I could be incorrect but I think he's using sort of a catchall term. Sort of like us having a colonoscopy even though we have no colon. I'm assuming what you have is IPS - irritable pouch syndrome. What are his recommendations?

kathy

He said to see another doctor, stop taking antibiotics and only take VSL#3 DS twice daily.

I agree with you that it is probably irritable pouch syndrome. My symptoms do not match up with IBS symptoms. I have no gas, bloating or constipation. Just intense abdominal pain in the pelvic saddle, internal rectal sometimes burning pain, loose bowels, muscle fatigue, joint pain, chills and an occasional low-grade fever. I am on my third round of antibiotics. So far I have tried Cipro alone, Cipro with Flagyl, and Cipro with Xifaxin. The Xifaxin helps the most. I also take diazepam for rectal muscle spasms.

I've never had pouchitis but your symtoms certainly sound like it could be pouchitis. If you stop the antibiotics and the symptoms increase then pouchitis should be looked at again.

The sad thing is the directive to see yet another doctor especially given the luck you have with them.

kathy

I have chronic pouchitis and I have all of your symptoms. Just about all the time. The only thing that has really helped me was completly cutting out gluten and processed foods. And when I say no gluten, I mean no gluten and cross contamination and Im instantly sick. I not great regardless. But with no gluten, I can deal

Sonja,
Did you have gluten problems before the surgery? I did but the doctors told me I could now eat all the bread I wanted.

hi i think regardless of exactly what it is you need too see a gi at this point..this is beyond the surgeon...where do you live? have you seen many drs already if so is it possible to consider seeing dr. shen in cleveland..he is one of if not the best..he treats 2000 patients with all kinds of post pouch issues..if it is pouchitis(sounds like it) you may be one of the patients dr. shen calls antibiotic resistent pouchitis and than you need a different approach..forget the vsl#3 solution that is no solution..

rebe

Unfortunately, the distance from my house to Dr. Bo Shen's office is 2,450.2 miles. Just a little bit of a commute. Lol!
I am back to keeping a gi journal that keeps track of pain, food, sleep, meds, exercise, bms (quantity and texture) for the new doc. It is an app called gi buddy. GI appt. in 6 weeks.
Meanwhile back to lots of oxycodone.

quote:

Did you have gluten problems before the surgery? I did but the doctors told me I could now eat all the bread I wanted

This puzzles me, since removing your colon would not affect gluten intolerance in any way. That is an enzyme deficiency and affects the small bowel, not the colon. However, if celiac disease was ruled out, then it probably was not really a gluten intolerance, but more of just a sensitivity that was worse with the IBD flare. But, yeah, you can still have IBS type symptoms without the colon (IPS).

Jan

Jan, You are right the doctors called it gluten intolerance but really I am wheat sensitive. I still am but at first I ate bread as often as possible because it tasted so great and the doctor said I could. I am back to eating wheat free products.

I was having a lot of problems that I thought were pouchitis. My GI scoped me and I ended up being diagnosed with Irritable Pouch syndrome. He put me on 50 mg. of Elavil everyday and my symptoms were relieved.