Looking for reccomendations in New York State

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lindaj
Posts: 800
Joined: 2007-04-29 20:40:15

Looking for reccomendations in New York State

Post by lindaj »

I am considering J-pouch surgery. I have already been to Cleveland CLinic and the surgeon I saw did not want to do the surgery as she felt I have Crohns. All my biopises show indeterminate and I have all the classic signs of colitis. I have had an ileo for 2 years and can live with it but want to know that all my options have been explored. I live in the Southern Tier of New York but am willing to travel... I already drove 6 hours to Cleveland for the first opinion. So.. any suggestions??
LindaJ
UC since 1993
Crohns since 9/10
Ileo 9/05
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Charles_in_Tx
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Joined: 2005-10-01 11:07:58

Post by Charles_in_Tx »

Cleavland Clinic is rated as one of the best Ostomy Hospitals in the US. Check the two sites below for Certified Colorectal Surgeons in NY, NY. There are several associated with Mt.Sinai School of Medicine where you may want to get a second opinion:
www.mountsinai.org :

http://ascrs.affiniscape.com/displaycom ... clenbr=104

http://www.abcrs.org/

The Mayo Clinic is also rated high for Ostomy Surgery:
http://www.mayoclinic.org/

Good luck and be well,
Charles in TX
lesson
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Joined: 2005-10-09 13:05:25

Post by lesson »

These 3 doctors who have privileges at Mt Sinai have spoken well of on the Jpouch board:
Joel Bauer
Stephen Gorphine
Alex Ky (female)

I know there are other but can't remember their names.
You could post on www,jpouch,org and will most likely get names from happy patients....and more info about the Jpouch
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Mara
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Post by Mara »

I don't have a continent - just an old fashioned ileostomy - but I was referred to Dr. Gorfine when I needed a colo-rectal surgeon for some issues. He is highly thought of and has been listed as one of the hundred best doctors in an annual survey that is printed in New York Magazine.

He did a stoma revision for me and all went well.

I realized you have a different issue but I would recommend him.
Ileostomy due to UC - 50 odd years
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lindaj
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Joined: 2007-04-29 20:40:15

Post by lindaj »

Thanks for the info. I have been on the j-pouch board for awhile trying to work through all the information. I am still undecided about having the surgery but would like to talk with a doctor that others have had success with.
LindaJ
UC since 1993
Crohns since 9/10
Ileo 9/05
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Esten
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Joined: 2005-10-09 23:57:22

Post by Esten »

if you do have crohns, as i understand, a j-pouch is not an option.
Certified Medical Assistant
ileostomy since 2004
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lindaj
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Joined: 2007-04-29 20:40:15

Post by lindaj »

Thanks Esten.... that's the problem. I most likely don't have Crohns but my biopsies are indeterminate. My disease has been very colitis like and I have never had issues anywhere but the colon. I just really want to know if it is an option for me and then I will decide whether I want to. I want a doctor who is experienced in J-pouch surgery and also a patient focused individual. I am a nurse so I am aware of all the possible complications.
LindaJ
UC since 1993
Crohns since 9/10
Ileo 9/05
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Lynne
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Joined: 2005-10-01 06:04:13

Post by Lynne »

Linda,

I am always quick to recommend Cleveland Clinic - Dr. Fazio did my Kock Pouch in 1990. If the doctors there do not think you're a candidate for a J-Pouch, they have good reason. Even if you do find another surgeon who will do it with Crohns, I'd be really hesitant.
Lynne, CDN Chair
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lindaj
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Joined: 2007-04-29 20:40:15

Post by lindaj »

Hi Lynne,
Thanks for your response but most of the doctors don't feel I have Crohns. My biopsies are all indeterminate. The only one who felt I might have Crohns was the surgeon at Cleveland and she was really on the fence as well. My GI who did his fellowship at Clevelnad feels I have colitis.
I really want a second opinion before I say yes or no to surgery. Then I will be able to make an informed decision . I feel now if I don't pursue it , I will always wonder.
LindaJ
UC since 1993
Crohns since 9/10
Ileo 9/05
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