Skip to main content

I am a 56 year old man who has had Colitis since 1997 and am tired of not being myself, so I have talked to my family and have decided to have the j-pouch procedure. I live in Liverpool, N.Y. and have decided to have it done at one of to reputable places (Cleveland Clinic or Boston Center). Can anyone give me any info or personal experiences regarding j-pouch surgeries at either places??

Thanks,
Charlie
Original Post

Replies sorted oldest to newest

Charlie,

I was once in your shoes and it's not fun. Tough decision to make and not an easy one. I also decided I had had enough of UC & all of the meds, the uncertainty, low quality of life & I had J-Pouch surgery 4 years ago, this month. For me, it was the best decision I have ever made. Recovery is a long, tough road but it's worth it. I had a 2 step procedure & Step 1 was the hardest of the steps but I made it through & absolutely love my Jpouch. As for surgeons, like you, I came here for advice & names of top docs and was given 2 names of surgeons in NYC. I live in the area & was prepared to travel to Cleveland Clinic if I had to but Dr. Jeffrey Milson at Weil Cornell in NYC was highly recommended. I met w/ Dr. Milson & knew he was my guy. He's an expert J-Pouch surgeon, head of Colon Rectal dept at Weil Corneell, & is considered one of the foremost authorities on JPouches in the US plus he's a really nice guy w/ outstanding bedside manners. I'm pretty sure he worked at Cleveland before coming to NYC. I don't remember the other doc that was recommended to me in NYC because I never met him but he's also supposed to be one of the best, not as personable as Milsom but just as good and I do think he accepts insurance which you should know, Dr. Milsom does not. At least he didn't 4 years ago. I have no info on Cleveland Clinic or Boston Center but just wanted you to know that you have 2 terrific docs to consider in NYC. Just a thought. Search "NYC surgeons" and "Milsom" on this site & you'll probably come up w/ the other surgeons name as well as many posts about Milsom. I wish you the best of luck & hopefully others will reply to this post and give you some info on Cleveland & Boston Center.
You have some great options available to you! They all look to be 4 to 5 hours driving. I am personally a patient of Cleveland Clinic. They have been great and saved my life. They are known nationally as the jpouch center. Lots of people go there to get surgeons to fix their messed up jpouches.

The only negative thing I can say is that you have to share a hospital room Wink
Hi Charlie,

Choosing a surgeon is no easy task and I suggest that you try to meet in person with as many surgeons as you can before making a final choice. I had my jpouch created in two steps in NYC and my surgeon was Dr Joel Bauer. He is a great surgeon and I am very happy with the pouch. He is very much in demand so sometimes it is hard to get his attention and also he does not accept insurance. However, I have no complaints or regrets with my decision to have him operate on me. It's almost a year since the first surgery and I feel a thousand times better than when I had UC.

Good luck with your decisions!
Hi Charlie,

Just something to consider, I live in the Syracuse area and got my j-pouch under emergency circumstances. I was very scared of staying local and worried about the quality of care. Dr. David Nesbitt did my surgery at Crouse and used the DaVinci robot. I was extremely pleased with the results. I cannot say enough about Dr. Nesbitt as a doctor and as a human being.

I had a blockage about six weeks after the first surgery and was relieved that I had the surgery local and had a relationship with a local provider. Don't write off the care that you can get around here. That being said the only second opinion that I could get at the time was to go to Rochester because I was physically unable to travel any further. If you want any information about the local supports feel free to message me.

Good luck in your search.

Kathleen
Charlie,

I second the opinion of Kathleen (kiki105) to not underestimate the quality of local providers and the value of developing a relationship with someone close by. I personally live near Rochester and had my surgery at Highland hospital with Bastian Domanjko of the Rochester Colon and Rectal Surgeons (also using a DaVinci robot). My experience with Highland hospital (particularly the group on West 6th) and Dr. Domanjko has been completely positive - including my ostomy nurse who was awesome.

You will also want to consider follow-up care. I have been battling pouchitis from the get go and have needed to see Dr. Domanjko on a relatively frequent basis as we try to figure out how best to deal with the issue. Being a short drive (on my way to work) makes life very easy for scheduling office visits and obtaining appropriate prescriptions.

The very best of luck to you. You are welcome to message me as well.

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×