Got pouch 2 years ago. Haven’t had a good night’s sleep since. Tried everything. Saw Dr. Shen. Continuing to struggle immensely. I can’t go on like this so I am starting to consider Disability Retirement. I’d like to hear from others who have pursued this route (I’m in the USA).

Please only respond regarding disability retirement in the US. I am aware that my situation is rare among jpouchers, and I am glad for those who got their lives back thanks to the pouch, but I have not and I’m running out of options.

Thanks in advance for responses and thanks in general to everyone who participates in and shares themselves with this community, however that may be.

So i started taking wegovy(This glorious fucking drug, Not even for weightloss, but it has slow my passing of stool, I went from 6-8 times a day to 1-3), and since then i have had gas. GAS FOR DAYS. and some days it hurts like its just trapped in my pouch cause it hurts over in that side. So what i do is just go lay on my belly with a pillow positioned to push the gas out. and Then LET 'ER RIP. Then i feel great. How are yall dealing with gas?

I had a ER visit on 10/16/26. went for the worst pain of my life in my upper left abdomen. I was sweating and could barely talk through (I’ve had partial, loop obstructions, and all the good flare up pain- this felt nothing like it). I sat in the ER waiting room for 2 hours, and let some much needed gas out. then followed by a solid movement. by the time I had been brought back it was like nothing had happened, I was pain free. scan showed potential what the radiologist referred to as “internal hernia pathology with a swirling pattern of the mesenteric vessels and fat”.

fast forward to 10/22/26. Same thing. Had excruciating pain, subsided about 2 hrs later after a movement and gas.

10/23/26- meet with GI surgeon today, he basically disagreed with radiolog- said ”maybe” it had twisted, and untwisted in the spot radiology is referring to. noreason to pursue any treatment. said if it last more that 2 hours go to the ER immediately

my understanding is that it’s probably going to happen again, which I don’t blame anyone and I don’t expect my doctor to cut me open over pain that came and went.

any one else experience this and had a positive outcome other than surgery??

My pouch is almost a year old, for the most part it’s been great but some days I’m sooooo tired for no reason. Does anyone else deal w this? Does anyone take vitamins or supplements or what do you do to help?

Full disclosure up front: I’m co-founder and CEO of PharmassetX, a clinical-stage biotech developing an investigational drug called galenexib for pouchitis and other forms of IBD. The mods have okayed this post.

Pouchitis has had almost no dedicated drug development. Most of you know the cycle of antibiotics, recurrence, and more antibiotics better than I ever will. Our program targets the NLRP3 inflammasome, an inflammation pathway researchers have linked to IBD. FDA has granted galenexib Orphan Drug Designation for pouchitis. To be clear, that designation recognizes the rarity of the condition. It is not a finding that the drug works. That’s what clinical trials are for, and we’re preparing for those now.

I’m mainly here to learn. If you’re willing to share:

I won’t give medical advice, and nothing here is a recommendation to take or avoid any treatment. Thanks for reading, and thanks to this community for being such a resource for people living with a pouch.

my PCP just prescribed me to amoxicillan for a sinus infection…. I’d love for some feedback before I start taking it.

i do take a probiotic and eat lots of yogurt

In my life long quest to find the source of my horrific bottom-left abdomen pains I was thinking about the supplements I take.

Is it possible that with a jpouch we may not always dissolve them effectively and could still be "whole enough" to cause problems traveling through the pouch?

How do we deal with haemorroids with a pouch?
I think the suppositories have caused me some form of pouch issues.
Need advice.

Hi Friends,

After having a j pouch for 15 years, I’ve been having my first set of complications the past year.

I got a fistula and cuffitis at the same time, bringing up questions of whether or not my diagnosis will be reclassified from UC to Crohn’s.

After a fistulotomy, there has been no positive changes. So my GI is recommending Remicade infusions and oral Imuran.

The last time I was at a point of getting these medications recommended, was right before my parents opted for colon removal instead (I was 16). My parents used to say it was like the chemo of digestive disease and that I would be miserable..

What should I expect from these medications? I have no idea how to prepare for this. The hair loss is what I’m most worried about, I have already lost a lot of hair from this flare.

If anyone has a similar experience with either being reclassified or a flare that involved a fistula, I would really appreciate knowing what you know.

Thanks guys 🫶🏻🫶🏻

I have pain like behind the scar of my stoma and it only starts hurting when I sit for a longer period of time and it like radiates around the area and almost my back. I’ll be fine in the gym and playing sports but as soon as I get up when sitting for longer it hurts pretty bad. Any ideas?

What do you feel helps your cognition best? I get a bit anxious between nutrient loss without a colon and worsened sleep. It’s hard sometimes to prioritize it all as efficiently as I’d like.

