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Hi everyone,

I am considering j-pouch surgery in the near future and was wondering if any of you j-pouchers out there got your surgery in New York City. Or, if you have recommendations for any surgeon in this area. I hear that it is critical to get the best surgeon to operate, so I want to make sure I meet with a few good ones before deciding on one.

Also, what questions should I be asking the surgeons when I am meeting them??

Thanks!!!
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Dr. Joel Bauer. He's not warm and fuzzy but he's one of the best. Just ask him, and I wouldn't have wanted anyone else to have done my pouch. He works tag team with another doctor in his office who handles the southern most part of the surgery and in some ways the most critical. Saving the nerve endings at the anus is as important as any part of the surgery and boy do I have those nerves working perfectly.
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Also, Barrister, your signature says you've had chronic pouchitis. How bad is it? Has it gotten better over the years?


I have had chronic pouchitis which has been managed with rotating antibiotics since 1995. Pouchitis can get worse but mine has kind of been held in check, in a "simmering" state. It never goes away but my symptoms are usually in control and it is a much better situation than when I had UC.

Drs. Gelernt and Gorfine did my original surgery at Mount Sinai Hospital in 1992. I am not sure they even did the laparscopic surgery in those days. It was a 2 step procedure and it was quite rough. I had complications after surgery at Mount Sinai, but they were managed very well, in my opinion. I thought my care by the hospital and by this group was excellent.

I had a septum that developed in my pouch and it took two additional surgeries by Dr. Gorfine to resolve this issue. Since 2000, I have had no surgeries and have been just treating the pouchitis. I respond well to the antibiotics but they do not eliminate the pouchitis. It is an ongoing issue for me. But I have had my pouch for 20 years now and I feel pretty good.

You would be in very good hands with either Dr. Bauer or Dr. Gorfine. I had some contact with Dr. Bauer in my aftercare but Dr. Gorfine did my surgeries. These two have probably done thousands of pouches. They are highly skilled, highly competent surgeons.
UCWarrior,

My recollection in dealing with Dr. Bauer and Dr. Gorfine is that they do not deal with insurance but let you submit your own insurance claim if your carrier will cover it. Back in 2000, when I had my last pouch revision by Dr. Gorfine, my then insurance carrier paid 80% of "out of network" costs. So I paid Gorfine in cash and then submitted the bill to the insurance company and got my 80% reimbursement. I want to say it was Health Net back then but it has been so long I cannot remember. What I do recall is that I went several thousand dollars out of pocket on that surgery after the insurance company paid their 80%. Obviously that was a pouch revision and the original J Pouch surgery would be much more expensive.

Unfortunately most of the in demand surgeons in NYC do not accept or want to deal with insurance. They shift the burden/hassle of dealing with insurance companies from their office staff onto their patients. From what I have experienced this is very common in New York City with busy doctors.

You should still have a consultation with Dr. Bauer and get his opinion on your situation.
Agree with the others that Mount Sinai is an excellent place to have these surgeries. Not only are the doctors great, but the nurses are wonderful with ostomies and very used to these surgeries.

I had my surgery done by Dr. Michael Harris at Mount Sinai, who was incredible but is now in New Jersey (and also has complicated insurance policies). However, my pouch was constructed by Dr. Sergey Khaitov, who is still at Mount Sinai and does all of my follow-up. Dr. Khaitov is truly wonderful - he is very knowledgeable and thorough, and I trust him immensely. Definitely recommend either Dr. Harris or Dr. Khaitov!

Also, for what it's worth, I know others who have had great experiences with Gorfine and Bauer.
I will go ahead and have my consult with Dr Bauer and then figure out later if I can afford him. He does seem to be recommended highly by quite a few people...which is very encouraging!

I did have another question - my main problem with UC is the amount of time I end up spending in the bathroom (along with cramping, bleeding, feeling lethargic, etc., etc....). On a given day, I spend a total of 3-4 hours sitting on the pot because of incontinence. Does the incontinence get better after getting the pouch? How long does it take for most of you to empty your pouches?
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Does the incontinence get better after getting the pouch? How long does it take for most of you to empty your pouches?


Yes, you will not have the same issues with incontinence as you do now with UC. The diseased organ will be removed. It is the disease that is causing the incontinence. A colectomy will cure you of UC. You will have full continence with the J Pouch except you will have to go a few times more per day due to having less intestines. Food will go through you a little faster as a result, but it is on the order of 4-6 bowel movements per day in most cases. You will not spend 3-4 hours per day sitting on the commode, which is absurd. It tells me you are at the endgame with your colon, in view of all the meds you are taking.

Once you strengthen up your anal sphincter with Kegel exercises and get used to the pouch, it's very easy to empty. You will go more shortly after takedown then you will eventually once the pouch expands. You will be encouraged to hold in BMs during the pouch expansion process. You will have a much easier time doing so than you do now with a diseased and inflammed organ.
Last edited by CTBarrister
Glad you are going with the Mt. Sinai hospital. Dr. Milsom is absolutely awesome and is at NY Presbyterian. I know we are not here to bash hospitals, so all I will say is that the hospital is in no way a reflection of Dr. Milsom's expertise and compassion. I had my major surgeries at the Mayo Clinic in Rochester, MN, so maybe I am just spoiled, but I was very disappointed with the hospital in general...especially the ER, which I had to recently stay in for 19 hours before getting a bed upstairs. Good luck with everything.
My husband had a revision and a subsequent ileostomy with Gorfine/Bauer. He did not have a great result with them, which we do not attribute to their surgical skills at all, but a little compassion could have gone a long way when it came to the post-op complications he endured. So while I know they are very skilled surgeons, and two of the best for these procedures, I think that they miss the mark when it comes to bedside manner. I cannot recommend Dr. Harris enough though. He revised my husband's ileostomy after the one they did, and we have since followed him to NJ. He is a great surgeon and his bedside manner is by far the best we have come across so far.

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