GI tells me now to try to SAVE my colon

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princesscolon
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Date Joined Apr 2006
Total Posts : 733
   Posted 4/11/2008 6:51 AM (GMT -7)   
After years of hearing "the colon has to come out", now my GI is telling me let's try as much as possible to avoid surgery.  He said my Upper GI, SBFT xrays did not show Crohn's, but it is possible to have Crohn's in the rectum only which would be impossible to differentiate from UC.  And my colon is ulcer free, so he said I should try to hang on to it.  He was surprised I am still red from Humira and it was a week ago.  He said my body responds strangely to meds.  No kidding.  So I am continuing the Humira, which so far has been better than Remicade, and I am going to take hydrocortisone enemas to try to help the ulcer heal.  Just thought I'd share. 
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


Old Hat
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Date Joined Feb 2007
Total Posts : 5151
   Posted 4/11/2008 9:26 AM (GMT -7)   
Your location seems to be the problem. If you were near an academic IBD center, such as Mt. Sinai/CUNY in NYC, University of Chicago Medical School, University of California at San Francisco Dept. of Medicine, etc., you could find an IBD specialist to work with you at fine-tuning the meds your condition warrants. It sounds like the gastro you've been consulting is very egocentric, which no doubt impacts on the care/attention he gives to your case. He might also be unsympathetic to female patients. (I found in my early days pursuing treatment for my then still-undiagnosed gastrointestinal troubles that male doctors tended to think "It's all in your head, lady!" They wanted to prescribe Valium for everything.) Maybe your present gastro is a holdover from that era. It sounds to me like you have a spunky personality, you're still very young but have family responsibilities, & any decent, caring physician should be trying his/her best to help you overcome your particular form of IBD! Can your rheumatologist advise on getting a gastro consultation elsewhere-- the doctor who is getting you Humira? / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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