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 fiberous 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 David Dietz at University in Cleveland is top k pouch surgeon. He was at Cleveland Clinic until last year. BCIR is mainly only done in Tampa Florida
I see Dr Bo Shen at the cleveland clinic. People come from all over the world to see him.
Dr Shen is a GI ,who I also see , I think they were looking for a surgeon though?
Going to se Dr Shen he could really help find the best surgeon for you. He has recommended many different doctors for me and have really helped.
Dr tracy hull!!!! I have had many surgeons and she is by far the most amazing surgeon I've ever had!!!
Dr. James Chruch at Cleveland Clinic
Hi, Just thought it is time for me to make myself known here!
Been a voyeur since 2006 . Thanks for all the helpful info all this time .
On this topic, I am having a K pouch next week in CLE by Dr Dietz. Who was previously at CCF.
My second J pouch is being converted to K
my intestines hate me! I also did very poorly on the ilieostomy,
Anyway, I called CCF to check to be sure and was just told they don't presently do the K!
Dr Dietz was their man and I was referred by Dr Remzi. I've met with him several times and am confident in this decision.
Good luck to all of you and I will let you know in a couple weeks how things are doing
J
If you are looking outside of Cleveland Climic, Phillip Fleshner at Cedars Sinai in Los Angeles is great!
Thank you all. We are in MT and 20 years he had 7 surgeries in 13 months. The first j-pouch was created here in MT and failed horribly and caused miserable complications for my man. As a result, the last two surgeries were performed by Dr. Merrill Dayton when he was at University of Utah. A whole new pouch was created using more small intestine. Here we are 20 yrs later and that j- pouch failed. We need the BEST skilled ileostomy surgeon around who can safely remove the old pouch. Your recommendations are appreciated but PLEASE tell us what city the surgeon is in! Thanks so much!
Appt with surgeon today here in MT. He has a structure in the j-pouch and two small fistulas. Surgeon recommended Humira for the Crohn's but the GI doc also recommended getting the J-pouch out and the permanent ileostomy. Not sure what to do! He dreads the thought of having the ileostomy but his quality of life sucks. I feel strongly he needs a second opinion but time is not on his side- this is becoming urgent. Dramatic weight loss, increased frequency, cramping and sore bum.
Perhaps the Humira will calm things down enough to offer some time to think. Good luck!
Feza Remzi, NYU Langone. Practiced at the Cleveland Clinic. 646-501-8670
If he has Crohn's, removing the pouch won't cure that and he may still need biologics. In my mind, it makes sense to see if Humira is useful before scrapping the pouch.
Jan 
Dr. Eric Weiss Cleveland Clinic Weston FL is top notch.