The Whack-a-Mole Within

I spent the last two hours crying and reading What to Eat with IBD, a book by by Tracie Dalessandro, MS RD CDN (and IBD sufferer herself). IBD stands for "Inflammatory Bowel Disease," I think. Whatever, it includes Crohn's Disease, which was supposed to have much less control over my life after my surgery last August. I spent years of painful trial and error finding out which foods it was OK to eat and which exacerbated the pain and other symptoms of this puzzling auto-immune disease. Now there is this great book that distills everything I learned, and then some. I've tried for the last nine months to forget what I knew, but I was unsuccessful, and it's all rushing back.

"You have no restrictions on your diet now!" crowed the Seattle surgeon on my follow-up office visit after the surgery. He was SO wrong! Inflammation in the digestive tract can show up anywhere at any time when you have IBD. Even removing badly affected areas doesn't mean the inflammation won't just whimsically pop up in that very spot. It's Whack-a-mole, only I don't have a mallet.

Since August I've been joyfully eating things you probably take for granted but that I had not experienced in years: grapes, peas, big salads, sesame seeds, berries, whole grain foods--in short, most of the foods that have been found to be healthy for most of you. I thought they were now healthy for me as well. It's been so nice not to feel like a freak waiting for the Mother Ship to come take me home. I started having pain and fever about six weeks ago. My new desert gastroenterologist informed me on Friday that inflammation has shown up in places it never was before, that I need to stay on medication for the rest of my life--which may be shortened if I don't take meds--despite the fact that I have severe reactions to almost every medication the ingenious drug companies have devised to save your lives.(Would it be bad form to call that Northwest surgeon and tell him just how wrong he was? Yes, I know it would. I just want to yell at someone.)

I've been feeling sorry for myself for three days now. I think that's enough. It's time to go back outside at night and look for the Mother Ship. At least the nights are warm here in the desert, so keeping a lookout isn't such a chilly business. And now I'll slip back into restrictive eating patterns that will lessen my symptoms. Yep, I'm taking responsibility for myself instead of railing at gods and doctors (who sometimes think they are gods.) Maybe it's because I'm old and too tired to make a big fuss. Maybe it's because feeling better is more important to me than insisting I don't have to follow ever-changing rules. Or it could be that I finally recognize that I'm blessed in all the ways that count, among them good health care, caring people in my life, and so much food to chose from that I can eat healthily, no matter what my dietary restrictions.

Actually, this is progress. Only three days of whining and self pity! When I first found out I had Crohn's Disease about 25 years ago, I went into denial and didn't give up foods that hurt me (tomato-based foods, nuts, pepper, spicy foods, etc.) for three years. I was cocky for 20 years thinking I was getting away with something because I didn't seem to have many symptoms without medication and I didn't have to have surgery. But chronic inflammation is insidious and comes after you with quiet persistence until one day it leaps up with a "Bwah hah haha!" and drags you into the hospital.

I thought my reward for going through surgery was that I would get to eat berries again. I guess not. ("No, no, my Sweet--you get to do all that hospital stuff and you still don't get berries and fried chicken! Bwah hah haha!") Actually, the reward was that the doctor was able to remove enough damage to keep the Whack-a-Mole creature from shutting down my digestive tract completely. I could have had the wailing ambulance experience and emergency surgery--which I may or may not have survived. (OK, maybe I should be calling that Northwest surgeon and thanking him.)

Well-intentioned people have been sending me articles and news blurbs and suggesting alternative medicines since I was first diagnosed. I actually tried some things before I realized that natural or synthetic, most of the treatments involved ingesting something--and they all made me sicker. I thought I'd learned not to get my hopes up. But did get them up this time around. Having them dashed hurts. And yet...and yet...these nine months have been glorious. I had a reprieve. I savored the giant, juicy strawberries of California spring. I reveled in blueberry buckwheat waffles. I felt happy and hopeful that my life would be so very different. It was a good run.

Now it's likely that I'll have to eat the same few well-cooked foods over and over to minimize pain and inflammation. If the past is any indication, I'll spend about a third of my time too fatigued to do anything but move from the bed to the couch and the computer. That's just the way it is with auto-immune diseases.

It's not such a bad life, all things considered. Maybe I'll just lie back and read (or write) a good book while doctors search for a mallet to knock out the Whack-a-Mole.