Jennifer Massie plans trips around one thing: toilets.
“I have an entire toilet GPS of all of Whitehorse programmed into my brain,” she said. “I know exactly where every public toilet is and how long it will take you to get there and the likelihood you’ll have to wait once you reach your destination.”
Producing a map of a city’s toilets may sound like a challenge for a scavenger hunt, but it’s actually “really stressful,” said Massie.
For people living with bowel diseases, it’s necessary. They have to use the washrooms often – and when they need to go, they don’t have time to wait.
Most people don’t want to talk about it, though, said Massie.
“They’re like ‘the icky illness,’” Massie said about the silence surrounding digestive health. “It’s a lot easier to talk about arthritis or heart disease over dinner than it is to talk about your rotting digestive tract and the diarrhea you had that day.”
She hopes to change this. She’s started a support group for people living with digestive diseases called The Bowel Movement. Its first meeting is Wednesday night at 7 p.m. at the Whitehorse Public Library. Massie chose the library because the building has many toilets, she said.
Massie was diagnosed with ulceratine colitis, an autoimmune disease that causes bloody and painful diarrhea, 12 years ago.
Symptoms include abdominal pain and cramping. It can lead to anemia, sometimes requiring blood transfusions. Medication can manage the symptoms, but there’s no cure.
Massie’s never attended a support group, until now.
“I chose the path of isolation and independence, and I think I made it a lot for myself,” she said. “I’ve just learned how therapeutic it can be to share your experiences with people.”
The group will be self-directed and is open to anyone with a digestive illness, whether colitis, Crohn’s disease or irritable bowel syndrome, said Massie. They may talk about managing their diseases, or they may just swap stories, said Massie.
The latter may be enough. Few people understand what living “anchored to the porcelain god” is like, she said. A good day means having between six and 10 bowel movements, she said. Stress can cause her symptoms to flare up, and when that happens, it’s hard to even leave the house, she said. She doesn’t know when flare-ups will happen, what will trigger them or how long they’ll last. Her longest one lasted nine months, she said.
“You don’t feel well,” said Massie. “You can’t function in the way that you would like to function.”
Colitis makes life messy and lonely, she said. It can also mean finding steady work is difficult. She’s been let go from jobs because she has colitis, said Massie. She chooses to tell employers about her disease, and they often want to accommodate her, she said. But because she can’t always come into work when she’s sick – and is often going to the bathroom while she’s there – she may not be able to perform as well as other employees, said Massie. It’s just not good for the employer’s bottom line, said Massie.
She’s working from home right now, on a contract position doing media relations work for Yukon Disability Employment Strategy. The program, funded in part through the Yukon Council on DisABILITY, helps people who self-identify as having a disability return to work.
Living with the disease is particularly challenging here because there’s no gastroenterologist in the territory. A specialist comes up to visit. But Massie has not seen a doctor here in the more than two years she’s lived here.
In January, she had her large intestine removed. This can reduce the disease’s symptoms. Massie was sitting at home, recovering from the surgery, when she got a call saying she had an appointment with the visiting specialist. But because she’d had her surgery, she didn’t need to go, she said.
But she still needs support. Since her surgery she drinks “more water than a camel” and takes Vitamin D-1 supplements, but she doesn’t know yet how her body will cope with stress after the surgery. And there are no nurses here specifically trained to provide after-care.
It can be hard, but the best advice Massie has for people living with digestive health problems is to laugh. That’s why she named the group The Bowel Movement, she said.
“When that euphemism popped up, it made me giggle. It still does,” she said.
“Sometimes it was such an absurd illness,” Massie said, recalling times when she would have accidents while waiting in line at the bank. “You can totally fall apart in that moment and cry and (say) ‘poor me,’ and sure, take that moment, but laugh, like, that’s pretty funny stuff.”
People can get more information about the group by contacting Massie at firstname.lastname@example.org.
Contact Meagan Gillmore at