Life with IBD

Emily’s Story

At 27, Emily was building a successful career as a store designer for Lululemon and teaching barre fitness classes on the side. She felt unstoppable.

She had never heard of ulcerative colitis.

But when an October 2011 bout of what Emily initially suspected to be food poisoning resurfaced with a vengeance a few weeks later on a Mexican holiday, she suspected there might be something else going on.

Upon returning home to Vancouver, her symptoms — intense cramping and trips to the bathroom every 30 to 45 minutes with extremely bloody stools — only got worse.

“I was afraid to eat anything,” said Emily. “I grew up with a food editor and critic for a mom, so food is my life. When eating turns scary and anxiety-ridden it’s the weirdest, saddest experience. Walking down the grocery aisle I was stumped. You know you have to eat, but you know it’s going to make you feel worse.”

At that point, Emily, a self-confessed “super A-type,” wasn’t about to let her gut stand in the way of her life. She managed to keep working at her high-stress job, albeit frequently excusing herself from business meetings to find a bathroom. She kept teaching, attempting to bolster her waning energy with an early morning cup of bone broth before leading back-to-back classes, which started at 6 AM.

Finally, at the end of November, in the midst of “constant panic and a lot of bathroom time,” she knew there was something very wrong. She was experiencing the worst pain she’d ever felt, waking in the night to go to the bathroom and had lost 20 pounds.

I have always taken the approach that if you work hard enough you can overcome anything. I had to accept that ulcerative colitis isn’t going to be like that. This is forever.

She describes her friend, Alana, as her “angel.” After conferring with Emily’s mom, Alana, a nurse, along with her friend Marianne, drove Emily to St. Paul’s Hospital. At that point, said Emily, “Even driving to the hospital was incredibly stressful. I didn’t know if I could make it without having an accident.” But Alana and Marianne’s calm approach helped her relax through the car ride and visit to St. Paul’s emergency room, where she was quarantined on suspicion she had C. difficile (she didn’t) and eventually admitted.

Emily’s worried mom arrived from Ottawa to be there for Emily’s first scope test, a flexible sigmoidoscopy to check her lower intestine.

This routine test turned into a fully sedated colonoscopy, the results of which were clear: Emily was suffering from moderate-to-severe ulcerative colitis — an inflammatory bowel disease that causes long-lasting inflammation and ulcers in the digestive track.

I’m not ashamed of my IBD and do think it needs to be talked about more.

After diagnosis, Emily spent eight days in the hospital until her condition stabilized on prednisone, a steroid, which she took for three months. She spent another four months recovering before returning to work. She says it took her at least half that time to adjust to the fact that this disease is with her forever. “I have always taken the approach that if you work hard enough you can overcome anything. I had to accept that this isn’t going to be like that. This is forever.”

Emily isn’t about to let her ulcerative colitis stop her. She is in remission thanks to infusions every six weeks of the biologic drug Remicade, prescribed by her doctor, Brian Bressler.

She decided to do her MBA in San Francisco at California College of the Arts, and for two years worked full-time in Vancouver, did homework every evening and commuted to California four days a month. She did stop teaching barre, opting to take up spinning instead.

Emily graduated with her MBA in May 2017. At 32, she’s now the Senior Director of Design & Construction for Saje Natural Wellness, managing the design of 19 new US stores. She is a bright bundle of energy who exudes positivity, belying the fact that she says she feels the disease has aged her.

She says her energy is not an anomaly amongst IBD sufferers. “If you come and hang out at the Remicade clinic, you’ll see so many high-functioning humans in that room. Sometimes I feel like we are running the city from there,” as she often overhears people do business deals while they wait the two-to-three hours for their infusions to complete.

According to Emily, these patients and more are part of a community that her IBD health-care professionals have created. She calls these doctors and nurses, including Drs. Bressler and Greg Rosenfeld and nurses Amanda Swain and Christina Pears, her heroes. “They are all so knowledgeable, patient and responsive. I can email them anytime with questions. I feel so taken care of. The idea of The IBD Centre of BC is amazing to me. I hope it happens.”

Emily believes that everyone’s IBD journey is different and is wary of people who shame IBD patients by judging and criticizing their lifestyle or what they eat. “The theme of this disease is finding your own voice and what works for you.” She happily shares her experience with other IBD patients, saying, “I’m not ashamed of it and I do think it needs to be talked about more.”

Our goal is to be open and providing much-needed IBD patient care by the end of 2018. For more information, please send an email to info@ibdcentrebc.ca