Hello. I would love to connect, get to share experiences and talk. 29/M/NYC with a jpouch, currently waiting for take down
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Ak, just curious, where did you have your surgery. My son has had about two dozen surgeries at Weill Cornell. He is 26, but not much of a talker about his disease. I can ask though. We live in NJ.
Hi ! I have had my surgeries at Mt. Sinai in NYC. So far it's all ok. How is your son doing in general ?
It has been a really rough two and a half years! But finally, he is doing great. It has been such a long and difficult road for him. He was diagnosed with PSC last year, had two colostomy and ever complication you can think of and some you can't. I think it's finally over! I say this very cautiously! Who is doing your surgery at Mt Sinai? There are a few folks on this forum that go there.
dianne
Dr. David Chessin at Mt Sinai. Great surgeon. How about you ?
We had Dr Shukla and Dr Milsom. Milsom studied under Dr Remzi at Cleveland. Then we had Dr. Afanah for gall bladder and Dr. Lee from Interventional Radiology. It's been a complicated journey. But Dr Shukla is our main surgeon. All,the rest became involved as things got more complicated.i have heard good things about Dr. Chassin. We were referred to Cornell because of Jeff's liver. It's a potentially fatal disease and Cornell has one of the best liver doctors in the world! It never ends with this poor kid!
I see. I actually met dr shukla for a few years ago not relating to my current situation. I must say he seemed like a very nice person, very good person.
my one suggestion with psc - keep a close eye on diet and keep a low sodium diet. This will help with managing symptoms or symptoms that might come in the future. I never knew about PSC until I shared my room with someone who had it.
Thank you! As much as I try to keep up with PSC news, Jeffrey's liver is not a problem and I have had so many other fires to deal with with respect to him. Dr Shukla is a sweet heart! Such a patient man, and excellent surgeon. He brought Dr Milsom in on Jeffrey's case because it is so unusual. Normally Milsom does not see new patients and he does not take insurance so I'm fortunate, I got him for Free! I have never met the man but his hands have been inside and on Jeffrey more times than I care to remember. And I have Dr Shukla to thank for that. He has been so good to Jeff, and my husband and me. I truly can't thank him enough.
Keeping an an eye on jeff's diet is a difficult subject! After all, what do I know! Fortunately when he had a liver biopsy in January, the liver was pink and healthy looking. We caught the disease very early and by accident. Jeffrey nhad a gall stone in the main bile duct and had turned jaundice. Of course, I'm in Florida when this happens! So when they did an MRI, or CT I forget which, they saw the wonky bile ducts. And then came the ERCP. We were still at Robert Wood at the time and we were very lucky that they had a gastroenterologist who had done thousands of them. She happen to train at Cornell under Dr Bosworth, so we were very lucky. I've been very happy at Cornell. They are really working hard to get Jeffrey healthy and people are just jumping on the band wagon.
AK & Jeffsmom -
Milsom didn't perform my original surgery but took care of me for about ten years and I think he is great. I live in NJ but work in NYC almost every day. If anyone wants to vent or hear what it's like having a pouch for 30+ years, I'm available by phone or we can meet for a cup of coffee.
Michael
Michael, i live in NJ as well. Husband works on Park Ave. where are you being treated now? Finally Jeffrey is doing well!
JM - I'm not really being treated. Having the pouch for 30+ years, I'm sort of self-sustaining. I do see Ellen Scherl / Vinita Jacob at NYP every couple of years ... let them check out my scope (and look at my prostrate while they are in the neighborhood) ... but no regular care.
Glad Jeff is stable ... can be a long road and sometimes arbitrary. Shoot me a private message if you ever want to talk!
AK-NY posted:Dr. David Chessin at Mt Sinai. Great surgeon. How about you ?
He saved my life. I am so thankful for him. Have to see him again next week.
I am also in NYC and Dr Chessin was my surgeon. Would love to connect with others locally if anyone is interested.
The First Tuesday of every month at 6:30 PM, people with Crohn's and Colitis have a support group in Manhattan. A few of us there have J-Pouches. Come check it out:
New York City First Tuesdays Support Group
10 Union Square East,
New York, NY 10003,
This support group meets at Mount Sinai Downtown in Union Square East (near Panera). Meetings are held in the Second Floor Conference Rooms. This group is open to men and women with IBD, as well as caregivers and friends! Topics related to IBD are discussed as people share their stories to empower others with hope.
Meets: First Tuesday of the Month from 6:30-8:00pm at 10 Union Square East.
CCFA
Greater New York Chapter