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I recently consulted with Dr. Milsom (after a 6-hour wait in his office...) about getting a j-pouch.

Despite all my doubts, I left his office with a good feeling. I had a subtotal colectomy done @ Mt. Sinai
almost two years ago. Although it has functioned well, like many others, I don't want an external
appliance for much longer. I felt ready to get the j-pouch and move on with my life.

However, I don't really know much about the doc, aside from his excellent reputation. I did a search here,
and read a number of posts. However, I wanted to ask the question myself.

Have any of you had a j-pouch done by Dr. Milsom, or personally know anyone who has? Any idea how
many j-pouch surgeries he's done (I asked him, but didn't get a clear answer)?

I have a surgery tentatively scheduled for November 26th, but I want more information in the meantime.
I'd love to talk with any of you that know him, especially those who have had him work on your pouch.

Much appreciated,

Thanks,

Replies sorted oldest to newest

He has a good reputation, as do Drs. Bauer and Gorfine who are with Manhattan Surgical Associates. Drs. Bauer and Gorfine work out of Mount Sinai Medical Center, a facility ranked #5 in the USA for gastrointestinal treatment, and is certainly the best in NYC. There are at least a few persons on this board who had their pouch done by Dr. Milsom.

If you do a search his name pops up in more than a few threads, here is one:

http://j-pouch.org/eve/forums/...107018716#5107018716
CTBarrister
Thanks for the response!

Yeah, I found all those threads as well during my search. It seems like the experiences have all been positive, at least as far as the surgeon is concerned.

I still also have my doubts about the procedure itself based on all the things that could go wrong, so I have no idea how my experience will be.

What kind of problems did you face? How many times did you/do you go to the bathroom each day?
S
Hey Stuff,

Just wanted to give you a word of advice because I'm almost 8 months out from my takedown. Just wanted to make sure you not only focus on how experienced the surgeon is in creation of your J-Pouch but how good the follow up care is. I live in a small city in PA and chose the local surgeon. I would usually get a couple other opinions because having UC for so long and dealing with the healthcare system so often I don't trust Drs at all. I talked to my local surgeon a couple times prior to making the decision to get the surgery done and there was something about this gentleman that gave me confidence and trust in him. I am good at reading people and a good judge of character after being in sales for over a decade. He had a very caring domeaner and wasn't trying to force the surgery on me or sell me on the "magical" procedure that what cure all my problems. He made sure that I tried everything I possibly good before I chose to get a major life changing surgery. When I met with him in the office he explained all the risks that I could have by having this procedure done and gave it to me straight which I appreciated. I did not have a textbook procedure and needed extensive follow up care. I was not only happy that my hospital and surgeons office were only 10 minutes from my house but realized why I picked this surgeon in the first place. He made a couple house visits which is almost unheard of and not only came to my house when I was feeling ill but did it on the weekend when he wasn't even on the clock and made his visits in his plain clothes. He also dropped off prescriptions at my house to make things convenient for me. He also has played therapist for me and my wife because we went through a lot of tough times. He has been there for me every step of the way and reassures me that he will continue to be whenever I need him. Just wanted to give you my story so you have something else to think about and maybe find out from people how their follow up care was from the surgeon also. Good Luck.
P
stuffperson,

I effectively had no choice. I had severe UC, no continence, taking 60 mg prednisone etc. and when it came out it was dissolving in my surgeon's hands. Toxic megacolon was in my future if I did not have surgery. Life is good with the pouch. Continence is very good, 5-7 bowel movements per day depending on whether I am on a lactulose week in which I am a little runnier than I am when I am in an antibiotic week, and this all despite 18 years of treating pouchitis. I can only compare the before and the after in my case. The after is MUCH better than the before was, but in your case the before may be better than my before was. And the after might also be better.
CTBarrister
Dr. M did not perform my original pouch ('86), but he has been my physician since 2000. In that time, he performed 3 minor revisions to relieve narrowing and one major one.

I am sure that if you searched, you could find other surgeons who are his equal technically and have had the same level of experience, if not a bit more. But at this level, unless you have a peculiar physiology or other complicating factors, it really should not make a difference.

He is an extraordinarily busy surgeon (though I thought he was scaling back) with the most frequent criticism being that he wildly overbooks himself. I spent quite a few hours in his waiting room over the years.

So, like others have said, I would value the post-operative experience almost as much as the actual cutting & sewing. The tradeoff among the best surgeons (and hospitals, don't forget that too) isn't that great presuming you are a relatively straightforward case. Go with someone who meets your minimum level of experience but also nails the bedside / post-surgery side of the question.

I'm in NJ too. Shoot a private message if you want to talk live.

Michael
R
Thanks all.

Phonix, that level of care is amazing...never heard of that.

My UC was never that bad. I could live and manage, worked out, went out, etc. Until all the complications in 2011, at least. That's when some thought it might be more like Crohn's due to a stricture, abscess, etc...but it's indeterminate or just an unusual case of UC. The distinction isn't all that clear in all cases anyway.

My bag has functioned well enough, it's just that I don't want one anymore. But it's tough going from something that works and is the safest/simplest solution, to one that will look and hopefully feel better, but also has other risks.

In my opinion, considering Milsom's super-busy schedule and lack of insurance acceptance, he would have to stand out as the obvious best choice in order to make sense. It just doesn't seem that way. I recently heard some questionable things about him, which may be untrue, but one has to feel comfortable in all areas before moving forward.

I saw Dr. Michelassi @ NYP last year, but he seemed reluctant to do my surgery. We'll see about that one. I just made an appointment with Dr. Adrian Greenstein @ Mt. Sinai.

At times, it seems ridiculous how difficult I find it to make decisions.
S
Yeah it sucks having to do all this research and go through such a rigorous and monotonous process to find the right Dr but in this case its definitely worth the time and energy to do the proper research and find the right DR for you. Remember this Dr is going to determine how the rest of your life is going to play out so make sure you get as much background and do as much investigative work as possible. I think there are always positives and negatives to every Dr but you gotta decide what aspects are most important. You obviously want a Dr that has a lot of experience with this surgery that's #1 but like I said after the surgery you are going to most likely going to need a decent amount of recovery time and after care so just try and take everything into consideration. You light want to make a chart with each Dr you see and read about and write down your positives and negatives and maybe do a comparison. Take as much time as you have and I'm sure youll be able to make the right decision. Good Luck and keep us updated.
P

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