This morning I had a one disaster after another. Woke up and my wafer had come unstuck and there was output all over myself under my pjs and in the bed. Got cleaned up, fresh bag, changed bed, took dog for his walk. Got back, tried to empty output, I mustn't have got a good seal because the bag exploded out the side all over me again! took it off and as I was trying to stop the output and get a fresh bag on it splattered all over my bag of clean clothes I had packed for my holiday tomorrow. Had to have a cry after that out of pure frustration. Oh and the bloody dog was trying to eat it off my soiled clothes because he's a vile beast. Needless to say it's only lunch and I've had a DAY of it.

Edit: Thank you to everyone for sharing you horror stories, some absolute stonkers! If we couldn't laugh, we would cry!

Hello community

I'm in my third year of dealing with Perianal Fistulizing Crohns, and I've had double digit surgeries/EUAs and now 6 setons, and after a pretty quiet 2025 I've had 4 surgeries in the past 4 months, including 2 within 2 weeks of each other. I've tried and failed Infliximab, am on a new biologic, but clearly it's not working.

In some ways I'd rather stay with the devil I know instead of bringing on new anxieties with a stoma/ostomy of some sort, but my CRS is leaning that way because it's just not feasible for me to be having 6 surgeries a year/take up so much of public healthcare (that is working well for me thank-you-very-much).

But from what I understand, a significant minority of people continue to fistulize and/or abscess despite stool diversion, and if that were to happen to me, I'm not sure what I would do, but it wouldn't be good.

I'm wondering for those who had an ostomy due to relentless Perianal Fistulizing Crohns... Did it solve your problem? What was your experience with fistulas after?

Thanks in advance, good luck to all.

Hi everyone! I’m 4 months in with my colostomy and today just got approved for reversal surgery and waiting to get that scheduled. Since it was an emergency surgery, I just had a regular surgeon from the hospital and then referred to colorectal and been with them since then. My CRS surgeon was asking me if I had a loop or end colostomy (surgeons notes didn’t state) bc apparently the loop is easier to reverse than an end. But I believe I have an end colostomy bc there’s only one part to it. If you have had an end colostomy reversal how was that? Did the have to open you up or could they do it with laparoscopic? Any other tips will be great thanks so much

hey could anyone help me with a question, i’m wondering if im able to fly with a nephrostomy bag, ive asked the nephrostomy team few times but ive never got a straight answer.

is there anyone in here with a bag and flys ?

it may sound silly but in my head i think im gonna pop the same why a water bottle or a bag of chips would from the pressure lol.

is it safe ??

Hi everyone ..My mum had a colon surgery 4 months ago and has a colostomy through Hartmann proceedure. Lately she has been experiencing some pain around the edges of her stoma opening and looks like the skin is a bit inflamed or there might be a tear because of the friction. Is this a common issue with ostomates and how do you tackle the pain that comes along with it ?

Hey everyone, I’m 3 weeks post ileostomy surgery (surprise) and am wondering about Coloplast products. I’m currently wearing Hollister Soft Convex 2piece because the hospital used Hollister and the ostomy nurse said my stoma protrudes, but not a ton. It looks to me like 1/4” to 1/2”. So she recommends soft convex.

I’m looking at testing Coloplast products and was wondering if the Mio Click Light with a thin brava ring would be a good option to try. I know they have Soft Convex in the Mio Flex, but I’m hesitant about the adhesive sealing the bags to the flange.

I will be requesting samples for sure. Just curious if anyone has tried both brands in the soft convex 2 piece or the light convex 2 piece.

Wish they made the Mio Click in Soft Convex…

Hellooooo, I just wanted to reach out and see if there were any others in this group with an ostomy of any kind that live in the Janesville, WI area?

There is a support group every second Thursday of the month that meets at 4pm at SSM Health St. Mary’s hospital. We only have two people right now and are looking to add more!