Reflections of a Patient Attending the Meeting of the Minds Conference

Peter smiling
Meeting of the Minds is an annual assembly of world-class inflammatory bowel disease (IBD) clinicians and researchers, mostly from Canada. Day one, entitled “Mentoring in IBD XXIII” was primarily aimed at gastroenterologists and IBD nurses seeking to stay up-to-date with the most cutting-edge, evidence-based practices in IBD care. On day two, “Canada Future Directions in IBD” featured the latest advances in research that continue to revolutionize our understanding of IBD.

Below is the perspective of Peter Dobranowski, a patient, volunteer, and researcher in training.

Introduction

My journey with Crohn’s disease began when I was 15—three years later, I experienced my worst flare-up. I had to use the washroom about 20 times during exams and I still recall the dread I felt every time I asked an invigilator to escort me to the washroom. Ultimately, unable to fully concentrate during classes or exams, and with no hope of finishing my degree, I withdrew from my program. At my worst, I felt alone, and hopeless, until one miraculous medication put me into remission.

Since then, I’ve been able to leverage my good health to complete my Bachelor’s degree in nutrition, a Master’s degree studying the inflammatory bowel disease (IBD) microbiome, and I am currently working on my PhD developing new treatments for IBD. I’ve also spent time outside the lab working within the IBD community: through Crohn’s and Colitis Canada, the Invisible Conditions Conference, and working as a patient engagement researcher. Specifically, by working closely with Crohn’s and Colitis Canada, I’ve been able to facilitate support meetings as a chapter president, advise the organization from a volunteer perspective, help lead educational events for young adults and attend the IBD focused conference, Meeting of the Minds. Over my eight years of volunteering with them, I’ve seen new programs enabling students with IBD to write exams with access to private washrooms, national support groups to feel less alone, and new treatments emerge that have worked miracles for others. I’ve also met countless others with IBD who have overcome so much and continue to motivate me to study IBD. With this perspective, I’m happy to share a few things I learned from Meeting of the Minds 2022.

Meeting Overview

Being my first time attending the Meeting of the Minds, it was surreal to sit in a room among hundreds of doctors and nurses who care for individuals with IBD. On both days, lectures touched on high-level concepts anyone with IBD could appreciate, before digging into the contradictions that inevitably emerge when researching a complex disease. I am grateful to Crohn’s and Colitis Canada and their sponsors for their support of this event, which no doubt planted seeds of ideas that will grow into new knowledge. Here, I want to focus on advances in mental health care, understanding the causes of IBD, and novel treatments.

Mental Health

Dr. Lesley Graff, Professor at the University of Manitoba, began the lectures by talking about caring for mental health and IBD. She opened the session by expressing her gratitude to see mental health prioritized at the conference. I think it was an important statement to make explicitly, given how deeply embedded mental health is in the IBD experience. Shame, isolation, and hopelessness are feelings I don’t want anyone else to feel during their IBD journey. While detailing mental health and resilience as a central facet of overall health, she reported that approximately 2/3 of IBD patients suffer from an undiagnosed anxiety disorder, in some part because clinicians often believe they ask their patients about their mental health enough, but patients don’t think so. This statistic is on par with what I would have guessed, given the stories I’ve heard from my peers. Then, in a room full of clinicians, she followed with a plea, “You’re in the position to proactively bring up mental health.” I could imagine my peers cheering her on had they been sitting in the room with me. Later, she advocated for patients to reach out to Crohn’s and Colitis Canada chapters “to feel less alone.” This statement flooded me with emotion. Since attending my first chapter meeting in 2014, I’ve made some of the best connections of my life. While we share a diagnosis, we also share laughs, tears, and fist pumps anytime someone announces their latest colonoscopy revealed remission. I always carry the memory of a fellow volunteer stating she feels like “we’re family.” So, hearing one of the best mental health researchers in Canada advocate for Crohn’s and Colitis Canada chapters in a room full of clinicians was nothing short of jubilating.

