So, what is a day in the life of Crohn’s disease? It depends on how inflamed I am.
The day begins at 12 AM, when I wake up from a dream and feel the sudden urge to have a bowel movement. I pull back the covers, try to disentangle myself from my cat, black out as I stand, so I bend over partly and recover my sight by the time I get to the toilet. Diarrhea comes out, then a little gas, a little more solid stool. My ileal-cecal valve, in the bottom right quadrant of the lower abdomen, is hard and stuck. I lean my elbow against it and tilt forwards, trying to get the feces and gas trapped inside to move. It’s hopeless, I’m done. I use lots of toilet paper, and my hemorrhoids itch. The stars shine through the window.
I sleep again, then rise at 3:30. The above routine is repeated, only this time I read the new seed catalogue in the dim glow of the nightlight.
5:25 and I’m at it again. This time I was trying to find a toilet in my dream. I sat on one, relieved, but it was in the center of a town square, for everyone to see. Why the public humiliation? I wake up and run. My underwear is soiled again. More liquid comes out, followed by the rest of the mess, blood pooling across the top of the mound. It hurts. I itch. I flush.
I stay up and take my VSL pill, check my email. My ilium’s still blocked, but it doesn’t hurt so bad. I make tea, an almond flour waffle, watch the sun rise, interrupted 2 more times with more bowel movements.
Another hour and my family is awake. Breakfast starts with a flurry of obligations. I pack their lunches, prepare their schoolwork. Depending on the day, they go off to their class or snuggle on the couch and I teach them integers, spelling. I garden. They play.
I am tired by noon. The day is done for my body, but the black tea gets me through another hour. Tea after cup of tea. Peanut butter mixed with melted honey and unsweetened chocolate. Blended chicken soup. Yogurt shakes. I make pasta for my girls, sandwhiches, salads. I make things I long to eat but snifff instead.
During this time, a pee becomes a poo. I squat and mucus dribbles down. I never know if I should include these in the number of bowel movements I have a day when I’m taking the CDAI. All I know, is the toilet paper supply is getting low.
By 4:00 I am face down on the bed. If I’m lucky, I get some gas out and the hardness of the ilium is relieved for a while. My husband makes dinner. I feel useless. I sit at the computer, perhaps. I watch my children create.
I eat the things I must and watch them heap their plates with garden kale. Beans and cheese, fruit, my homegrown lettuce. I eat my soup, I smile. I enjoy their faces, I love my husband. Perhaps I talk with a friend. I take a hot bath. Forever long for health.
Perhaps I watch the sunset. The chickens go to sleep. The stars come up. I take my VSL and go to bed before my children. They wake me up and kiss me good night, my husband doing everything else.
And so, another day.
Post a Comment