Thanks for your thoughts/responses! I had a J pouch formed in 1992 for UC. I was re-diagnosed with Crohns in 2010/2012 and it has been a bumpy road since then. I also have a stricture at the inlet of my pouch which has been asymptomatic for me personally (don't know if had any effect on anything inside). Remicade worked awesome for me but only lasted about ~2 years (developed antibodies) and Humira and Cimzia were useless for me. I don't have much faith in drugs (and I am a pharmacist!)...ok maybe not drugs in general...but drugs in my case. It would be so heartbreaking to re-connect, have another biologic fail, and have to go permanent Ileo then anyway. I really have lost faith in my body!
Dr. Remzi wants to examine me/run tests before giving me possible option(s) which makes sense. Cleveland Clinic said my pouch looks fine but I am worried about all the peri-anal issues that I have had. It doesn't matter how great my pouch looks if I can't get stuff out without angering things. Dr. Gorgun also performed fistulotomies on my peri-anal fistulas so I don't know how badly my sphincter was affected. No hate towards him if my sphincter was damaged b/c I couldn't tolerate the setons and needed some normalcy back in my life. My main reason for going to Remzi was to see if he thought a K pouch/BCIR was a possibility. He said generally speaking, he would not go that route with a Crohn's diagnosis. If/when I get my pouch removed and my butt closed, the surgeon will create a new end ileostomy, so I will lose the awesome guy I have now. I am tired of mucus drainage from my rectum which is so unpredictable. Plus I will always feel like I am in limbo until I make some final decision or one is made for me. Now that I have met Dr. Remzi, I am torn about going through more tests and seeing what he has to say or just returning to Dr. Gorgun at Cleveland Clinic. I know the decision is ultimately mine, but I it always helps to hear the experience/opinion of others too! Thanks again for the input/questions and I wish everyone many more years of happy pouches!!