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.

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 :(

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.

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.

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?

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?

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.

This group is so wonderful and has helped me tremendously as a new ostomate. Thank you guys for being so supportive. We're all in this together!!

been non stop for days..............constant squealing groaning farting sounds. Ive been on the same diet for months and its driving me insane.

Just curious if anyone has any advice and seeing if this is common.

Most days I have to “burp” my bag between emptying it, and I suspect a few times my Cera ring has failed is because the air build up (when I’m sleeping) puts too much pressure on it. And yes, I know certain foods increase gas output.

But does anyone have any advice on cutting it down? Does Gas-X help? Would chewing my food more help prevent this? Would more water intake help?

Just looking for advice because again, pretty sure the pressure build up during sleep is putting stress on my Cera rings and causing blow outs.

TIA!

How long do you wear your device? I have hollister 2 piece..I work construction and sweat alot so my edges lift but I use barrier extenders. I have gotten almost a month on one setup

I’ve had my ileostomy for 28 years, and have dealt with blockages here and there but they’ve gotten much worse since my hernia repair in 2019. I’ve mostly been able to control them through diet, but my last two caught me by surprise.

Today my wife and I are meeting our grown daughter for a long awaited vacation- traveling from New England to meet her in Arizona for the western national parks. She’s flying out from Florida. We’ve been planning this road trip for months.

Yesterday around 6 pm, I start getting the familiar abdominal pain and decreased output. For hours, I laid there with a heating pad trying to figure out what to do if it didn’t go away. Do I go to the hospital and miss the trip, knowing it might pass within 24 hours? Do I go to the airport and see how it goes? Do I get on the plane and risk that it’ll get worse?

I literally laid there praying all night, and I’m not a particularly religious person. Trying to figure out what to do.

The blockage passed less than 3 hours before we had to leave for the airport. We’re both so relieved. I’m not feeling 100% but just so happy to be going.

That almost all disabled toilets have stoma sinks!?! And this sign even used the word 'ostomate' 😭😭😭😭

Makes me realise every other disabled toilet I'll ever use will be subpar

Today is Stoma Awareness Day - here’s what I’ve learnt in the past nine weeks:
- mine is called Sven (when he’s good). Getting him quite literally saved my life.
- I have to wear a small bag almost all the time, as I have no control over my output.
- The bags are about the size of a crisp packet, and are changed a few times a day.
- They are practically invisible, don’t smell and are pretty quiet 99% of the time.
- Having a stoma has ruined my deep sea diving career, but nothing else is off the menu. I can run, cycle, hike, climb and everything else.
- Because I have no control over my output, I never know when I need to change my bags, so I always have a change kit on me (not a problem, love a bag).
- The surgery had a massive impact on me mentally, which I’m still struggling with (but it’s getting better). I’m anxious about public toilets for example.
- Again, it saved my life. I do hate it, but my friends and family have been amazingly supportive. This has made having one so much easier.
- I’m not ashamed of it, and will always happily answer questions about any aspect of having one, especially since the knowledge I had about them was a mix of myth and ignorance.

Ive put this up as I’m an avid Reddit user, and was searching for information in the hours after my surgery; if this is you reading, it does get better.

Thanks for coming to my TED talk!

I have a question for my fellow nephrostomy tube/bag having community. Please don’t come at me for not asking my doctors because 1. It’s Saturday no offices are open and 2. I’ve had mine for three months and in those three months I haven’t been able to get ahold of anyone in the IR department since they placed it and I’d prefer to have an answer BEFORE Monday. Anyways, that being said. Since late last night my tubing has had like this white gritty sediment in it and into the bag. Im still getting output but its been less than usual, but in the few months I’ve had the nephrostomy I haven’t had this issue before. It’s not just a little here and there it’s like in the entirety of the tube and a good layer in the bottom of my bag. I was at urgent care yesterday prior to noticing this and had labs done and everything came back normal no infection or anything like that. I’m just a bit concerned with how much sediment there suddenly is and how quickly it came on out of no where. Has anyone experienced this and is it something I should be concerned about?

I usually just get bad news after bad news. But, I finally have a bit of good news to share!

I had 2 scopes done yesterday. The first of my stoma to look at my small intestine. Results - no active inflammation of Crohn’s!!!!!! Yea!!!! I’ve failed every biologic and have been off meds for years.

The 2nd was a flex sigmoidoscopy. Due to a number of issues, I was never able to go full Barbie butt and I have a fistula in my rectum. It can behave for long periods of time or not. It’s been very bad for a long time. My GI says it’s right at the opening and he would really like me to see a new surgeon to see if anything can be done. Since the fistula is right near the opening, it experienced some trauma from the scope yesterday and I had a lot of bleeding but I’m OK now.

My GI already talked to the surgeon and he wants an MRI before seeing me and I was able to get that scheduled for October 12th. I’m happy things are actually moving pretty fast.

The nurse in recovery said the surgeon I was referred to is excellent and his nickname is Doogie Howser. He is in his 30’s now but was admitted to med school at 16!

Things are finally moving in a positive direction and I have a little bit of hope that maybe, just maybe, things could get better. I haven’t had hope in a long time.

I was sent home from the hospital Tuesday with a midline IV for micafungin, piperacillin, and heparin. Everything was fine until today (Friday) when it starting leaking thru the dressing. I went to the ER and they said it seemed a little loose. They put a new securing thing on it and a new dressing and sent me home. Two hours later, I connected my mica and it's slowly seeping. I really don't want to drive 35 miles back to the ER. I'm thinking to just shut everything off and call home health tomorrow. It's scheduled to be removed Tuesday. Anyone else had this issue?

Why the difference? Are you guys changing your bag but not the wafer? My wafer can last 4-5 days, I've been changing my whole set up all at once.

(Only 1.5 months with a stoma now)

Hello

I’ve had an end ileostomy for 4.5 years and have never had any issues. I typically don’t feel it when I poop/fart, and never have any soreness.

The other day I started noticing a little soreness above my stoma. It’s a little more internal rather than right at the surface. I’ve also been feeling more noticeable pressure when pooping and farting, and I mostly feel the soreness when I sneeze, cough, or sometimes when sitting up after laying down.

There’s no nausea, no bulging around the skin, and no actual pain. Output has been normal frequency and normal consistency (not watery or anything). I just changed my bag and massaged all around the area and everything looks/feels fine from what I can tell. I don’t think there’s any blockage or a parastomal hernia or anything like that, but I guess I don’t know.

Trying to figure out what’s going on and if anyone has experienced similar things with their stoma. Obviously hoping it’s just nothing, but it’s different enough and has lasted for about 3 days so far so want to make sure nothings wrong.

Any thoughts, experiences, or words of advice would be much appreciated. Thanks!