I'm so sorry I haven't posted in over a week. I had posted last week about
difficulty working and feeling horrible with fatigue, muscle aches, headaches, etc. First off, I can't thank you enough for all of your replies. You are all like family to me. So, an update......
As far as work goes, I took a two week leave and return Monday. I tried to rest as much as possible, in between getting every test known to man! My GI checked blood work for Imuran since I had the increase from 25mg to 50mg. He said everything is perfect. He ordered a cat-scan with oral/IV contrast which showed inflammation. He did a small bowel follow through which he said was "ok." Yesterday I had the wonderful opportunity of having a Colo, the necessary evil! He said that even though I still have active Crohn's, I have healed nicely since the last Colo 1 1/2 years ago. Soooo, he wants to continue the Remicade 10mg/kg every 4 weeks instead of jumping to Humira quite yet. One of the problems he found (something new) was a stricture in the sigmoid colon. He said this is what could be causing frequency, urgency, and pencil-thin stools. He ordered Hydrocortisone enemas for 6 weeks, hoping it will reach up "that far." I have to do 2 a day for 2 weeks, 1 a day for 2 weeks, then 1 every other day for 2 weeks. He also suggested seeing my Primary doctor because of the fatigue, nausea, muscle aches, etc. He was thinking Fibro or CFS.
Soooo, I go to my primary, he orders all bloodwork under the sun, and everything comes back NORMAL. He also told me he doesn't really "believe" in Fibro and CFS!!!..... He also said that to remedy these, diet and exercise, both of which I am bad with. I got a big old spanking about my weight (I'm a heavy Crohnie, 5 foot 5, 212 pounds. Was 175 before the Pred.) I can't say I agreed with him about the Fibro/CFS. I was sort of put off and made to feel crazy. He said my symptoms are more of a clinical depression, which he says can make you feel physically ill. I know I've been through a lot this year with my husband leaving me, going through a divorce, supporting myself, Crohn's, etc., but I feel he is wrong and he is missing something clinically.
Anyway, I guess I feel a little better, especially the Colo results. A little concerned about the stricture..... And, as far as my physical symptoms, I'm either going crazy, or they are real and I'm not getting any help. I'm glad to go back to work Monday. Physically I don't feel ready, but mentally I am going stir crazy, and your mind can be mean to you.
Again, if you read this far, thanks, and thank you all for the wonderful support you give. Love, Julie
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12.5mg a day
Imuran just increased to 50mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)