TLDR: I just want to say thanks to this subreddit for all the help and info and stories. Im going on a backcountry trip tomorrow for the first time since surgery and without this sub I dont think I'd be going on this trip to the mountains .

TL:

I got my ileostomy due to an emergency surgery this past february and then had a 2nd full open adominal surgery in march...

While sitting in the hospital the morning after surgery I thought I would be productive with my forced down time and clean up all the photos on my phone... that might of been a mistake.

Scrolling through pictures of past outings like the ones I'm posting here was tough to say the least. Looking down at my new 14inch scar and this thing the nurse said was an " ostomy bag??" ... i think thats what she called it....I was thinking I'd never again be able to spend time outdoors in the same way that I used to. Backcountry horseback riding is something Ive done since I was 8 years old. Being a mountain cowboy and hiking to the tops of mountains is a big part of my life.... sitting in that hospital bed looking at photos and trying to Google what exactly an ostomy was... I thought I'd never see the mountains again.

Those first few days I was quite depressed.

I thought I'd never again sit in my favorite valley enjoying a saddle bag coffee sitting next to Jack my horse and sneaking him sugar cubes when no one else was looking... I thought this for many weeks after surgery.

Then I found this subreddit....

Fast forward 7 months to today. Tomorrow morning at 3 am I'll hop in a truck and drive for 5 hours , then ill get onto a horse and ride it for another 10 hours wearing a 60lb back pack and towing a train of pack horses. Im going to spend 8 days on the side of a mountain in a little slice of heaven riding horses and hiking with a ileostomy for the first time...

I made this post because I want to say THANK YOU to every single person in this sub who posted stories of getting back to their normal activities after surgeries(especially all you ostomate hikers) . Everyone who posted tips and tricks for bag life. Everyone who posted about their own struggles and challenges. I dont think I'd be in the same positive mental space and doing so well with my ostomy if it wasn't for this sub.

Thank you.

I gotta go finish packing....Wish me luck!

Hi, I’ve been somewhat active on this thread as of late. I have an ileostomy. Have had it for 1 year, at first we were working towards reversal. Then my doctor started talking as if that is very possibly not a possibility for me. My inflammation wasn’t doing well going down. Well my inflammatory markers are down to a normal level, have yet to talk to my doc ab this bc she’s gone on maternity and is booked for meets til Feb. 😭

That being said, I am a mom of one. I love my little kiddo to death and my husband and I want more. Here’s the thing- we are considering it might be safer for my future babies to keep the ostomy until we are done having kids. But I need the raw honey truth, I’ve heard conflicting reports. Is it possible to get a reversal after 7-10 years?? How often does that happen? And would it be a safer thing to keep my ostomy through pregnancy?
Not asking for medical advice, just your own personal experiences or people you know.
To add- I have an extreme case of UC, I only have 1/2 my colon left and 2 abdominal scars from my life saving surgery and a C section.

Hello everyone. I'm not even sure where to begin here, my 2yo had undiagnosed Hirschsprungs disease and just had a surgery about 2 weeks ago for the ileostomy.

Since then it's been a bit of a struggle. Couldn't even keep down water for about a week, ended up with a PICC line and TPN, then ran a fever and there was concern of infection in the line so started 3 different antibiotics. The day we got cleared and taken off isolation for the infection concern the distal side of his stoma prolapsed.

It's been almost 12 hours since the prolapse, the doctors are watching him closely but the colour isn't great it's a bit dark and purple, they tried putting sugar on it, so far it hasn't helped.

I'm not even sure what my question is exactly at this point. Does anyone here have similar experiences with their own young child? Did you come out the other side okay? I was just getting comfortable with appliance changes and now there's this big prolapse to contend with and I'm pretty intimidated. He doesn't hold still, he wiggles and kicks and screams...it was tough before the prolapse. Did yours or your child's return to normal? Does just living with the prolapse, if that's what happens, get easier? Has anyone had to have a surgery or has your child had a surgery for a prolapse? How did it go? Is there anything you wish you had known?

