What it’s like to live with a j-pouch: lessons from my fourth year with a pelvic pouch

I sit inside a large room on the 18th floor inside Mount Sinai Hospital at one of their IBD group support sessions. Long tables form a rectangle that outlines the room. At the front of the room, one of the hospital’s doctors talks about the latest findings on inflammatory bowel disease. I take notes and look around the room from my place near the back.

After the doctor’s presentation, we take turns introducing ourselves. I quickly see that I’m in the minority of people who have never had surgery. I hear from people with Crohn’s disease, people with ulcerative colitis, people with ostomies, people with pelvic pouches, and then it’s my turn.

“Hi, I’m Rasheed. I was diagnosed with ulcerative colitis in 2008. I’ve been on a number of medications, and they don’t seem to be working for me anymore. So I’ve been thinking about surgery and I just wanted to come here to see what I could find out.”

After the introductions end, we rise from our seats and shuffle around the room to talk to one another. An athletic young man, maybe in his early 30s, with his brown hair buzzed down comes over to me. He introduces himself. I immediately forget his name.

“So you’re thinking about getting the surgery?” he asks.

“Yeah. I was good for a couple of years on Asacol, but nothing’s really worked for me since then. Except prednisone, but I know I can’t be on that forever,” I say.

“Well I just wanted to let you know how good the pouch has been for me. I feel great. I’m training to be a firefighter, and that’s something I couldn’t have imagined doing when I was sick,” he says.

“Wow. You had an ostomy though first, right?”

“Yes, for about three months. But even that time was a lot better than when I was having flare-ups. Honestly getting the surgery was the best decision I’ve made.”

“If you don’t mind me asking, how many times a day do you have to go to the bathroom?”

“It’s usually six or so times through the day and once in the middle of the night. Usually six nights a week I’ll have to go in the middle of the night. But you get used to it. It’s really not bad at all.”

“And food?”

“Everything. I can have tacos, beers, no problem.”

“Huh. Thanks so much for talking to me.”

“You’re very welcome. If you decide to have the surgery, I hope everything goes well!”

~ ~ ~

I decided not to have the surgery. Even after that glowing recommendation I received in 2012 from a man whose name I wish I could remember. At the time, I was still unsure. I still had biologic medications on the table, and I still harboured hopes that I could control my UC with diet and natural remedies.

I couldn’t. The diets failed, the naturopathic remedies failed, and after what was a hopeful two months on Remicade, it too failed. After all that, I found myself back at Mount Sinai Hospital in Toronto in the spring of 2013 to have my colectomy. A really rough patch ensued, but it eventually got sorted on February 11, 2014 when I had my second surgery – the one to get my pelvic pouch up and running.

Through my recovery, I’ve always kept that first conversation I had at Mount Sinai’s IBD support group in mind. I wanted to reach a place where I could feel as though I was living well with, and because of, my pelvic pouch.

In the four years that have followed my second surgery, I’m happy to report my j-pouch has held up nicely. It had a particularly impressive run in its fourth year, but I’m always cognizant not to take its abilities for granted. With that said, let’s have a look at how my pouch is helping me live a decent little life.

Exercise

In the spring of 2007, I was living in Halifax and training for a half-marathon. I never got to take part in the Bluenose Marathon that I signed up for, because that’s when my first symptoms of UC began.

It took ten goddamned years to get myself back up to my pre-UC running levels, but in May 2017, I finally ran my first half-marathon (photo proof above). I did it with a team called Guts to Run, which raises funds for research into Crohn’s and colitis. And I did it with my j-pouch.

I whizzed past every port-o-potty on the route. My pouch gave me no need to slow down or stop to take a shit. Keep in mind, though, this isn’t always the case when I run. I try to empty my pouch before running or starting any other exercise, but sometimes the feeling to go will arise during the activity. It sucks when that happens, but I can hold in the bowel movement. The problem with trying to hold in a poop while exercising is all that gyrating only sparks that feeling to go more frequently. So if it gets too uncomfortable, I’ll find a bathroom, clear out as much from the pouch as I can, then pick up the run/workout again.

Occasionally, I will have some blood in my stool immediately after exercising. The blood though is gone by the time the next shit comes around. This has been the case pretty much from the beginning with my pouch. It doesn’t concern my doctors, and it increasingly doesn’t concern me. I mean, it still gets to me a little to see all that red in the toilet bowl (memories of UC flares, anyone?), but I tend to shake it off a lot easier than I used to.

Dating

For men, pelvic pouch surgery comes with a risk of sexual dysfunction. I actually saw the prospect of not being able to have children as another benefit of the surgery (children, ew), but I still wanted to be able to have sex because… sex.

Luckily to this point, I haven’t noticed any sexual dysfunction, although sometimes it isn’t as easy for me to get an erection as it used to be. Methinks this has more to do with natural aging than my surgeries.

I have a pretty sizeable scar just north of my fun parts, but it doesn’t bother me, nor has it bothered any women I’ve dated, not that I’ve dated many. I’ve been upfront about my surgeries and my UC and my pelvic pouch with the women I’ve dated, and it’s never been an issue for them, far as I could tell. I’d like to think the honesty is appreciated. Maybe it even scored me a few sympathy points, and god knows I’m not above using that to my advantage.

I’ve got a terrific girlfriend now, and she’s been understanding and thoughtful about how my life is a little different because of the pouch. We’ve had lots of great dates and excursions together, and my pouch hasn’t really got in the way. And as far as sexual performance is concerned, well, I think she’d be the first to tell you that I am indeed tolerable.

