Monday, November 22, 2010

Thanksgiving week

I'll tell you right at the beginning:  this is another rant about Crohn's Disease, so if you're uninterested you can stop right here.

As of 1:46 PM today, I am declaring the latest attempt at treating my Crohn's to be officially over.  I am referring to my taking a course of low-dose Naltrexone.  It's supposed to be The Next Big Thing in treatment; studies show it knocks something like 85% of Crohn's sufferers into remission after just a week on the drug; blah blah blah.  It doesn't work, at least not for me.  You would think that after all these decades I would learn not to get my hopes up any more.  Yet here we are again.

I'm just disgusted.  I'm disgusted with myself for allowing hope back into my life.  I need to learn to be more pessimistic, at least where this disease is concerned.  Better to be pleasantly surprised in the future than bitterly disappointed again.  I'm sick of taking THIRTY-SIX PILLS EVERY DAY OF MY LIFE.  I'm sick of never being able to go out unless I know exactly where the bathroom is.  I'm sick of having to bring a change of clothes to the grocery store "just in case."  I'm sick of wearing diapers to travel.  I'm just sick of this effing disease, period.  Over the years I have tried sulfasalazine, probanthine, methotrexate, enbrel, remicade, prednisone, kineret, cellcept, flagyl, and a host of other medications.  Nothing has worked.  My immune system remains "convinced" that my GI tract is some kind of invader and stays on the attack in spite of every bloody thing I try.  I have had so much surgery that to remove any more of my small bowel would slowly kill me of malnutrition.  I have none left to spare.  I can no longer feel my hands and feet because of negative reactions to remicade infusions; the drug has given me essentially ALS of the sensory nerves in my extremities.  I am thankful that my motor nerves remain unaffected.

And this Thanksgiving week I want to say that I am profoundly grateful for my family.  If not for my wife and my daughter, this would probably not be a rant.  It would be a farewell.

1 comment:

  1. I am very sorry that you have to live with all of this, Tom. And as your friend, I have to say that I am profoundly grateful for your family, too.

    I recommend a viewing of Monty Python's The Meaning of Life ASAP. And possibly Blazing Saddles. It might not help. But it couldn't hoit.