I am a 48 year old man suffering from indeterminate IBD for 21 years. Medicines other than prednisone don’t work for me and I must consider surgery now. Can someone help please and let me know if they know some good J Pouch surgeons in the NY area. Thanks
Dr Steve Gorfine of Manhattan Surgical Associates is as experienced a J Pouch surgeon as there is in NYC and assisted on my original J Pouch surgery:
He was mentored by the late great Irwin Gelernt- probably the best J Pouch surgeon in the USA in the late 1980s and early 1990s. Gorfine did hundreds of J Pouch surgeries with him before he did mine in 1992.
I have two vivid and funny memories about him. One is that when my J Pouch developed a septum that required Pouch revision surgery in 2000, he compared J pouches to Jaguars (the British car, not the animal), saying that like Jaguars, J Pouches were “great but high maintenance and sometimes need to come into the shop for repairs.” The other thing is right before the Pouch revision surgery in 2000, he came to see me and he was dressed in surgical garb wearing these clogs- which looked like a woman’s pair of clogs. However he is a great surgeon and not going to hold his choice of foot wear against him. I did think it looked funny seeing a surgeon at Mount Sinai dressed in clogs.
Thanks CTBarrister - I really appreciate it. My symptoms have been horrible for 21 years. I have been on high doses of steroids for 19 years. I am overdue. Thanks for the recommendation. I am grateful. Doug
You will be in great hands with anyone from that group. Gorfine is their senior surgeon and the most experienced one. I am old enough to remember him when he was a younger surgeon learning his craft from the best J Pouch surgeon in the country. They all work out of Mount Sinai Hospital and you will receive great care there. It’s a great facility.
Dr. Kiran and Dr. Geisler are J pouch surgeons that trained at Cleveland clinic, now working at Columbia in NYC. Dr. Kiran also does K pouch surgeries for certain patients.
I believe Dr Remzi from the Cleveland Clinic is still at NYU. From my understanding, he is the best there is.
we go to Weill Cornell. Dr. Shukla is our primary surgeon. He is truly a God-send. A very kind, calm and wonderful man. He has helped my son so much. We have an entire team over there, and everyone has been wonderful.
If you're not absolutely certain that you need surgery, you might want to consult with Dr. Thomas Ullman first. I believe he's at Montefiore now. I saw him to get a referral for a surgeon and he said I didn't need surgery yet and helped me try a few other options.
Around the same time, I went for surgical consults with a few surgeons, including Dr. Kiran. Dr. Kiran has a great reputation and is obviously a top surgeon.
Every surgeon I saw was ready to operate; going to Dr. Ullman was a good move for me since I really wanted to put it off as long as possible and he told me that I could wait and try Remicade and then Entyvio. (I had a cancer scare, which is why I thought I needed the surgery right away.)
I wound up with the j-pouch surgery anyway a few years alter, but by then I'd moved out of NYC!
For what it's worth, I feel so great with the pouch that I'm a little sorry I didn't do it sooner. I was sick for 20+ years. Feeling great now, taking no meds, and having energy. It's a dream. I hope you find that the surgery is a great thing for you too.
Sunflower, I am from NJ and my son is being treated at Weill Cornell. I highly recommend Dr. Shulka. He is a kind, gental soul who spends a good deal of time with his patients. I love him. He has been so good to my son, I can’t express my gratitude enough. That said, the best of the best is Dr. Remzi at NYU. He is from the Cleveland Clinic and came to NY last year? I think. He is expert in j-pouches.
We were given Dr Shulka after the folks in NJ were no longer able to care for my son. As I said, I love him. My son is in the hospital right now sadly. Long story. No end in sight. Good luck to you!
Dr. Gelent and Dr. Gorfine of Mount Sinai did my husband's j-pouch surgery 25 years ago in two stages (he had the stoma for two years, then second surgery was the internal reservoir - j pouch). Dr. Gelent has passed away but Dr. Gorfine is still there and he is great.
Drs. Gelernt and Gorfine also did my surgery at Mount Sinai but that’s going back to 1992. Dr. Gelernt passed away in 1996 and Dr. Gorfine, although a great surgeon and great guy, has to be close to retirement. The OP was concerned that the surgeons in this group are close to retirement and in the cases of Bauer and Gorfine both are either close to it or already there. Dr. Gorfine doesn’t strike me as someone who is going to be doing full time surgery these days anyway. He is more likely to spend his time while still working as a teacher at the medical school. He might be close to 70 now and surgery is a younger man’s game. Most surgeons scale back the number of surgeries big time by the time they hit their 60s. Same deal with trial attorneys- they pick their spots and give the smaller stuff to young associates to try.
Drs Gelernt and Gorfine probably did more J Pouch surgeries from 1988-1996 than anyone in the country. It took months for me to get scheduled and they made me lose 10 pounds and another few months before I did that and could be cut.
Manhattan Surgical does have younger surgeons trained by Bauer and Gorfine and although I assume they were trained well, I don’t know anything about them.
EDIT: we have 2 threads going at the same time on this topic and I thought I was posting in the one in which the OP said he didn’t want any close to retirement surgeons. In fact I already posted in this thread and the only caveat I have added in this post is that Dr. Gorfine (who is an excellent surgeon and has done many J Pouches) is quite likely close to retirement and not doing any surgeries as he once was, although you can call and ask if it’s an issue.
So sorry to hear about your IBD. My 12-year old son has severe UC and I researched surgeons all over the country. We live in the DC area and decided to go with Dr. Remzi at NYU for the sheer experience he has correcting other surgeons' work and for his overall success rate with complicated procedures. When we met him in person for an initial consultation, my son (who is emotionally very mature) was ready to have the surgery that same day.
I am indebted to Dr. Remzi - he was everything we hoped he would be and more. Technical expertise, compassionate, attentive, responsive and his bedside manner is superb. Our son had surgery on July 9 after two years of constant pain, flares and missing school. He is now playing basketball, hanging out with friends, going to the beach and having a normal life. He's having 3-part j-pouch surgery and the transition to an end ileostomy was a bit tough at first but has given him a normal life and normal childhood. We would make the same decision again -- Remzi, colectomy, end ileostomy -- in a heartbeat.
Feel free to message me if you want to talk further. There's also an active facebook group on this topic with lots of Remzi enthusiasts.
Me too! My son just came home today from surgery on August 9th. Dr. Remzi is a straight talker, pulls no punches, and very direct while being very respectful. His experience and expertise is endless. I’m so grateful that he is in NY now. My son will have a redo of his j-pouch in about 6 months or he gets down to 190 pounds, which ever comes first, per Dr. Remzi!
Dr Kiran and Dr Geisler are great surgeons, both trained with Dr Fazio at the cleveland clinic. My niece had surgery with Dr Kiran. He was able to undo the problems that she had with her surgeries and able to repair the J pouch. He also has the ability to do the K pouch and talked to us about this option is revision of the J pouch would not be possible. Most surgeons are not experienced with both these procedures (only 4-5 surgeons in the world) we were told by family friends who referred us to him. He is very compassionate and straightforward, The team is excellent. My niece is now completely better and able to get on with life without any problems and without an ileostomy when we had all given up hope.