Familiar, smiling faces greet me as I enter the community room inside the Superstore at Mavis and Dundas in Mississauga. This space, situated within the immense grocery store, is available for groups to book for meetings like this one, the monthly meeting of Crohn’s and Colitis Canada’s Peel Region Chapter. The Chapter works to raise awareness of inflammatory bowel disease, raise money for its parent organization, and support local people affected by IBD. I’ve been coming to these monthly meetings for about a year now, and through them I’ve been able to volunteer with the Chapter, where most of my duties revolved around promoting our largest fundraiser of the year – the Gutsy Walk.
At last year’s Gutsy Walk, I wore the “Gutsy Guy” costume –painter’s overalls with black and red felt stitched on to resemble the logo of Crohn’s and Colitis Canada, complete with a Hamburglar-esque mask. I ran 5 kilometres in the suit, which proved remarkable breathable on that warm Sunday last June. I’ve enjoyed volunteering with the Chapter. They support a cause that’s obviously close to me, and all the work I’ve put in for the Chapter hasn’t really felt like work. I’ve taken on tasks and responsibilities almost unconsciously. When Chapter members were asked who would volunteer to wear the costume, my hand shot up. I didn’t even think about it. I wanted to do it. I wanted to do whatever would help bring more attention to Crohn’s disease and ulcerative colitis. I wanted to do whatever would bring in more money to fund research into inflammatory bowel disease. And I still do.
Seated around a long rectangular table are a dozen people who share in the desire to vanquish IBD. Some faces are new, others are ones I’ve been lucky enough to see regularly over the last year. There are the volunteers who have been with the Chapter for years, others who came into the fold earlier this year, three new people who are attending a meeting for the first time, and three staff members of Crohn’s and Colitis Canada who support the chapter’s work.
As we usually do at the start of each meeting, we go around the table introducing ourselves, and what brought us to the meeting.
“Hi, my name is Jennifer, and I have ulcerative colitis. It’s been a pretty rough go for the last few years. I had a hard time getting diagnosed and I spent months in the hospital with pyoderma as doctors were trying to figure out just what was wrong with me. They told me they might have to… sorry.” Tears trickle down Jennifer’s cheeks. She looks down at her lap and wipes her eyes.
“Sorry,” she says before inhaling a deep breath. “They told me they might have to take my colon,” Jennifer’s voice cracks on her last word.
Whispers of “it’s okay” echo around the table.
“Sorry,” Jennifer says again. “I’m doing better now though. Remicade has been terrific for me, and I’m… I’m here now.”
The rest of us smile gently and nod approvingly. Our eyes turn to Wendy, who’s seated next to Jennifer. Wendy is one of the veteran volunteers of the Chapter.
“Hi… my name is Wendy and…” Wendy stops her sentence and bows her head. She holds back her tears then turns to Jennifer.
“My daughter has Crohn’s and… we’ve had conversations with her doctor about that too. It’s… it’s not looking good. I’m sorry.” Wendy stops and bows her head again.
Lucy, another one of the long-serving volunteers puts her hand on Wendy’s shoulder. Lucy introduces herself to the rest of the group, lets us know her son also has Crohn’s.
We continue around the table with our introductions. One of the new attendees, Gary, lets us know he’s had Crohn’s for ten years, and he’s the half-marathon pacer of a running group. There’s Edward, who’s had Crohn’s for eight years and is currently on a new type of biologic drug. There’s Sandra, who had a temporarily ileostomy and is now on Remicade. There’s me and my pelvic pouch.
After everyone’s made his or her introduction, Wendy speaks up again.
“Sorry for before, it’s just that my daughter’s had a difficult time lately. She’s back in university now and she just started classes again yesterday. But she spent the last two weeks back in the hospital, and her doctor thinks she might need surgery and a permanent ostomy. After he told her, she just laid in her bed and cried. So… it’s hard.”
Sometimes, inexplicably, I forget about the horrors I faced as a result of ulcerative colitis. I forget the bloody diarrhea slowly sliding down the inside of my pants legs. I forget the tubes in my nose and my ass and my abdomen. I forget the black water that poured into my ostomy bag. I forget the sterile ribbons that nurses had to pack into the wound below my navel. Sometimes I even forget the zipper-like scars that I see every day. I’m entrenched in a routine that seems so normal now: wake up, sit on the toilet for 15 minutes or so, go to work, shit before lunch, work some more, shit before walking home, make dinner, mindlessly browse the internet, go to bed, repeat.
