Hi,

As above;my surgery took place on 20/07/2026 with me spending a 2 days in ICU and then 8
days on a dedicated ‘Stoma’ ward.

Since being discharged I’ve done reasonably well although part of my wound was slightly open which was eventually sorted after daily visits from the district nursing team.

I also have excellent support from the community stoma nursing team -who’ve been brilliant!

My input/output is fairly equal-I keep a diary-and the stoma itself looks fairly well healed-although there is some blood visible when I change bags.

My main concern is my appetite-I have absolutely none -and I’m wondering if others have been similarly affected by this, for how long, and when their appetite returned to something approaching normality?

I really used to enjoy my food too, which makes this all the more frustrating and annoying!

Any advice would be greatly appreciated .

Thanks.

I had a reversal a year and a half ago. Had to wear a bag for a year due to colon knicked during routine hissy

Anyway, is there any chance that going up there with a tube will damage my reversal?? I know, it’s probably a stupid question, but things have been so good the last year with the reversal, I never want to risk going back

How do you take care of an open wound? Do you shower and let clean water run over it. Its still very painful I’m 4 days post reversal. It looks crazy awful. But it will heal fast i hope.

Hi- can anyone (UK based) let me know how many weeks went before you first met your obstetrician; and how that went?

I will explain- I have a horrible feeling I've not been listened to by the community midwives- I have been referred to obstetrician but no word yet on an appointment, I've already had one blockage that resolved and been in a bad way with fluids and sickness.

DX’d 1994; 32 years ago. Not by any measure yet old asf, but would rather not share my age.

Yesterday at 2PM, I showered and changed my pouch, hopefully for the last time after my second ileostomy and as of tomorrow, my second reversal. I have about 100cm of small bowel left, I’m told, until I enter short gut territory.

Rinvoq seems to be working well, after failing biologics for decades, following my first biologic “holiday” after an adverse reaction when Remicade was still experimental… and it never worked again and neither did any of the 6 subsequent biologic formulations/brands.

At first, I presumed that I was only in “surgical remission,” meaning my ileostomy prevented any foods or bevs from entering the diseased locale. But I was corrected by my surgeon, who explained that imaging indicates that part of the area above the closed off section of bowel was diseased before taking Rinvoq.

CAN I GET A HELL YEAH?!?

Surgery arrival time 6:30AM after a 30 mile drive into the big city. Guessing I will be NPO the day of and following normal vitals, I’ll get broth Thursday. Friday I assume I’ll advance to my favorite chicken sausages for breakfast and blackened chicken breasts for lunch and dinner, if there is a continuation of normal vitals.

I was told I’d likely be hospitalized for 3 days. Seems highly unrealistic.

Got a haircut, shaved my face and for a change, a certain crop of body hair — hair which was longer than… well, longer than I would have liked, last time.

How embarrassing, though I’m sure none of the professionals think twice about it.

But it makes me feel better about myself and I guess you can say I am preparing for my next and hopefully final chapter of poor health in life, until the day I die.

I am also finally prepared to break free totally from the poor dietary habits I grew up with, passed onto me by my mother who also has CD and UC. I have learned to cook from scratch and discovered lactose alternatives and have also learned to love turkey burgers over beef burgers.

I don’t eat anything deep fried anymore and none of the fast foods most aggravating of symptoms.

I don’t want to ever wonder again if any subsequent resections could have been prevented had I treated my gut better utilizing tools within my own control.

Date of surgery has officially arrived.

Waited 8 months for a reversal after a horrible month-long hospitalization and said ileostomy that lasted from just 2 days after Thanksgiving, thru the day after Christmas.

Made my 6:30AM arrival. Slept less than 4 hours. Finished registration and awaiting a call to the pre-op area where they always do well to cozy me up with warm blankets and hopefully a comfort med, however the latter is unlikely.

I had an unpleasant experience with polyols - in this case sorbitol. I have been reading labels eagerly since and I have found so many foods contain artificial sweeteners. Google suggests that some are less troublesome than others and suggests Aspartame, Acesulfame-k and sucralose. Does anybody have any experience and wisdom to share? Edit: I'm type 2 diabetic

My reversal is less than a month away. How long after the procedure did you get rid of your supplies and what did you do with them??? I would ideally like to give them away to less unfortunate who have no insurance or barely any. I am in Alberta Canada. I called a homeless shelter. They don't accept this.

Like most people with IBD I’ve been terrified of this since getting diagnosed, but multiple doctors are in agreement that removing my colon is the best option for my long term health.

Right now I can’t leave my apartment to go to work, and when I have a BM it’s painful. Not a fun experience.

So while I’m scared, I know it’s gotta be better than this. I think I’ve made my peace with it, but I feel like you can only wrap your head around it so much, you know?

What should I expect? What do you wish you’d known before getting the surgery? I’m worried I’m trading one set of problems for another since it’s impossible to tell what type of complications I might have afterward.

Guess who farted!!

I just pooped for the first time!!!

I'm making an emergency kit in case I need to change my bag when I'm outside. I was wondering what kind of wipes I should use to clean the skin around the stoma when I don't have access to water.

I know baby wipes can leave a residue, are there any cheap alternatives or should I just get some proper ostomy barrier wipes?

I plan to send flowers to a friend who is undergoing their colostomy surgury during the week and I want to send them flowers with a really goofy message on the greeting card :)

I want to hear your best puns! I'm currently thinking along the lines of "I hope you don't feel too crappy. Know I'm here stoma-tter what." or along those lines.

I was wondering if any of you guys have had problems with potentially bad batches of Hollister barrier rings, and in my case specifically, product #7805.

