Inflammatory Bowel Disease (IBD) can be debilitating for sufferers in either of its two principal forms — Crohn’s disease or ulcerative colitis. According to Dr. Juan-Nicolas Pena-Sanchez, an associate professor at the University of Saskatchewan College of Medicine and co-lead of the U of S IBD among Indigenous Peoples Research Team, there is a longstanding misconception that the condition is rare, or even unheard of, among Indigenous people.
“Previous studies that have been developed here and in New Zealand, Australia focus on the idea that there are lower rates of IBD among Indigenous people when you compare with the general population,” he said.
While he acknowledged it remains true that a smaller share of Indigenous people in Saskatchewan live with IBD compared to the rest of the province, he said health data between 1999 and 2016 shows IBD is rising steadily among Indigenous people even as the rate of new cases decreases among the general population. Overall, he said new cases of IBD diagnosed among Indigenous people in the province held firm at about 11 per year over the study period, causing the number of Indigenous patients living with the disease to more than double from 64 per 100,000 people to 142.
The exact causes of IBD aren’t known, but Pena-Sanchez said he believes it’s likely Indigenous people are experiencing an echo of what’s being seen in South America, Africa and Asia, where rising rates of IBD are thought to be linked to the arrival of more processed foods and sedentary lifestyles.
“I believe there are changes in the lifestyle of First Nations communities that are affecting all of diabetes, cardiovascular disease and now Inflammatory Bowel Disease,” he said.
The IBD among Indigenous Peoples Research Team also includes a group of patient-advocates; people of Indigenous backgrounds who have either themselves been diagnosed with IBD, or acted on behalf of a family member who was.
Patient-advocate Colten Brass, 30, of the Muskoday First Nation said he was diagnosed with Crohn’s disease about three-and-a-half years ago, but only after visiting multiple physicians.
“They just kind of shrugged it off, with the first doctor saying something like ‘just drink more electrolytes and you’ll be good,’ ” Brass said. From there, he said he had to go to two more doctors before he got the treatment he needed. He said Indigenous people face many obstacles when it comes to getting health care in Saskatchewan, with an added layer of difficulty with a condition like IBD.
“Maybe distance, or just not being taken seriously enough. You kind of have to be your own advocate,” he said.
Pena-Sanchez said Brass and the other patient-advocates are helping the team come up with ways to improve both how the health system treats Indigenous patients, and how Indigenous patients manage their own health using a culturally sensitive approach.
“You don’t hear in the general population that ‘you need to advocate for yourself to access care,’ Pena-Sanchez said. “But, you hear it among First Nations. Which is admirable —that’s great to hear— but that’s not an expectation when you have a condition that you have to advocate for the appropriate care. You just go to the doctor, ask for the care and access the care you need. But, for First Nations there is really a barrier that shouldn’t be there.”
Pena-Sanchez said the IBD among Indigenous Peoples Research Team is now seeking people of Indigenous background with IBD or their family members for a “photovoice” study, using photography to gather accounts of what it’s like to live with the condition. Anyone interested in taking part can email the research team at firstname.lastname@example.org for more details or contact Dr. Pena-Sanchez directly.
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