Say when
When I could see the contents of a Subway footlong steak and cheese with lettuce and tomatoes floating inside the toilet bowl. When, later, the water inside that toilet bowl turned bright red. When I had to sit on that toilet every hour, on the hour, day and night, and I had no idea why.
When my tongue turned black after eating a bottle full of chewable Pepto-Bismol tablets that still did nothing to stop the diarrhea. When my doctors kept asking me if I was under any stress, and my only response was, “yes, because I can’t stop shitting blood and it’s freaking me out.” When I frantically searched my symptoms on WebMD and diagnosed myself with everything from an E. coli infection to colon cancer.
When I ran from my desk to the office bathroom and couldn’t make it in time to stop a wet, smelly, red and brown mess from ruining my boxer briefs. When I balled that sullied pair of boxer briefs and shoved them into the bathroom garbage can. When I had to stop training for a half marathon because the race route wasn’t lined with Porta Potties.
When I loaded my backpack with spare pairs of underwear before leaving the house. When I hunched over in my visual culture class and clutched my stomach, hoping that I could just make it to end of the lecture without having an accident.
When I woke up woozy on a gurney inside St. Joseph’s Hospital after my first colonoscopy. When I met Dr. Kempston in his office and his first words were, “you have ulcerative colitis.”
When I took eight tiny prednisone pills a day to quell my symptoms. When those pills prompted me to eat everything in sight and caused my cheeks and chin to swell. When I started taking Asacol, three tablets twice daily, and I believed everything was, and would be, fine. When even on symptom-free days, I wondered if I was on the brink of another flare-up, another backslide into pain and worthlessness and misery.
When the Asacol lost its magic, and I did backslide. When I tried to run in spite of my bowels, shit my pants, and resorted to using leaves in a nearby park to wipe up the mess. When I cried on the walk home.
When I hitched my hopes to new prescriptions, naturopathic remedies, homeopathic medicine, and gluten-free diets. When they all failed. When I filled out rounds of paperwork for the Ontario government to convince them that I needed help paying $30,000 a year for Remicade infusions. When the infusions crapped out on me after two months.
When I walked into a change room inside Mount Sinai hospital, took off my clothes and put on two robes – a white one that opened in the back underneath a blue one that opened at the front. When I laid my back on the cold operating table and started counting backwards from 100. When I woke up without a colon. When my nurse told me to press the button on my pain pump to receive a shot of morphine when things hurt too much. When I pressed the button 40 times on the first night after the surgery.
When I saw my ostomy for the first time – a red, golf ball-sized bulge that stuck out from the right side of my abdomen. When it spewed black liquid into the clear plastic bag around it. When my bowels stopped working after the surgery and a nasogastric tube had to be rammed into my nose, down my throat, and into my stomach. When my incision site opened into a wound that would need to be dressed every day for seven months. When an abscess formed and a drainage tube had to be inserted into my right buttock for four months. When I was jobless, in need of a homecare nurse, and feeling utterly useless as a human being. When I lied to everyone when I said I was fine.
When my ostomy shrunk to the size of chocolate-covered almond and I couldn’t properly seal the area around it. When the skin around my ostomy burned for months. When I lost 30 pounds and stared through wet eyes at my emaciated figure in the mirror. When a partial blockage led to a blowout, and liquid stool ran out from my ostomy appliance, leaving blotches of brown on a white polo shirt.
When I laid down on the Mount Sinai operating table a second time to have my ostomy reversed and to put my pelvic pouch to work. When I woke up from that surgery with a line of 22 silver staples holding together the skin where my stoma used to be. When I vomited in the washroom before convincing myself I was indeed good enough to be discharged. When my dad drove me to the ER the next morning because I wasn’t.
When I winced and wiggled on the toilet as I felt my first case of butt burn with my pelvic pouch. When my pouch woke me up five times a night, and each bathroom trip lasted a good 20 minutes. When I started taking my phone into the bathroom routinely to pass the time.
When I started a new job and brought Calmoseptine ointment, wet wipes, and a spare pair of underwear to stash in my desk. When I have to attempt to clear out my pouch as much as possible before attempting to go on a run. When I still have to break up a run with a pit stop in a public bathroom. When I have to use filthy public bathrooms, which will forever serve as evidence of mankind’s baffling idiocy.
When I have to keep going back to friends and family for donations to my IBD fundraising walks and runs. When I have to consider and reconsider travel plans, housing plans, financial plans, and exercise plans out of concern my body won’t cope with even a small divergence from the customary. When I worry, for no real reason, that I’ll backslide yet again, need more surgery, and miss more than I already have.
When I sit among an IBD support group and hear a tearful story of a mother struggling to understand her 12-year-old son’s Crohn’s disease. When I read my friends’ Facebook updates on aching joints, sleepless nights, struggles with depression, lost jobs, and impending operations. When I read a story about someone who died as a result of complications from inflammatory bowel disease.
When World IBD Day rolls around, as it does today, and I know so many of us with Crohn’s disease or ulcerative colitis have had enough. We had enough months ago. Years ago. Decades ago. And yet, we carried on.