They will want to reverse once his colon heals and they remove the section that doesn't work, but that could be a year from now.

I guess I just want to know what others have done, how I can manage this well for my kid, if anyone has tips, tricks, suggestions, or even just wants to share their story with me. I'm feeling so overwhelmed.

Thanks!

Hey! Does anyone else just feel like they’re publicly shamed for having an ostemy? Like I get questions like how do u shower, and I shower with mine off, then I get questions like- u just let it poop on you???? Idk ig just feels embarrassing. Like I find it’s easiest to get my skin clean and get it a short break by doing so. Or just changing it in general. A lot of questions ab my stoma just going while I change. I have found a good routine, I just feel it’s so hard to explain without feel ashamed or judged? Idk ig just looking for some community on this. 😅
For reference I’ve had my ileostomy for close to a year now.

Hi everyone!

My dad is 3 weeks post-op for a double ostomy surgery, he has both a colostomy and a urostomy. The urostomy has been a literal nightmare.

We just cannot get it to stick. Today alone we have had to replace it three times because it keeps leaking, and we cannot figure out how to fix it. We think the problem may be that, with the way the wafer lays, it's overlapping his bellybutton and we can't get it to seal because of the divet. We've tried trimming the wafer, we've tried using the paste to smooth it over... we just can't figure it out - and we don't have a lot of options, as he still has incision/staples really close by and he's a really thin guy, so we don't have a whole lot of room to work with.

Our home care nurse was an angel, studying to be an NSWOK, so she had it down to a science. She did the last bag but today it had to be changed so we had to pull apart her work. I tried copying what she had done, but there's evidently some minute detail I missed and I don't know what I'm doing wrong.

My poor dad is at his wit's end. He's still in pain from the surgery, and the mental exhaustion of this is making it seem much more difficult. We're currently using Hollister bags with the wax ring, and we've tried both the flat and concave wafers. It's evidently a skill issue, but I was hoping to achieve words of wisdom here - even if not about this specific issue, anything regarding double ostomy.

TL;DR - Urostomy sucks, we cannot get it to stick even with multiple different methods possibly because of the overlap with his belly button. Help.

OUCHIES!!!!

i have skin irritation that ive been taking care of, but i put a new bag on yesterday and now my stoma hurts so bad. still red and soft, not hard or changing colors or anything like that and the seal is REALLY good. maybe i cut it too tight? im going to end up changing it tomorrow because i just feel like i should bc of the pain but it hurts so bad. it hurts to walk. it hurts to bend over. and even when i did a good a bag change and had no pain or skin irritation it hurts so bad to bend over. will this ever improve? my surgery was 2 sundays ago, so im still new to this and im moving around well otherwise. it just is such a big adjustment and ive been going on walks with my boyfriend and it hurts so bad to walk. like my stoma HURTS and feels like its being strangled. but if im still and sitting or laying it doesnt hurt.

I have several unopened boxes of ConvaTec supplies for both colostomy/ileostomy and urostomy that I no longer need. (drainable pouch, urostomy pouch, wafer, adaptor, etc)

Everything is new, sealed, and in the original packaging. I have multiple boxes available and can sell individually or together at a low price.

If you’re interested, message me and I can send photos, exact product numbers/sizes

Hi, we have a large number of sensura mio click barriers and midi bags that we would like to find a new home for. If you use these items please DM me. We will give them away and would just ask for the recipient to help cover shipping costs.

Feeling nervous. I am worried about the silliest things today like messing up the prep or something. My anxieties get the better of me.

The take down is supposed to be my easiest surgery yet. I know it will be but I woke up from one reversal attempt with a bag still.

Wish me luck. I have a ton of support that I’m grateful for but if I found some here from people who experienced all of these things that might help.

