The Best of Intentions

I posted this at a message board that I frequent after much deliberation on how to handle some...advice...that came my way. It's interesting. When you have Crohn's, and you tell people that you have Crohn's, they either look at you like you're from Mars, or they have suggestions/advice/cures to tell you about. They're sure that it'll work for you because they saw it on TV, or it worked for so and so who has Irritable Bowel Syndrome (which is an entirely different animal).

The bottom line? My immune system forgets that my colon is supposed to be there on occassion and starts to attack it; this causes ulcers, inflammation, and in some cases, perforations right through the intestinal wall which allows infectious matter to tunnel its way into other parts of your body. Sounds like a real party, huh?

That's not even the half of it. Wait till you're on prednisone in the middle of all that fun, and you can't sit still, but you can't move, either. Seriously. You feel like you could remodel your house, but you can't get out of bed because you've lost a quarter of your body weight or something like that.

Crohn's has been a real learning experience, but looking back at what I've gone through, I actually wouldn't trade it in for anything. I know beyond a shadow of a doubt that I am lucky enough to be in love with my best friend. I learned a lot of things about how to handle stress without trying to change who I am. I gained a different sense of priorities than most people my age. Really, all these things have made my life today very happy and fulfilling, even though we don't have a lot of stuff. We have what's important, and we know that.

So anyhow...I went on a rant about the pharmaceutical industry, and someone commented that I should see a doctor about trying a gluten free diet to see if that would relieve my symptoms. While I understand that people are compassionate and have the very best of intentions, I've also learned not to coddle other people's notions about what Crohn's is or isn't, especially as it applies to me....

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I really hope that I don't come off as defensive here - that's really not my intent at all. At the same time, I've learned that being diplomatic when discussing Crohn's doesn't do anyone any favors. Here's my experience, for what it's worth....

I approach my Crohn's with what I call a two-pronged defensive. I heartily believe in the importance of nutrition -- a prenatal vitamin was one of the first and only things that helped me during my first flare. Currently, I take multivitamins, calcium, and probiotics. The probiotics are key -- I can pretty much miss anything else without noticing except for that.

However, I don't want to push my luck, either. I've been bad off enough that if science has a way to keep me from going back there, I'll do it. So I indulge in Remicade every eight weeks. I also used to take Imuran, but it was too expensive, and it gave me headaches on occassion. My gastro doc and I decided it was kosher to stop that one.

I also take birth control and celexa (for anxiety).

Over the years, Kerry and I have tracked everything, and it appears that the amount of stress I'm under and how I handle it has more to do with my gut acting grouchy than anything. I've tried different diets, but in the end wound up eating whatever would stay in me the longest. Sometimes that was macaroni and cheese and plain stewed chicken. Sometimes it was sugar cookies. Then, there was the seven weeks I ate nothing at all and got all my nutrition from an IV line. That episode had me fairly close to dead before it was dealt with properly; whether the infection took me out or I did was a fairly moot point there for a while.

A lot of people that I know have gotten results from gluten reduced or gluten free diets. Typically, though, their disease is centered higher in the GI tract than mine (which, for some reason, seems content to chill in my colon when it's active). I also agree that in some cases, Crohn's can be a misdiagnosis, and people are actually dealing with food allergies. Tough experimentation has led me to the conclusion that I am in neither of those categories.

As of now, I've been in remission for about four years. I can eat *almost* anything. Anything with too much fiber and apples are the only things I really go out of my way to avoid. I can be pretty happy like that, since I love to eat. I'm as active as I ever was, high energy, type A personality all the way, perfectionist, detail oriented...I've just had to learn how to approach those things differently rather than try to change who I am. I'm at a healthy weight (yay 136 pounds!), and I've stayed there.

There's so much of the human body and systems that we are only beginning to understand, that it amazes me. Part of the reason that Crohn's can be so easily misdiagnosed is because none of the scoping techniques except for pill cameras (and those are fairly recent and still rare) can see the small intestine at all. We're only beginning to scratch the surface of neural and physiological chemistry. The immune system, DNA, RNA, hormones, vitamins, minerals, enzymes -- are still fairly uncharted territory for all that we think we know about them. That doesn't even begin to account for what we don't know about how the mind can affect the body.

As Paul Simon said, "these are the days of miracle and wonder." It's a fascinating world that we live in and there are whole worlds inside the human body that we know nothing about. Sounds like an adventure to me...