I've been wondering, after 4 years with my K-pouch, how one would know if one had pouchitis. Of course, a scoping would be definitive, but I live a long way from Cleveland where Dr. Fazio made my pouch, and I don't want a local doctor to use a scope through the valve unless I were in an emergency situation.

When I had acute renal failure and went to Cleveland, Dr. Fazio found what I guess was pouchitis (I could see little bloody ulcers on the lining but I don't remember his using the word "pouchitis"). He said my problem was medical rather than surgical and so sent me over to the gastro doctors who kept me in their hospital for a week with tests and then prednisone.

I don't have acute symptoms now, just a bit of cramping and the need to intubate more than usual.

I'm not very good at figuring out when I am sick. I had pouchitis with my j-pouch EVERY time I was scoped for 8 years, but felt sick only the final 2 or 3 years. For 5 years I'd just say, "Funny, I don't feel sick." When during a regular check up I was told I needed an anal dilation, I hadn't noticed any problem.

If I knew I had pouchitis, I could call my GI and take something (probably cipro plus flagyl as I did before the k-pouch)so I wouldn't get that renal failure again. I'm afraid though that he'd want to do a scope and since I think I'm his only k-pouch patient, I doubt he's had any practice going through the valve.

Any ideas?

Here is what I would suggest. If your GI has no experience with a K-pouch, how about asking him if you could guide the scope through the valve and show him how it is done? Just tell him to use a pediatric scope. It should be the same as intubating.

Once in, he can take over and explore and biopsy as needed.

Jan

Good idea.....thank you Jan.

Jan is right. You can let him scope you - tell him you will put the scope in and once it's in the valve let him take over.

I am an old K-poucher and I let my GI doc do that.

Some docs don't scope - just take Cipro for a few weeks and see where it goes.

Good luck.