Have you tried everything you can to help your pouchitis? There are many things to take to jelp your infection. Don't give up. Im sure one antibiotic will help you. It really sucks to hear a doctor giving up on a patient. My infection was so bad one time I would take 2 tablets of cipro in the morning on an empty stomach and two tablets in the evening before dinner. Finally after like many days I felt it clearing up. Please try to find something. Have faith. I don't eat any dairy products while I have pouchitis. For some reason it makes it worse for me. Good luck hope you find something to cure you up.

Hi Sam,

I have been "pulsing" Cipro and Flagyl for 2 1/2 years now, and it seems to be doing a pretty good job of keeping my pouchitis at a simering level. I have tried some other antibiotics, but had poor results. My current GI just keeps prescribing the drugs; she has never scoped my pouch (although I was scoped in 2010 by one of her associates and that is how I got the diagnosis of chronic pouchitis). She focuses solely on my severe upper GI issues because as she sees it, there is an "easy fix" for my pouch problems. So it looks like I may need two GIs; one for my pouch and one for everything else. My surgeon quit practicing medicine with my takedown surgery, so it is not an option to simply see him.

Sallie,

I don't know about a GI, I have never gone to one after my takedown surgery. I just see my surgeon for any concerns. But what about consulting with another surgeon in the area? I had my surgery with Dr. Joseph Frankhouse at Good Samaritan Hosp in Portland. If he can't/won't see you for this, perhaps he can recommend another GI. His number is 503-413-5525. He's truly fantastic!

All the best,
Becky

Hi Becky,

I have thought of consulting another surgeon, in fact my colectomy was done in Portland by Dr. Mark Whiteford and I have thought of going to see him. I just thought I would keep the hope alive for a little bit longer that there might, in fact, be one fantastic GI that could treat my entire system instead of subdividing it into parts. I already have seven different doctors that I see on a routine basis for different organs, and trying to communicate with all of them as well as make decisions when their opinions differ can be a bit of a nightmare. However, I like your idea of contacting a C/R surgeon in Portland to see who they would recommend. I also have an appointment with my stomach surgeon in a few days; I will certainly ask her for recommendations as well!

Dr. Frankhouse was my surgeon for three surgeries. He recommended me to Dr. Shumaker. We don't really have j-pouch experts in Portland. The closest I could find was up in Seattle.

Hi, I go to Dr. Patrick Lee-Surgeon at the Colon and Rectal Clinic at Providence. He is great!!

I may be having the same problem you are, i.e. getting passed from doctor to doctor in Portland because no one can figure out what to do. I have tried to find out as much as I can. Here is a little information.

Dr. Mark Whiteford is the choice of many nurses and doctors for themselves and family members. He removed the colon of a friend (an oncology nurse) in July and she ran in a half-marathon in October.

I also found Dr. Judy Collins' abstracts. She has published 20 papers in a ten year period. Most were on IBD issues such as bone density in nursing mothers with IBD.

Here is a link to the abstract of Dr. Collins pouchitis paper. http://link.springer.com/artic...0-008-9194-7?LI=true

The only other doctor who seemed at all interesting for pouchitis in Portland was Dr. David Grunkemeier. He published a couple of papers while doing research at the Cleveland Clinic and wrote a chapter in the book "Clinical Dilemmas in Inflammatory Bowel Disease" edited by Peter Irving, MD, MRCP, David Rampton, DPhil, FRCP, Fergus Shanahan. The one paper I found of his on pouchitis was on doctors creating morphine dependent patients instead of properly treating the pouchitis. He seems very passionate.

Please let me know what you find out. I'll try and keep you updated too.

I really like Dr. Monina Pascua. She listens well, is agressive and doesn't give up. She is in Oregon City. She was recommended to me by my awesome surgeon, Dr. Patrick Lee.

Good luck and post your results - so many are having these same issues.