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I'm one of the lucky ones who underwent the 3 stage surgery for the jpouch. It's been 2 years after take down and my life has been miserable. I have the typical ankle, leg, knees and pain in my right flank on my back also chronic pouchitis. I go to the bathroom 15 to 20 times a day. I've tried all diets, SCD, and low fod map and nothing works. My GI has run out of options for me and I'm considering removal of the pouch and going to a permanent bag. My question is will this remove the extra intestinal manifestations also?

stelara, prednisone for over 4 years, xifaxan, lomotil,  immodium

 

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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.

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.

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