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Happy Spring to all.  I’ve had my J-Pouch since  2000 with never any issues (very lucky) and have never been back to see a GI doc.  Had a recent scare in the local ER with an intestinal blockage at the stoma site but they wanted to remove my gallbladder (it wasn’t the gallbladder but a blockage as I knew and could feel.)

Dr. Bauer and Gorfine were my surgeons way bask then.  I’d like to be proactive and have a new GI doc and GI surgeon going forward as I get older so I’m not in a predicament some day where I need a doctor and have to take the one available.  Please send me suggestions.  I’d like to set up a consultation sooner than later.
Thanks.

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Lisa I am also a veteran patient of Dr. Bauer and Gorfine. My original pouch was done in 1992 by Gelernt and Gorfine. After Gelernt died in 1996, I saw Dr. Gorfine for J pouch revision surgeries in 1998 and 2000 and Dr. Bauer also saw me in the follow ups.

To answer your question, the big gun J pouch surgeon in CT is Dr. Vikram Reddy at Yale. My GI is Dr. Myron Brand of Guilford, CT and although I love him and think he is a great doctor and person, he is around 70 and one wonders when he will retire. That being said he seems like a workaholic and maybe he will work until he drops, like me. Who knows when that will be- Dr. Gelernt died of a massive heart attack at age 60. But Dr. Brand is very experienced with pouches and I have had a good run with him.

What I have learned is that doctors can die on you, move on you, and retire on you, and there usually isn't a darn thing you can do about any of the 3.

Last edited by CTBarrister

Thanks!  I want to have options as I get older and my pouch gets older. I’ll look into Dr. Reddy.  I’m in lower Fairfield County so NYC is just as close as Yale.  Many docs now have Westchester offices as well.  I’d like to find a GI doctor, too. Not crazy about the local ones. Little or no experience with pouches.  Thanks again.

Dr.  Reddy is my surgeon.  He did my three step and continues to monitor me since then.  He is excellent, both in his surgical technique and his bedside manner.  I just referred a friend’s SO to him and he was very pleased with his interactions so far and will have his initial surgery on Monday.  He was the only consult I had before surgery because once I met him I didn’t feel the need to look any further.

I'm a fan of Drs Kiran and Shen at Columbia. Dr Kiran is my surgeon. Dr. Shen is a gastroenterologist who specializes in pouch-related issues. They work closely together. Their Office support - nurse a practitioners, front office, dietician, etc. has been excellent.  Inpatient experience last year (x2) at Columbia Presbyterian was also great.

CTB23 and AMB, Thank you very much.  My goal this spring is to pick a new GI doc and also have a GI surgeon to call on should I ever need one. Since never needing a doctor for my pouch since my surgery 22 years ago, I’ve taken it for granted.  The blockage woke me up when the ER doc (who really didn’t even know what a Jpouch was) had me scheduled for gall bladder surgery.  Thankfully, I knew what it was and wasn’t having surgery.  I would have been transferred to Mt. Sinai which I had done after major disc surgery about next five years ago and my GI system didn’t start back up and I was being told I had a blockage.  Most general doctors and surgeons don’t seem to have a clue when it comes to pouches and the issues with the GI system due to a pouch. Thanks again.  

Dear Lisa,

When I came to CT in 2012, CTBarrister got me hooked up with his GI and I was very grateful.  That GI has moved on, but his replacement is excellent—really knows pouches and bends over backwards to try to find solutions to tricky problems.  His name is Badr Al Bawardy and he is at Yale New Haven. If they let us put in links I’ll put it below:

https://www.yalemedicine.org/s...lists/badr_albawardy

Dr. Reddy is also my surgeon and also fantastic.  I think my care in CT has been as good if not better than my care in Chicago at world-famous hospitals.

Ray C

My GI is Dr. Legnani   https://gastroenterologistnewy.../peter-e-legnani-md/ and surgeon is Dr. Chessin https://www.mountsinai.org/profiles/david-b-chessin though these are my current docs.  My original diagnosis and surgery was prior to 2000 and Dr Present was my GI then and Dr Milsom did my surgeries.  The former retired and passed away, the latter moved out of state, but I think may be back.

Hi again @KennyJG44

Dr Remzi wasn't prepared for my initial consult.  He was not welcoming of questions.   He proposed an open abdominal surgery to construct my j-pouch in 2-3 stages.  

I did research and conferred with one of his former surgical colleagues from the Cleveland Clinic who I know through professional relationships and learned that most  surgeons who specialize in the procedure now do it laparoscopically.  

Dr. Remzi's surgical approach wasn't right for me,  though I'm sure there's a rationale for it, I just didn't want to face that trauma and scarring.  I also felt he should have explained that while he wouldn't offer it, a minimally invasive alternative was available.

I was referred to Dr. Kiran at Columbia. Another Cleveland alum, who impressed me as both skilled and compassionate. He did the procedure in two stages, laparoscopically.  I had excellent in-patient care at Columbia-Presbyterian, and I remain with the team at Columbia for follow-up care.

Hi Kenny,

I have to say I’ve had so-so experiences at Columbia. A trip to the ED was a nightmare but I think that’s just emergency care in NYC in general. I’ve had a couple of procedures with Shen but have struggled to get back in touch to see what next steps are. @AMB helped me out (thanks!). Shen is very talented and nice but I definitely feel like just another complicated pouch, not a patient. I finally reached someone on his staff and they gave me a canned answer about repeat sinusotomy. I think they just copied and pasted the response. They’re happy to schedule me for one with Shen but he has no idea who I am nor has he reviewed my case to determine if it will actually help this time. I asked, “is this what he recommends for me specifically?” No response just dates he can do it. I think he’ll just keep doing them as long as I call to schedule! This is not to say you shouldn’t see Shen. He’s very skilled at interventional GI and he’s a nice person. Just don’t expect any individualized care, a plan or good communication with him or his staff.  

Hi @Pouch2021 -

I appreciate the honesty!  A lot of the times it seems like there is a trade-off between highly talented physicians and compassion, bedside manor, communication, etc.  Not always, of course.  I am nervous to see anyone, to be honest, because I don't want to hear bad news.  But I also don't to be in pain forever.  I would agree with you, Shen probably is a pouch machine - just goes through thousands a year.  That doesn't make me feel great; but, if he is truly "the best" - then it might be worth the lack of individualization.

Time will tell - I can't get in there anyway.  I nailed down an appointment elsewhere for Monday AM, so that is a start.

Yes it seems like you just need to see someone and you have some good options. I wish you the best navigating this very complicated landscape.

Regarding ways to facilitate emptying, an enema doesn’t even need to be inserted fully (beyond the anastomotic site and region of potential stricture) to work. You can just insert it a cm or two into anal canal and it will generally just flow into the pouch. And a gentle laxative like Miralax is unlikely to do any harm unless you have a complete blockage. And even then you’d just vomit it up. I’d make myself as liquid as possible to help empty without straining. BTW, if you end up seeing Shen for pouchoscopy he will have you do a bowel prep with an 8oz bottle of Miralax the night before!

Good luck tomorrow. Let us know how it goes.

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