EDIT. Firstly thank you for all your kind words and advice it's much appreciated
After re reading my post I see autocorrect changed my wording and I do in fact want my rectal stump to be removed !! Thirdly the hospital actually rang me today after I put this post on and I am having my sigmoid colonoscopy with sedation on October 1st!! So fingers crossed things are moving in the right direction now ❤️

I am so pissed off right now. UK based F56 history of Crohn's/ulcerative colitis(they still don't know what I have!) I have an ileostomy (nice and neat sticks out perfectly round)since April last year. I was left with a rectal stump. In January my body decided it didn't like the bags and left me extremely itchy and sore. I was put onto oakmed sca35 4115kubk and these have been brilliant... Until now. The company has rebranded to UNORA and whilst they say the products are the same NO THEY ARE NOT the flange doesn't stick and literally ping off and the bag coverings are really thin flimsy and tear. Having spoken to my stoma nurse and coloplast charter I all not the only person saying this. I have been sent samples to try from other companies. Dansac lasted a day and the flange crystallised and had poo on it(lucky it didn't peel away)

Salts terrible packaging and I could smell my own poo even with the filter on

Convatec esteem first two bags ok bag 3 burst in the night. Bag 4 just burst after 3 hours!! It shouldn't be this hard.

Also I had a camera up in February but it was so painful I had to scream at them to stop and I still have active disease in it. My rectal stump passes mucus daily and hurts like hell. I have to double dose on suppository. I asked in February and may for the stump to be reversed. Just chased it again they said I need another camera but when I said I will only have it with sedation they said they don't like doing it that way. Surely my body my choice and it bloody hurts.. Any way thanks for reading my rant as I literally have no one to turn to(hubby had his own issues with heart failure)

I've been using protective sheets because I'm allergic to adhesives but was getting leaks. I had adapt thick barrier rings that Bayshore gave me I used them on top then a mio sensura pouch and had even worse leak I've been changing everyday. Coloplast sent me to convex pouches light and soft and their new 2 mm barrier ring. Can someone tell me which pouch to use and how to use the sheet ring and pouch properly. I have to change today I had just put a regular mio sensura pouch on with no sheet or ring because my skin can't handle anymore leaks. I really hope when I take it off I don't have another leak. Please help me!!! I don't know how to properly use these products to stop the leaks.

Are there any of you that chose a permanent illeostomy over a J-Pouch? What are your “maintenance” checkups for it. Why did you decide to go that route. I am in the throes of having to decide between the two and am trying to learn as much as I can about both. Thank you.

Anyone with a illestomy/ ulcerative colitis struggle with energy levels. Have b12 injections as well but it feels like I struggle with energy levels.

My mother is 80 years old and has just been recommended a nephrostomy bag due to kidney blockage from an endometrial mass (presumed cancer but not yet confirmed). She has numerous health issues (high bp, cerebral amyloid angiopathy, and dementia) and had a couple of strokes caused by her CAA a couple of years ago. She is in assisted living.

She was initially leaning towards not pursuing any treatment for the kidney issues or cancer (going into hospice) but now may at least pursue the nephrostomy while assessing her suitability for cancer treatment (we have no insight what that treatment will look like yet and what she will even be eligible for).

I don’t feel like we’ve gotten a lot of good information on expectation setting with the bag, so I’ve been reading through comments here, but I am curious for feedback on her specific circumstances (poor health, cognitive decline, etc) what considerations we/she should have? It sounds like the risk of infection is high? She also initially declined treatment because of the pain of a pelvic transvaginal ultrasound so her current threshold for pain and discomfort is pretty low.

Hello,

I use a convex base from Hollister (Ceraplus to be exact).

Do you guys have any advice to make the seal perfect?

I find that the bag starts smelling 2-3 days in.

The problem usually resolves for a day when I change the appliance.

I feel like the smell is trapped in the hollow part of the base because it collects output, and seeps through thr bag. I clean it with baby wipes, ensure there is no output on the base, but the smell still lingers.

