Multiple Fistulae and possible pouch excision

Joey,

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.

Remzi may be one of the most experienced JPouch guys in the world.  He is also a wonderful guy.  I would absolutely recommend him.  I went through three surgeries with him.  Good luck.

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. 

Thank you!  I have not heard about stem cell therapy for fistula.  It seems to work for many other conditions so let’s hope!!

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.

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.

BTW- Dr.Amy Lightner created stem cell therapy for fistulas that’s who Shen sent us to… she has now left the CC where she was doing the stem cell therapy and is at Scripps on the West Coast.

He used to be at the clinic..I remember him.

@BethW posted:

BTW- Dr.Amy Lightner created stem cell therapy for fistulas that’s who Shen sent us to… she has now left the CC where she was doing the stem cell therapy and is at Scripps on the West Coast.

Dr Lightner is the doctor that Dr Church recommended to me before he left the clinic but like you said she left also. :-(

Yes, she tried to help. One thing she definitely did was always tell the truth! Others have not!!

Thank you for your help.  I'm new to South Florida so it's been a challenge to find doctors that I feel comfortable with.  So far, so good.