Ste-Justine Hospital's 'little tummies' project puts focus on inflammatory bowel diseases as kids fight stigma

MONTREAL -

A team of 12 gastroenterologists at Ste-Justine Hospital in Montreal knew they were taking on a challenge when they banded together to raise funds for a novel type of tissue bank dedicated in large part to research into inflammatory bowel diseases (IBD).

They weren’t concerned about the substantial amount of money they needed to raise -- $150,000 -- or the time it would take out of their busy days.

Rather, they wondered how they would capture the public’s attention as they explained illnesses and symptoms that are rather unpleasant and graphic and not often talked about.

“I'm a gastroenterologist. We treat GI diseases and it's about vomiting, it's about diarrhea. That's not the sexiest subject,” said Dr. Veronique Groleau. “People don’t want to talk about that.”

“But those kids are suffering. Their families suffering. We need to talk about it and we need to help research for this disease,” the pediatric specialist said.

Much to their delight, the doctors have been able to count on the support of their young patients, who by speaking out themselves, have helped crush the stigma associated with IBD.

“Now they feel proud to be able to help the cause and they're like, 'Okay, we can talk about it. It's okay.' Some of them said, 'It’s going to be in the news, my friends will know and I'm okay with it.' So we already see a little change coming,” she said.

Hampstead resident and Grade 11 student Ava Tricot who was diagnosed with ulcerative colitis when she was 12 years old, said she decided to share her experience to help others who are suffering.

“I don't want them to have to struggle through going to all different types of medications, transfusions, and all that hospital time that could be spent, like, having fun. They could make it simpler,” said Tricot.

The fundraiser, the doctors said, is one important step in that direction. It’s a virtual gala, for ‘little tummies,’ as it’s being called, taking place on Nov. 18.

YOUNGER CHILDREN BEING DIAGNOSED

There is a sense of urgency around establishing the new research-oriented tissue bank, which would be housed in an existing institute inside Ste-Justine Hospital.

One reason is that while children are usually diagnosed with IBD during their teenage years, the diseases are now being detected more frequently in younger children, and scientific advances are needed.

“I would say 4 per cent of our population of inflammatory bowel diseases are diagnosed before the age of six. So you're seeing more and more of that younger population,” explained Dr. Colette Deslandres, chief of the hospital’s gastroenterology division.

“We do not know exactly why. We are looking into a lot of the environmental factors, the microbiome (micro-organisms that live in our intestine),” said Deslandres.

The other related issue is that IBD can be difficult to treat at the outset, and that has a great impact on children.

If the first few standard drug treatments don’t work or cause too many side effects, the child’s growth can be affected during this period of trial and error.

By collecting and then analyzing a wide variety of tissues, biopsy samples, and other biological specimens, the researchers hope to eventually attack the symptoms with targeted treatment and save the child a lot of pain, tests, and hospital stays.

“What we hope to learn is personalized medication, trying to get to know what’s in the tissues of our different patients, the different markers of inflammation that might make them more prone to respond to one medication compared to the other,” Deslandres said.

The tissue bank itself will have a larger scope than other similar IBD tissue banks in Canada, which means a greater number of people could be helped down the line, according to Dr. Kelly Grzywacz, also a pediatric gastroenterologist at the hospital.

“This would be the first, collecting the tissues from all different types of patients for all different types of diseases would be a first. This is a long-term project of ours,” Grzywacz said.

“The freezers are there, the personnel are there, the equipment is there. So we need the money to start utilizing it,” she said.