A Writer's Life Interrupted #crohns #uc #ibd #friendships

Today I was reminded of how severe Crohn's disease really is. A friend of mine, who has been in remission for over twenty years, is in the middle of an extreme flare. I saw her today and cannot believe how thin she is. Desperation surrounds her, but because I know her, I know this is not true desperation. It is Prednisone in action. High doses of the stuff.

My friend has lost most of her large and small intestine so surgery isn't an option. This is a beautiful woman--a woman made even more beautiful inside and out by what she's been through. With her make-up on, no one would know of her suffering.  I wonder how many women walk this world in various stages of ill health. 

I am Humira free and have been for about 6-8 weeks now. So far, everything is good. Nothing has changed and my diet is still the limited SCD diet. I haven't had a carb in so long I've forgotten what they taste like. Not that I wouldn't like a chocolate chip cookie, but unsweetened cocoa and honey is an alternative that is an acceptable replacement.

I did experience a flare--a rather nasty one--due to grape juice. For whatever reason my stomach seizes up and boy do I get sick if I sip the stuff. I am losing weight and if it continues I'll need to put something into my diet that will allow me to maintain the status quo. I think I can up my calorie count, but truthfully, my stomach is so bad it doesn't want anymore food.

Don't misunderstand, my stomach is better than it was, and at least I'm eating. That is a good thing. I just don't eat grapes. I am still gun-shy of my doc and am thinking of getting a new one. Waking up twice during an endoscopy is not cool and I still have nightmares that I can't breathe. *shudder* And when I explained to him how sick I was, he just said there was nothing he could give me to make me better.

Now that's a sucky answer. What he should have said was, "Let's see what options you have left." That's a statement I can get behind. There are always options.

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