Crossing My T’s

My wife and I met today with another gastroenterologist for yet another opinion regarding my disease and surgery decision. We talked at length about my history, reviewed my most recent colonoscopy (ugly), and discussed the treatments I’ve tried (and failed) and what I’ve not yet tried. In the end, she agreed with the conclusions of every doctor I’ve seen: I’ve given it a good go, but if I want to get on with my life, surgery is the only real option.

  • She confirmed that there are no drug trials that she could get me on in the near-term (i.e., within a year).
  • She shot-down low-dose naltrexone as unproven for UC (and largely unproven for Crohn’s) and said she would not prescribe it.
  • She agreed that, although trying Humira would not be crazy, given my clear Remicade failure at extremely high doses, the likelihood of it working at all is low (<20%) and for any extended period of time extremely low. She thinks trying Humira (assuming insurance approved it) would at best delay the inevitable.  Almost verbatim what my regular GI advised me.
  • She mentioned the “worms” treatment that’s been getting some traction, but was skeptical of its legitimacy. And I’m not interested in chasing unicorns.
  • She reminded me that I’m technically failing prednisone (i.e., I’m still not in complete remission). People who respond only to steroids generally require surgery; people who don’t even respond to steroids nearly always do.
  • She told me that the vast majority of her patients who have the surgery come out much better for it, wishing they had done so earlier.
  • She reminded me that it’s fairly miraculous that we can remove an unnecessary (albeit convenient) organ and cure a debilitating autoimmune disorder.
  • She set my mind at ease (or at least as at ease as it ever gets)
I still cry about it sometimes. But I’m now 100% comfortable I’ve exhausted my options and done my due diligence. I’m ready for surgery.
This entry was posted in Prednisone, Remicade and tagged , , , . Bookmark the permalink.

2 Responses to Crossing My T’s

  1. Troy Kummer says:

    wow ben your naked emotional honesty inspires me! i have long wanted to blog about having multiple sclerosis and just havent, for myriad reasons the biggest being cowardice. your strength to show your weakness is truly awe inspiring. thank you for sharing my friend

  2. Pingback: Breathe In, Breathe Out | Know Guts

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