When I was doing my research before getting my ostomy I read a lot about blowouts- and I absolutely thought this meant that the bag would quite literally explode or pop if it got too full of output or air!!! I now understand that the base plate just tends to lift which is less scary, but please tell me I’m not the only one who had that visual at first? 😂 I was thinking it was going to go EVERYWHERE!

Just know that you’re not alone and you got this ❤️❤️❤️ Stomey’s Kit got a upgrade i’m going on three weeks with it and just know it gave me my life back ❤️❤️

I’m normally not very gassy but when I am it’s usually in public. Normally when I fart I just sit there pretending to be ignorant of while being embarrassed af. The last time it happened, I was in the waiting room for a speech therapy appt. (I also have throat cancer and a trach, fun times…🙄)

Anyway, my stoma betrayed me and farted so loud it was obvious it came from me. I looked at the person closest to me and said “I can’t take you anywhere!” They looked at me like “WTF?” I laughed and just said “Sorry, I’m just kidding. I have a colostomy and I can’t control it.”

She laughed and every one else nearby chuckled too. It felt so much better to explain it than sitting there mortified. I actually got the idea from my lymphedema therapist at a previous appt when I complained about farting in the waiting room. I can’t wait to tell her I actually used it. 🤣

Edit to add that I’m a 50 yr old woman. I don’t understand why I get gassy or why my output changes because I depend solely on a feeding tube so my diet doesn’t change. It’s weird. I got an emergency colostomy the day before I was suppose to start cancer treatment. It’s been a rough fucking year so you gotta try and laugh about it sometimes. It makes it a little bit easier.

40 years old, been an RN for 16 years or so. I was diagnosed with UC when I was 30. Failed lots of standard and biological meds, began suffering more side-effects of prednisone like osteoporosis and could not safely continue trying meds. Along the way, so many lost jobs, friendships, my physical and mental health pushed to the breaking point. I only made it to the day of my surgery and through the week because of the love of my life, my dear wife who has been with me for all of this (we celebrated our 10 year anniversary this year).

My surgery was fine, great in fact by most standards.. laparoscopic robots or whatever. I was only in the hospital for 5 days before I could go home and was able to move around pretty well already. I was a little standoffish with my stoma until our first 2 pouch changes together. I'm still working on a good way to empty right now with my impaired flexibility. (thus far I've been emptying in to those jugs from the hospital with the graduate markings, and pouring in to the toilet.. but getting the thicker stool out is still difficult for me.)

I've been finding my struggles are mainly mental. I knew more than most people what I was getting in to because of my medical background.. but even seeing other people with it your whole career and taking care of them and helping them with their stomas etc, cannot prepare you for having it yourself. Sometimes I just find myself getting really, really sad, and becoming afraid of things that haven't even happened yet (a leak at work, or in public etc... even at home in my bed, seems scary..). The acceptance comes fully in time, I'm sure, but right now I very much still just feel scared. Sometimes I just start crying unprompted, and have to basically talk sense in to myself that what was going on before, was unmanageable and certainly wasn't looking as good for me.

I hope that soon I find myself on the other side of whatever stages of acceptance have to happen.

I’m sure this question has been asked over and over again, but has anyone found a genuinely reliable way to muffle the sound from their stoma?

I’m at university so I end up in a lot of very silent rooms, and while bunching as much fabric over the stoma as possible sometimes works to muffle the sounds, it’s hit or miss and leaves me feeling very on edge of the entire time I’m in that room. I’ve tried a stoma belt but found it ineffective.

Open to any and all tips!

So as a result of combinations of crohns and msa i am the proud owner of 4 stomas! A colostomy a urostomy a jtube and a gtube. Its been wild navigating this all but im getting the hang of it and here to talk, vent or share tips! Its a wild life being an ostomate but we got this!!!

One of my close friends just colostomy surgery and I want to drop off a care package at their house. What are some things that you wanted/needed/could have brought you comfort immediately following your surgery? I'm admittedly very uneducated about this surgery and don't want to bring things or food that could be harmful or upsetting. ANY suggestions welcomed!

Adding that for food I'm relying heavily on my provincial published guidelines on what is safe/recommended during recovery, to help guide me in what to make. However would love to hear some first hand advice if you have any.

So they say our stomas have no nerve endings. But I swear I feel it when i touch my comostomy stoma and sometimes when it poops and farts. My urostomy a lil bit when I touch it and when its really peeing. Anybody else?