Travel

Since the fall of 2016, I’ve been part of an advisory board for a company that’s developing education and support materials for people living with ulcerative colitis. I’m incredibly grateful to my friend Brooke for her hand in getting me involved in the work.

As a result of my place on that advisory board, I’ve been lucky enough to travel a few times over the last year to a few places I’ve never been: New York, San Francisco, and Las Vegas. I was also able to tack on a trip to Los Angeles (that one on my own dime, of course) to visit my family there.

I was able to explore some new cities, and see some pretty wonderful sights. I love walking, and walk I did in all of those places. My pouch behaved well through those exploratory walks, and when the need to go did arise, I was always able to find a bathroom at a café or restaurant or shopping mall. When I do walk, I always carry my one-litre water bottle with me, and I’ll refill it as needed to stay hydrated.

One trek I remember most was when I made my way up to the Hollywood sign in Los Angeles. That was a good three to four hours of walking, on a hot, sunny day. But my body handled it well. I did get lucky because there was a port-o-potty on the trail, and I made use of it on my way back from the sign to the Griffith Observatory, where I started the walk. If that port-o-potty wasn’t there, I may have had to take a shit in the bushes. If that became a reality, I did have tissues and hand sanitizer in my backpack. Thankfully, they were not needed that day.

A couple of notes about flying. I found eating about an hour before boarding, then going to the bathroom just before boarding, made for a more comfortable flight. Even if you don’t feel like you really have to go, I’d say it’s wise to try to let out some stool, and more importantly, gas, just before you step into the plane.

I also love the window seat because flying is still hella cool to me and I find it amazing to see the world from way up above. If you’re not as impressed with flying as I am, the aisle seat would be the better option, just for ease of bathroom access. On one of my longer flights, I had a window seat and had to ask the two people beside me to clear out so I could use the bathroom. People aren’t as bothered by the request as we may think they are. Or maybe they are, in which case fuck them.

Stress

So here’s where things get a little less rosy. After all, life isn’t all smiles and sunshine.

The last year has been hard on me for a couple of reasons. First, my father’s health took a dive back in August. It started off with a surgery to have an implantable cardioverter defibrillator. That set off a reaction of events that led to problems with his prostate, additional heart issues, and worsening kidney troubles. There were trips to the ER, hospital stays, and appointments upon appointments with a multitude of doctors.

It was the first time in my life I really had to take ownership of the caregiver role. But let’s be honest, it’s my dad who had the really rough ride. He’s working on recovering, but as is the case with our bodies, it is a slow process. I admire his ability to endure a battering of setbacks all clustered together in a relatively short period.

What’s all this got to do with a pelvic pouch? Well, I just wanted to highlight the fact that my pouch put me in a position to be a decent caregiver. It handled the unexpected and provided stability in my health during a time when stability in life was in short supply.

While the challenges of looking out for my father were marked, I've had added stress in the mix because of my job, which is challenging by nature. In the non-profit world, there's a desire to help as many people as possible, but a limited amount of resources available. Because I care about the cause of the organization I work for, and because the organization does carry out vital work that needs to continue, I push myself. But all that pushing is bad news bears for my body.

In January 2017, I had to essentially take on a second job, as one member of my department went on medical leave. At the same time, I was training for the half-marathon, and starting to date my now girlfriend. All in all, a hectic time. It was in February that I noticed a sore in my mouth. The first of many sores that would come and go for the next few months as my workload steadily increased.

Last June, at the conclusion of several months of extensive work that culminated in a large event, I went to work on a Monday morning, feeling generally like myself. But at the end of the workday I felt more tired than usual. Then on the subway ride home, I was labouring to stand up. I managed to make it home before feeling a mass of exhaustion fall over me. For the next several weeks, I fought fatigue that I could noticeably feel in my arms and legs.

After seeing my doctor, I began taking iron supplements more regularly, and slowly built my energy reserves back up. I took a vacation and I started feeling better still. The sores were gone, I could run comfortably (albeit far from my best), and I could even take that hike up to the Hollywood sign I mentioned earlier.

So even though my pouch didn’t really pose any problems, the stress I was under from work did culminate in symptoms outside the gastrointestinal tract. However, when another period of work-related stress came on last fall, I could feel the physical effects more in my gut. I can feel a warmth in my abdomen when the stress comes on, and it’s eerily similar to the warmth I used to feel ahead of a UC flare-up. That worries me, even though the recent bouts of warming didn’t lead to pouchitis or any other sort of inflammation of the j-pouch.

Despite the strength of my pouch, I know I can’t continue to push it by subjecting myself to undue levels of stress. To that end, I try to draw on my mindfulness exercises, I've got a great group of co-workers I can share laughs with, and I've put forward ideas in hopes that some root causes of stress can be mitigated.

Going forward, I hope that I can keep exercising and running because I know that keeps both my mind and my body feeling well. I hope I can continue to care for the people who care about me, and I hope that I can do a better job of saying no so that I don’t overburden myself.

I’ve been through an eventful and overly busy year, and I remain as grateful as ever for the doctors and nurses and medical staff at Mount Sinai Hospital who gave me the chance to live that eventful and overly busy year because of my j-pouch. In the difficult times, whether they’re related to work or relationships or caring for others, I try to remind myself to be grateful for the good I have. And I do indeed have plenty of good around me and, quite literally, within me.