Crohn's Essays: 1

The Basics

Crohn's disease is an inflammatory disease of the digestive tract. Pretty simple, on the outside. It can affect the who shebang from mouth to anus.

If words like anus, or rectum, or feces, or mucus make you squeamish, you can either brace yourself and read on, or you can leave now. There'll be plenty of that. And diarrhea, constipation, and farting. This is not a polite-society kind of condition to get saddled with.

Crohn's is the devil in immune form. The immune system goes off its Ritalin, or whatever it usually does to keep itself occupied, and starts attacking healthy tissue, leaving people with ulcers, opportunistic infections, and malnutrition. Then there are these things called fistulas. What this means is that your immune response has eaten completely through gastrointestinal tract tissue and all sorts of nasties are leaking into body cavities they shouldn't be in.

Every time you think you have it figured out, it throws you a curve ball. It's very sold on it's own individualism. No two cases are alike, and isn't that just special. What one person learns from his or her experience with Crohn's does not necessarily apply to anyone else. Just remember – this makes you very special. You always wanted to be special, didn't you?

In a way, I feel like a hack writing this. The issues I've had with Crohn's have been fairly minor compared to what others have endured. However, I have been...encouraged...by friends and family to put this to paper. It doesn't hurt that the words, the experiences, themselves want out, too. They rattle around in my brain, driving me nuts sometimes. But the chances of my finding someone who can relate instead of sympathize are slim. I know plenty of people with Crohn's, which is sort of weird in itself, seeing as so many I “talk” to online feel like they're living in a state of isolation where there is no one who can understand what they're dealing with.

The thing of it is, even other Crohn's sufferers (or Crohnies, as some of us have taken to calling ourselves) don't really know what another Crohn's sufferer goes through – like I said, the cases are very individual. During my first flare up, I couldn't so much as look at a bowl of rice without doubling over in pain and running for the bathroom (which looked pretty darn awkward). Rice – which just about everyone looked to as a miracle food because it was one of the few things they could eat with aplomb. Meanwhile I could attack dairy and onion laden foods with abandon. So much for consistency.

Now, you gotta figure if the disease is the devil itself, the medications to deal with it can't help but be the devil's own minions. It takes evil to deal with evil, after all. Whole hosts of antibiotics, steroids, special anti-inflammatories (because you can't take aspirin, ibuprofen, or NSAIDS as they can cause bleeding or intestinal inflammation – and you have enough of that going on already, thanks much). Then, because the disease will certainly rob you of your sanity at some point, you wind up delving into the world of anti-depressants, anti-anxiety, and sleep medications. It's all about better living through chemistry. And let's not forget the immune suppressants. The ones that are supposed to go to the root of the problem by telling your immune system to knock it the hell off. But, most take a few weeks to really work, so you're waiting, and spending money on this stuff, hoping that it will show some effect.

Trial and error is the name of the game, and it sucks. I know from experience. However, what can one do with an experience that sucks this bad? Hang on to it like a security blanket? Probably not the best idea. But it's still there – in the back of my head, every time I look at a bowl of rice. Well, maybe there is an answer out there. Write it down. Look back on it and laugh at the awkward times, cry a little for the most dismal times, but above all else, through all that, show other folks who might be in the same position I was that there is, indeed, life after a flare up.

I mean, here I am. Five years since a flare up that should have by all rights damn near killed me. Half the time I thought I was pretty much dead, anyway, except for the pain. That was a constant reminder that I wasn't actually dead – yet. Now I look back on so much of that, and I can't find it in me to regret any of it. It changed who I am, mostly in good ways. Like walking through a fire or something – I came out on the other side more aware of life, and how good it can be, and wanting to take advantage of each and every moment. Corny, huh? Yeah, but it's the truth.

I digress. Here I am. The love of my life sleeping loudly next to me. He's been working on getting a nursing degree – a direct product of time he spent with me in the hospital, I might add. I know that the snoring hulk next to me is the dearest, sweetest man on the planet, even with all his faults. He put up with me through everything and he's still here. He never ran from me. I think he probably considered it – he would have been nuts not to, I think. But he helped me get through it. So did my family. I include his family in that, as well. I was so fortunate to have the support I did – and that, again, is a whole essay in itself.

Now, I have spent two years working 50 hours or more a week on a community emergency escape plan the idealism of which was almost as astounding as the logistics of it. I'm looking at going to law school. I serve a group of teens at a concert venue on the weekends – a group of kids who make me proud every week. I write fiction, some. Okay, so some of it is fan fiction – but hey, anything to get a person started, right? I've learned to sew aprons, to embroider, to clean houses, I've worked in food service. I've learned to pick my battles a little more carefully than I used to. I have learned to follow the advocate that is in my soul. I look back at what I did before Crohn's and realize that it was killing me as well – not allowing myself to be true, either to myself or to those I cared for. I'm okay with who I am, and that's pretty cool, too.

Not that I don't still have my moments. We'll talk about panic attacks and anxiety in one of these essays. My dear sweet darling occasionally has to get the flat metal spatula out to peel me off the ceiling when I get too wound up for my own good. Good thing he's tall enough to do it without standing on a chair or anything – that could get dangerous.

But for the most part, it's cool. I've had to face the fact that I'm neurotic, and learn to be okay with that. I've had to learn to roll with my temper a little different without squashing it in a stupid effort to turn myself into someone I'm not. Life could be a lot worse. As a friend of mine says, “hey, I'm still on the right side of the grass.” There were times when I wished I wasn't. There were times when if I'd had an iota more balls than I do, I'd have done something about that. Ultimately I was chicken. Not that I was scared of dying – I'm not. I was more afraid that I'd botch the attempt and live to regret it.