Hi, I was finally diagnosed with crohn's disease 14 years ago, after being diagnosed with an ulcer, bleeding ulcer, colitis, ulcertive colitis, and who knows what else. The first time a doctor asked me about my rectal bleeding, he asked me if there'd been any "trauma to the area." LOL! good times. I've been on sulphasaliazine, asacol, colazal, predisone, cort foams, remicaide and now cimzia.
I've managed to be relatively stable on 6mp and Lilada for several years. My last really severe flare up was about four years ago. I've been having a severe flare up since the night of this years Oscars (end of Feb). I was living on yogurt and potatoes and lost about 12 pounds.
My doctor's very attentive, but just gives me what he has in his "tool box" which is meds and more meds. I've been seeing a homeopath for about five years, and try to balance my meds with remedies and eating well (even though, truth be told, I haven't been eating very good this last year...lots of bread and lots of sugar). I have tried going gluten free and I think I felt better, but I LOVE BREAD, making that a little difficult to stick with.
Anyway, my doctor's been threatening to put me in the hospital (as if he can put me there against my will). I told him i refuse to take steroids any more, and I don't want immune suppressants. I took remicaide a few years ago, I seem to remmeber it working okay, but I'm 38, and want to start planning a family...I want to get off these drugs all together.
I finally relented and let him give me cimzia, he said that the molecules are too big to pass through the placenta (when I actually GET ONE- LOL). I've had two rounds of shots, starting 4 weeks ago, and don't feel any better. I feel worse. I told him that my stool was forming better and there was about the same amount of blood as when I started taking it. My hemoglobin is 8.2 (instead of the 12 or 13 it's supposed to be), I'm EXHAUSTED, and have a serious cold now. He tells me this immune suppressant does not affect my whole immune system. What a joke. It's a SYSTEM...of course the whole damn thing is affected. I've lost my voice and can barely breathe through my nose. I've had it.
Someone told me to stop avoiding groups and get online to see if I can find some support...so here I am. I just read a post about night sweats. I have TERRIBLE night sweats! my homeopath says it's a sign of a compromised immune system. I also read a post about all the contortions people go through in the bathroom. I KNOW! I've been single through most of my flares...so I just sort of sequestered myself in the bathroom and at home until I was feeling better. But a year and a half ago, I met an amazing man, and we've lived together for the past year. Goodbye to privacy. He's great, but it's SO HARD to have someone around when you've got disgusting smelling gas, terrible sounding poop. Sometimes I'm in so much pain, that I can't help but make groaning noises, or huffing and puffing in the bathroom. He's great, either ignoring it, or just saying "oh babe" when I get out. But it's hard. Anyway. I want to get off these meds. I try natural stuff like aloe juice and ground flax seeds (instead of store bought fiber) and homeopathic remedies and other natural stuff, but I'm tired. exhausted. I hate steroids and won't take them. these immune suppressants are really taking a toll on me, and I want to have a baby next year. help. I need some advice, some support, some recommendations. I'm really spent. You guys seem pretty knowlegable, and so am I, but I'm sort of lost right now.
