dr. Shen is who you want to see at Cleveland Clinic in Ohio. It make take a few months to get an appt, but if you are persistent (and call everyday) there may be a cancellation. He is the one who found my problem (with a k pouch) after I went to 4 other doctors in different states. Looking back, I should have gone to Dr. shen first, but since I lived near Boston I decided to go to Lahey clinic first since it was close by. DR. shen found my problem immediately after my first scope with him.

When you make your first appt. you should be prepared to stay a few days. Also try to get a scope appt while you are there. (Probably after your appt with Dr. Shen). You can bring your medical records, but it seems they like to do their own tests. I guess what i,m saying is you have to be proactive and hopefully your local Dr will be able to send records, so you can schedule all the tests you might need while you are there. The office people are used to people coming from out of town and will help you schedule tests and appointments close together.

I now go back for a scope every year to see Dr. shen. I don't really trust any other doctor. I usually call about 4 months before I need the appt.  BUT--For my first appt, I did call every day and there was a cancellation, so I got in 2 months quicker.

I'm sure ofhers will chime in, but the experience with Dr Shen has been VERY positive.

Marz, Thank you! I also posted this question on the JPouch facebook page and I the overwhelming response was to see Dr. Shen! He must be amazing! I am hoping I will still heal as I am only 8 weeks out, but I have to be proactive about it as well. I currently have a temporary ostomy and I am wanting to get rid of this thing asap! I know the best thing is to stay "diverted" with the ostomy so if I require another surgery I am already diverted. This was supposed to be a 3 month ordeal that is taking on a life of its own. I am extremely frustrated. I feel like my surgeon should have just referred me from the get go to the CC. Again, thank you so much for the tips and tricks and advice. It's nice to know you are not alone in this madness!