First time poster here. I had crohn's, but always limited to my colon. Had colon removed in 2004, then jpouch creation. Chronic pouchitis forced me to find other options. An ostomy bag didn't work for me due to skin irritations and leaks.
I had a BCIR created in 2012, which is like a Koch pouch. Life was great! Then I started having what I thought was pouchitis again. Antibiotics seemed to work, but symptoms came back quickly after stopping them.
I had a flex-scope done on my pouch recently and my gastro said it's Crohn's. I'm really bummed about it. Even though biopsies suggest pouchitis, he insists it's crohn's. My valve leaks constantly. He showed me the photos from the scope, and there's an ulcer at the valve entrance, which is causing leakage. I have to go in for my 9th surgery next week, to see if they can repair it.
I just resigned from a high-salary long time job due to these issues and depression/anxiety.
I know my situation is likely to be unique, but I was wondering if anyone has experienced anything similar.
Thanks!
I had a BCIR created in 2012, which is like a Koch pouch. Life was great! Then I started having what I thought was pouchitis again. Antibiotics seemed to work, but symptoms came back quickly after stopping them.
I had a flex-scope done on my pouch recently and my gastro said it's Crohn's. I'm really bummed about it. Even though biopsies suggest pouchitis, he insists it's crohn's. My valve leaks constantly. He showed me the photos from the scope, and there's an ulcer at the valve entrance, which is causing leakage. I have to go in for my 9th surgery next week, to see if they can repair it.
I just resigned from a high-salary long time job due to these issues and depression/anxiety.
I know my situation is likely to be unique, but I was wondering if anyone has experienced anything similar.
Thanks!
