Anyone with Chrones disease and/or UC and a pouch?

[TAM22]

HEy,

its me again. New snag in the story... found out I have Chrones now besides Colitis. Looking to see if anyone has Chrones and a kock pouch or barnettt pouch or sn outside ostomy bag. I was told they wouldn't consider me for a pouch now that I have Chrones. Is it true? Does anyone know if Dr. Fazio in Ohio consider chrones patients for a pouch? Heard nothing but good things about Dr. Fazio and I will do anything and go anywhere if it means the best care for my issue. Sher and I have something in common, we are both that 2% case. Lucky us! Thanks all!

tam22

[lesson]

Once you are diagnosed with Crohns, the option of a Kock or Barnett is out. The reason is the Crohns can manifest itself in the remaining bowel.
I don't know where you are on the west coast of Florida but have you considered the Cleveland Clinic in Weston (west of Ft. Lauderdale)?

[carolsantoro]

Re your post about Crohns and a continent ileostomy, I actually went to Cleveland in June 2003 where Dr. Fazio, after examining me and hearing that I had been diagnosed with UC for some 30 years at Johns Hopkins, Mount Sinai, etc, etc,, and reading my history, etc. (in other words, he was very careful) performed k-pouch surgery for me. A couple of days after the surgery the pathology dept. and some well-known pathologist there determined that I had actually had Crohns all along (but "presented" like a UC patient). Dr. Fazio said that there was no arguing with the pathologist's report (they found one granuloma which seems to be what determines which is which).

I've been meaning to write to Dr. Fazio to let him know how lucky I feel that the surgery was done before that pathologist knew about the Crohns because, despite the possibility of Crohns coming back in the pouch, it hasn't and I deduce that because my real diagnosis is finally known, I now take purinethol daily and maybe that's what is keeping me really healthy. Incidentally, I had had j-pouch surgery done about 8 years before 2003 and did have pouchitis constantly until Dr. Fazio worked his magic. Apparently, the pathologists at that hospital didn't find what they found at the Cleveland Clinic.

In fact, I should write to Dr. Fazio in hopes that others with Crohns might be given the chance to have his great surgery. Dr. Fazio said that the odds of success after K-pouch surgery for someone with Crohns, as opposed to UC, were about 50% 5 years after the surgery, if I remember correctly. I intend to be on the positive side of those odds.

The past 3 years have been great for me thanks to the great folks at the Cleveland Clinic.

Good luck to you.

lynnesa

[Sungirl]

I also have Crohn's. I live in Orlando and I just had Illeostomy surgery six weeks ago. I went to Dr. Steven Wexner at the Cleveland Clinic in Ft. Lauderdale. I did ALOT of research on them before I went down. He really is one of ( if not the) top colorectal surgeons in the country.

I highly reccomend him. He and his team work day and night to help people. They really know what they are doing and they have seen it ALL.

Good luck to you.

[Rachelle]

i have battled Chrones Disease for 16 years and I am 34 years old Dr. Fazio has operated on me 24 times. He says my case is one of the worse he has seen.
He is the top of his field and resently Knighted in his home country for the work he has done for Chrones Disease.
He is my god on earth and is kind and understanding. The first time i met him I was so confused and didnt understand a thing I was going thru. He sat me down and told me what I was feeling and didnt ask me one question. a huge weight was lifted off my shoulders. and from then on i leave it all up to him. His partners and co-workers at the cleveland clinic are as great as him and he wouldnt have it any other way
feel free to contact me ive seen almost everything to do with this disease and would love to talk.