Five things I’ve learned from five years with a j-pouch

“We have a 29-year-old male here for an ostomy reversal. He already has a pelvic pouch, which was surgically created nine months ago. Today’s procedure should take about 40 minutes,” said the young resident doctor standing beside the operating table.

His voice is the last thing I remember hearing before my last surgery. I remember the bright white lights above the operating table, and the rest of the sterile room being relatively dark. I remember the cold of the room. I remember the steel of the table. And I remember feeling calm, which had nothing to do with the anesthetic running into the IV I had in my left wrist. I felt like my ostomy reversal was going to put me on track to better health, and a better life. I was grateful to be in the care of the exceptional staff at Mount Sinai Hospital in Toronto. It was a wonderful feeling of readiness, probably because I didn’t actually have to do anything in that moment other than fall asleep.

I woke up in my hospital bed, pulled up my gown, and studied the line of shiny staples to the right of my navel where my ostomy used to be. My abdomen hurt, as expected, but I felt alright. I wasn’t thinking about the anguish of my past ulcerative colitis flare-ups. I wasn’t thinking about what my recovery would be like or how I’d adjust to using my j-pouch. I was just there. Present. Grateful.

That was five years ago. And as I think about all that’s happened between that surgery and now, there’s one overriding feeling – gratitude. Because my j-pouch has opened up possibilities I might not have otherwise had, it’s kept me going in times where I needed to step up for others, and it’s helped me better identify what’s important in my life.

Here are some of the main lessons I’ve learned, and what I’m thinking about today as I mark my fifth pouch pouchiversary.

Stability is worth striving for

There’s so much chatter today from people who yearn for excitement. Apparently it’s vital to travel so you can learn shit about yourself, and break away from normality in search of adventures to get you high on life.

Then you tumble off a waterfall and die.

Look, if your passport is your trophy case, fine. If you’re deathly afraid of boredom, fine. But there’s nothing wrong with routine. In fact, it can be incredibly helpful.

A little over a year after my ostomy reversal surgery, I moved into an apartment so I could live alone and be close to my workplace at the time. I got into a nice groove. On most days I got up and ate breakfast, walked to work, ate lunch that I brought from home, got things done at my job, walked home, went to the gym or went for a little run, made dinner, dicked around on the internet for a bit, and went to bed. I’m sure a lot of people would see that as a dull day. But I loved being able to have those sorts of days, and have them regularly, because for years when my UC was horrid, I couldn’t.

Being able to eat at similar times each day, being able to sleep at similar times each day, and being able to work on a schedule that doesn’t constantly fluctuate helped regulate my bowel habits. I could anticipate bathroom trips and I was rarely, if ever, taken by surprise by a bowel movement. My overall health benefitted from normalcy.

That’s been more evident to me over the last two or so years as my father’s health has declined and I’ve had to help him manage the challenges. Trips to the ER, stays in hospital, and an endless parade of appointments make maintaining a healthy routine difficult. Sleep patterns change, eating habits change, and stress builds. That leads to irritability, both in mind and bowels. Thankfully my pouch hasn’t suffered significantly. There have been times where bowel movements become more frequent, and they’re usually more watery in stressful periods, but the j-pouch itself has held up well, and has enabled me to be there for an ailing parent.

Connections are crucial

When I started blogging about UC and my surgeries back in 2013, I unexpectedly found an online community. The increasing prominence of social media, particularly Twitter, around that time let me virtually meet other people living with inflammatory bowel disease. They offered a unique kind of support back then, as they still do now. It’s support that’s grounded in empathy and experience, and that resonates so much with me, as I think it does with anyone living with Crohn’s disease, ulcerative colitis, a j-pouch, or an ostomy.

I’ve been lucky enough to meet a bunch of my online friends in real life. They’re even lovelier in person. When you meet someone in person for the first time, there’s usually some sort of reservation. You don’t just launch into long conversations and raucous laughter right away. But somehow, when I’ve met my IBD friends, there’s been zero timidity. There’s immediate warmth and care and lifted spirits.

Turning online connections into real-world ones isn’t always possible, and that’s where local support groups come in. Attending IBD group support meetings at Mount Sinai Hospital and meetings of the Peel Region chapter of Crohn’s and Colitis Canada have been invaluable in my ongoing efforts to stay well. After talking, sharing, learning, and laughing with other people at those meetings, I feel cared for, valued, and more resilient.

All this isn’t to say people who don’t have IBD offer lackluster support. My friends and family have of course been supportive through all my trials with UC, and I’m grateful for all the positive interpersonal connections I have.

Medicine is not an enemy, but it’s great not to need it

After multiple treatments including a biologic medication failed to get my UC under control, I opted for surgery to remove my colon. I was tired of medications failing. I was tired of needing steroids to keep my intestines from instantaneously inflaming. And I didn’t want to again have to coordinate plans and paperwork with government agencies and pharmaceutical companies to cover the massive cost of medicine.

I haven’t taken a medication for inflammatory bowel disease since my first surgery in 2013. However, I do still take vitamin supplements, an iron supplement, and I recently started taking a tasty strawberry-flavoured biotin gummy that I hope will address my thinning hair (getting old sucks balls). All of my supplements are available without prescription and are relatively inexpensive.

