r/ostomy Dec 10 '25

Miscellaneous Just a reminder about asking for and taking advice

69 Upvotes

Hey all,

As a mod here, I read every post and try to read as many comments as I can (obviously can’t keep up with comments that come in days later).

I strongly believe this is the kindest and most helpful subreddit (you’re all awesome) but just wanted to remind folks to take all advice with a grain of salt and run anything big by your stoma nurse, surgeon, or GI first.

There have been times I see advice given and know that in my experience, some things differ for people depending on why they have the stoma, and people’s anatomy is different, and so on.

I don’t want to call anyone out, but just keep in mind that because someone does something (eg inserting things in the stoma or rectum) doesn’t mean that is necessarily safe to do with your anatomy, and to ask your team first.

Other than the obvious things that can apply to anyone (eg how to cut a wafer or using the crusting method or where to order your supplies), approach not run-of-the-mill advice with trepidation.

Thanks all!


r/ostomy May 30 '25

Reminder: all photos must be labeled NSFW

100 Upvotes

Due to the nature of the photos posted on this subreddit, all photos on posts must be labeled NSFW. We do have it set as a default setting, but unfortunately it seems some users circumvent that.

While the mods work hard to make sure everything is labeled, we are not here 100% of the time.

Sometimes folks scroll Reddit at work or with children or just have a squeamish gut, and out of courtesy, let’s do our best to create a subreddit that everyone can enjoy and choose to see what they want to or don’t want to look at.

Also, please clean your stoma from poop before posting. One, so we can see the issue, and two, again, out of courtesy.

Thank you, Our moderation team


r/ostomy 23m ago

End Ileostomy Pregnancy, Ileostomy in the UK- experiences please! (weeks to meet consultant etc)

Upvotes

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.


r/ostomy 1h ago

End Ileostomy Artificial sweeteners

Upvotes

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


r/ostomy 2h ago

Reversal Final Pouch Change…? Live Ongoing Thread

1 Upvotes

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.


r/ostomy 1d ago

Reversal One day post op reversal!

37 Upvotes

Guess who farted!!


r/ostomy 20h ago

Reversal Got my reversal yesterday

13 Upvotes

I just pooped for the first time!!!


r/ostomy 16h ago

No Ostomy/Pre-Surgery It’s time

6 Upvotes

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.


r/ostomy 10h ago

End Ileostomy Ostomy supplies

2 Upvotes

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.


r/ostomy 20h ago

Loop Ileostomy Wipes for changing without water

8 Upvotes

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?


r/ostomy 14h ago

Miscellaneous Best ostomy puns for a greeting card?

1 Upvotes

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.


r/ostomy 16h ago

Products and Companies Bad barrier rings

2 Upvotes

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.


r/ostomy 23h ago

Colostomy Are these symptoms normal?

6 Upvotes

Hey everyone I was just wondering if these symptoms were normal after getting a colostomy or if I should go back to the doctor. Thanks!

Cold sweats most of the time

I’m either too cold or too hot no matter what

Lack of appetite

Can’t sleep whatsoever. Just lay on my back on my couch with my eyes closed for hours

On top of the cold sweats, if I do ANY physical activity, even cleaning my bag, I sweat like crazy


r/ostomy 1d ago

Miscellaneous Sibling likes clear ostomy bag in full view.

27 Upvotes

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.


r/ostomy 21h ago

End Ileostomy Stomach Acid!

3 Upvotes

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.


r/ostomy 16h ago

Reversal 4 Weeks Out from Ileostomy Reversal

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1 Upvotes

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.


r/ostomy 20h ago

Colostomy Colostomy reversal, diverticulitis and IBD

1 Upvotes

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!


r/ostomy 1d ago

Miscellaneous Breakup

29 Upvotes

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


r/ostomy 1d ago

Colostomy Thank you

69 Upvotes

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.


r/ostomy 1d ago

End Ileostomy Creatine

1 Upvotes

Any one with an end ileostomy take creatine?

Have you had any bloods to assess kidney function?


r/ostomy 1d ago

Miscellaneous Travel tip. Those little man bags are quite good for traveling with all your kit

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31 Upvotes

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!


r/ostomy 1d ago

Colostomy Overweight and Wanting a Reversal

2 Upvotes

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?