Skip to main content

Hi all, I've been a member on here since 2022 but haven't posted anything. I do tend to get scared too and I gotta work on that. To get to the point though, I have a J-Pouch that I've had since 2020. Got my colon removed in April 2020 and have had my J-Pouch since September 2020. Over the years I've been struggling with a lot of things that all lead back to my J-Pouch. I have Chronic Pouchitis, Constant abdominal pain, Weakness/Fatigue, and Fecal Incontinence, and overall I feel like I'm sicker than I was when I had my colon. With the abdominal pain and frequent urges to use the bathroom (I go 10+ times a day), along with bloating that's been coming and going... I can't figure out what to do to help myself or what to say to my doctor about changing the dose, etc of a medication I take for the pain/cramping/diarrhea. I've been taking Dicyclomine 20MG 3 times a day as needed for years but lately, I've been needing to take 4 as needed, due to the abdominal pain/cramping. I did a little research and I know Hyoscyamine works the same as Dicylomine does for the same purposes. Has anyone taken either of these medications before your J-Pouch surgeries or after? I know I shouldn't ask for any painkillers because of how addictive they can be, so I'm just hoping for a better alternative or any advice on what to do from here. I take Imodium once a day, I take a probiotic, and I watch what I eat or what foods seem to trigger my symptoms. I'm getting to a point where It feels as if I'll never be able to live a somewhat normal life again.

If anyone reading this has any suggestions or advice for my dilemma, I'd appreciate it. Hope you all have a great rest of your week.

Original Post

Replies sorted oldest to newest

Hi there,

Im so sorry you’re having so many problems. Do you like your Dr? Important to have a good GI doc that you like and can rely on.

I don’t have a lot of advice. I’m having some issues of my own. I can tell you that I take VSL #3 ( probiotic) twice a day. Expensive but has made a big difference for me. I also eat a pack of Metamucil wafers everyday. Sometimes I drink the powder. That has helped me with firming up my stool.

I read somewhere that an empty bowel will cause gas. Not sure how true that is, but I do find that eating small amounts more often keeps me more comfortable.

All the best to you!


oh how I do relate to your situation! I’ve had my pouch for three years and my whole life revolves around BMs.
I take three immodium/day, breakfast, dinner and bedtime. I take levsin when I have IPS. I watch what I eat, how much I eat and when I eat (rarely after 6pm). I stick to two meals per day, and my food no go list is extensive. I need to monitor medications (no extended release meds for me).
While I have not had pouchitis, my GI and I monitor for cuffitis, SIBO and IPS.

its crucial that you align yourself with a GI practice that has a large cohort of pouchers.

and yes, while I have many good days, I accept I will never have my normal life back and enjoy food like i used to.

i am however very very grateful that colo/rectal cancer will not be a concern again in my life.

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
Link copied to your clipboard.