Being medication-free is pretty sweet. No concerns about affordability. No concerns about side effects. No concerns about immunogenicity.

Just to be clear, I’m not knocking medications that restore quality of life to people with IBD, or any other illness. And there’s no shame in being on a treatment that helps you live a life less encumbered by disease. But not being at the mercy of a medication is something I’m very grateful for.

That said, you (ought to) know how this IBD thing goes – you’re never really out of the woods. An immune-mediated disease can cause problems all over the body. Since last fall, I’ve noticed pain in my joints and back. The pain came on amidst a very stressful period at work while I was also under the pressure of helping to take care of my father. So it could have been an isolated issue. Or it could be my dogshit immune system biting me in new places. If that’s the case, I could be right back to needing medication. And hell, I could need medication for a number of other reasons because, you know, life is shit.

I hope that I can carry on being med-free for a good long time, and at least for now, I have that luxury because of my j-pouch.

Movement is marvelous

The song “Get Together” by The Everlasters is an absolute banger. I first heard in an Adidas body wash ad in the summer of 2013, soon after I was discharged from hospital following my first surgery. I ripped the song from YouTube and put it on my iPod shuffle. I walked around my neighbourhood with Get Together on repeat as I tried to recover the weight and muscle lost through the operation and subsequent complications.

Whenever that song comes on now, and yes I still use the same iPod shuffle, I’m transported back to that time. The warmth of the summer, the lush green trees, and the difficulty I had walking to the end of the block. It feels good to hear it now as I walk, or run, or cycle, and remember that I’ve come a long way from when I first found that catchy tune.

In 2017 I was able to run my first half-marathon, and I’ll be running with the Guts to Run team in the 10K event at this year’s Mississauga Marathon. In 2018, I took part in the Tour de Sauga, a 25-kilometer bike ride around Mississauga. I take long walks around my neighbourhood as often as I can. I feel physically and mentally better when I’m active, and when other aspects of life have piled up and prevented me from exercising, I crash pretty quickly.

When my activity levels drop, the fat piles up around my belly and my chest. When the fat piles up, I hate myself (like, more than usual). But at some point, usually when the rest of life settles down, I manage to kick my ass back in gear and trim some of the blubber through exercise and better eating. This cycle has happened a few times in the last couple of years. Once again, my pouch has largely been cooperative in spite of the weight and activity fluctuations. But there’s no doubt that it functions better when I’m physically active.

Only occasionally has the j-pouch itself been an impediment to exercise. I try to empty it before starting any sort of exercise, and if I’m out on a long walk, I’ll take bathroom breaks when needed. Luckily I have the ability to hold in shits pretty well, so I don’t face the same sort of urgency I did with my UC flare-ups.

I’m trying to work more activity into my day-to-day life, and I can’t wait until the spring so I can break out my bike again. Walking, running, and cycling aren’t just nice-to-do activities, they imperatives. I know now more than ever the importance of making time for them and the other things that bring happiness into my life. That segues nicely into my final lesson.

Limits must be respected

I changed jobs in 2016, and over time the demands of the new job led to a degradation of stability, which you’ll recall is something that makes life with a j-pouch, and I’d argue life in general, better.

There was a longer (three hours round trip) commute. Late nights became routine. There was work on weekends. My sleep patterns varied. I had less time to exercise. I’d often skip breakfast to get to work on time, then eat other meals at irregular times. Bowel movements became less predictable, and often, more watery. I could physically feel the stress of the job manifesting as heat in my abdomen. In 2017, a scope and biopsies of my pouch showed inflammation for the first time since my surgery.

I suggested ways to improve my work-life balance. They were met with resistance. When changes were made, they were ultimately outweighed by other inherent issues. It was clear to me that staying in that position would continue to damage my physical and mental health, and I didn’t want to step away only after reaching a wicked bout of pouchitis, or worse.

I made the decision to leave that job so I could take back more of my time. So I could exercise again, sleep better, eat better, continue to care for my father, and escape the daily barrage of work-related tension. My resignation was my way of thanking and respecting my body, which had endured trying circumstances for so long.

There were reservations about leaving because I didn’t want people painting me as weak. I know people with IBD who have faced such criticism when they’ve left jobs under similar circumstances as mine. Ultimately though, if people want to use an individual’s chronic disease as a scapegoat for their own deficiencies, well, ¯\_(ツ)_/¯.

It’s not easy for people to up and quit their jobs. There are bills to pay and mouths to feed and all that. Finding work is hard. But think about how much more it will cost you to stay in a position that ravages your health and happiness. That’s what I told myself, and human resources, when I submitted my resignation.

I have to echo my gratitude once more to the doctors, nurses, and staff at Mount Sinai Hospital who helped me reach the point where I find myself today. There are often times when I just think about how amazing it is that I could have a large organ removed, another one reshaped, and still carry on with life largely as others who are luckier still to have never worried about taking such drastic measures.

Living with a pelvic pouch is an ongoing experiment in what works and what doesn’t – in terms of diet, stress, work, lifestyle, and everything else. But I’ve made it five years now, and that’s pretty cool. I hope many more years, and even better years, with my j-pouch lie ahead, but I’m also trying to be more grounded in the present, so I can feel thankful for what is, more than what may be.