A lifelong condition: How a Halifax student built her community after a chronic disease diagnosis

Oliva LeBlanc was 14 years old when she was diagnosed with ulcerative colitis, a chronic inflammatory bowel disease, and started a lifetime of treatment and care.

Throughout the first few years of experiencing symptoms, the Upper Tantallon local remembers struggling in her day-to-day.

“I was losing a lot of blood, which was affecting my blood levels and my energy levels. But also, I was just going to the bathroom so often. I would have to leave class many times a day. I would get up through the night to have to go to the bathroom,” said LeBlanc.

“There was probably like a span of three months where I didn’t sleep through the night, which is hard, really hard.”

LeBlanc said her family, friends and teachers were all incredibly supportive, but it was difficult for them to understand exactly what she was going through.

“They tried to help, but they didn’t know exactly how I was feeling, and it’s hard when you have to go to the bathroom 15 times a day,” said LeBlanc. “No one really understands that unless you go through it.”

Two years later, she was admitted to the hospital for worsening symptoms. LeBlanc underwent surgery to remove the large intestine, leaving her with an ostomy bag, an external sac connected to the bowel where the stool collects.

“It’s a hard change for a 16-year-old, I’d say, but definitely, I’d do it a million times over,” said LeBlanc. “It gave me everything back that I had lost. I didn’t realize how sick I actually was until after my ostomy.”

At 18, she decided to reverse the ostomy, while she still had access to pediatric care at the IWK Health Centre.

Without the ostomy bag, her chronic disease is invisible to the outside eye, like most people who live with inflammatory bowel diseases. That invisibility is why it is so important to share her story, LeBlanc said.

“It’s hard to know that someone might be having bowel problems or going through something,” said LeBlanc. “It affects you mentally as well. Poop and going to the bathroom, it’s stigmatized. It’s ‘oh, gross.’ But it’s something we all go through. Some people unfortunately just have to go more, and their body isn’t accommodating that, and it’s hard to speak out on when you feel like you’re alone.”

A few months later, she started her studies at Dalhousie. She looked around the society fair and didn’t see anything that she could relate to. She decided to start up her own club: the Dalhousie Crohn’s and Colitis Society.

Suddenly, she wasn’t alone.

“I was shocked by how big the community was and how much the support from one another helps, and the having someone to relate to can be such an influential part to an experience like that,” said LeBlanc.

Josh Berman, president of Crohn’s and Colitis Canada, said over 320,000 people in Canada live with inflammatory bowel diseases, like ulcerative colitis or Crohn’s disease.

The charity organization aims to fund research towards a cure, more effective treatment and to improve the lives of people living with these diseases. People who live with inflammatory bowel diseases will need consistent care from a gastroenterologist for the rest of their lives, and Berman said there are challenges to accessing care.

“Access to specialists, timely diagnosis, effective treatment can all be challenging,” said Berman, who also lives with ulcerative colitis. “Having treatments available often doesn’t necessarily mean people can access them, especially folks that live in more rural areas of Canada.”

“The healthcare systems across Canada are overburdened, and we often find that while (inflammatory bowel disease) patients will have a regular gastroenterologist, those gastroenterologists are busy and often can’t provide the real-time support that patients that are newly diagnosed or experiencing a flare up need,” said Berman.

Berman said one main challenge is that the diseases are “reactively managed” rather than proactively monitored or treated. It’s one of Crohn’s and Colitis Canada’s advocacy focuses when looking at furthering research.

“We wait for patients to get sick before we treat, and that’s not at all on the gastroenterologists and the medical system. That’s on just how much we’ve been able to invest and how we’ve been able to push forward with the tools that we have available to the healthcare system right now.”

“We now are really pushing for better, trying to proactively see you know who is more likely to develop Crohn’s disease and ulcerative colitis. How can we get out in front and start to treat patients that are diagnosed before they get sick and have treatment or have surgeries, and how can we proactively manage the side effects that come with taking significant medication to take to keep these diseases at bay for the rest of our lives?”

The daily challenges that people living with inflammatory bowel disease experience go beyond the physical, said Berman, and it’s important to support people from a mental and financial standpoint as well.

That’s why the organization has funded post-secondary scholarships for students diagnosed with these diseases since 2012. The $5,000 scholarship is given to 15 students every year and is in partnership with AbbVie, a pharmaceutical research company.

This year, LeBlanc was one of those students and received the scholarship in honour of her work founding the Dalhousie Crohn’s and Colitis Society and her continuing advocacy work in Halifax with the Nova Scotia branch of the charity.

“The scholarship has been a good boost and almost like a safety net for finance, if anything were to go wrong,” said LeBlanc. “It’s also just a big pat on the back and a boost of confidence that I’m making a positive change.”

LeBlanc said that as she balances school and working part-time, these funds will help ease the financial worry while she completes her studies. She’s currently doing an undergrad in medical sciences at the university and plans to become a doctor.