Where/who are the top doctors for J-Pouchers? I’m back in the hospital in Houston, TX after a 22 day stay here, one full day out, and a return to the ER/readmittance to hospital (5 days back in so far). I’m not so convinced these are the greatest/most experienced/knowledgeable doctors since they keep referring to my condition as “rare”, “unusual”, “abnormal”. I used to be so confident in them but am now questioning it all. I know there are physicians that actually specialize in our systems and I want to know where they are.

[To sum up the past month: I had a partial blockage due to an adhesion that they had to go in and remove (through my six inch abdominal scar); I had a terrible case of ileus that quite frankly never truly ended since I still have purely liquid output 3 weeks after the big surgery; they did a CT scan last week and found what appeared to be a stricture in my small intestine right above my J-pouch so they put me under and did a scope; the scope actually found that the narrowing was so slight, it was a non-issue and not causing blockage but they found small ulcers right around it; they sent biopsies of the ulcers off, sent off a stool pathogen, and did a blood panel to get to the bottom (blood work fine but awaiting results of biopsies and stool analysis); been tolerating liquids and they moved me to soft solids yesterday but that has been causing rumbling, bloating and burping (acting like a partial blockage); they put me on a stool thickener - Cholestyramine - a few days ago but it’s clearly not working because my output is still pure liquid. Ready to just know what the problem is and find out how to address it. I’m ready to get out of this place and be with my wife and young children.]

Any feedback on doctors and hospitals (especially any in Houston) would be GREATLY appreciated!

Original Post

Hi - sorry you are going through so much here.  I was in the hospital for 8 days and I can’t imagine 20+. You are tough.  As for JPouch doctors - the only one I know is Dr. Remzi at NYU - he is great.  I realize that is not an optimal location for you.  I bet your doctors are good, but this disease is tricky.   I hope you get better very soon.   Doug 

Dr Remzi did my J-Pouch redo.   April 2019 removed old J-pouch, fashioned new J-pouch and loop ileostomy.  Plus repaired anal/vaginal fistula.  November 2019 took down loop ileostomy.  My new j-pouch is great.  No problems with it.  Dr.Remzi is the best!  I flew in from Detroit for my pre-surgical testing on the same day.  Got hotel room for that night.  Had surgery following day.  Was in hospital 5 days.  On fifth day, flew home to Detroit.  It's a little pricey and  little inconvenient but well worth it!  Cheapest hotel I could find was $300/night.

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