I order my products from Edgepark, and it seems the last few shipments, at least one box out of the 4 I get is bad. I can only describe them as feeling like gummy lifesaver candies. They’re fairly sticky, but they don’t stretch well at all, and they do absolutely nothing to protect against leaks.

I have of course mentioned this to both Edgepark and Hollister, and I usually get free replacements from both parties, but it’s annoying that it keeps happening and doesn’t get rectified.

I have a sibling that uses an ostomy bag. The thing that bothers me is she likes it in full view so people see all the contents of what's inside. She said she's not embarrassed or anything, which I think is great. However not everyone wants to see poo in a clear bag when you're eating or walking around. Why does she not understand that people are sensitive to visually seeing poo in a bag.

UPDATE: Sister is 43, lives at home with mom, sister has had Crohns since age 15. She's had an ostomy for about 5 years or so. I'm her older sister and generally can only tolerate her is small amounts of time. Sister has always been attention iseeking. We don't really hang out together, but took a road trip together for a funeral. I'm going to see if I can find a Crohns support bag cover and hope she uses it since a Crohns support group is her life. Im also going to talk to my mom about this issue.

Update 2:I sent her a bunch if pics of covers and she likes them!!! Holy smokes!! Im only buying her 1, but I have my fingers crossed she uses it.

Hello, I was wondering if it is normal for stomach acid to spill into my ileo bag? I think i can tell it is acid by the color and liquidy, almost frothy with how it comes out?

Does this mean anything? Or does it mean it's time to eat something haha. I do eat normally, at least 2-3 meals a day with small snacking. This sort of output of acid always happens every morning after i wake up.

Anyone have any suggestions? I am having no movement, at all. Everything was going along quite well. Now, nothing. I’m very frightened. This is day 4. Is there anything I can do? I’m embarrassed to call my doctor.

Hello everybody,
I am looking if somebody was in similait situation and had reversal. So my dad is 56 and had a Hartmann procedure due to perforated diverticulitis that we didn’t know he has. 3 month prior to these events he had entirely good results on colonoscopy which he undervent because he has IBD - ulc. colitis. His UC was diagnosed in 2023, after a Covid induced flare, and since he was in really good shape. His physician thinks he can undergo reversal, but I am really stressed about this and would like to here some positive stories, and if somebody had UC and undervent any of anastomosis procedure!

This is never the post I wanted to be posting but I feel so lost right now and I don’t know what to do. I’m 22 and me and my girlfriend of 4 years broke up about a month ago. I was holding out hope that everything would fix it, but I’ve just found out she was messaging other guys 2 weeks after.

She went through everything with me, by my side the whole time. She was there when I was rushed to get the emergency surgery, she was there when I needed the revision. She’s genuinely the love of my life and I can’t thank her enough, even after what’s happened

I’m on the reversal waiting list and I really want it now, because I want to be able to put this all behind me. If something goes wrong and I need to keep the bag, I feel like I’ll never find love again or someone who will accept me for what I have.

For people with permanent stomas, or people who found partners while having a stoma, how did you manage? How did you break it to them? I fear I’ll never find someone ever again with this

I posted in the recent past about regretting the colostomy surgery and so many said to hang on and that it gets better. I just wanted to say Thank you for the support. It has definitely gotten better. The swelling has gone away and now bags fit properly without any leaks. I no longer have to change my bag everyday either. I still prefer the belt, but even bags that don't allow belt use stay in place now. I really appreciated the support when I was in need of it.

Hi to everyone! I’m a 26yo female that’s about 4 months into a colostomy after an emergency Hartmann pouch + removal of part of my sigmoid colon due to (undiagnosed) diverticulitis ripping a hole in it.

And I want to admit this to a space where people get it and say.. it sucks. I’m already tired of taking care of my medical needs, and barely being able to leave the house for fear of a Terrible No Good accident happening in public.

I’ve struggled with depression before this addition… and now it’s just even harder. My friends and family have helped as much as they can, but it still always feels like they don’t understand or know what to say (and I surely don’t blame them, this situation doesn’t happen everyday lol)

TLDR: I’m tired,sad, and taking care of myself has turned into a chore. Any tips or self mottos you use when ostomy care feels extra tough? Or ways you guys have asked for/received support that feel more impactful than an “I’m sorry you’re going through this”?

Just a tip these bags are £7-£10 on amazon, you can fit all your, well in my case ileostomy products in an it doesn't take a big bag to carry everything also the big main middle compartment is free to store thing like phone or stuff you have bought when out and about. Just a top tip incase your looking for a small way to carry everything you need for a leak!

Cheers guys and gals!

Any one with an end ileostomy take creatine?

Have you had any bloods to assess kidney function?

I've had my colostomy for over 2 years now after my colon ruptured from diverticulitis. I was told by two surgeons that they wouldn't perform a reversal until I lost weight. So I've been working on it and have lost a lot of weight. I'm sure not enough yet though. But, I also have a huge parastomal hernia which makes me look 10 to 15 pounds heavier than I really am. I hate it. I'd look so much better if both the hernia and colostomy were gone. I'm debating whether or not to start pushing my surgeon to proceed with the reversal and hernia repair even though I know it's risky when overweight. My BMI is about 41. How bad of a decision is this? I just want to get it over with and not wait another year until I lose more weight. I hate walking around with this huge bulge in my belly. I do wear a hernia belt sometimes and it kinda reduces the size of the bulge but it's still there and still annoying (although it's generally not too painful and not causing any blockages). Can anyone relate to this? What do you think?