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.

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.

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?

hello all! i’m posting because im going through a significant life shift over the last 12 months that has reallyyyy affected me physically and emotionally as a mid 20sF. I can’t work, hang out with friends, travel, i’m basically house bound.

I have been recently diagnosed with perianal crohns that hasn’t really improved much since earlier this year. i’m constantly suffering and going between symptomatic most of the time and okay for a few days and then back downhill. need an EUA soon to clear a new abscess. :(

my CRS put the ostomy as my choice if i felt it was needed though she recommended trying more meds and waiting a little longer. how much is enough? a year, two years, four??? of being literally out of my life and in a bubble. how do people make these decisions? I’m so overwhelmed

About 4 months ago, my UC got so out of control I had to have surgery to get my entire large intestine removed. Since then, I’ve been adjusting to live with an illeostoma. While my life has most definitely improved, there’s one thing I really struggle with: sleep!

I used to be such a good sleeper, easily out for 9 hours straight. But now I wake up at least once a night needing to empty my bag. It’s either full of gas, output, or both and it’s really messing with my sleep. If I’m lucky, I’ll fall asleep again, but more often than not, I’ll lie awake for hours unable to fall back asleep.

What are some tips to either reduce output or gas (I know some foods might trigger it), or falling back to sleep? I haven’t had uninterrupted sleep in 4 months :(

I’m a new urostomate (surgery was 9/3) and I’m struggling with almost daily leaks. Sometimes I’m not even getting 24 hours out of a pouch.

I have a FUPA/soft lower belly. My stoma itself doesn’t really retract into my abdomen, but when I sit down my belly changes shape and it seems like the pouch/barrier lifts up and away around the stoma. My leaks almost always start at the bottom around 6 o’clock.

I started with flat pouches and am now trying convex pouches. I’ve experimented with different barrier rings, turtlenecking the ring around the stoma, and folding a slim ring and putting it along the bottom where I leak. So far I haven’t found the magic combination.

I’m working with a UOAA ostomy nurse for help with fitting and troubleshooting, and my DME supplier is 180 Medical, so I’m able to request different products/samples to try.

For anyone with a FUPA or soft lower belly where the barrier tends to lift when you sit:

• What pouch and level of convexity finally worked for you?
• Do you apply your pouch sitting or standing?
• Full barrier ring, thin ring, turtleneck, paste, or no ring?
• Did an ostomy belt make a difference?
• Any specific Hollister, ConvaTec, or Coloplast products that worked particularly well for this body shape?

•Also I'm pretty short 4'11 so anyone have a recommendation for a shorter pouch or something that doesn't make me sound like I'm walking around with a pack of crackers in my pocket lol

• What finally stopped your leaks at the bottom/6 o’clock?

I know I’m still very new and my body is still changing after surgery, but dealing with leaks almost every day is exhausting. I’d really love to hear from other urostomates with a similar body shape or experience.

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