Well, here it is, a week later, and I haven't called him back. After reading his email, I curled up in a little ball, cried, then went back to bed so I could start the day over again on a better foot. ;) While I really appreciate my GI doctor not giving up on me, I don't want to try more meds if they probably aren't going to help! And I'm just trying to decide - the pouchitis really isn't all THAT bad - it's been way worse. It's not driving me nuts. It's only uncomfortable some of the time. I am not bleeding a ton, just a little. So maybe I should just wait. On the other hand, the pouchitis has been slowly getting worse for the last couple weeks. Maybe we should get on top of it now, before it gets really bad again. I've been praying, and I think I want to hold off on starting anything new for now.
In other health news, I am close to giving up on the steroid taper. I've tried to drop down a little bit two days this week. It just makes me feel terrible. Shaky, dizzy, nauseated, dumping, tired, my pain gets worse... I just don't know if it's wise to keep banging my head against a wall - I've been trying to taper off since late October. Seems like I've hit my threshold and can't drop below the dosage I'm at. Every time I do try to drop, my body takes quite a hit. I've gone back up on the steroids for the last few days, yet I continue to dance dangerously close to that line of needing IV fluids. I see the endocrine doctor on Friday, so we'll see if she has any brilliant ideas or anything.
Dr. Pain remains my hero... I hadn't been sleeping great the last several days - the sleeping stuff helps, but I wake up in pain around 4. In addition to the joint pain, I'm having a lot of muscle pain, which he thinks is autoimmune and inflammation related, too, since it gets better the more steroids I take and is worse on days I take less steroids. He asked me, "How 'bout I mix you up a cocktail and shoot you up wherever you're hurting the most?" I told him I am not supposed to accept drinks from men unless I know what's in them... ;) It was a mix of short and long acting lidocaine, steroids, and toradol - he injected it in the muscles between my shoulders where I've been really sore. It's worn off now, but it sure made me feel great! We're also trying a muscle relaxant type med that will hopefully help me sleep better. Guess what? It works!!! Can't tell you how amazingly wonderful that is! Alas, this weather is like death to my joints, but it's summer in Texas, so I'm sure that soon enough, it will be sunny and dry.
I feel like such a whiny hypochondriac right now with soo many issues - my bladder stuff is acting up again lately, in addition to the pouchitis, adrenal stuff, and joint and muscle pain. I'm a mess, haha! Seriously, though, if I were making stuff up, I'd make up less embarrassing problems!