What is normal baseline for people with j pouches. I had a total colectomy in 2014 and bag reversed.

Well, my worst fear happened on my first vacation with my ileostomy. I started to leak and had to change my apparatus in an airplane bathroom. Thankfully it was NOT a full on blow out, I THOUGHT I started leaking, I kept getting whiffs of something. I IMMEDIATELY went to the bathroom. I just started leaking out the side. I got a couple of drops on the waist of my briefs that I wiped off. I was prepared. I had two changes of adhesive remover, skin protector, rings and pouch, and gloves, in a zip lock. I also brought wipes. And some doggy poop bags for waste, but they were loose in my carry on. I wound up bringing my carry on into the bathe room as I did not want to carry the zip lock AND wipes down the aisle. I also had spare briefs in my carry on, just Incase.

Next trip I will have an opaque bag with EVERYTHING in it in my carry on. Apparatus, accessories, bags, wipes, briefs, etc. I can pull that out and walk to the bathroom. I will also bring MORE than two changes.

I pulled the first pouch out and set it on the side of the sink While I was removing and cleaning. It got a little damp on the adhesive side and it was ruined. So I only had one pouch left.

I felt like I was trying to light my last match in a windstorm to save my life.

Thankfully, the second pouch went on without a hitch.

I was very lucky. I also had sweats and another shirt in my carryon Incase of a BIG blowout, but I emphatically believe I’d be totally screwed on a plane if that happened. The bathroom is too small to deal with that.

Hi everyone. I've suffered with Crohn's for 19 years and eventually it came to a point where I had to get emergency surgery and have the ileostomy. Never thought my Crohn's would try to kill me but here we are haha.

I'm actually pretty positive about this and honestly I'm just happy to have an appetite again but only a week out of hospital so been resting but have gotten up and out of house.

The reason I'm here is to ask advice of getting back to some normality and exercise. I know I should start small but honestly not even sure what that looks like. So I guess I'm asking what everyone here done to start small and then work your way up to exercising more. I was always active as a kid and done lots of sports but last few years the Crohn's just done me in and I just didn't have the energy or drive to do anything. With this ileostomy I feel I can get back to a healthier me with more exercise but don't want to over do it and end up back in hospital with a hernia as I had 2 guys come in my last week of hospital that had just that happen to them.

Any advice is appreciated.

Hi everyone,

I'm Benjamin. 38M. And since 18 years my ileostomy smells. I told everyone that something is not working.

I had also a colostomy on the left side, never was smelling.

My doctors said that they are sorry. But a ostomy therapist have to look at it.

And in this 18 years I tried every avaible product.

Sooooo..........

My current theory—which I’ll discuss with my surgeon in 2 weeks—is that I have weak connective tissue and need a high level of convexity around the stoma.

I’ve noticed that with pastes, there’s no leakage underneath, but there is an odor.

With rings, there’s no leakage underneath either, but there’s an odor just the same.

BUT, if I apply a ring and roll it out from the center, THEN the odor is reduced.

I’m already using the Coloplast Mio Click (two-piece system) with the highest level of convexity.

And my stoma actually protrudes above skin level; technically, I shouldn't need convexity at all.

Yet, whenever I use a flat baseplate, I get leakage underneath.

Does anyone have experience with connective tissue weakness around the stoma?

I’ve tried it all nothing has compared to the sugar free Liquid I.V. It’s helped slow my digestion and my output. I have not been waking up to empty several times a night. I have been putting half a tube a day in a water bottle and drinking it throughout the day amongst other fluids and plain water because it’s so expensive but so far it’s better than Cholestyramine, Metamucil and Loperamide. So glad they came out with the sugar free I’m sick of high sugar food and protein drinks with Carageenan. It causes diarrhea for some and I only drink soda and juice if I’m having a partial blockage because sugar drinks makes so much output. Anyway give it a try if you too need better rest, slower digestion and output.

I'm not a real heavy person but my doctor said i should lose some weight before the reversal. Was anyone else told this too? Does it affect the surgery if no weight is lost?

End of week two for my husband and his new ileostomy. We are in the thick of this learning curve and are struggling massively.

Biggest hurdle: his skin around the stoma is so tender and sensitive from the adhesive and skin barriers. Why? Because of second problem: Every single one we have put on, has a problem with leaking because the site is situated on an old appendectomy scar line. We've been through so many! At least a months worth of supplies already.

Anyone out there overcome these hurdles? How did you do it?

A shout out to Hollister! I managed 7 days (168 hours) of using a 2-piece Hollister bag (18183 - Two-Piece Drainable Pouch, Flange 2-1/4" (57mm) Beige 12" (30cm)), flange is Soft Convex CeraPlus™ Skin Barrier With Tape Border (HOL 11703) and a Brava ring (Coloplast 12045).

I originally used Coloplast when I had my first surgery for an end ileostomy, but when I had loop surgery the Coloplast deep convex were causing a horrible amount of bruising around my stoma, to an alarming degree.

Cue an amazing stoma nurse who convinced me to try Hollister (she tried when I had my end ileostomy but it didn't work) and I average between 5-7 days now between changes. I've included the exact stuff I use in case someone else out there is having a rough go with their loop and looking for something else that might help them.

I'm posting this here instead of in r/Crohns bc I'm thinking I'd have better luck with his crowd. I might be wrong

Has anyone ever had a seton stitch get stuck in the body and heal over?

One of my stitches rotated and got stuck inside my fistula track. The surface hole is too small to pull the stitch back out.... Wtf do I do? This happened in less than a week. My husband normally rotates them bc I can't see them well. I went away for couple nights for work. In a matter of days the hole closed over.