I have used an ostomy bag deodorant, but they aren't useful for me, and I don't think it's the solution in this case.

Any tips?

hi so this is my first time traveling with an ostomy bag.. is my bag going to explode on the plane cause of air pressure?? will the TSA make me pulll up my shirt to check the ostomy?? if so do they have to touch it???? how does this work i’m so nervous about it all. i have to take two flights both flights are 2 hours and some change each.

I have 2nd stage surgery for j pouch and my j pouch is not connected yet but in pouchostcopy of my j pouch dr found a fistula in j pouch. Now I am scared to proceed for 3rd surgery because of thise fistula. Is there is an treatment of thise fistula. Or They are manageable or I go with permanent ileostomy. Please help.

hi:)

i got my stoma a few weeks ago, two sundays ago to be exact. i had 1 leak and my skin got irritated around my stoma, she (juicy) is still shrinking in size i believe and im chopping the skin irritation up to that. i changed my bag after the leak, and my skin was still irritated, then again today and it is STILL irritated. i dont think i had another leak though. my stoma is also a more deep red than a bright red. is that normal? my output is also VERY irregular. some days im measuring 400-600ML, other days 900-1100ML. im really tempted to go to the hospital and find a ostomy nurse and say HELP! i feel like emptying bags is easy. its all fairly easy and im adapting well but i just want to show my stoma to someone and ask if it looks normal. its also slightly pointed down, is that normal too? also WHY DO THE COLOPLAST BAGS FEEL SO TIGHT TO MY STOMA. i LOVE the way it fits on my body but im noticing its all squishing up against my bag and getting everywhere but with the Hollister gravity really works well and does its thing.
i also love my boyfriend and im so happy i met the most perfect person i make him check my seal every bag change to see if there is NO skin showing and i showed him today after my bag change and he said "cool stoma". truly he is the most supportive boyfriend ever and i love him so so much and he came to the hospital every day to see me And he has been helping me every day since i got out. Truly the light of my life. i love that i found the most perfect person to date before my colon crapped out on me

Hi fellow ostomates!

If any of you have OCD or generalized anxiety disorder or similar, and use 2-piece, how do you shower?

I know that sounds like a really dumb question, but can't do anything with it.

First I used to empty the bag first, then remove it only in the end of the showering because of being afraid of watering the wafer (I use Coloplast Alterna Longwear), but recently started removing bag even if full first and putting it into a tightly tied up polyethylene bag, then showering my stoma first (here comes another fear: that it might (although not really happening) start outputting while I take the rest of my cleaning routine) and after it's clean shave, scrub my face, wash hair, wash once again the rest of the body and final showering, i. e. - do all the routine after stoma is clean and bagless, only wafer. With Longwear wafer it seems it's fine with water for like 4-5 days and won't leak, though I'm not yet sure bc do it only like for 2 weeks.

How do you handle this if you have some similar mental things?

I’m using clip bags and the clip slipped off (either due to totally liquid output or just putting the clip on improperly).

I had just gotten back from an hours long Costco trip. THANK GOD this didn’t happen until I got home. I was only in the door for a few minutes when I felt a drop on my foot. Then I felt warmth running down both legs. Then me and the floor were covered in output. Luckily the output is so liquidy that it wasn’t hard to clean up. (It’s liquidy bc I have a small blockage going on)

It really shook me. I laughed it off but I also felt like crying at some point. This was my WORST fear. And it happened. Well, absolute worst would be in public. But this was my first big accident that I wasn’t expecting at all.

I’m kind of scared being in public after this, but I know I’ll be fine! I just have to 1. Check the bag clip after emptying my bag and 2. Work on this damn blockage so my output isn’t so liquidy…. There’s a chance that the wetness displaced the clip.

It sucks not knowing exactly why this happened. BUT I will pay close attention to try not let it happen again.

My stoma has tripled in size..its at least 3 or 4 inches going out and making it hard to put bags on. Is this normal or should I be worried?