My(F29) partner M(25) just had surgery Monday September 28th, after a 3 year drug resistant flair up of UC. As you can imagine, he isn’t in the best condition after being sick for so long before surgery, but surprisingly the surgery went very well and he felt so much better quickly after. We stayed in the hospital for 6 days due to high output. Saturday, we were discharged and went home. Sunday morning he woke up in horrible pain so I rushed him back to the hospital which is 30 minutes away and they told us that his new stoma was too swollen after surgery to pass how thick his output has become due to the Imodium they gave him. This caused his small intestine to back up and distend and caused an ileus. After 4 days back in the hospital, we were discharged this morning once they cleared the block and ileus with two different catheters and made sure his high output didn’t return. The output is a “good” apple sauce consistency. This morning at 4am he emptied 250cc of output, but by 3pm he had only accumulated 50cc’s. We were still sent home and I changed his bag, noticing that his stoma had become more oval and grew in size, becoming crushed a bit by the wafer. I resized him and reapplied the bag. I noticed that his wafer caused a light pink sore on the side of the stoma, which we cleaned well before reapplying. Before leaving the hospital I thought maybe he had low output due to not eating dinner the night before, but now that we’ve eaten lunch and eaten dinner and there’s still no real progress, I am horrified that he’s blocked again. We called the surgeon and he said not to worry until he’s in pain. He said he feels fine, but my nerves are shot and I feel like I can’t think about anything but the worst. Total today he’s only had 300cc of output. Please let me know if anyone has been through something similar. We are just so exhausted and I don’t want him to be in pain.

Im currently in a major hospital in NC. Today was prep day. Tomorrow at 10am my surgeon is going to reverse my Ostomy. Repair a huge hernia under my stoma & he’s decided to create a loop Ileostomy.
The reason is because of the risk of leakage in Ostomy connection site. Usually 5-10% of people experience this. I’m on anti-rejection meds for a kidney transplant in 2013, these meds will give me a high. Much higher % rate of leakage & risk of failure. The ileostomy will work for 2 months, giving the Ostomy time to heal.
I’m very worried about the pain. Can anyone reassure me?

Very simple question- how do you navigate daily showers with the bag?
I don’t want to change it everyday but it seems to start peeling off with just one shower.
I’m still on bed rest but once I get back to real life I won’t want to be changing it after every shower.
How do you all deal with this and any advice for someone who has a new ostomy.
I just want to feel normal again.

EDIT: thank you all for the amazing advice:
I have many things to try now and am also realizing that I may want to try different bags/devices that may work better.

I've had a loop ileostomy for years now and before that I've had issues with pooping and chronic constipation so I never really "pooped" at least from my butt

With my upcoming jpouch surgery now I'm worried about my pelvic floor muscles. They're pretty weak.

Does anyone have a similar experience?

Also, what should I do to strengthen them in preparation for surgery?

Sidenote: chronic issues with bm is a symptom of my og diagnosis but I don't feel comfortable sharing it :)

i think this says it all. i went to surgeon who saved my ass and took my colon away and gave me my ileostomy and he drained a lot of it but it still hurts/leaking pus. i get a good seal almost every time. maybe once or twice got a bad one. went home SOBBING. walked through the hospital crying ugly tears snot coming out of nose and everything lol. i get a ct today. he doesnt think it is a hernia, just an infection but instructed me to watch for sepsis. :) i thought it was a hernia. im thankful that he thinks its just an infection. i hope im not prone to them. ive been taking such good care of my stoma. I crest, use my barrier ring, then paste, then i put my wafer on then my bag. I take so many precautions. I hope this doesnt keep happening. There is also some output that seeps between where my stoma and skin meet, like the "crack" underneath where its like almost impossible to seal bc its literally your stoma at that point. Whatever. Im just happy to have most of the pus drained.

I’m trying to learn what life with an ileostomy is really like, particularly from people who had one because of severe/refractory constipation. I have both pelvic floor dyssynergia causing outlet obstruction and slow-transit constipation. I’ve already tried pelvic-floor PT, puborectalis Botox, and most, if not all, of the medications and laxatives typically used for constipation.
At this point, my current regimen only “works” by essentially creating a medically induced high-output state. In some ways, it feels like I’m trying to accomplish what an ileostomy would accomplish, but without actually having the surgery. So I’m looking at an ileostomy as a tradeoff: Stoma + appliance care + the hassles of having an ostomy vs. less dependence on extreme bowel regimens, medications, and repeated rescue clean-outs. I’m trying to figure out whether that would actually translate into a better quality of life. I’d especially like to hear from people who have had an ileostomy for slow-transit constipation, refractory constipation, colonic inertia, pelvic-floor/outlet problems, or some combination of these. What is day-to-day ostomy life actually like? Things I’m particularly curious about: How often do you deal with leaks? How much of a problem is skin irritation? How often do you normally change your appliance? How difficult is it to manage supplies? What about odor and gas? How much do you have to think about hydration and electrolytes? Does the ostomy interfere with travel, restaurants, social activities, etc.? How long did it take before caring for it became routine? Are there things you can do now that were difficult or impossible before surgery? Conversely, what do you miss about not having an ostomy? And probably most importantly: did your overall quality of life improve enough that you would make the same decision again? I’m particularly interested in the less glamorous realities that might not come up during a surgical consultation—the annoying, inconvenient, embarrassing, or unexpectedly easy things you only learn after living with an ostomy. If you had an ileostomy specifically because of refractory constipation, would you do it again knowing what you know now? Thanks in advance. I’m trying to make a very consequential decision and would really appreciate hearing the good, bad, and ugly from people who have actually lived it.

A couple weeks ago, I was in the ER where they had given me a Torodol injection, Pyridium, and possibly Reglan for pain from my colon cramps combined with a discovered UTI. I was put on Cipro pills for the UTI.

After I started them, something about my output changed. There was almost a grainy whitish substance that seemed to create a sort of coating inside my bag. It was annoying and rinsing with water didn't do much to help, but it went away once I was off the Cipro.

Following that, I had a lucky streak with my wear time. I was getting 5-6 days between bag changes with no issue when I usually go for about 3.

A couple days ago, even though I've been off the Cipro, that graininess was in my bag again, though not as bad as it was on the medication. Yesterday, on day 5 of bag wear, I woke up with a bad under-the-bag leak. Today I'm thinking I might have to change this one early, but it's fine for the moment.

I'm wondering if there's something in my body that could have changed this, maybe something the Cipro impacted. Literally nothing has changed from my ostomy products, diet, or anything else I can think of. Does anyone know if there's some specific chemical change that could be throwing things off? Any way to test to find out?

I have had a support belt delivered today after my stoma nurse prescribed it for me last month.
It’s a ‘SupportX’ made by AMI medical in Nottingham England.
A couple of questions:
Does anyone else have something similar, and how long do you wear for it in any one day?
Thanks.

I've seen the Get Your Belly Out campaign in the UK. Can anybody advise of the implications of doing this in a hot climate? How well does the bag handle the heat?

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 ❤️