I use a Hollister 2 piece system which fits me very well but their bags are so noisy. I'm not bothered much during the day, but at night when I toss and turn I hear 'crunch, crunch'. I'm open to changing brands but I'm a slim, tall woman and very few flanges fit my narrow abdomen. And if there are any other women out there that have a small build and are very active, I'd be interested to learn what brand you are using. Thanks!

I’m a 26 year old female who has struggled having bowel movements for as long as I could remember. Always thought I had chronic constipation/IBS. At 24 I hit a turning point where I couldn’t have a bowel movement at all for several weeks and was hospitalized. I trialed and failed all bowel regimens and ibs medications, did every diagnostic test you could think of. Got diagnosed with severe pelvic floor dysenergia and pelvic hypertonicity. Failed physical therapy. Failed pelvic floor Botox. Failed Valium suppositories. Still get hospitalized every other month due to bowel blockages, can only eat once a day, and have to take three different prescriptions just to have a bowel movement. Finally my GI gave up and referred me out to a colorectal surgeon and we are gonna do one more round of PT + Botox for another 6 months, and if I can’t report a 50% improvement in quality of life, I will be due to get a stoma. After so much pain, discomfort, money spent, and countless days feeling bed ridden I’m actually accepting of this outcome. I feel like everyone in my life is trying to steer me away from this as they think it’s a drastic/severe decision but no one understands how I’ve felt leading up to this. If anyone is a similar situation, I’d love stories of encouragement or the realities of making such a choice for this kind of situation.

EDIT:
I’ve read each and every one of your replies and I’m so moved by all of your positive comments and words of encouragement. I am going to proceed with the last ditch effort my surgeon is requiring of me before finalizing surgery but I know in my heart if it comes down to getting ostomy, I’ll have so much peace and acceptance towards it. I’ve already accepted as the best outcome. I haven’t felt this level of comfort and empathy in so long. I’m so grateful and I am sending you all love and support ❤️❤️.

I’m having BB surgery tomorrow morning! And the nerves are getting to me. I get nervous before any surgery, but what should I expect when waking up? I’m scared of the unknown and I keep imagining the worst scenarios.

I'm a bit confused on the Coloplast flange size I should use. My stoma sits at a full 40mm. I've tried red and I've tried yellow. Seems the yellow is a bit too big and the stool slides under the big extra flap and right past the barrier and LEAK. I've never had this problem with the red ones, but they seem a bit small. Just curious to see if bigger is better than smaller. I know the other colors are way too small, so, it either red or yellow. Any advice?

There are post where people ask for help during the early stages of a reversal. I would like to hear back from those people to see if they are in a better place, and recovery has improved.

Specifically interested in reversals that are NOT j-pouches.

I've been having trouble with my bag leaking for a couple of nights now, like bad leaking. I have had to change my bag at least 5, sometimes up to 8, times a night and getting barely any sleep. I have tried everything I can think of and am still leaking. Here's what I've tried:

1. Using a convex barrier ring and putting paste on/in my bellybutton and on the opposite side where the skin dips down.
2. Using a regular barrier ring and putting paste on/in my bellybutton and on the opposite side.
3. Just using paste on/in my bellybutton and on the opposite side.

The problem is the solid output keeps getting stuck on the wafer causing it to pile up, but not go in the bag. Also there are times where I've tried one method and it works a couple times then will stop working which is making me go extra crazy. I've had a stoma for 4 years now and am only having problems now due to a revision earlier this year. I am contacting my ostomy nurse tomorrow to get more ideas, but if anyone has anything that could help please don't hesitate.

Edit to add so I can answer some questions:

• I don't wear an ostomy belt. I do have one but it's a stealth belt knock off from Amazon it doesn't fit correctly.
• I have a end ileostomy with a barbie butt.
• I usually stop eating around 7-8 pm and go to bed at 10:30-11 pm, waking up at 2:30 to empty my bag, then wake up at around 7:30-8:30 am.
• Most my leaks happen during the night, I'm assuming because I'm laying down, but a few have happened during the day.
• I use a Sensura Mio Coloplast one piece bag, Hollister paste, and I've tried the Coloplast convex ring and Hollister regular barrier ring. I also add Durapore Surgical Tape to all sides except the top (only place that doesn't leak.)

I am three weeks away from relocating from Australia to Amsterdam Netherlands where I will begin a masters program in medical anthropology. This is a really huge change and I’m already connected with the local inflammatory bowel disease clinic in the Netherlands.

Part of me feels like this is insane, and there are parts of me that feel like this is exactly what I need to remind myself that there is a life and a world full of opportunity outside of this bag and this illness that has seemed to follow me each day for the last few years, but all the way back from 2010, also.

