This post appeared on RasheedClarke.com.
I sit at a small round table inside California Sandwiches with Joe, whom I met after my first surgery at Mount Sinai Hospital when we were both patients. Every chomp into my chicken sandwich sends sweet red peppers and provolone cheese out of the bun. I wipe tomato sauce from my mouth with a stack of napkins.
Joe invited me out to lunch a few months after we were both released from the hospital. He was there to have an abscess drained; I was there to have my colon and rectum removed.
“You know,” says Joe, “you see a lot of stories online from people who say the J-pouch doesn’t work. About how it’s bound to fail.”
I nod and lower my eyes to my messy sandwich.
“But that doesn’t tell the whole story,” Joe continues. “I think there are lots of people out there living great lives with their pouches, and they’re too busy living to write about it.” He pauses for a bite of his meatball sandwich.
“I hope I can be one of those people someday,” I say.
~ ~ ~
I had that conversation with Joe in the fall of 2013 while living with an ostomy and awaiting a second surgery to get my J-pouch up and running. I had that second operation on February 11, 2014. Three years on, the pouch is doing all right. And I’m doing all right as a result. My third year with a J-pouch was marked by flux: changing jobs, changing relationships, and changing perceptions. But through all that change, my pouch provided stability, and in doing so, let me adapt to new situations, new challenges, and new opportunities. Here are the big takeaways from year three.
One of the hardest things about living with a chronic illness is the feeling that you’re a burden on the world, rather than a contributor to it. It’s easy to feel that way when you’re lying in a hospital bed, or on the hard backbench of a CAT scan machine, or on the cold steel of an operating table, or on your own bed as your homecare nurse changes your wound dressing. You know it costs a ton of public money and a wealth of individual expertise and kindness to keep you healthy. You know that, try as you might, a legion of doctors and nurses and friends and therapists and coworkers and pharmacists and family members will at some point pitch in for your wellbeing.
Over the last year, I have had made exactly zero trips to the hospital, and taken exactly zero prescription medications. That’s not to say I haven’t required any sort of care. I still see my family doctor and gastrointestinal specialist and dentist and optometrist for regular checkups. More recently I’ve started seeing a chiropractor to treat a persistent running injury that stems from my frustratingly flat feet. I turned to a psychologist to help me through moments of mental struggle. I attended mindfulness group sessions to learn about self-compassion. But there have been no major health scares. No emergency room runs. No need for in-home care.
I’ve been able to focus less on fixing all that’s wrong with me and more on improving what I have. I ran a 10K last May as part of a fundraising team named Guts to Run (I’ll be running with them again this spring, so feel free to chip in a few bucks for us). It was my first race since my surgery, and finishing in under 50 minutes renewed my sense of ability.
A few weeks after the run, I was part of a team of incredible volunteers that put on Peel Region’s Gutsy Walk, another fundraiser for Crohn’s disease and ulcerative colitis research. A couple of weeks beyond that, I accepted a job at Crohn’s and Colitis Canada, which lifted my sense of purpose a little higher.
It was also during this spring of upheaval that I ended the relationship with my girlfriend of nearly five years. As supportive and kind and caring as she was (and no question still is), I didn’t see a future for us. It was incredibly difficult to break up with her, but it was necessary.
Through it all, my pouch behaved like any other properly functioning internal organ should. It’s a testament to the beauty and brilliance of the pouch that all the stress of pushing my body physically, mentally, and emotionally, all at once, and all within the span of a couple of months, didn’t send me into a flare-up. I emerged from a period of volatility feeling… well. I felt my worth as an individual in my ability to push my physical body, to contribute to my community as a volunteer, to work for a cause that I am inextricably tied to, to make hard decisions, and to stick to them.
Since I was diagnosed with ulcerative colitis back in 2008, I developed a habit of pulling back from thinking about the future. Who knew when my next flare-up would be? What’s the point of planning if those plans were going to be derailed by my shitty body? Plus, I had a track record of flaring at particularly inopportune times. When I landed my first internship out of university, with a wonderful group of people at Where Toronto magazine, I was into a flare-up two weeks into the job. When I was on the verge of accepting a news reporter/anchor job offer from a radio station in Oshawa, I flared again and had to turn it down. Four months into my first job as a social media specialist, yep, another flare. I wouldn’t think about vacations, or dream of running in new races, or look into moving to new cities because colitis had me shackled.
