Posted 10/29/2007 3:21 PM (GMT 0)
Hi all, I am new here, but not at all new to crohn's. I was diagnosed on my birthday 7 years ago, and am having my second illeosecal resection in 2 years next month. I also tested positive for having the HLA b27 gene linked to Ankylosing Spondyllitis. Anywho, I have tried all the medicines but remicade. (prednisone,asacol,entocort,imuran...yadayada) for the second time since Cd diagnosis, my weight dropped below 80lbs this summer. I have been able thru many many large mcdonald milk shakes to get my weight up to between 85 and 90lbs depending on how much water i am retaining due to chronic dehydration and malnutirion. I had to get my weight up to have this surgery because as my weight dipps below 85 (apparently for me some magic number) my blood pressure falls to like 6o something over 40- my last endoscopy and colonoscopy I wasn't able to be sedated at all- that was fun- but basically, i am truely scared of the major side effects w/ cade, and I am not sure I am finding all the "negative stuff" I am worried about, and want to make the best educated decision that I can. One of my many gasto's over the years will not even perscribe the stuff anymore. My rheumy has had cancerous tumors, lymphoma, and crazy stuff w/ some of his other pts-and hates the med now. My liver enzymes, creatinine and serum porteins are all out of whack- help help- tell me your stories! plus my husband's father and aunt both died of lupus- so the "lupus like/diagnosed lupus" stuff is terrifying him and I!