Causes of IBD

On day two of the meeting, Drs. Ken Croitoru, Mike Surette, and Eytan Wine took turns exploring the host and microbial mechanisms that underlie IBD. Since being diagnosed with IBD, the idea of diet and the microbiome being important drivers and protectors of disease have been more than just a “gut feeling” – it was what pulled me into research. Dr. Croitoru (Professor, University of Toronto) spoke on behalf of Dr. Raja Atreya, highlighting the entangled roles of immune, microbial, and genetic factors mediating disease. I cannot overstate the complexity of the causes of IBD, but his work leading the Genetic Environmental Microbial (GEM) project seeks to reveal important clues. Similarly, Dr. Surette (Professor, McMaster University) and Dr. Wine (Associate Professor, University of Alberta) both shared fascinating insights from a microbiological perspective. Between the two, they commented on the role of specific microbes in inciting inflammation. For instance, one microbe can exert a helpful or harmful effect depending on the natural by-products they are swimming in within our guts, which can be affected by our diet. While these discoveries may lead to new treatments, Dr. Surette remarked, “We are probably only just seeing the tip of the iceberg of our understanding [of microbes and IBD].” Since no current IBD treatments target the microbiome (apart from fecal microbiome transplants), this will remain a hotly researched area.

Novel Treatments

The last speaker I wish to highlight is Dr. Megan Levings (Professor, University of British Columbia). Dr. Levings and her team are working to introduce “cells as living drugs” for treating IBD. This modality involves teaching powerful anti-inflammatory immune cells to hone in on sites of inflammation, extinguish it, and activate tissue repair. While preliminary data appears promising, a key challenge is that the Canadian healthcare system does not yet possess the infrastructure to enable it at scale. Relatedly, Dr. Jens Vent-Schmidt led a survey that I participated in a few years ago, which revealed that most IBD patients would be willing to try this type of therapy, but not all. I’ve known many people who choose to treat their IBD naturally without medication. Typically, they are tired of cycling through drugs that don’t work for them, while suffering from new side effects each time. The development of new therapies like this provides patients who have lost hope with a chance of improved quality of life.  
 
I was able to chat with Drs. Harry Brumer and Laura Sly, (UBC) who are Crohn’s and Colitis Canada-funded researchers, developing another new medical technology. Together, they are investigating the “GlycoCage” platform, which can deliver a cargo of medications directly to the gut. Some drugs are highly effective at treating IBD, but doses are selected based on how severe their side effects are. By minimizing non-specific absorption (and thus side effects), GlycoCage enables using higher drug concentrations to target inflammation. Once again, I can’t wait to see these incredible and creative therapies help patients for whom traditional medications fail.

Final Remarks

On a personal note, my greatest challenge living with IBD is the prospect of my disease returning. I’ve been privileged to complete an advanced education and cherish good health for a long time. Still, my disease experience has left me in a state of hypervigilance. Small cramps I feel throughout the day trigger me to wonder, “Is today the day?” Having a broader arsenal of treatment options means a greater reassurance that if it does happen, I can push the disease back into remission.
 
It’s not often you get to shake hands with your heroes. It’s also not often you can peer at the frontier of knowledge of a disease that affects yourself and countless friends across the country. Importantly, pushing this knowledge frontier forward is a massive collaborative undertaking, driven by the tireless efforts of teams of scientists, and fueled by the funds raised by volunteers across the country.
 
To echo the closing comments of Dr. Remo Panaccione (Professor, University of Calgary), the camaraderie and friendship I saw across the Canadian IBD researcher community is just amazing. I would extend this amazement to the patient and volunteer community, too!
 

  • Canada has among the highest incidence rates of Crohn's and colitis in the world.
  • 1 in 140 Canadians lives with Crohn’s or colitis.
  • Families new to Canada are developing these diseases for the first time.
  • Incidence of Crohn’s in Canadian kids under 10 has doubled since 1995.
  • People are most commonly diagnosed before age 30.

Other Areas of Interest