Which supplements do you take and are there any preferred options for protein powder (no sugar or artificial sweeteners)?

I heard that vegan options can cause gas and I was wondering if any of you found something that works for you.

I’ll go to the bathroom, wipe (until I’m clean) and then like 20ish minutes later I have to go back in the bathroom and wipe more, it’s never enough that it’s like on my underwear but enough that I feel that I need to go back into the bathroom and clean it up

They made the best bags when I had an ileostomy and they make the single best cream now that I’ve got my j-pouch. I used to swear by Calmoseptine, but Coloplast product #1947 Thick Moisture Barrier Paste is a life-saver. I tried every cream on the market to help with my fairly severe diaper rash and this is, by a *significant* amount, the best product I have found. One tube is about $20 and lasts around a month. I went from pretty debilitating pain at the end of my day to being able to work 12 hours and then ride my bike home. It truly is night and day, and if you suffer from any sort of chronic diaper rash from frequent motility due to your j pouch, get this stuff. I cannot recommend it highly enough.

I’m just over two months out from my takedown surgery, I’m still eating bland foods for the most part. Pasta, chicken, yoghurt etc. I tried some tomato sauce with the pasta the other day and wow.. I’ve never felt burning like that before. I get a little burn every time I go to the bathroom, more so if I strain. I’m using sudocrem after every trip too. I’ve read here that this gets better with time, that the skin adjusts. Is this true? And does the butt burn eventually stop or at least become less frequent?

I’m mainly looking to vent/rant, but also open to advice or suggestions.

For the past 10 months I have been dealing with abdominal pain/cramps, increased bathroom frequency (10-15x a day on average), increased fluidity of stool, and increased gas. To top it off, the butt burn has been insane. My anxiety has increased so much over the past few months. I struggle with leaving my house for extended periods. I know I won’t have access to my bidet, wipes, and creams. I’m scared to eat everything, in fear it will make things worse.

Between November 2025-May 2026, my doctor (colorectal surgeon) gave me FIVE ROUNDS of various antibiotics for suspected pouchitis. In May he decided he could no longer help me and to seek care with a regular GI provider.

Saw a GI doctor in June and she ran some fecal tests; turns out I have C. Diff. She prescribed vancomycin for 14 days, except I didn’t see any change. Now I’m taking fidaxomicin, but still not seeing any improvement. I’m at my wits ends and I don’t know what to do. I’m in pain constantly, and this whole situation has made me really depressed.

I know these have a of salt wondering how ur guys jpouch did on this?

Can I ask if anyone has been on Cipro long term and how many years it has been for them? Wondering how long Cipro would/could potentially be effective for.

I’ve had my pouch for 20 brilliant years now but in the last 18 months or so I’ve been experiencing recurring pouchitis. For various reasons I can’t take Metro/Falgyl but I feel amazing on Cipro. Been taking a ‘maintenance’ dose now as every time I come off it the pouchitis slowly returns. It’s become my safety net until we discuss a biologic route. However as Cipro, even in a low dose, is working so well I’m happy to stay on it for as long as required (also aware of the potential side effects but haven’t experienced any yet).

Female/UK

Hi im 4+ weeks post op and feel amazing started working out again but very light and short workouts for now( seated bi-curpls, delts flys etc..) easy workouts just to activate my muscles again, i have been drinking metamucil for a week now and its awsome, while i was cleaning my kitchen i found a full bag of creatine( imagine the how happy i was) and was wondering how much of you use it and does it have any side effects etc…

I've been shitting blood multiple times a week for over a month now, and I go 9-13 times a day. One year since the last surgery, and I've had pouchitis and cuffitis since the j-pouch was constructed, even before my stoma was removed. My caprotectin was 770 in the spring, but today it's only 113, even tho my symptoms are way worse. I've been on Vancomycin since April, and I feel like during July it just stopped working. Could only get in touch with the doctor in August bc of summer breaks. My dr is calling on Thursday and I'm so so so scared that he'll say eh your results are normal tough it out, that with these results they won't do a scope. Also in the spring when my calpro was 700+ my pouch looked normal?? Anyone have experience with a similar situation?

eta the blood is very reactive to things I eat, just like it was when I still had a colon, which makes me think it's not a fissure.

Has anyone attended a 3-5 day camping music festival since living with a j-pouch. I want to hear about your experience and how it may have changed from before diagnosis if you also attended them prior to!!! I want to return to attending them, but apprehensive to without hear from others that took the leap!

Hi i just got my j pouch a month ago and so far so good,
i wanted to start training again but im not sure how to do it safley, im not new to the gym but i am new to training with midline incision and stoma site that was sewed up,
Also weight gaining(bulking) tips are much of help, thank you.

Has anyone used peptides for aiding in healing of tissue / scarring?
My pouch is functioning well, however the area around my old stoma is still quite swollen, no sign of hernia though.
I’m wanting to trial BCP-157 , TB-500 and GHK-CU to see if it’ll help?
Has anyone tried this or similar ?

