I had my j-pouch surgery in 2004 and have had recurring pouchitis ever since. My GI doctor does not really know how to treat me as I'm his only patient that has a pouch. I've had one scope in the last 6 years. I would think it should be more often especially with all the problems I have with pouchitis. Any thoughts or comments is much appreciated.

Chronic inflammation makes you a higher risk for dysplasia/cancer, so you should have a scope with biopsies periodically. But, understand that dysplasia is very uncommon and cancer even more rare. If you are on maintenance therapy (continuous) for the pouchitis and it stays in remission, you probably can forgo the scopes a little longer. Say, every three years or so, or even longer if your prior biopsies were consistently negative. This is particularly true if you retain a rectal cuff mucosa, since that would be the most likely source of dysplasia or cancer.

There is no one-size-fits-all answer here and it should be on a case by case basis. If your GI does not know what to do, you may want to ask him to inquire at a larger facility for advice, or you can get a second opinion from another GI. Another option is to ask your surgeon for a recommended surveillance schedule.

http://www.ncbi.nlm.nih.gov/pubmed/19180580

Jan

Thank you Jan. The doctor has called another doctor in Missouri before. At least my GI had enough sense to send me away out of town/state when I was so sick. AFter 3 months in the hospital, 12 blood transfusions, and 3 surgeries later been dealing with refractory (sp?) pouchitis. I just worry that since I came so close to dying that my doctor doesnt know what to do with me. I've thought about checking out Mayo Clinic or Cleveland clinic, but having insurance issues.

My GI doctor says he doesnt want to scope when I'm having a flareup or when I am in a remission state. So that's why I was concerned on how often. I had seen on a couple of sites where some had scopes every year, every 2 & every 3. Sounds like I'm probably due one.

Thanks again for your reply. Have a great day!