My Disease

            I stare in my reflection on the stainless steel door while I bounce my legs.  I feel the uncomfortable sweat as I strain to hold.  I hear the water run, the paper towel dispense, the door shut.  I count to five and listen for anyone else.  When I’m certain I’m alone, I explode.  In that instant I don’t care who listens.  The embarrassment comes immediately after, when the murmurs I could hear before silence for a few seconds.  Great.  The cute librarian with glasses was out there.

            And that’s my Crohn’s Disease.  It’s more than a chronic inflammation of my gastrointestinal tract.  It’s a nine pills a day, ten trips to the bathroom, twenty-four rolls of toilet paper a week, eight and a half colonoscopies kind of disease.  It’s diarrhea in the morning and constipation in the evening.  It’s approaching a woman to ask her out only to have your stomach speak for you.  It’s a twelve ounce cup of banana-flavored barium.  It’s bowel prep.  I found a list of symptoms on the website for the Crohn’s and Colitis Foundation of America (ccfa.org).  Persistent diarrhea, rectal bleeding, an urgent need to move one’s bowels, abdominal cramps and pains, sensation of incomplete evacuation, constipation, fever, loss of appetite, weight loss, fatigue, night sweats, and loss of normal menstrual cycle. 

            I have managed to maintain my normal menstrual cycle.  That would be a small consolation if I had a menstrual cycle.  But I don’t.

            Fifteen years ago, I collapsed in my apartment.  The pain kept me on the floor in my boxers for an hour.  The pain was like a madman with a knife stabbing outwards, trying to pierce the wall of my lower abdomen so he could come and simply peel open the tear and do with my guts as he wished.  My one-year-old son played and laughed and had just a grand old time as I laid in his room in agony.  Jerk.

            I took off work to see the doctor, and he stuck his finger up my ass.  A month later, he stuck a camera up my ass.  That time he gave me anesthesia.  I had heard horror stories about the whole colonoscopy experience, but my first colonoscopy went smoothly.  All I remember was sitting up once during the procedure, taking a look the insides of my bowels on the monitor, and exclaiming, “That’s so cool!”

            The coolness wore off four years later.  Instead of laughing at my condition, I was screaming at it from a hospital bed.  Once again, I had collapsed, this time in my parents’ study.  They took me to the emergency room.  The tall male nurse asked me what was wrong. 

            I vomited blood on his clogs.

            I give the nurse credit.  He kept his nerve: “I see.  Now, on a scale of one to ten, how’s your pain?”

            For two months, I laid on my couch pondering my failing body.  I’d raise my arm as if I was closing the blinds behind me, but I would keep the arm limp.  It was just bone.  A pole, really.  No form to it.  No muscle.  Just a long pole of flesh.  It had muscle before.  My whole body faded like that.  Too often I traced the outline of my ribcage when I took a breath.  I looked like a fourteen year old with chest hair.

            I lost thirty pounds in two months.  At work, people stopped to tell me I looked like an old man, how I walked all hunched, how I let my beard grow out.  I weighed 130 pounds.  I weighed 130 in high school.  I also ran cross country and played basketball and racquetball in high school.  I was healthy.  I stepped out of the shower and I looked like a teenager.  Now, I looked like a dank rat crawling out of the sewer.  Bags hung under my eyes, lines indented my cheekbones, and gray hairs appeared in my stubble. 

            The flare-up nearly killed me.  I writhed on my toilet, desperate to see anything in that pot besides yellow.  No clue why it was yellow, since all I drank for those months was water.  I prayed for the diarrhea to return, the days of six trips to the bathroom, because then I wouldn’t feel the pain of trying to squeeze a turd the size of a penny out of my ass.  My inability to defecate left me with little appetite.  Two months of food wasted in the freezer.  Instead, I dined on crackers, bread, and water.  Prisoners eat better.

            A failed colonoscopy discovered signs of a blockage.  I needed surgery.  Parts of my intestines had fused together, and in that process the parts had perforated.  The William Hurt doppelganger who took out two feet of my intestines told my mother I should be dead.  This was after the surgery, but before I woke up in total agony.  And screamed at my nurses, “It hurts!  It fucking hurts!  It mother fucking hurts!” 

            That’s a direct quote.  I remember it so vividly because it’s the only time I’ve ever cursed in front of my parents.  But it’s not the worst pain I’ve ever felt.  Let me tell you how I had a stent removed from my kidneys...