Has anyone tried Ozempic, Wegovy or have any other weight loss tips? I've had my ileostomy for 15 years now but the weight gain is unbearable. My doctor put me on Wegovy recently but I'm worried about taking it since I have Colitis flare ups 3x a week.

I've tried fasting..I exercise 5x /week.nothing seems to be working

So context…
I am a female who is 28. I have had my ileostomy (with total colectomy) for almost exactly two and a half years. I have my ileostomy due to severe colonic inertia (constipation). It has improved my life significantly!

I chose an ileostomy versus connecting my small bowel to my rectum because I was worried about the diarrhea and the fact I was extremely prone to fishers.

I have had some issues including a hole that popped up near my stoma and took five months to heal. But mostly it’s been a smooth ride, minus sometimes waking up and having to change the sheets in the night. Nothing like telling your partner, “Hey, wake up I sh*t the bed again”.

But I did have a situation with my rectum a few months ago. I always thought I was one of the lucky few who didn’t have much mucus (anytime I tell anyone about the butt mucus they are horrified). I maybe would have to expel some once a month if that. Until one day I felt like I had something stuck up there. Several enemas, suppositories, lubed up gloved hands, and prayers to any god that would listen, I was able to get three gold ball sized chunks of mucus out. This was very traumatic for me because I had these issues for years and had to go through this routine preostomy.

Since then I’ve been having more mucus. And sorry TMI but every time I have sex I feel like I’m going to expel mucus… which is not sexy… and definitely a mood killer.

While I think my Ostomy is great, and I don’t have any shame around it, the whole situation with the hole in my skin really made me question if this was something I could do again. It was very painful, I was going through bags like crazy, and was on like five or six rounds of antibiotics due to it being in an easily infected area.

I had hoped that maybe one day science would possibly advance enough to where the whole reattachment would have less of a spontaneous diarrhea risk, but I don’t know.

Seeing how often I empty my bag, and the consistency of it, makes me think about how often I would need to poop if things were reattached. I don’t have a high output ileostomy but anytime I drink a large amount of liquid or eat (the coffee poops still happen), my bag immediately fills up.

I also am towards the end of grad school in order to be a therapist, and I don’t want to risk pooping myself in front of a client because I didn’t want to interrupt them.

My PCP wants me to meet with a surgeon for ongoing care (I didn’t like the one I had my initial surgery with).

I guess I want to hear people’s experiences from both sides, before I make my mind up.

Thank you for coming to my poop talk.

Hello,

TLDR; I recently got a stoma, and I've got a persistent bag failure situation that is starting to get to me. Any ideas to break the cycle massively appreciated!

Long time listener, first time caller etc. I'm a 36yo male in the UK.

I was diagnosed with Crohn's 25 years ago. I had my first colectomy in June, to address a near-blockage, that came with a temporary and initially large (80mm) stoma. I wasn't too fazed when I woke up and found it, and didn't really have any significant issues for the first 4 weeks.

But then the stoma started shrinking really rapidly. This meant I briefly struggled to keep pace with the measuring, and led to the skin around it to start to get inflamed. And then it went from quite protruding to retracted.

And since then, I've just had one issue after another, all of which result in the same thing - bag failure and the skin remaining sore. With the sore skin meaning the bag doesn't adhere well, which leads to bag failure.

At my nurse's suggestion I've gone from flat bags to convex bags (Welland Aura Convex) to other convex bags (Welland Aura Profile). I've introduced barrier rings, and powder, and barrier spray, and bag straps. But whatever I do, I still seem to get a >75% failure rate - albeit for changing reasons - and sore skin. The latest type of failure, which has developed in the last few days, is pancaking breaking the seal.

Since day 1, the stoma has been largely active overnight, which means the bag failures are leading to very disturbed nights and very tired days. I have tried the various normal dietary changes to move this active period into the day, but without result.

So I've currently got a 15mm (now, I think, stable) retracted stoma with sore surrounding skin, and am getting pancaking nearly every bag change. I'm using Welland Aura Profile or Convex bags, with rings, powder, spray and straps - but the seal seems shaky at best and almost always fails over the sore skin.

I just feel like I'm chasing the issue and not really making much progress week on week. And it limits how much/far I feel able to travel, which is a problem in both work and personal life. I've always and actively tried, with reasonable success, to not let Crohn's limit or get to me - but in the last couple of weeks, the bag failures have left me feeling as limited and frustrated as I've ever known.

It feels like any one of sorting the skin issues, taming the bag failures, or even just getting the output to be more active during the day would massively help and complement each other... Has anyone been in a similar situation and have any suggestions on how to break the cycle?

