Posted 12/6/2014 2:10 AM (GMT 0)
I was dx'd in 2006 by GI #2 (after GI #1 did a EGD/Colonoscopy and found gastroparesis but couldn't explain my 21 bms each day). First I had positive identification from the pill-cam suggesting early Crohn's in my jejunum. We then did Prometheus IBD First-Step which came back with 86% PPV suggestive of Crohn's (elevated IgG). Then came the next colonoscopy (3 months after the first which was clear) that showed linear ulcerations throughout the ascending colon, along with biopsies with "mild, patchy, active colitis". At that time, and since, all blood and stool work were totally normal.
I am currently on Imuran, Humira (weekly), and Entocort and have been for the last 2 years. For the last 6 months I have had 5-12 bms daily, moderate abdominal pain, rectal bleeding, fevers, and joint pain. Along with wonky rashes.
My current GI (#3), who I have been with for 7 years and who I have a very good relationship with (though he has ADHD and isn't very thorough), ordered another pill-cam last month. The results are in and it showed erosion in the small intestine but he doesn't think that is causing my symptoms. He has ordered for me to retake the IBD First-Step as he now questions if I truly have Crohn's. I am devastated. Has anyone else had to re-take a positive IBD panel? Any advice or insight would be a great comfort.
Best,
M.