I haven’t flared since the days before my first surgery in May 2013. That’s the longest stretch I’ve gone without the urgent, uncontrollable, bloody diarrhea, and all the other fun of colitis, since my diagnosis. I must reiterate that I am not cured, but surgery has led me to a better place, a place where I can dream moderately and plan pragmatically, and that’s still pretty good. I may not have plans to run a full marathon, but I can work towards a half marathon. I may not dream about globetrotting, but I can look into the cost of flights to New Zealand. Then I can curse the fact that flights to New Zealand are damn expensive.
My pouch has opened possibilities. Not just the possibility to run and see new stuff, but possibilities that people with good health sometimes take for granted. The possibility of seeing a friend after work. The possibility of going on dates. The possibility of seeing my friend again to complain about how dating is so hard. Plus I can look at my career and know that I can indeed ponder projects for the future and consider ways to be better at what I do.
Gratitude and guilt
During a battle in 1199, King Richard the Lionheart took an arrow in his left shoulder. By today’s – and Monty Python’s – standards, it would be but a scratch. But back in the Lionheart’s day, there were no antibiotics or sterilization protocols. The shot to the shoulder became infected, gangrene set in, spread through the body, and the king suffered an excruciating death two weeks later.
As recently as the early nineteenth century, doctors didn’t know how to prevent infection. Inside battlefield hospitals, doctors fearful of gangrene routinely hacked off the hands and legs of soldiers who sustained even minor limb injuries. The amputations were done without anesthetics.
From that point in history, it took less than two centuries for doctors and scientists to amass a dizzying amount of new knowledge about the human body. So much knowledge that they could slice me open, slice out my rectum and large intestine, reshape the end of my small intestine, attach it to my anus, pull another section of my small intestine outside of my abdomen, and secure an adhesive bag over that piece to collect feces. And they could do it all while I slept soundly. Granted, I woke up from all that cutting and sewing in agony, but modern medicine had an answer for that too, in the form of a pain pump I could press to inject myself with morphine.
To be alive today, on whatever day it is that you’re reading this, is to be alive on the greatest day in history. Because however unnoticeable it may be, we made progress from what we knew yesterday. And the day before that. And the day before that.
I am the beneficiary of an unfathomable amount of intellect that’s been built up generation upon generation, century upon century, era upon era. And that intellect came through the suffering of human beings who were far, far unluckier than I. I feel deep gratitude for being such a beneficiary, and it often brings me to tears because I don’t know what I did to deserve the almost miraculous good that’s been afforded to me.
Those tears, while sourced from gratefulness, also contain guilt, because I know how many people are still struggling because of Crohn’s disease or ulcerative colitis or one of a number of other misfortunes that may have befallen them. For the folks with IBD though, I feel a particular sense of survivor’s guilt, and it’s one of the reasons I haven’t written as much as I used to. I’d hate for someone who’s having a hard time with the disease, or a post-op recovery, to read this post and wonder why he/she hasn’t been as fortunate as I have. But I hope if someone in a bad spot does read this, he/she will feel at least a little bit hopeful that better days can come around. Don’t forget, I went through some pretty rough shit to get here.
But here I am, one of those people with a J-pouch who’s out living life and not having as much time to write about it. I guess that’s pretty cool. Life isn’t all smiles and sunshine though, and there are adjustments that my J-pouch necessitated which can be challenging. I covered those adjustments, which are still par for the course these days, in my first and second anniversary posts.
Today’s been a decent day. I eased into it by watching Arsenal’s early morning match against Hull City, which they won 2-0. I showered. I made an omelet. I wrote this post while keeping an eye on the Liverpool versus Spurs match and glancing out at the grey skies above my apartment. These are all normal things, enjoyable things, and that’s the point. Because of my J-pouch, I’m at a point where enjoyable things can be enjoyed, and there’s space for more good in life.