I want to thank everyone for all the amazing comments, and support on my last blog post. I was really upset from the doctor, and reaching out made all the difference.
Here is an update -
Something I did not share in the last blog was I agreed to have a CT Entography scan done on Tuesday Jan 12th 2010. I didn't share it, cause really didn't want to get my hopes up ....I am glad I didn't. I agreed to the CT cause of the information the doctor told me. I have had so many issues keeping contrast down in the past - and the scans have always been hard to read.
The GI on Thursday explained this to me about a CT Entogrpahy (something I had never heard of before).
"This is a new scan, something over the last 2 years. This scan there is NO oral contrast, it is all done IV over 1 hour." I was very excited over the prospect of getting a clear picture of the feet of small bowel that can be clearly scene otherwise (outside of the pill cam which she refused). I show up for the scan, and the nurse says "I'll be right back with the contrast". I stopped her, thinking she was wrong, and she proceeded to explain what a CT Entrogrpahy REALLY is - it involves drinking THREE bottles of oral contrast each one had to have been consumed WITHIN 15 minutes (I can't even drink an 8oz glass of water in 15mins). The nurse then proceeded to explain how a CT Entrography is WORSE then a CT scan contrast wise. I thanked the nurse for explaining the procedure, and canceled it.
My father came back to pick me up, and explained to him all of what happened, and he confirmed that the description the GI doc gave on Thursday was what I heard - wanted to make sure I didn't misunderstand anything.
I called my counselor immediately, as I was very frustrated. She called me back later in the day and had a wonderful conversation - not only did she 100% agree that what is happening is in NO WAY psychological, and that I should never return to that GI again. Amazingly she also referred me to the GI she uses through the University of Cincinnati, and she would be more then happy to speak with him confirming that this is physical, and not mental - SUCH A RELIEF!!!!!!! I called and made an appointment, and see him on Feb 8th, 2010 the earliest appointment he had (this is kinda a good sign I think as this is my mothers birthday - she passed in 2001) something my father also agreed on.
It is so nice to know I have incredible support locally, and an option of seeing a new GI. The prospect of traveling up to the Mayo Clinic, or check out Cleveland Clinic was somewhat overwhelming. Thanks again everyone for all the incredible comments, and sharing your history of the same experiences. It meant so much to know that I was not alone, and others (unfortunately) have dealt with this. Hopefully through CDSN we can change this, so patients in the future never have to experience such ordeals!!!
