I called urology yesterday, since I've been having a LOT of pain down there at times and I'm not sure how to best manage it. After a lot of phone tag, the frustrating answer was (and I quote): "Keep doing what you're doing. If it gets worse, go to the ER." Since I have so much going on, they don't wanna touch me with a ten foot pole - my history of autoimmune stuff, recent surgery, the mass, being on steroids, having pouchitis scares them. "We can't just treat your pain without knowing what's causing it." I understand, so I suggested that I could come see them. Unfortunately, there are NO available appointments with any providers for weeks. I asked what they would do in the ER. She said, "Give you pain meds and do a CT scan." I reminded her that we JUST did a CT scan, which led to no answers, so the ER would also basically be treating my pain without knowing what's causing it. I can't move my appointment (which is for more testing and evaluation) any sooner, so I can't find out what's causing the pain. In the meantime, I'm sort of stuck. It's frustrating because, yes, I'm complicated, but my TCU Dr passed me off to the Infectious Disease Dr, who passed me off to my GI, who passed me off to you people at urology who can help me... if I can wait til the 28th.
Sorry for the rant. ;) I am really doing okay - the pain is fine with the current med plan during the day, but gets worse in the evening and at night. But I'm not ER sick by any means, and I dealt with much worse pain on a daily basis for the last year or so. It's just a "new" pain, I didn't know if it's a bad thing, and my post-surgery belief is that I shouldn't have to live in pain. I just wanted to know if I could do anything differently to help me towards that goal. My other belief is that I really shouldn't have to take pain meds to live pain free... but one goal at a time... ;)
My parents really are pushing for me to get an internist or something - someone who would sort of oversee everything - but I have no confidence that adding ANOTHER doctor into the mix would be helpful. And I am firmly hoping that ALL this stuff will resolve. Also, TCU Dr plays the role of overseeing pretty well for me. He's taken care of me for four and a half years, so he knows my baseline - what's "normal" for me and what's not. And he helps me navigate my care and has definitely done a lot to increase my quality of life since I got diagnosed with UC. While he doesn't always know the answers, he knows what questions I should be asking my doctors.
I've also been very shaky and feeling weak, tired, and had no appetite for the last few days, on top of the pain and recurring migraine, so I decided enough was enough and visited the TCU Dr. He agreed that going to the ER was stupid advice, and gave me several different things to try for the pain. My vitals looked good -I was worried my blood pressure might be dropping, so that was a relief - but we decided I need to stay at my current dosage of steroids until I stop shaking, etc.