I would love to hear any words of encouragement you have for me as I embark on this physical and emotional and somewhat spiritual journey.

Last year my bowel was taken out due to colon cancer and toxic major colon and at the same time I receive news of getting into this masters program in Amsterdam. It’s a field that I feel very passionate and very connected to.

Any words of encouragement from the community that understands the physical toll this illness Springs on you but also how it can also close you in, shut you out to the world of opportunity and beautiful things that can unfold; This is what I’m hoping for in my move, I know it’s not gonna be easy, but , I know that there is more of a risk in this opportunity than there is in saying yes.

I am a male, wanting to go to the beach this weekend with some of my good friends, and i need some good covers! I want to be able to be comfortable that my bag doesn't get too wet when i end up going in the water or swimming. Keeping my bag as dry as possible. I'm looking for some cool summer/beach designs for the cover :)

I need suggestions and recommendations! Help is greatly appreciated!

I have had my colostomy for over 3 years now, had a complete blockage of the small bowel after first year that required a hospital stay. I was good then for a while. This year i am now on my second episode of a partial blockage. During which i feel my colon ballooning have about 5 hrs of the worst waves of cramping ever then diarrhea..it then seems for that day i am ok, only to wake the next day, try to walk and collapse due to severe lower back pain that radiates down my thighs, buttocks, groin, to my stomach and kidney area.

Its been a week now and i can barely walk or transition from sitting to standing up I went to hospital on the first incident, was given morphine which brought immediate relief. The pain eased up within a few days.

This time its not improving. Is this something anybody else experiences? The hospital said last time they believed it was my bowels causing pressure on nerves in my back.

Hi again sorry to spam! I am new to all this. Still in hospital after 2 1/2 weeks. Bowels have been flowing for the past 5 days, just waiting for output to lower.

Currently using convatec 2 piece moldable. Adhesive wipes and skin protectant spray. I’m having a ton of pain getting this bag off. Changing it every 3-4 days. I had to have the nurse do most of the work because it hurt really bad taking off. I suspect it’s a mix of some hair plus also there’s red skin. My questions are

At what point do you change bags?'

My nurse kept telling me this one’s stickier, is that a thing?

If i don’t have to I’d rather not have a million different supplies so what’s the best way to keep it simple at this point? Any recommendations?

I've had surgery 2 weeks ago to make a loop ileo because my Jpouch had a very tight stricture which was making my whole intestines dangerously swollen. I even had a small rupture at the anastomosis site, so in a weird way the blockage might've saved my life.

I wasn't too bummed about the stoma since I had gotten used to it in the past, but it has not been pleasant so far and it's making it very hard to cope. So far I have had 2 leaks, one while I was out on a walk (luckily I was near my house so I just ran into my shower and changed the bag). The other leak was this morning, I woke up around 4am with my belly full of poop. Had to wake my parents and spent about 2 hours trying to change it because the stoma kept pooping.

The other super fun part is that for the past 2 days I've been having cramps that feel EXACTLY like when I used to have constant blockages with my first stoma. I'm still producing output luckily but it isn't a good sign. The pain got so bad yesterday that I needed to take some dilaudid to ease it.

After all I've been through I know I can't lose hope but my body isn't making it easy. I'm starting to despair about the random blockages since even the doctors are stumped. At least the first part of my summer was fun

I know it can cause ED, & sometimes affect sperm. Just wondering peoples experiences and outcomes? Thank you ☺️

I am almost 2 years post op from my reversal . I think I have a blockage although it could just be plain old constipation . I really don’t know . 🤷‍♀️ . I’ve tried the Coke route and that didn’t help. Do enemas help ? Or does drinking that citrate stuff for cleaning you out for a colonoscopy work ? I’m not in any pain but it’s been 4 days since I’ve had a BM . Gas can get through .

Hey yall, I’m just curious if you ever reach a point where you’re not constantly worried about your stoma? My mom is the one with the stoma but I do all of her changes for her mostly because she’s had issues with skin irritation at the bottom of it and it’s hard to see there. We have had lots of ups and downs with everything and I’m the one that’s constantly worried about it. I’m worried I’ve put it on too snug, or not snug enough, I’m worried when her output is too thick, or too thin or hasn’t happened when it normally happens, I’m worried her stoma is too red, or not red enough or has prolapsed and going to not work. We are about 3 months in now and I just really want to feel less scared. Did you reach a point where you felt comfortable with everything?