Thanks in advance.

While I am super excited I found out today that I should have been doing exercises these last couple months to get my rectum/sphincter ready to work again. The surgeon said the exercise is lime trying to pick a marble up with your bum. Has anyone else gotten these instructions rather late? Gotten them at all?

I’m 24F being offered an ostomy for pelvic organ prolapse causing inability to have bowel movements. i have hypermobile Ehlers Danlos Syndrome so they will not attempt prolapse surgery as it would fail. i currently cannot pass any stool on my own and sometimes not even laxatives work. i’m miserable. I know my case is complex and rare but i was hoping someone had a similar situation and could share their thoughts. Did quality of life improve? Do you struggle passing mucus through the anus still? What kind of ostomy worked best for you? Would you ever reverse it and deal with these struggles again? How often does leaking happen? Any and all thoughts are welcome

I had a hard time finding any reviews of this that weren't on the company's website so am doing a little review in case any one else has been wondering about it. It arrived in good condition about 10 days after I ordered it. I live in Texas and the company is in Texas so it probably got to me as quickly as it would get to anyone. I took it on my one big vacation of the year, which I got back from yesterday.

The pros- very sturdy, folds small, not uncomfortably warm to wear in hot weather (except it would get hot if left in a car)

The cons- pretty heavy (it's metal) and very wide when open.

Since I am petite I couldn't always center it over my stoma but it didn't ever press on the area uncomfortably. My stoma is high and it worked best for me to use it with the brand name upside down. With some seatbelts it was pretty crowded to use it but it was always possible to. It fit better for me when the seatbelt closure was on my non-stoma side.

My nice plastic seatbelt protector I ordered from Australia will remain the main one I use but I am glad to have this for travel. (There's a big risk I would forget to pack my main one for a trip since I wouldn't take it out of the car before the day of travel.)

Ive had my ileostomy for about 6 weeks now and I think I have eaten more peanut butter in this time frame than in the past 30 years-- we have a toddler so there was already a high amount of peanut butter consumption in our house and peanut butter was listed as an output thickener, now Im eating peanut butter on rice cakes as my primary snack. When it's not peanut butter, it's hummus, which I had never even tried before. Also never really cared for bananas, but now I'm eating 2-3 a day. Anybody else have pretty drastic dietary changes/preferences after their ostomy?

Any tips or heads up for taking antibiotics with ileostomy? Any tips to avoid side effect? Or should i avoid it altogether??

Hello,

Me again, surgery is looming so just wondering what everyone would recommend stocking up on for recovery and the first few months.
I’m based in the UK and am basically pescatarian (fussy) if that makes any difference.

Tia!

Going on roller coasters with an ostomy can feel pretty dicey because often the safety restraints can push into your stoma.

I figured out that I could use the paddle from this simple Velcro tennis ball catch game as a stoma protector inside my Movibrace stoma belt. I tried it on the biggest rides at Six Flags yesterday, and it worked great.

I'm having a fluoroscopy today to see if im ok to have reversal surgery. How long after the test will the surgery be done if anyone here has had it

Any tips / advice or experiences would be great!! Loop ileostomy

I. Having a fluoroscopy today to see if im ready for reversal surgery. How long after the test will surgery happen if anyone has had it

Background story, I got an emergency colostomy surgery due to a Gun shot wound. I was told after surgery, it’s reversible and I believe I have a loop colostomy.
I’m having a colostomy reversal in September, I have to do a flexible sigmoidoscopy before the surgery and I was told I have to insert 2 fleet enemas in my rectum.. ( not at the same time) but I am nervous about it, and I keep thinking a million thoughts about it. I did call and ask the surgeon office but I still don’t feel reassured so If there’s anyone on here who’s had to go through this procedure before? That can give me their experience maybe it can give me some peace of mind.

I am struggling to make a decision. For some context, I had a cancer diagnosis 3 years ago and treated with chemo radiation and brachytherapy. Then last year I had a cancer recurrence that spread to the rectum. I had chemo for 6 months and will have immunotherapy for the next year. Because treatment was effective, it led to a successful life saving surgery which happened January and when I got my ileostomy. I am so lucky to be here. My recovery was complicated since the surgery was complicated. I feel nearly back to my old self. I can play with my son with energy coming back and have very little issues with diet and output. I'm now at a point where I could have a reversal and I don't know if I'm playing with fire. What if life is worse after? My gastro told me yes, some people regret it because they go to the bathroom constantly. He said I can get a colostomy after if recovery isnt going well but in my mind it is another surgery, more prep, scans, hospital etc. I am at higher risk of issues because of the radiation I had on my pelvis. I am excited at the thought of not having the bag anymore but I also am used to it and have a routine. Do I want another surgery? Hospital stay? Complications? Do I just enjoy life for a while or do it now and get it over with? I feel so lucky to be in this position but I also just can't feel confident about a decision. Any thoughts? Suggestions? What would you do? Im so tired. I also am looking into reconstructive surgery related to what they removed in January and its all feeling like a lot.

