So… the flare that started Labor Day weekend… about a month ago now is still hanging in there. Still no D, a little softer poo than it was, but there is B and some cramping, a little pain or rather uncomfortableness while “going” and the slight pain in my lower abdomen when I bend my torso. I’ve been using the rowasa enemas, and I think they are keeping me from getting worse, but they are not healing me. I made this appointment about two weeks after my flare started figuring on the fact that if I’m better, then I could cancel, if I’m worse or stayed the same, well, at least I’d have an appointment.
My plan of action is to let the Doctor know that I think that the flare came back because I tapered off of too quickly. That I would like to try to take it again, and this time taper more slowly. (I hate all of the nasty side effects of the drug, but… you gotta heal, right?) If after I am weened off of the pred again, I get another flare the same way, to try again, but this time to do what put me into remission for 5 years, the prednisone taper along with 6 mercaptopurine. Another drug that I wish to not be taking, but if it puts me into remission, then after a while I can try and stop the drugs again, but this time on the SCD as well as not trying to go off the drugs at the most inopportune time (i.e. when I am having surgery that the doctor requires me to take antibiotics for as well as a VERY stressful time in my life—I did not know any of this would happen when I decided to get off the 6MP, how could I have?)
So, that’s an update for me… I will probably be taking again before the week is out. Goodbye nicely fitting clothing… goodbye clear complexion and being able to sleep at night. Hello to thinking of food ALL the time, hello bleached clothing from the acne medicine, hello super clean house thanks to the need to constantly be doing something (that’s actually not really a bad side effect… for one)
I am hoping that my Doctor listens to me and understands that I know my body better than anyone. I would like to follow this course of action. How should I go about stating that this is what I want to do. I don’t want the doctor to push me into something I don’t want to do, but If I don’t listen to the Doctor, they can refuse to treat me, right? I don’t think I’m asking for much, just another try or two before long-term big drugs. Does anyone have any suggestions on how to go about this?