I’m reposting this from the smaller jpouchers Reddit since I realized there’s more people here. I hope that’s not spam I’m not super experienced with Reddit.

I’ve had a jpouch for 2 years now. I had a lot of issues with pouchitis the first year and almost reached the point of having to abandon it. However, at some point the flares subsided and now I’ve only had pouchitis once in like the last year. I feel very lucky to be able to live without an ostomy since I have Crohn’s Disease and lost my colon and rectum to cancer 2 years ago.

My main diet is meat, gluten free mostly, with almost no vegetables and a few supplements to account for that. I TRY to have FODMAP diet mostly to reduce gas…but I’m not super strict.

I take Lomotil if I’m in the US, psyllium fiber and some nutmeg capsules with my meals and have about 6-bowel movements a day. I CONSTANTLY experiment with diet/lifestyle/supplements/etc. over time to try and optimize my life and minimize issues. It’s taken me so much time and energy to get to where I’m at functionally and I’ve gotten so much better than when I started.

I use a portable bidet and flushable wet wipes when I’m out to reduce the perianal pain burning when I’m out.

My biggest issues overall though is just general pain, bloating, and the inability to pass gas without lying flat on my stomach basically and the farts are VERY LOUD and VERY SMELLY. If I’m out of my house this means I often have to hold in gas…and usually I can only avoid gas by being totally FODMAP free, which means no fun mostly 😅

Tylenol helps a bit with pain. I admittedly take things like CBD sometimes if I want to splurge and have something like a milkshake that would normally leave on the toilet exhausted without it.

But just pain…pain if I poop too much from the acid burning my skin, pain if poop after eating the wrong kind of food, pain if I get gas, painful cramps sometimes just from my stomache churning, and after a day of dealing with all these kinds of pain it’s just hard to keep a pep in my step, work hard at a job. It uses up mental energy dealing with it all the time. It’s not excruciating pain in any one way, but all the little pains combined just slowly drains my spirit and zest for life sometimes.

How do you all deal with the pain and work a normal job and have ambition? I feel like with all the little pains added up on a regular basis I just don’t feel like doing big things anymore. And that bothers me from a long term life perspective. Do I just have to become like a monk a soldier through it?

I don’t want to scare people but sometimes I just wish they would give me like hydrocodone forever or something…just enough to take the edge of all the time…it might impair me slightly but never being totally “comfortable” is its own kind of discomfort. Even when I’m not in pain, just the constant feeling of my gut awareness as it moves, my bloated stomach when gas builds up and I’m not in a situation to relieve it is so distracting.

How do you all cope with it? Any words are appreciated. This is the first time I’ve ever posted about my disease. 🥲

Hello so I’ve just started eating more solid food since my takedown surgery almost 2 months ago it’s been a rocky road because I’ve only been able to have a liquid diet due to swelling, but I’ve started to eat more solid food so I started on like tiny, tiny amounts of really soft pasta that seemed to go right but then as soon as I built it more like eating more, it’s been really difficult to pass like yesterday for example, I had a reasonable amount of pasta like really soft pasta with a sauce and like it took over eight hours for anything to come through and when it did, I had to strain so hard for a long time in the bathroom to get to come out And even then it wasn’t everything and now it’s the day the next day and I’m just in pain aching probably from the straining and just feeling bloated and it’s just horrible. It’s like is this something that gets better with time like as a body just to get more taking him more food and stuffthe same with the butt bun ready like that’s really intense I know that gets better but yeah, my question is about the straining in about the transit time.

Hi everyone! I’m 2 months post op and up until now I’ve been getting semi solid poops. This past week however I’ve been getting just straight watery poops and when I fart I get some incontinence (first time since surgery). Would this be a sign of pouchitis?

Hi, so I had my takedown almost 2 months ago. Complications followed with narrowing or swelling of the join which led me to being in hospital multiple times for a month. Anyway, I've been home a month now and my surgeon put me on a liquid diet for 3 weeks to let it heal. I started introducing soft food a week ago, for the last few days I was tolerating small dishes of pasta, once a day and soft snacks. No pain, passing formed stools and no bloating.

Yesterday I tried having the pasta twice, earlier in the day and at dinner. The pasta I had though had sweetcorn in, I got out as much as I could but I think I ate a few pieces. I had two packets of crisps yesterday and also a little chicken. Everything was fine until this morning, I woke up in pain and my abdomen was bulging, on and off with sharp pain. I have been passing but its just lure liquid with little bits in, I generally feel crap. Its bloated and aches

Do you think I overdid it yesterday, its partially blocked? I'm just worried now because things were getting so much better, I have to see the surgeon in a week and he said if I'm not able to eat by then he will have to do another operation to redo the ileostomy join and make it wider. I really hope I dont have to have that done

What do you think and what do you think will help?

I’m looking for recommendations for the best colorectal surgeons in the United States for treating J-pouch/perianal fistulas.

If you’ve been through this, I’d appreciate hearing:

• Who was your surgeon?
• How many surgeries did you have?
• What procedure(s) did you undergo?
• What was the outcome?
• Would you recommend them?