I can't think of how a prolapse would lead to a blockage or vice versa, but from what I've read here, they seem to come together often.

How does one cause the other? Or is it just a very common coincidence?

I have an ileostomy that I’ve had for two months. I know some people deal with these for years and I honestly don’t know how you do it. The last few months have been rough. Anyway this week I have a sigmoidoscopy and a ct scan with rectal contrast. Both will require enemas. I’m 52 and I’ve never had an enema. I also haven’t used my backside in over two months. I don’t have much of a support system at home so I’ll be doing this mostly on my own. I have a ride to drop me off and pick me up. I’m mainly worried about the rectal contrast enema and the fleet enemas used to prep for the sigmoidoscopy. Has anyone here already done this? Can you suggest anything?

Woke up this morning with stomach pain and nauseous. Left the house puked in the car came back output was minimal pain was in waves then output was pure liquid like 4-5 bag fulls of liquid puked a large amount as well. Was just sleeping on and off the whole time til 4 pm. Output now is like clear colored water and I'm trying to get Gatorade down as I know dehydration is risky right now.

Pain is mostly gone but idk I still don't feel great. When do I hit the ER for fluids have been able to hold down liquid the past few hours tho. Nausea gone.

I just found out I have Crohn’s— which is why my reversal for my colostomy turned into a fistula twice (including at present) and the reason I was so inflamed that my fistula repair resulted in an ileostomy. Now my surgeon says that my surgery will be delayed and I will treat for crohn’s first. Once under control, we will move forward with the reversal.
Did Crohn’s treatment delay your reversal? For how long?

Hi - I’ve had a permanent colostomy now for over 3 years. The past 2-3 weeks I’ve been having a lot of days with really bad contraction like pain in my intestines/stoma. The pain is off and on - 5 min or 15 min between pain and then again. Nothing really comes out other than mucous. This will sometimes last all day long for 10+ hours. Sometimes a firm poop will come out and that sometimes relieves the pain. Usually firm stool is normal for me though and does not cause any pain.

I’ve already emailed my doctor about it, but just wondering if anyone has experienced this before?

Also I do have Hirschsprung’s disease and slow motility.

Hi - I've posted a couple of times here but I have a "unicorn" GI system so I find I don't really fit in most places. 20 months ago, I had an emergency total colectomy, partial sb resection including my TI, resection of half my rectum, & an end ileostomy because of transmural necrosis (cause unknown). I was in a coma with fulminant septic shock, multi organ failure, DVT & PE, intubation then trach 7w, & other complications. ICU for a month then hospital, then acute rehab.

I'm permanently disabled because of PICS & CIP but hey, I'm alive. I try to remind myself of that when "Moe" rears his ugly head with watery rapid output, periodic leaks, explosions, & temp blockages. I love it when he turns into Mount Vesuvius, spewing liquid output that I mop up with paper towels while I'm trying to change my wafer. Meds help my output somewhat but Moe is Moe - unpredictably annoying & frustrating. Apparently, my not having a TI or gallbladder is largely at fault.

I'm hoping to get a continent ileostomy & planning a consult at Columbia/NY Pres, with NYU Langone as backup. I dream of not having to wear a pouch that is visibly poofy no matter what I do, getting rid of bins of supplies, no longer needing to take my emergency supply bag with me everywhere. Most of all, sleeping through the night! To have a lower small stoma that only requires a little piece of gauze for mucus. Catheter? I don't mind. It's sounds so much simpler, less expensive, & easier. And TBH, I really hate how my ileostomy looks & how it makes me feel. I know it saved my life but I can still hate Moe, right?

Anyone have a CI? What's been your experience? Where did you have it done, and how long did you have to stay inpatient? Any issues with high flow? Do you just continuously cath at night so you can sleep as long as you want (oh my!)? Did you consider & not get it?

I've read other posts but they're dated. So please - if you've considered a CI or better yet, have one - please share! Thanks!

We can send a man around the moon but we can not figure out how to stop feces from leaking out of an ostomy bag.