I'm thinking of going to the Cleveland Clinic to see Dr. Bo Shen for a second opinion on my chronic pouchitis...for those of you who have done this, what does this entail? ...how many days will I need to be there? ...Debbie

hi..dr. bo shen is my doc. and i live in cal..just call up to make appointment..i think first time we flew out on one day left two days for meetings..but i think you might find all that out when you set up appointment..

rebe

I was diagnosed with chronic pouchitis in August and have my appointment with Dr. Shen in 2 weeks. I'm at this point I'm hoping he simply confirms the original diagnosis so I can rid myself of this pouch. I'm sick and tired of being sick and tired and find myself longing for the ostomy at this point.

I will say that I've been less than impressed with the scheduling at the Cleveland Clinic. I made my appointment over a month ago, first online only to find out that all the notations in the world don't help when your dealing with imbeciles. So then I decided to call in and schedule over the phone, the person took my information and confirmed that I'd receive a package with instructions, which would include a means of registering so that I could additionally pose the questions to Dr. Shen that I hoped to have answered ahead of time. A few weeks passed no package. So I call back in, find that my profile was missing some information and that they'd send me out the paperwork. Two more weeks passed (now two weeks away) I call today...guess what my address was misspelled, so they're sending the paperwork out again. This experience doesn't instill a lot of confidence so far.

I've had some issues with scheduling at CC as well, but do not let that dissuade you from seeing Dr. Shen! When you make the appointment, I would advise letting them know you're having jpouch problems, that you want a scope as well as an appointment to see Dr. Shen. The scope will be done in the am., the appt. in the pm. Ask for same day - it'll be a long day, you'll want to spend the night, and may need to for any additional testing. Plan on spending quite a bit of time waiting before each appointment. Everything runs late - very late, at times. Totally worth it, though.

I just got back from there, and have learned SO much from Dr. Shen. I'll be posting an informational discussion when I have time to get it up there.

Best wishes.

I've got a pouchoscopy scheduled for 9:30 am on the 26th of this month followed by a consult in the afternoon. I gave myself the 27th for any additional tests but plan on flying out that day. My hope now is that Dr. She just confirms the chronic pouchitis which I can fix by going to a permanent ostomy. Right now my pouchitis has flared and I can hardly eat without pain and discomfort. Hopefully I'm still flaring when I go in for the scope.

Another "helpful hint" - take a small recorder and record your consult (after asking his permission, of course). He had no problem with recording it - he said there are quite a few patients who do that.

He has a lot to share, will answer ANY question you have for him, and it's just too difficult to read the questions you should have prepared, write and/or remember his answers, and think about follow-up questions.

yes.. make sure you have a list of questions and make sure you actually review and go over your list with him when he is done speaking. He is very thorough and he will take all the time you need with him. As Nancy said.. he will be very late for your afternoon appt, but you shouldn't care.. because he is the best and he will stay as long as he needs to talk to you. Also.. yes good idea to have the next day blocked out. I thought they were excellent at getting tests orchestrated together for people coming in from out of town. If you are considering a perm ostomy, I imagine he will want you to meet with a surgeon. Don't know if there is a way you can get that lined up in advance so you can take care of it all when you are there.

Thanks everyone for your responses....I'm not considering surgery, just want imput on treatment for my chronic pouchitis...my Jpouch is 20 years old next year and I've had chronic pouchitis for the past 15....just thought I would get another opinion...debbie

i live about 10 minutes from the Clinic and Dr.Shen is my doc. All the docs there are the best, but the administration there is a freaking joke. They are horrible. Between all my medical bills and my families, our billing is always messed up. They always figure out a way to send us to their "collections dept.", and after my wife spending hours going through all of our invoices and payments, always find out it was already paid !! they just say oh sorry. they never fail to disappoint.

Would sending my records there for a remote consult be as effective?