Hi there. I'm a newbie. I was diagnosed last year (9/09) with Crohns and Ulcerative Colitis, although at present the most serious area of concern is of the distel to the terminal ileum. I have two fistulas in that region.
I have been encouraged by some to get involved with a forum. I've already had some of my questions answered by just listening. Thanks to all of you for sharing your stories. My heart is truly with you!
Currently I'm taking Cimzia. I started with two injections, 400 mg, each at 2 wk intervals (0, 2, 4, and 6 weeks). Now I'm on maintenance injections that I give myself at home every 4 weeks. Cimzia is working quite well for me, but I'm clearly not in remission. At about 3 wks of having the injections, symptoms return-diarehea, intense abdominal pain, etc. These symptoms return for me even on a controlled diet absent of greasy or spicy foods which are the ones that seem to impact me the most. Although, I have not experienced any of the joint pain or flu like symptoms some of you have mentioned. In fact, during the first few weeks, I feel pretty great! I'm able to exercise and eat well with pretty normal bowel movements (a miracle in itself-right?).
Need some advice:
I'm thinking of switching doctors, or working in conjunction with other doctors. I have had anemia since last sept. I take iron supplements twice daily, but HGB is steadily falling from 9.7 down to 9.0 on my current lab work done 3/5 and has been as low as 7 back in Sept/09. My doctor doesn't seem that concerned about this. I don't want to "just get by" I want my body to function as best as possible. Obviously, I'm tired a lot because of having low HGB. Normally, this number for women should be around 13 optimally, at the very least 11. Do you think I should get involved with a hemaologist? The only thing my GI doctor says, well keep taking your supplements. That is not enough for me.
Also, I'm frequently very cold with shivers that always turns into a fever. When I start getting cold, I take Tylenol or Aspirin and it takes care of it in about 30 minutes, them I'm fine. But, I have to do that 2 or three times a day and I wake up at about 3AM EVERY night freezing! If I don't take anything, I shiver to the point where my whole body is shaking. My TSH is 1.226 and that is good, so it's not my Thyroid. I've read anemia can cause a person to feel cold. Has anyone else experienced this. I shouldn't have a fever everyday should I even if I have Crohns, right? My doctor doesn't seem concerned, but I'm concerned. I need some suggestions.
Post Edited By Moderator (Nanners) : 3/9/2010 2:45:09 PM (GMT-7)