Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Hi,
I live in Ct and was wondering if anyone could recommend a top surgeon with expertise in the j pouch surgery (total colectomy with ileoanal anastomosis) to cure chronic Ulcerative colitis of 20 years with dysplasia noted on most recent colonoscopy. Travel is not an issue. Finding a top surgeon who has peprormed this operation with much expertise and success is my goal.
Surgery Hemochromatosis Irritable bowel syndrome Ulcerative colitis Diarrhea
Have you been checked for Chrohn's disease? I am not familiar with the colitis, but my fiance had diarrhea for 7 years and lost 50 lbs. in one month (this has been almost 29 years since he was diagnosed). He has an ileostomy (or also called an appliance). The operation saved his life. The doctors sewed his rectum and removed all of his large intestines. The doctor told him that he could only take part of the infected area, but that it could return. He has had no problems with his ileostomy..no infections or anything. He works every day for the power company and does hard manual work. When we met he was self-conscious about "the bag on my side", but it did not bother me at all. I never notice any odor and now I forget he even has one. It requires emptying when full, but he eats anything he wants.
His surgery was done at WVU Medical Center in Morgantown, WV...but I think that the doctor who did the surgery is probably retired now. His name was Dr. Grant.
I hope this will help you make a decision..and I also hope that you find a good doctor to help you.
Janna
Thank you Janna. Unfortunately I have had chronic Ulcerative colitis for 20 years and now due to the dysplasia I need to have surgery. I am looking into the
J pouch surgery which will allow me to go the bathroom normally, but just more often.
My dad had an ileostomy 20 years ago due to UC and at that time they were not doing J pouch surgeries.
I have to be very honest with you in that I do not want to go that route if not necessary. Somehow I think it is more managable for a man. I do agree with you though in that I completely forget my dad has it and he manages it just fine.
You sound like a wonderful fiance and he is really lucky to have you because I am sure it was difficult sharing that part of him with you. I am really glad to hear he feels well. Was he diagnosed with Crohns when he was sick? If he has had no other problems with his small intestine since he had the operation, it is likely he had Ulcerative Colitis also.
It never affects the small intenstine whereas crohns does.
Best of luck to you both with your marriage and thank you for your response.
Kelly
Hi Kelly,
Thanks for sharing with me. I can agree that you would probably be better with the J pouch. I am sure that men would deal with the changes better than women. AND, I realize that sometimes spouses don't deal with it well either. It would take a good supportive person.
I was not with Lennie when he was so sick that he came home from work and lay on the floor in a fetal position for hours and he said he was also irritable. He lost so much weight he almost died. His Chrohn's was thought to have come from the agent orange when was in Vietnam.
There are so many gastrointestinal problems that are similar. I was diagnosed with Irritable Bowel Syndrome at one time....and of course with the MS a person has bowel problems.Then, I started having diarrhea last year. I had pancreatitis (from the hemochromatosis).
I sure hope you find someone who can help you with the surgery and the J pouch. I know what it is to try to go somewhere and worry about diarrhea.
Take care and God bless you.
Janna
HI Kelly,
I hope you get this in time. My name is Keri and I live in Rotterdam NY. I was diagnosed with Ulcerative Colitis when I was 13 years old. A year and a half later my large intestine pretty much rotted away. I was down to 60lbs, had been given my last rights and almost died until a doctor performed a miracle. I was one of the youngest people to have a colectomy (the removal of my whole large intestine). I had a colostomy for six months until my insides healed and then he reversed it and I now have a J pouch.....That was believe it or not 18 years ago. I am now 32. I have had no symptoms of my Ulcerative Colotis and I can eat whatever I want. The name of the doctor is Garner P. Johnson of Capital District Colon and Rectal Surgery Associates-(518)438-2776. Please call them. You can right me back if you like. My email is carebear12306@nycap.rr.com He saved my life and I am sure he has saved many others.........Good Luck!
Advertisement
Add to the discussion