Why has it taken me 14 yrs to make this possible link?
diagnosed in dec 1997 w/ gallbladder disease..had it lap. removed…27 yrs old
diagnosed in dec 1998 w/ UC (figured I could just take this cute little medrol pack every time I had “blood & mud”)
since then, diagnosed w/ gastritis, gingivitis,…hey, what’s with all the “itis’s”..what do you mean my body is attacking itself?
2005 uncontrollable flare..quit eating…spent 4 days in the hospital because the cute little medrol pack quit working. IV steroids were awesome. I didn’t mind prednisone and had very few of the bad side effects most people have. (although i know it is wreaking havoc on my body internally)
So I taper off the pred, continue with the asacol and resume my regular life. 8 mo. later I feel great, so why do I still need to take asacol, right? So, I decide to take the asacol when I “feel” like it, and not as prescribed.
2007 spent 4 days in the hospital again. i can’t control the flares once they start and i knew the IV would work. And it did. Once again, I effectively taper off the pred, resume my normal life and feel good enough to roll the dice on the asacol.
I am clearly not very bright. Actually, looking back, I would say I was in denial. Who the hell wants to admit to having such a God-awful disease not only to themselves, but anyone else? So, if I ignore it..it will go away, right?
April 2010… feeling another flare coming, but am going away on vacation…will deal with it when I come back because I know I have another few weeks before it’s full-blown. I’ll just take the Asacol to keep it at bay (that was futile, by the way).
June 2010..knew i had to go to the hospital again..can’t control the flare and oral pred is not working. need the IV. This time I am not so lucky. I spend 8 days in the hospital and here we are 8 months later and the drugs that worked before are not working anymore. I can’t get lower than 30 mg pred. I started the SCD Diet last month and at first thought it was my saving grace, but realized as soon as I started to taper and the “mud & blood” returned, the diet was irrelevant. I am still on it because I actually love it. I don’t care that it is strict..I feel great on it.
I am doing blood work to see if I am a candidate for Azathioprine. I have done my homework on the drugs and figured this would be better than jumping straight to Remicade. If anyone has feedback..pro’s/con’s on that..please share.
Okay..so WHY is my body attacking itself? I had 8 days in the hospital with my laptop and I did some interesting research. After reviewing the time-line, there was something that I omitted. In October 1997, I made the STUPID decision to have saline breast implants. The casings for all breast implants are silicone. Not sure if this matters or not, but could my body be reacting to a foreign invader? (Or “two”?). After finding out how many women now have RA, Lupus, and all other types of auto-immune diseases after implants, I have to wonder. UC is an auto-immune disease as well so where does that fit in? I have an appt with my surgeon to have them removed after 14 yrs. either way. Has anyone else made this connection?
1600 mg asacol 3x/day
35 mg pred 1x/day
soon to start Azathioprine or Remicade
written by Betty