@jpouchmike posted:

Thanks for the info. I have had issues with strictures and not emptying. Went to see Dr Bo Shen and Dr Remzi for a consult and it sounds like I have something called mega pouch.

It does sound like he will create a temp loop ileostomy first.

Jeane, who is your surgeon in NY?

jpouchmike, did you end up being diagnosed with mega pouch? I am diagnosed with it for six years now. It is pretty rare, so when I happened to see your old post I had to reply!

@Kushami posted:

jpouchmike, did you end up being diagnosed with mega pouch? I am diagnosed with it for six years now. It is pretty rare, so when I happened to see your old post I had to reply!

What is mega pouch???

@jpouchmike posted:

Hi everyone,

It looks like I'm going in for pouch revision surgery soon with Dr Remzi in Cleveland. Can anyone give me an idea of their overall experience with him as well as the overall hospitalization (post op care from his surgical team, nurses, ostomy care, etc).

Thanks in advance

Are you better now???

My son has a J pouch done in May 2020.  We are at 6 months and he still going 20 times a day to the bathroom.  He has cramps all the time.  He is currently taken Bentyl and also Cimbalta for the pain.  The surgean still sees him once a month but he has not offered any solution or medication besides the Bentyl.   I am looking for a Doctor that can help.  We live in Florida but will travel. I heard good things about the Cleveland clinic.  Any suggestions...

I heard Dr. Ramsi is no longer at Cleveland clinic. He is currently at NYU.

I am trying to schedule Jpouch surgery for my son with him. Does anyone recommend him or had jpouch surgery with him?

@Anais posted:

My son has a J pouch done in May 2020.  We are at 6 months and he still going 20 times a day to the bathroom.  He has cramps all the time.  He is currently taken Bentyl and also Cimbalta for the pain.  The surgean still sees him once a month but he has not offered any solution or medication besides the Bentyl.   I am looking for a Doctor that can help.  We live in Florida but will travel. I heard good things about the Cleveland clinic.  Any suggestions...

@Anais I’m sorry he’s still struggling. It might be a good idea to find a knowledgeable gastroenterologist instead of a surgeon. His surgeon might even be able to recommend one a reasonable distance from you who knows how to deal with J-pouches. Assuming that the pouch was constructed properly there are a few things that can delay pouch adjustment (e.g. cuffitis or an early case of pouchitis), and a few non-prescription things that could possibly help (e.g. psyllium fiber, probiotics). I started taking Metamucil (psyllium) as soon as I got home from the hospital. Good luck!

@Anais posted:

My son has a J pouch done in May 2020.  We are at 6 months and he still going 20 times a day to the bathroom.  He has cramps all the time.  He is currently taken Bentyl and also Cimbalta for the pain.  The surgean still sees him once a month but he has not offered any solution or medication besides the Bentyl.   I am looking for a Doctor that can help.  We live in Florida but will travel. I heard good things about the Cleveland clinic.  Any suggestions...

For colon surgery and gastro- I would recommend Baycare (St. Joseph Hospital)

Sorry you guys are going through this and hope things get better. I got all my stuff done at Baycare: diagnosis of UC and Surgeries too! I had been with them from age 17- 23 and my dad is currently with them. They are in Florida too, in TAMPA

Hi RebaF - I know Doctor Remzi well.  He did my first two surgeries- of my JPouch.  I am hoping to do my third soon.  He is a great guy.  From the research I did, he seems to be one of the best in the world.  

Thank you! Best wishes to you

@RebaF - Dr. Remzi is amazing.  He did my one step Jpouch laproscopically in 2009 in Cleveland, along with Dr. Meagan Costedio.  I have had almost zero issues in 11 years.  If you can get to him, do it.  He's at NYU now, what a loss for Cleveland Clinic.  Dr. Costedio is now at University Hospitals in Cleveland, she is amazing as well. 

Thank you

Remzi has been at NYU Langone MEd Center for a couple of year now. He not only has an excellent reputation, his work is highly published in the medical science literature.