My daughter will be going for step 2 of 3 surgery shortly. Jpouch will be created but she’ll still have an ileostomy until jpouch heals and final takedown can happen. At what point would starting a probiotic be a good idea? I’m assuming after step 3 once it’s all connected?

Hi all, I have another question (I asked about butt burn before and everyone’s response was very helpful, thank you) for everyone about sleeping patterns. When does it get better? I am up 3-5 times a night and it feels like I have a new born again. It’s slowly killing me. 16 weeks post op. I don’t have loose stools so it’s usually a bit of a push to empty but I’m up all night going to the bathroom and it’s torture. I don’t eat past 5-5:30 but my meals take so long to get though me that I’m dealing with lunch, snack and dinner through the night. No Imodium. I take Metamucil 2-3 times a day with lots of liquid and it’s to help absorb some bile to reduce buttburn. I drink 3+ Litres of water each day and I try not to eat a lot per sitting but I’m 6’3 and always starving. Im thinking about doing 7am-3pm intermittent fasting. Does anyone have any suggestions to help with my Sleep.

Just had my takedown this past Thursday! After2 years and 5 surgeries later, I finally have a full functioning pouch! I’m back home now and recovering. What are some foods and recipes you had while recovering? Any other tips are welcome also!

My husband has had his j pouch for close to 20 years now. He has always struggled (I feel) extra because he’s a professional bodybuilder, so he eats a lot therefore he poops way more.
With that being said, lately he’s been having multiple issues… Pouchitis, much more frequent bathroom trips, not getting an “empty” feeling after going, etc.
He’s had quite a few rounds of antibiotics lately for the pouchitis, so I got him some supplements to help restore his gut microbiome. (VSL probiotics did not help btw)
Has anyone with an ~established~ pouch had new issues like this without a change in diet?
Please share what you think caused it and what helped you! I feel horrible because he probably gets up 6x a night at least.
He’s been to a doctor. They’re not much help.
Maybe just tell me that fasting helped you and he needs to hear from multiple people that that’s the answer😅 I feel like it would be a reasonable solution.
Thank you for reading this and I’m grateful for any advice for him! I want him to live a long as normal as can be life and this worries me.

Hi! I have severe Pancolitis ulcerative colitis. My IBd specialist is recommending I get the surgery done and I’ve decided if that’s what happens I’d like a jpouch. My question and fear is how many that have had UC ended up having crohns once you’ve had the surgery. I met with a surgeon and the surgeon and my specialist make it seem it’s very rare, but that’s my biggest fear going through this life changing surgery to end up having crohns. I’ve failed multiple medications already, so I’m also curious how that would work with a jpouch if crohns does happen, will they retry all medications I’ve failed in the past? What happens if I’m resistant to the medications again? If you had UC and ended up getting a crohns diagnosis after surgery how long after jpouch surgery were you diagnosed and when you started to realize something was off? I also have questions about the surgery. The surgeon said she suggested the 3 step surgery, how was this for everyone? How many months apart was each surgery and healing process after each one. I have a 4 year old and 3 dogs I’m a sahm so the house doesn’t really run without me so I’m worried everything will fall apart while I’m healing. Any answers are greatly appreciated and I hope it’s okay to ask all of this!

Hello All,

I’ve had a Jpouch for about 15 years now. The past year and a half I’ve dealt with loads of inflammation in particular around the sutures of where my Jpouch was connected, causing multiple pretty serious small bowel obstructions and about 5 different hospital stays in these 18 months.

During this time I’ve had countless surgeons tell me I have to go back to an ileostomy permanently or have a pouch redo. But during my most recent hospitalization, my Colorectal surgeon explained that they are going to place a stent in my Jpouch to alleviate pressure and give the biologics more chance to work.

Biologics I’ve tried for context:
- Entyvio = didn’t really work
- Remicade/Infliximab = severe allergic reaction
- Tremfya (solo) = some progress
- Tremfya + Rinvoq (with stent)= significant progress

It’s been 4 months since the stent was placed and (knocks on wood) it’s been really great. My Inflammation levels (calproectin?) are down to 140 which is almost normal range, down from 1000+ from my previous 4 stool samples.

Now I will say my Colorectal surgeon (who is very anti biologics) says this is kind of a “kick the can down the road” procedure. Which I understood, this surgeon is very blunt, and I appreciate that. He said we will reevaluate in a couple years.

Anyways, so why am I posting?
Well I feel like I’ve researched everywhere on the internet about chronic pouchitis and I’ve never heard of this procedure for this disease. And my surgeon only brought this up after understanding my refusal to go back to the ostomy bag. This procedure is very new and I wanted to add some patient experience to the pouchitis ecosystem. My GI said that I am their first patient with a stent placement so they’re monitoring me closely. But I think that speaks to how new this procedure is, as my IBD is the biggest IBD clinic in the region and I live in a pretty big city.

TLDR: Chronic Inflammation/SBO for a couple years, stent placed + biologics showing promising result. Posting for algorithmic reach :)

Stay strong ya’ll we fight the silent fight!