My pouch has been largely well received by the rest of my body. It’s far from perfect, but it lets me live with a far better quality of life compared to the flares, compared to the recovery after my first surgery and its complications. I’m okay. Not great, but okay. And sometimes I forget that people would kill for okay. Parents would sacrifice anything for their child to be okay. How could I forget that? How horrible of me. How selfish of me.
~ ~ ~
I’m running on Burnhamthorpe Road, alongside a sprawling parking lot. Two construction cranes in the distance lower concrete slabs for the new addition to Square One, Ontario’s largest shopping mall. A man in his mid-twenties runs towards me. His upper arms bulge through his tight-fitting t-shirt. I wave as we pass each other. He smiles and nods. I wish I could look like him when I’m running. I just wish I could look like him.
The traffic light up ahead turns yellow and I slow my pace to a walk. My J-pouch rumbles and I suppress the urge to shit. I decide to turn on Confederation Parkway and run across the bridge that arches over the six lanes of Highway 403. Just before the bridge, I stop and hold back a more painful urge. My pouch gurgles and I jog up the bridge’s incline. Halfway across the span, I wave at a young woman jogging in pink Nikes with a matching headband. She smiles and sprints down the bridge. I slow my pace again and ride out another wave of discomfort.
I reach the other end of the bridge and walk while I consider my bathroom options. There’s a newly constructed plaza at Confederation and Eglinton, about a half kilometer away, but only a few stores have opened up. There’s an Indian street food restaurant, but I don’t have any money on me, and I’d feel bad using their bathroom without at least a token purchase. I could run back across the bridge to Celebration Square, a public space near Square One that has a public bathroom that I’ve used before. There’s also Sheridan College, and I know there’s a bathroom on the first floor near the main entrance, because I’ve used it before. There’s also a bathroom inside the Starbucks across from the Square One bus terminal, and of course I’ve used that one before too.
I decide on the Sheridan College bathroom and start jogging back up the bridge towards the campus. I stop a few more times along the way to hold back more urges. I dart inside the main building and feel ridiculous in my running outfit. I crash into the bathroom stall and confront a toilet seat adorned with small golden puddles. I wad up toilet paper and wipe the fucking piss off the fucking toilet seat because the fucking male students at Sheridan College can’t:
a) Put the fucking toilet seat up;
b) Aim their fucking dicks properly; or
c) Show some courtesy and wipe their fucking urine off the toilet seat.
After wiping the ceramic seat as best as I could, slide my sweaty shorts down, and park myself on the toilet. I stream of warm sludge hits the wadded up toilet paper inside the bowl. I rip a loud fart. My midsection cramps. I wait to let out more. More shots of stool, more audible releases of gas. Frustration at not trying to clear the pouch out properly before I left my apartment. Anger that anyone would consider me cured.
I neatly fold a long strip of toilet paper and wipe my backside. I pull up my shorts and flush the mess out of sight. I wash my hands, rush out of the building, and sprint away from the campus. My pit stop took 20 minutes.
~ ~ ~
I sit inside my apartment looking outside at the lights from other apartments in the surrounding buildings that dot the black sky with white and yellow rectangles. I’m typing on my laptop to remember the tears from the last Chapter meeting. To remember the look of agony on Jennifer’s face when she described the possibility of losing her colon. To remember the sorrow on Wendy’s face when she told our group about her daughter.
I’m writing to remember the interrupted run I went on earlier this week. I’m trying to hammer reminders into my mind so I don’t forget that just because I have an insipid but livable routine that somehow I’m out of the woods. I try not to remember too much of my past with IBD because, frankly, it still cuts me up. But I can’t turn away from the people who struggle in the here and now. The children, the students, the adults, the parents, the coworkers, the friends, the family members who all share in the pain and the tears wrought by Crohn’s disease and ulcerative colitis. These diseases are abhorrent, and I’m sorry that I ever forgot that. I’m sorry.
* The people appearing in this story have had their names changed to protect their privacy.