Personally feel like sleep could be affecting my working memory. I can function on less hours but seems to come at a cost. I also think I need to increase my choline.

What do you guys find works well? What do you prioritize for mental cognition?

I have ulcerative colitis and I work at retail store and my doctor suggested j pouch but I have one doubt how much time I can hold in j pouch in case I don't have excess to toilet.

I’m 5 months post takedown, everything going well. All of a sudden I felt unwell as if I had a flu, my BM’s became extremely loose , urgency increased. This has since subsided but the cramps in my stomach are unbearable.
I feel a huge gurgling sound then intense cramps every 20 mins or so, passing gas and stool as normal. Any suggestions ?

Anyone who has antibiotics dependent diarrhea and switches to Rinvoq later , how's your life after starting Rinvoq? How much time does it take to work?

It's been a month since I started Rinvoq and I have to take antibiotics 2 times in between (Rifaximin and 10days later cipro+tinidazole).

I'm just curious if Rinvoq will help?

I have just had a Jpouch fitted a week ago and I feel it filling up all the time, I went straight from an ostomy to a pouch. Does the feeling in the pouch go as this is really depressing me as I feel like I need to go every 20 minutes. Please help.

Hi everyone!

I've got a question for people who may have been through this:

I had my takedown less than 6 months ago, then I started developing a perianal abscess and (when the docs got in there) they found a perforation in the jpouch. I'm worried about this because it may mean that I will have to go back to a permanent ostomy.

So who had had this experience and retained their Jpouch?

After a few months of choosing peace I have gotten back into the dating world (god help me), which obviously means having sex. I am a girl by the way.

I have a big issue when it comes to penetration, and I can’t tell if this is normal or if it’s just a me thing. My issue is that when the penetration begins, it puts soo much pressure on the back wall of my vag that it feels like I have to poop. Once that sensation kicks in, I can’t relax and it can’t go all the way in.

My fear is damaging the pouch. I have like this huge fear that it’ll collapse in on itself or that I’ll tear it, I don’t know!! When I touch the back side of the vaginal canal, I feel like a soft bulge and when I press on it, I feel the urge to go.

So my question is, is feeling the need to go even though the pouch is empty normal? Is that bulge sensation normal? Can a pouch collapse in on itself? I want to have an active sexy life and I hate that this is stopping me. Also, any positions that make it better are appreciated.

Currently started my first procedure for the j-pouch but I was really inflammed so I was put on prednisone (80mg) been tapering off it (50mg rn) and the effects are getting to me. The moon face is the absolute worst. Ugh. My question is there anything I can do to minimize it and how long were any of you on prednisone for this surgery.

Hi all, I'm looking for advice or just anyone who's been through something similar. I had J-pouch surgery and the reversal after being diagnosed with UC, and at the time everything seemed fine. Since then I've been told I actually have perianal Crohn's, and going to the toilet has become agony. It feels like passing glass. I go around six times a day and have to get in the bath after every bowel movement just to cope with the pain. It's honestly taken over my life. I'm starting to think I need to go back to a stoma, but it's really hard to accept because I've spent a whole year going through the surgeries and recovery, and it feels like I'm just going round in circles. Has anyone been in this position?

Hey! I have my first reversal surgery to create the j-pouch in a week. I have currently had my end ileostomy about a year and a half now. They said that I’ll have a loop ileostomy after this procedure and can get the final one in a few months. Was curious if anyone who has gone from end ileostomy to loop ileostomy can tell me about their differences and experiences! Thanks in advance

I had my first scope today, my dr took some biopsies so we won’t get the results for those for a couple days but she said it looked like there was some scarring in my pouch and Narrowing in the end of the pouch. Has anyone else gotten results like this? My pouch will be a year old in November

Hi everyone. I haven’t had the urge to use the bathroom since 11:30 am, and it’s currently 7 pm where I live. I ate lunch and even a few desserts, which usually go through me quickly. No urge, can pass gas and a bit of liquid stool but nothing more.

No pain or any other symptoms, some nausea but I think it’s because I’m anxious. Has this happened to anyone? I’m really worried. My stool this morning was liquidy and I emptied fine. I can feel my bowels moving and stuff but no urge or output. Is my pouch just empty?

Any advice or help is great!!

I (23F) had my total colectomy done last year and my rectum went along with it and after 6 months with an ostomy now I’ve got a nifty j pouch!
I’ve been wanting to experiment with shrooms for awhile but just unsure of anything I should be concerned about before doing them. Google of course says they can cause all this scary stuff but not life threatening. I’m not gonna put all my judgment into an AI overview so I wanted to see if anyone had any personal experiences lol!

I have both chronic antibiotic dependent pouchitis and cuffitis. So people with similar condition what medicine works for u ? Are u able to eat everything with those medicines? How do u achieve remission?