Pouchitis with fistula

I was happily jpouching until now. I have almost no pain and I sleep through the night. Life is good. However, last year around October, I started seeing an unnatural opening in my lady bits which turns out to be a fistula. I got the MRI and diagnosis this week. My jpouch also looks pretty bad, it has inflammation along the seams. Cipro and Flagyl have been working and I even forgot about my fistula because it was like as if it wasn't there anymore. It came back when I finished my courses of antibiotics. I'm going to consult with a surgeon soon. I had my J-pouch redone by Dr Remzi in 2021.

Hi quincy yes I'm on azathioprine and currently on the Cipro & Flagyl.

Sorry that this complication has hit you, Andreita. You surely deserve good health after all you've gone through before this latest. Was your DX still UC when you had the 2021 pouch re-do? I ask because there have been a few cases mentioned here on the forum where the initial UC turned out to be Crohn's later on. Hoping you can get rid of that sneaky fistula permanently ASAP. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Oldhat, pathology on colon showed colitis. Diagnosis was never changed. The inflammation in the seam doesn't bother me but the fistula does. I'd love to stay on Cipro & Flagyl because no biologic has ever worked. Remicade lost its efficiency

I take Rinvoq, and it works pretty well for my j-pouch issues. It's not the same mechanism as the original biologicals; it's a JAB mechanism.

They eventually changed my diagnosis to CD from UC, and even after my surgery, the pathology report was UC. The change to CD has made it easier to get medications approved by my insurance company.

--Keith

Let us know when you'll be having your surgery...I can understand getting rid of it, and hopefully you'll have calm after healing.
q

I hope this new surgery helps and you finally get some relief. Please keep us updated as to how it goes next week.

Hi yea I used to see Dr Remzi for my jpouch and I know he's the best. Sadly my quality of life with a jpouch isn't so great so I decided to go with a local colorectal surgeon who will get me an end ileostomy. I never wanted to go back but I felt best with a bag.

Wishing you luck and much better health!!!

Best of luck. Please update when you can.

Hi all, surgery went well. I have my little forever stoma now. I'm still in the hospital. I hope to go home soon.

I’m glad that everything went well. Did you get the pathology reports back?

Happy New Year, Andreita! Hoping you'll feel fully recovered from surgery ASAP-- you are a brave trooper! How is your appetite? / Old Hat