Saturday, March 28, 2009

Crohn's Update

On Tuesday afternoon I went to downtown Philly to meet with my second-opinion GI. For the sake of brevity, this is the upshot:

He, unlike some of the other docs, is not convinced my pain isn't related to the abscess that got me hospitalized in the fall. My last CT scan was done in January, and at the time the abscess was a tiny little mass that had almost resolved itself...but not quite. He is glad I'm getting a colonoscopy next week; this will determine if my disease is still just in the terminal ileum (small intestine just before it connects to the colon), or if it has spread (which may explain some of my recent "constipation-like" symptoms). He said he hates to radiate me again, but he thinks I need one last CT scan, too, to determine the state of the abscess. At this point, I feel if Crohn's isn't my downfall, cancer surely will be, as this is at least my sixth CT scan! On a more immediate note, I'm not keen on drinking even more barium for the CT scan. It would not be hyperbolic to say I've chugged gallons of the stuff in the last six months.

Here is his assessment, based on the colonoscopy and ct scan (both I will be getting in the next week or so):

1) If the disease has not spread and is still just in the terminal ileum, and the abscess has not resolved itself, he thinks I should have surgery.
2) If the disease has spread to the colon, surgery isn't as clear an answer because of the amount of bowel that would have to be removed. He would suggest an immuno-suppressor drug first, even though I would like to get pregnant at some point. He recommended one that "theoretically" doesn't cross the placenta (I just love the theoretically part).

Then there are other scenarios (like if the abscess is gone, but the disease has not spread), and frankly, without looking at his notes, I sort of forget. The upshot is there is no upshot. Everything is still up in the air.

All I know is that it's 2 am and I'm awake because I'm in discomfort. I'm trying to relax, as I know a stressed body isn't a healing body. But it's not easy when your body jerks you back to reality in the middle of the night.

1 comment:

  1. Oh wow. Having so many frightening options hovering over you, and the uncertainty is such a hard thing to go through. I hope you're staying positive and remembering all the good things in your life too! My heart goes out to you for all this crazy stressful 'crap' you're facing. Good luck! *hug*