I have never joined a forum before but find myself needing to know I am not alone. I have a huge support system of family and friends and as much as I know they worry and hurt for me I need to talk with people that have been there. I also hate to talk with them about
how I truly feel because I know they worry so much and I am afraid I will make them sick.
I have always been very healthy but June of 2007 I had an ischemic colitis attack and another one in December of 2007. During my hospital stay in December, they also diagnosed me with ulcerative colitis as well as intussception. Since this time I have had intermitent bouts of bloody diarrhea w/mucos, severe abd pain, incontenence, nausea, vomiting, etc. I have had numerous tests (I consider myself one of the colonoscopy queens of America. Statistically, I shouldn't have anymore for the rest of my life), other scopes, blood tests, CT scans, MRI's, MRA's, Pill Cam (which got stuck for 6 days) , Sitz marker study (all 24 markers were still in me on day 7), EMG, you name if I think I have done most tests and still no one can help me. I have gone through numerous drs because they either thought my illness was all in my head or as one Dr. at Cleveland Clinic told me that, "Drs don't always know everything and this is one of those times". The dr (colon rectal surgeon) I have been working with since September has diagnosed me with a stricture but isn't sure what to do..sent me to another surgeon for a 2nd opinion and he didn't look at my file (said he would look at it later) but he said he didn't think it was a stricture and wanted to take my testing in a different direction. My fear with this is that I am concerned the paste from the defecogram will get stuck just like the pill cam did.
I have made the decision to go out of state to the Mayo Clinic. Has anyone done this before? Were you happy and felt you were really listened to? Have you experienced Dr's telling you it was all in your mind even though you had tangible tests stating otherwise?
Sometimes I feel like I am crazy, that maybe I really don't feel as bad as I do. But then I snap out of it and get strong again.
For the most part I keep my spirits up and believe this will all work out but there are other times I feel like it would be so easy to fall into a deep depression and give up. Very scarey...but it is just not me. I truly am a happy person and have a blessed life.
I thank each of you already for your support and please know that I am here for you as well!