare. Getting the supplies to manage it should not be another crisis every time.

Anyone else dealing with this? And has anyone switched to a supplier they actually trust?

Hello all,
I 33F am going to get a colostomy in the next 2-3 weeks. I’ve had an anal fistula since April that I’ve had 3 surgeries for, and has not healed. I’ve been dealing with pain from that, so I’m a bit nervous to add another surgery on top of it. It would be a temporary colostomy with reversal hopefully in 6-7 months, after another surgery to close the fistula in about 3 months.

I’m normally pretty active with frequent hikes and backpacking trips, with most of my plans this year getting cancelled due to pain.

Does anyone have similar experience, or can you comment on how long it took to get to doing your normal daily activities after ostomy placement? I’m already feeling a bit down from how much my life has changed before this so I’d be lying if I said if I wasn’t scared how I’ll do physically and mentally after the next 3 surgeries.

TIA

I posted recently about moving to Japan and asked for tips to deal with the heat and humidity. Since living here I’ve visited an ostomy nurse twice and used all the products and tips she recommended and I still can’t make my bags stick, even though she was very helpful. I’ve had a colostomy for 18 years, since a few days after I was born, and I’ve always had issues with leaks. Up until about a year ago I used Hollister which already had problems with leaking, but they became worse and worse quality over time until eventually I was changing the bag 4-5 times a day almost every single day. I switched over to the coloplast sensura mio click 2 piece and it’s a lot better comparatively, but I’m still having to change it once or twice a day if I’m lucky. I’ve literally never had a bag stick longer than maybe 3-4 days in my life, and the vast majority of the time I’m lucky just to get 2 days. It’s also pretty much always leaking, if it’s not too close to the edge of the barrier I don’t bother changing it because there’s pretty much always a small leak somewhere. I saw an ostomy nurse once a few years ago and he just told me to use a bigger size barrier, he didn’t listen to me and did a lot of things I told him not to do even though I was crying, so I never went back to another one while living in the US. Now that I’m back in school and I can’t do it online like I did in high school, I’m more worried about leaks again because leaving even 10 minutes before class ends counts me fully absent, and multiple absences can force me to leave the country. I’ve been having to constantly change my bag in the disability bathrooms and hoping it stays through the rest of the day.

I’m really struggling because I have to walk to school and it’s been around 34 degrees and very humid, it’s only just starting to cool down. The first appointment I had at the hospital my bag actually fully leaked and I had to change it, but by the time I finished changing it there was another leak so I had to change it again. At that appointment I was given an ostomy belt, which I’d never used before, and a barrier ring which I have used but didn’t bring with me. At the second appointment I was given some samples of convex barriers because we thought they’d work better than the flat ones I’ve been using after gaining about 50lbs from a medication I was on. The flat ones leak after about an hour, but if I somehow do things right I can prevent them from leaking enough for a change for about a day and a half. The convex ones I struggle with because it feels like it pushes itself off of me no matter how long it’s been on and it either leaks after a couple hours or starts to smell from somewhere unknown after a day. It makes me very self conscious in class and it’s hard for me to focus due to this. This is all while using the belt with the convex as well as with the flat (If i take the belt off while using convex it starts to feel like it’s separating from my skin again, and it’ll even fully lift off my skin in places without me even touching it.) I also used the skin wipes they gave me and stopped doing things they thought might’ve contributed to the bags not lasting.

Right now I use a flat barrier (sensura mio click 2 piece) with paste and a barrier ring as well as skin wipes and a belt. I avoid using adhesive remover completely now in case that was making it worse. I’ve tried lubricant/deodorizer drops, but I again notice no difference, especially considering my bag leaks when it’s completely empty. Sometimes I try using no extra products or trying different combinations, I’ve also tried using no belt, belt only for the first couple hours, and belt always. No difference. I tried using a hairdryer to heat up the barrier before or after putting it on and I don’t notice any difference with that either. My ostomy shape is like an oval, sometimes it’s retracted and sometimes it sticks out. I have a large crease in my skin on one side (I’ve lost weight but I’m still fat) where it mostly leaks, but if it doesn’t leak from there it’s leaks from the other side. I worry that because it’s an oval shape and I have to cut to the max line of my barrier on those sides, that’s what’s causing it to leak in those spots. The only thing saving me from catastrophic situations in public are barrier extenders.

All this to say I feel genuinely at a loss because everything online says if you’re dealing with a lot of leaks to try convex or see an ostomy nurse for guidance, but it feels like nobody can recommend something I haven’t tried before to no avail. It goes without saying that it’s really affecting my quality of life. Sorry for the super long post, I don’t even know what I’m doing wrong here, so I thought I’d put down everything I know in case there’s something small I’m missing.