Saskatchewan’s first Pediatric IBD Day brings families together

Dallas was only two years old when he was diagnosed with a disease he will carry for the rest of his life.

For his mother, Crystal Diederichs, the diagnosis — Inflammatory bowel disease, commonly called IBD — was frightening, but receiving answers early also gave her hope.

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“He will have it his whole life, and it’s scary, but also it’s comforting knowing that he did get that early diagnosis,” Diederichs said.

Dallas and his family will be among those attending Saskatchewan’s first Pediatric IBD Day today at Saskatoon’s Wanuskewin Heritage Park. The invitation-only event will bring children living with inflammatory bowel disease, their families and members of their care teams together in one place.

IBD is a lifelong condition that includes Crohn’s disease and ulcerative colitis. Saskatchewan has one of the highest rates of IBD in the world.

Dr. Fatima Hussain, a pediatric gastroenterologist who leads the pediatric IBD program at Jim Pattison Children’s Hospital, said the province had almost no dedicated pediatric IBD program more than two years ago, which often created an additional burden for families.

“They were travelling out of province to get care,” Hussain said.

The province now has a multidisciplinary pediatric IBD team offering specialized care in Saskatchewan.

“Two years later, we are a full IBD team,” Hussain said. “We are launching this for the first time as a community event for the whole family to come together.”

She said the impact of an IBD diagnosis can reach well beyond the child.

“IBD is not only one person’s diagnosis,” Hussain said. “It comes with appointments. It comes with missing school, missing work and a lot of worry for the family.”

Diederichs understands the condition from the perspectives of both a patient and a parent. She was diagnosed with Crohn’s disease in her early 20s after initially being told her symptoms were likely caused by irritable bowel syndrome.

Her symptoms later became worse, eventually requiring surgery and a change in medication. She said she has now been in remission for almost 10 years.

Dallas began showing symptoms at about 18 months old and underwent his first colonoscopy shortly after his second birthday.

Diederichs said her family, who live in rural Saskatchewan about an hour from Saskatoon, was fortunate that specialized care was available close to home.

“We are so fortunate that we don’t have to go out of province, that we can have it here in Saskatoon,” she said. “We can kind of have that benefit and have that hope for Dallas that he is in good hands.”

Diederichs said the emotional strain was particularly difficult before her son’s diagnosis. Every diaper change brought uncertainty about what she might find, while test results and medical appointments added to her anxiety.

Dallas, however, does not know life without those appointments.

“He goes to his infusion appointments, he goes for blood work, and he literally puts out his arm to get blood drawn,” Diederichs said. “He walks into his appointments with confidence.”

She said treatments and medical tests have become another part of his routine.

“It is just another day for him,” she said.

Hussain said IBD occurs when the immune system reacts to the digestive system and causes inflammation. Symptoms can include diarrhea, blood in the stool, abdominal pain and vomiting.

The disease can also interfere with growth during a critical period of a child’s development. It may affect mental health, learning and school attendance.

“We don’t treat the disease only; we treat the healthy development of the child and also the family,” Hussain said. “We involve them in the care. We personalize their treatment plans.”

Treatment can involve gastroenterologists, dietitians and pharmacists, along with specialists addressing complications involving the joints, skin or other parts of the body. Some patients may also require surgery.

Hussain said the team’s responsibility is to bring those different areas of care together so children can have the same opportunities as their peers.

Saturday’s event will feature discussions about choosing appropriate food, packing school lunches and understanding IBD medications. Children will be able to visit stations designed to help them learn about medication, needles and medical appointments.

There will also be age-specific activities, story times for younger children and discussions led by teenagers about growing up with IBD.

Members of Saskatchewan’s adult IBD team will participate to help families understand what happens when pediatric patients transition into adult care.

The day will also include trail hikes, dancing, a magician and face painting. The Jim Pattison Children’s Hospital Foundation and Crohn’s and Colitis Canada are supporting the event and will provide resources to families.

Hussain said the goal is to help children and families realize they are not facing the disease alone, while giving them a voice in how pediatric IBD care develops in Saskatchewan.

Diederichs described the inaugural gathering as both a celebration and a step forward.

“It’s a day of hope,” she said. “We’re here, we’re doing it, and we’re gonna do it together.”