Skip to main content

I posted a week or so ago and it was an emotional not logical post. I would so appreciate any thoughts or experiences that you would share with me.  In 4 weeks I and my 30 year old pouch have been in the hospital 3 times, diagnosed with 2 anal fistulae in my right buttock muscle, pouchitis, and multiple strictures which I knew about.  After days of IV Zosyn, I was released today with an appointment to see my GI and CR doc next week.  I had a heart-to-heart with my new CR doc in S. Florida ( I moved here from Central NY in April). She wants to set up a consult with Dr. Remzi in NYC to discuss my options.  Honestly, at this point I just want the pouch gone and she said that’s what Dr. Remzi would likely advise.  I’ve read about Dr. Remzi and he seems very inpressive.  I also saw Dr. Toyooki Sonoda in 2012 who was at Weill Cornell but now is at NY Langone with Remzi. I also had a new patient appointment in April  with Dr. Steven Wexner at Cleveland Clinic in Weston, FL.  I know people may be reluctant to speak about specific docs, but anything you have to share on this topic would be most appreciated.  Thank you very much.

Last edited by Joey A
Original Post

Replies sorted oldest to newest


this is huge

remzi is the go to guy in these situations, so I would definitely want his opinion on going forward.

I met with wexner during my surgeon search for my two step. Although I spoken to people who have been his patient and were happy with him, I did not like him at all and did not consider using him.

another name at CC Florida is Eric Weiss.

I've been seeing Dr. Shen more than my regular GI at this point. I too have branching fistulae along with chronic pouchitis. I'm on Humira and Tinidazole which have been helping with the inflammation. I'm able to manage the fistula fairly well, soaking in a sitz bath for one hour a few times per week. Dr. Shen has spoken to me multiple times about stem cell therapy to help repair a fistula. He is spearheading the research and expects it to become available in 1-2 years. Have you heard about this? Best of luck my friend. 

I too have a 30 year old pouch and I do have a stricture that I go in and have it stretched about every two years.  Right now I have pouchitis but have not had it for a few years.  I got my j pouch at the Cleveland Clinic in Cleveland.  The CC has done the most j pouch surgeries of any hospital.  I prefer to go there because of the experience.  Although my doctor recently left there Dr Church and he was going to return to New Zealand but a friend of his convinced him to go to New York Presbyterian in NYC. So I have to pick a new doctor it was just my regular doctor who gave me the cipro for pouchitis.  I think you said you are in Florida so I would check out the colorectal surgeons there at CC. Dr Remzi has done the most j pouch surgeries of any doctors however.  The problem is being able to get a appt within a reasonable time. I have had my ups and down with my j pouch but much rather keep it than having it reversed.  Do you feel you are getting the correct treatment now?  That makes a big difference also.

Last edited by Pilot Debby

Dr.Remzi is a marketing machine, be careful! He created a leak when building a fresh j pouch and said the leak would heal naturally. 30% better, 30% better every time there was a visit over 14 months diverted. Everyone’s best friend. Finally, went to Shen to fix the leak with needle knife. Seemed to work but after closure,  nothing but trouble. Going to loose the pouch after all the pain and suffering and considering a k pouch with David Dietz at UH in Cleveland.

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
Link copied to your clipboard.