Interesting day yesterday. Overall, while I don't like the situation, I think my doctors are handling it very, very well.
Dr. A is pretty concerned with a few things:
1. He has never actually seen pouchitis in someone before the second surgery (therefore he's consulting with other specialists, and referring me to my GI, who said, "Tell her she's not supposed to have pouchitis before takedown!" [the second surgery]).
2. I am not responding to the first line treatments for pouchitis - Cipro, other antibiotics, and steroid treatments.
3. I am having systemic symptoms, like joint pain and swelling, fevers and weight loss - indicating that my whole immune system is goin' crazy all over my body.
4. The whole dizzy/almost passing out thing and the steroid tapering problem leads him to believe that my adrenal glands have shut down.
The conclusion was Dr. A, his PA, and my GI Dr all discussing the situation together, which is a very, very good thing. And a very rare thing. Three medical professionals collaborating?? Excellent. The plan is:
1. Continue the localized steroids
2. Start a new, harder-core antibiotic
3. Labs to check on inflammation levels
4. See an endocrinologist to figure out what's going on with the adrenal gland stuff
5. Follow up with GI Dr in two weeks
I should see improvement within 2-3 days of starting the new antibiotic. If it doesn't work... Dr A said, "Well, then we need to pull out the big gun medications." By that, he means immunosuppressants and the next-generation of Remicade type treatments (biologic therapy). Then proceeded to leave the room for five minutes.
I'm sitting there, staring at the white walls, just thinking, "This is exactly what GI Dr warned me about. That he had this gut feeling that we were gonna do this surgery, but I wasn't gonna get better." But! That's something I do not have to face today (and hopefully I'll never have to face), so we're not gonna dwell on that possibility. "Do not worry about tomorrow..." C'mon, little Twitchy! C'mon meds! Let's get this all figured out! The best things about yesterday were that we looked at my CT scan together. There is NO evidence of Crohn's disease. None. Zero. Also, Dr. A does not want to do surgery of any kind until we get the systemic inflammation under control. And, to me, those are both fantastic, wonderful, positive pieces of news.
I'm at peace with the situation, and that's totally from God. While it's never fun when your doctor looks you in the eye and says, "You're real sick. This should not be happening, and I have no clue why it is," it was very encouraging that the doctors have a plan and are working together on this. And even more encouraging to know that no matter, what, God is still good and I'm still His child!