Hello All, we need a doctor ASAP to look at my husbands pouch and give us a solid opinion on what course of direction to take. He's had his pouch for twenty years. Long story short, there were so many complications 20 yrs ago with the original surgery (colon removed due to UC), and he had to have the original pouch taken out and a new one performed in Salt Lake City (we are from MT). He was then diagnosed with Crohns in 2008. We were told after a flex-syd this week that his pouch is "shot, a deformed lump of fibrous tissue" and the opening was so small into the small intestine that he couldn't even get his scope in there. He said the J-pouch needs to be taken out altogether and he will need an ileostomy bag for the rest of his life. My husband would like to explore other options like a BCIG, K or knock pouch, anything internal! Who is the very BEST physician to help us tackle all of this. We don't care about bedside manner, we care about SKILL! please HELP!
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Dr Remzi, NYU New York City.
Thank you!
Dr. Reddy at Yale New Haven is my surgeon. Excellent surgeon and the J-pouch guy at Yale. He also has a great bedside manner!
Any others? We hear great things about Dr. Remzi. Traveling from Montana to New York is not only costly but not sure how well my hubby could handle it after surgery. We can handle the cost, but can he handle the sitting position for that long? And one layover?
Dr David Dietz; he left the Clinic and is just down the street at University Hospitals. I presume most people with complicated GI issues do travel to see the best doctors. There are several threads on how they handled traveling for some advice. I feel for you as it's a lot to handle to travel and not feel well. If you are considering the Kpouch or BCIR, you should see the best surgeon you can. All the best and positive cyber thoughts being sent your way! -Kara
My BCIR surgery was done in St Petersburg, FL and I live in northern Wisconsin. I was in the hospital for the customary 21 days, which allowed me to be able to travel for 12 hours home with no problems. The trip involved a 45 minute cab ride to the airport, a flight from Tampa to Milwaukee with a plane change in Atlanta, and finally a 5 hour drive to Rhinelander. My nurse at the hospital prepared me for travel and gave helpful advice on traveling. At the airport, they had a wheelchair and attendant who was very helpful. I went through the handicapped lane for TSA and was not even frisked. The entire trip home took 12 hours and I had no problems sitting. A soft cushion will make sitting more comfortable if your bottom is still sore. I suggest that you wear the compression stockings they give you at the hospital to prevent embolisms and also to move around during the trip. If you have surgery, be sure to let your surgeon and nurses know about your travel arrangements so they can appropriately advise you.
Although I have had no personal experience with either Dr. Remzi or Dr. Dietz, I have read numerous positive posts about them on these message boards. If you are considering a BCIR, I highly recommend my surgeon, Dr. Ernest Rehnke, in Florida. If time permits, you could make contact with a highly rated surgeon and ask if you could fax some of your medical records for a recommendation on what procedures he could do for you.
Bill