Hi - I am really sorry for your misery.  The chronic pouchitis could be causing inflammation and thus affecting other areas of the body.  I know when I am in a flare up of my Crohn’s- my knees and back hurt.  Maybe if the pouch is gone things revert to normal.  Did you have leg pain before the construction/surgeries to create the pouch?  Are you on medicines to combat the pouchitis.  Where did you have your surgeries?  Have you gone back to the surgeon?

I did have leg and back pain before I would have to go to the bathroom before I was diagnosed back in 2014.. The first GI Dr. I had thought I was nuts. But I think after the first surgery I didn't feel it. I just can't remember. I just started xifaxan for another bout of pouchitis. The flagyl worked the first time but as time went by it stopped working and gave me numbess on my left side from head to toe. Not good for a guitar player. I had the surgery done at University of Miami and the surgeon, in my view, did a great job. I meet with him later this month. I have my primary and GI Dr telling me the end ileo will help with quality of life. That's all I want back.

If you can’t fix the JPouch, then a ileostomy it a great option for many folks.  Some people try VSL probiotics for pouchits.

I alternate VSL #3 with Florastor.

Rough this disease.  I am sure you have been through the thought process, but have you checked with a few of the top JPouch clinics like Mayo and Cleveland- could your pouchitis possibly be structural related?  Before you go for removing it, if possible, try to get evaluated by a top JPouch clinic.

I’ve been through this for almost 8 yrs now and have had to go back into my bag 5x in those 8 yrs for fistula repair and I’ll do anything to stay out of a permanent ostomy! I’m reminded of how nice it is with a j-pouch everytime I go back into a bag! I’d encourage you to try and check out the other clinics or do a temporary bag to see if it actually helps your problems BEFORE actually removing the J-pouch! I know it’s always been an option with my surgeon to let me try a “temporary” ileostomy before we would ever remove the j-pouch entirely. Bypassing the j-pouch first to check your symptoms is an easier route than fully removing permanently the pouch. Just an idea, because there’s no going back once you’ve removed the pouch! Well unless you’re one of the lucky ones who actually has some leftover intestinal tissue left! Good luck in whatever you decide.