Hi all. I have been lurking for a while on your board. I have learned a lot and you are all amazing to have been through what you have.
I have been diagnosed with Lupus and mild Crohns. I have had a hard time with treatment for either of these conditions because of my body's intolerance for most types of medications. I am allergic to to all Sulfa drugs and have experienced severe reactions to plaquenil, Imuran, and methotrexate. My ANA titer sits at 1:1280 currently, so needless to say Im pretty miserable.
Heres my question: I have finally, after three years, made the connection between the condition of my colon and the way I feel. Last weekend, I ate raw honey at my mothers house. Within three hours, I was in a full blown flare. Spinal swelling, top to bottom, stiffness and horrible diarrhea. Anytime I try something like green tea, lots of fiber, my body goes into fits and I am nauseated, dizzy and weak for days with diarrhea. Does this sound more like the Crohns or the Lupus?
I dont like my gastroenterologist. He is a complete jerk. He doesnt listen, he thinks his way is best, and doesnt believe me when I tell him that the sulfa drugs caused my heart to have arrythmia, and my skin to blister. I even showed him the paperwork from the ER telling me not to take those meds again. Obviously I need a new gastro... but if I find a new one, will I need to go through all the testing again? I certainly dont want to have another colonoscopy!
Also, what do you eat to keep your colon settled down? I love fresh foods, salads, etc... those just seem to aggravate me. And forget about spicy. All the foods I love make me so sick. I experienced pancreatitis in 05, and so I also have to stay away from greasy foods. Im down to mashed potatoes and pasta.
I am a mother of four (three teenagers, and an an 11 year old), I work full time in the IT field, but its getting EXTREMELY hard to press on and keep up! There are mornings I literally have to pray myself out of the bed from the fatigue and muscle pain.
Do any of you get these extraintestinal symptoms of Crohns, even when its considered mild?
And... has anyone tried LDN? (Naldextrone.)
Thank you SO much!!
Mother of four, full time Systems Analyst
Crohns, Lupus (SLE) Jan 08, Pancreatitis Dec. 2005
Meds: Medrol injections, Cellcept, Vicodin, Benadryl, Zyrtec
Post Edited (Victoria72) : 3/21/2008 1:06:15 PM (GMT-6)