oh, pred, why do you taunt me?? i've been taking it now for 2 weeks, but fake-remission hasn't returned. biopsies and samples came back negative for everything, but apparently the test for c.diff misses it like 30% of the time, so Dr. G wanted to do another round of Flagyl.... noooooo! luckily, i remembered how horrid that was back in June, and asked if there might be anything else i could take instead. so he gave me vancocin instead. it is much much much more expensive than flagyl, but without the painful side effects and severe interaction with booze. which is good, because i got tailgating to do this weekend, woot woot!
so between the 40 mgs of pred and the vancocin, i've been fairly nauseous. the vancocin made the d soooo much worse for the past few days, and the bleeding still has not stopped. i spent 15 minutes in the grocery store trying to figure out what kind of protective undergarment would be best to wear to the stadium on sunday just in case i can't get to the ladies room in time. i left work sick on tuesday and cancelled on my thanksgiving plans for thursday, i'm hoping i can salvage at least some of this weekend. i slept most of the day yesterday, which was nice, but today at work, i was still going like almost once an hour. i'm supposed to go to the family tomorrow, and i'm hoping i can make it, but i'm afraid i won't even last the car ride without having to stop to go. and it's just so much easier staying in my house. i'm so anxious about embarrassing myself or being smelly or puking. at least home, no one else has to see me like this.
my doc thinks i have a superinfection, because my flex sig showed pretty severe inflammation, even after all the remi, humira, and pred i've been taking all summer long. so my theory is my D got worse because all those little bacteria were getting killed off by the vancocin and dumping all their gnarly toxins at once.
Dr. G also felt that end of february was too long to wait to see the specialist, but though he tried to get me in earlier, Dr. L has nothing available sooner. I am on the waiting list though in case someone does cancel. Dr. K could see me sooner, but does not take my insurance, or any insurance for that matter, and my insurance can't give me a reasonable estimate of what they will and won't cover. So i'm going to my last choice, Dr. D on the 8th. I'm still going to wait and see Dr. L, but maybe Dr. D can suggest something since he is an IBD specialist. if i like him, great, he's local and takes my insurance. if not, no prob, i keep waiting until next year.
the bummer is that i'm a little freaked out by all this waiting and not getting any better with treatment. i absolutely don't want surgery, but i'm afraid these delays might take that choice away from me. i really like my doc, but i feel like we wasted alot of time. i also feel that my hospital visit in may was a total waste -- although they treated the pancreatitis, they didn't really do anything about the UC while i was there. i feel it was kind of a missed opportunity, but i did learn a valuable lesson -- i will avoid that hospital as much as possible. i'm kinda hoping Dr. D wants to admit me when I see him on the 8th -- my deductibles are already paid for the year, it would be the perfect time to do IV treatments or bowel rest or something. If i end up having to go in January, I'll have to pay everything from scratch again. thank god my FSA will be nice and replenished come jan 1... i only have like $25 in there right now.
i am so grateful to have such great insurance. i'd be totally hosed without it. i've spent probably $3k out of pocket, and hubs pays another few thousand for the premiums, but it's nothing compared to what this stuff actually costs. hopefully next year will be cheaper all around once we figure out how to get this thing under control. it's no fun being sick and broke all the time.
EDIT: i actually haven't been taking pred for 2 weeks, just one. dang, this has been one long annoying freaking week!
Mary's desk
6 days ago
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