Monday, September 5, 2011

Remicade and identity theft

H.K. has finally experienced colonoscopy prep Raga.  Something about not being nauseous or half conscious (as I have been in my previous three) makes a liquid diet and 4 liters of electrolyte concentrate so much more irritating.  I survived only for the promise of a teriyaki chicken burger.  Which was devine.  And for his part, H.K. was utterly delighted when he was handed picture copies of my lower guts.  All of his suffering from the last 36 hours vanished.

As dreadful as the prep was, the results may have been worse. 

At my follow-up appt the next day, it was concluded that my Crohn's -- at least the lower bowel Crohn's -- looked fantastic.  Scars smaller than ever, inflammation gone, no ulcers, no abscesses.  So where is all the pain coming from?  IBS, says Dr. New GI.

Nuh uh.  IBS?  In my 13 years of Crohn's, no one has ever mentioned that some of my pain may be coming from IBS.  I feel almost slighted.  Remicade is doing beautiful work in my lower tummeh, and in doing so stealing my identity as a Crohn.  I don't know how I feel about this.

You're thinking, "you should be cheering, wtf is the problem?", am I right?  And I am.  Yay.  It's like this, though.  When you have a creature inside you for 13 years and you're told that that creature may now either be hibernating or dead, there is a feeling that you've lost a part of yourself.  Not quite like when a Trill's symbiont dies, but similar.  Especially when the loss of your creature doesn't actually change anything about your life(style).

First of all, for those who have been following the journey, it was decided that despite all the side effects of Remicade that I've been accumulating over the last 2 years, we're going to keep me on it.  Because, well, my inflammation is gone and my scars are no big deal atm.  So we're redirecting the energy of the mission into full mobilization against the psoriasis, the dermatitis, the hives, the fatigue, the rotting teeth and the chronic infections.

That said, Dr. New GI has not ruled out any activity in my upper tract.  So we're checking my sedimentation rate and I may be doing the camera pill in the near(ish) future.  Rock on.

Is this it?  Am I still a Crohn if I'm just battling the Remicade?  I had a small identity crisis last night before realizing... if I still feel like shit, and my immune system is still functioning like shit, nothing has really changed, has it?

1 comment:

  1. dude. i totally know what you mean. you got this.