Absolutely yes Vanessa. After suffering miserably in the "care" of my local so-called expert GI for 6months post takedown, I got myself to Dr. Shen. Dr. Shen figured out what was wrong with my pouch almost immediately. But you really must prepare for his visit. You should have your records and tests all sent in advance as well as hand carry them with you. Hopefully you can bring somebody with you. He is a very fast thinker and sometimes is hard to understand. As you have a lot of problems and complicated history, having someone with you to help decipher and process would be advantageous. Also be sure to schedule an extra day(s) there so he has time to scope and do other tests he may deem necessary. And start working on your list of questions. pm me if I can guide you any more in the CC and preparing for your appt. with Dr. Shen.
Thanks! It doesn't seem any different than when I went to MD Anderson. I am waiting for my patient packet to come in the mail since she said I needed my medical ID number to fax everything. I have all my scans on CD and records ready to go over. My GI here is great but nothing shows up in barium bowel tests, scopes, etc. and I have bacteria overgrowth not pouchitis but I don't test for it. I seem to not be getting any better and over it. If I can get to the bottom of my issues, if it is outside my pouch causing things with a combo of internal issues my BCIR would be perfect. I just want this to be resolved or someone to figure out the problem so I can move forward with life. I had surgery not to die from FAP and I am not living it to the fullest lately.
vanessa- Make sure you hand carry copies of everything, including CDs with you. Just in case whatever you fax or mail in is lost. Dr. Shen will probably re-scope you. He finds things on scopes that others just look right by.
There are lots of places to stay within a few miles of CC. Most also have CC rates. I usually just look at best rates through online travel sites. If you are staying downtown - just a few miles from CC- you may have to pay for parking. There are both hotel shuttles and CC shuttles. So you can figure out most cost effective parking, transporations. DO NOT stay at the on campus CC Guest House. It is overpriced and frankly.. a dump. good luck. I hope he will be able to help you and get you to a better quality of life.
As a heads up, some of his procedures are actually rather experimental. They are not harmful (e.g., doxy injections into fistulas), but I would suggest asking him about this prior to making a decision on treatment recommendations. (Experimental? Chances of success? What if they don't work? Options? etc.) Just my experience....
And if possible, try to find a way to get any kind of procedure (e.g. scope) scheduled for the same trip. You may need to get your GI doc or surgeon involved with getting these scheduled.
Take a small recorder and ask his permission to record. He's good with this. He's not easy to understand, and you won't need to take notes and can focus on your discussion.
I stayed at the CC Guest House and agree with liz - it's a pretty ratty. But for us, it served its purpose and was very convenient - a bed, shower, TV, and large, free parking lot all within an easy walking distance to the clinic.
I am scheduled to see Dr. Shen on Aug. 10th... When my GI first called we were told Oct. but Dr. Shen was able to get me in early becuase I am getting worse by the day and probably wouldn't make it until Oct. without a trip to the hospital.... I hope he is as great as everyone says because I fear that the next step is surgery if he cannot figure things out...
I am staying at an Econo lodge outside the city. A friend mentioned it to me. I am so broke as is this trip breaking the bank. By the time I visit I'd have had 5 scioes so I think I'll have that part covered :-)
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