My heart goes out to you. I'm happy to hear from you again. Last year when you were at Rush, I wanted to come visit you, but because you don't know me, I didn't know how you'd react. My GI is at Rush, live a little north, so I'm familiar with the hospital. I think of you, EACH and EVERYDAY!
CI is just an astonishing disorder. It's hard to wrap my brain around it because of your decline. And with a history like yours, doctors seem to treat one episode at a time. Ultimately, this is a systemic disease. What is the question.
If I may compare, I know someone with some of your mysterious symptoms. She had, due to diverticulosis, a resection last year. Prior to surgery, she was having adrenal issues. Post op, her adrenal issues stopped and stumped her endocrinologist. 6 months later, she's having nerve issues, sweats, hypertension. She found a new GI at Loyola, suspected having pheochromocytoma (rare endocrine adrenal tumor), but tests showed nothing. But is still suspected because it's so very hard to detect. My suggestion to her is to go to Texas, they have the best adrenal disease center. She now suffers from more nerve damage, and her kidneys are declining. Not to mention 25-30 bm's a day. And her doctors have dismissed her being a complex case. I'm trying to advocate help.
After your hysterectomy, is your bowel becoming stenotic again? Is this the sign, based on your past surgeries, of recurring adhesions?
If you want to come down here again, Northwestern has fantastic departments. Rheumatology and countless others. Interestingly enough, I came across an article of a doctor there....Dr. Burt, an internist in the division of immunotherapy. He does stem-cell research/transplants. You need brilliant minds on your side! My brain has been on overload lately, excuse me for my out of the box mentality.
I hope you have a promising cardiology appointment today and wishing you nothing but my best!
Post Edited (windy city) : 4/25/2013 12:18:13 PM (GMT-6)