What are the most disruptive symptoms of UC?

This depends on whether I’m in an active flare or not. At the height of a flare, when it’s really bad, I have 20 plus bowel movements a day and there’s a lot of blood in the stool, so I tend to get anemic and feel very tired and weak. It’s not like you feel when you haven’t had enough sleep. The best way I can describe how tired I am is that I only have the energy to lie down and watch TV. I can’t read. I can’t play video games, which is something I enjoy doing in my free time. I’m pretty much stuck at home.

My flares usually last about three months, slowly ramping up to more bowel movements, more blood and more pain, then peaking and tapering off. The recovery can be as bad as the flare itself because you lose muscle mass and have to build it back up.

When I’m in remission, I get closer to having a normal life. Generally, the mornings are when the most disruptive symptom happens: bowel urgency often after I eat or drink something—even just a small amount of breakfast. I wouldn’t call it super-high urgency, but it’s enough that I tend to plan my mornings around it. If I’m out, I’m careful about when and what I eat. If I’m at home, I plan for the extra time I need in the morning.

After I was diagnosed, I wanted to know if there were any foods I should avoid eating, but the answer from doctors and people in the support group I joined tended to be, “It depends.” UC affects everyone differently. For me, I generally don’t eat a lot of salads or raw fruits and vegetables. I also avoid popcorn, corn and lentils. Initially, I had trouble with steak but that’s no longer the case. Then earlier this year I had to give up green beans (one of my favourite vegetables) because I noticed I wasn’t digesting them as well.

How has bowel urgency specifically impacted your ability to do your day-to-day work?

I’m lucky that I work remotely from home so I can manage bowel urgency relatively easily. However, I’ve heard stories of people having to hold it in and not use the washroom, which for me isn’t physically possible. UC can be very uncontrollable. I’ve also read about people having to quit their jobs because they couldn’t do their work with limited access to a washroom.

When I was first diagnosed, I was working in an office. I didn’t know what was going on, so I tried to keep working around my first flare. I would never do that again. But at the time I figured out my body’s rhythm in terms of bowel movements and was able to time everything. For example, I knew it took me 20 minutes to get to the office and that I could make it there if I didn’t eat or drink a lot.

Fortunately, the companies I work for as a software engineer are pretty flexible; and the teams I work with are supportive when anyone is having a medical issue. I tell them, “I need to take a little bit of a break,” and everyone is okay with that. We all pick up the slack for one another.

How has bowel urgency affected other aspects of your life?

As just one example, I wanted to do a hike an hour north of Vancouver near Squamish. With any hike they say, “Get there early in the morning to beat the crowds and beat the traffic.” But mornings can be challenging for me, so it took some planning. I woke up, took a medication I have to take an hour before any food, then I started driving. I had checked ahead of time that the hiking site had a toilet I could use when I arrived. When I got there, I ate, used the washroom and enjoyed the hike. I’m glad that everything went according to plan—it may have been a different story if the washroom had been closed or there was a lot of traffic getting there.

I also must plan in case I have a second bowel movement throughout the day, which can happen when I’ve had a bit too much food. I need to know where the closest washroom is wherever I go because the urgency can be medium-high to high. However, now that I’ve been living with UC for seven years, I have a better grasp of the warning signs.

What would you like employers to know about UC? What can they do better?

Between my employer and B.C.’s Fair PharmaCare, I don’t have to worry about how I’ll pay for the medications I need—some of which are expensive. But depending on where you work and where you live that may not be the case. Something employers should keep in mind is that when someone is able to manage their condition well and not have as many flares, they’re happier and healthier. Many companies say they want to take care of their employees. My employer has proven that this is more than a tagline for them.

In addition, when you’re in a flare you have no energy—but employers need to understand that even when you’re in remission you can be tired. Earlier this year, I wasn’t in a flare, but I was constantly tired even though I was getting enough sleep and exercise. There’s a big difference between being tired because of UC and being tired because you were up too late—it’s more chronic fatigue. That said, employers should give employees flexibility when it comes to taking some extra time off.