Pain and dehydration, and repeat ER visits landed me inpatient for 5 days just prior to Christmas. The Christmas eve discharge left me with a new cocktail of medications now including Cymbalta, Zofran, Prednison (no taper - nice steady dose of 40 mg), Ativan, Purnethol (6MP), Nopramin, Humira, Hydromorphone and Oxycodone, and steroidal suppositories.
I saw my GP/ PCP last week and he (for not the first time) suggested a referral down to Boston. It has been the 5th hospitalization in 3 years. Back and forth to the ER for dehydration refills, with no true respite from continuing pain. The referral to Boston would be to a larger teaching hospital to have my case evaluated by a new set of eyes and determined if this is the most appropriate cocktail for me.
I will need to start tapering the steroids soon, and that is always when internal bleeding begins again (not that it has truly stopped at this point). So as we wean this, we increase that. I've been doing this hokey pokey for three years now, and I'm all shook out. I see my GI this Thursday to discuss referrals and a'Boston I will go.
Even though the daily battles continue, (BMs numbering between 4 and 20, with mucus, blood and pain, fatigue, and satanic moods -thanks steroids!!!) - I know these will subside as soon as the 6MP fully kicks in around the 6 month mark. But will it continue to work? It hasn't in the past. The hope for an evaluation in Boston is a knowledge of a better cocktail that will sustain the equilibrium for longer than two or three months at a time. If I could have that, then I could conquer the world, Pinky!!!! Or you know, stay employed and maybe finish college.
Now. . . where to fit that life part in again?
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