Guts and Glory

Mina Mawani, President & CEO of Crohn’s and Colitis Canada and Dr. Laura Targownik, Clinician Scientist and Gastroenterologist at Mount Sinai Hospital in Toronto and Division Director for Gastroenterology at University of Toronto discuss some of the key findings in the ‘Impact of IBD in Canada Report’, especially related to healthcare costs associated with IBD. More specifically, we discuss a key patient issue that is pertinent today and that is forced switching or non-medical switching from biologics to biosimilars.

Crohn’s and Colitis Canada urges us all to take action! See http://action.crohnsandcolitis.ca/ for more details.

IMAGINE Network is conducting a number of Fecal Microbial Transplantation (FMT) studies. Dr. Paul Moayyedi, Lead Investigator of IMAGINE Network and Gastroenterologist at McMaster University discusses what is FMT and the evidence, to date, on fecal transplantation as a potential therapy for patients with IBD. Mr. Ziyaad Mia, who is a FMT study participant & patient shares his experiences and attitudes towards FMT as a treatment for people with IBD.

Lets talk about POOP!

IMAGINE Network is conducting a number of mental health studies in IBD patients. Studies that focus on topics like the brain-gut connection in IBD & IBS, Suicide Risk in IBD, and Stress Reduction (to name a few). We chat with Dr. Dean Tripp about what studies he has been involved in and Kim Daley, an IBD Warrior and Patient Research Partner at IMAGINE Network. Dr. Tripp discusses challenges faced by IBD Warriors like “catastrophizing”, “psychache”, and the perceived burden people with IBD think they are on other people. All of which are factors that put patients ‘At Risk’. We also learn about “Post-Traumatic Growth” and what/how interventions can help someone on their journey. Kim Daley shares her personal perspective on mental health, specifically, how her IBD has impacted her mental health and how mental health affects her IBD.

Why is Patient Oriented Research so important? What is the IMAGINE Network? What is the CIHR SPOR and how is it helping patients with IBD? What is the role of patient partners in IMAGINE? Answers to all these questions and more on this episode! We chat with Aida Fernandes, Executive Director, IMAGINE Network; Sandra Zelinsky, Patient Research Partner/Co-lead of Patient Engagement Working Group, IMAGINE Network; and Nancy Mason MacLellan, Manager of Strategies for Patient Oriented Research (SPOR) at Canadian Institutes of Health Research (CIHR).

For more information on how you can get involved with research and to read more about these amazing groups, check out the following websites: http://imaginespor.com/ and http://www.cihr-irsc.gc.ca/e/45854.html.

Diagnosed with ulcerative colitis in 2015, Effie Siamalekas takes us through her diagnosis and navigating the many questions and uncertainty she experienced. She discusses her journey of educating herself about ulcerative colitis and taking her health into her own hands. Being admitted to hospital, steroids, 5-ASA, blood transfusions, iron infusions, biologics, missing out on social experiences…a journey all to familiar for many IBD Warriors. She explains her choice to turn her attention to her diet and adopting a vegan lifestyle and how that has given her personal comfort and relief.

You can also check out more of Effie’s story on her self titled YouTube channel!

IBD Warrior, Lyndsay Hunter-McWaters, chats with us about her journey. Diagnosed with UC at 14, later diagnosed with Crohn’s at 25, ileostomy at 35, and all the details in between. She openly shares her experiences as a teenager struggling with her diagnosis and illness and how that impacted the path she traveled for awhile. However, despite all the challenges, Lyndsay has found the ‘glory’ in her journey and now uses her experiences to help inform her approach with youth today. Hear her story of identity, strength, and determination; an episode for IBD Warriors and their loved ones.

Continue to follow her story on Instagram @notorious_ibd.

This is Part Two of our episode with the resilient, Montana Skurka who is an IBD Warrior, Health & Wellness Coach, and Yoga Teacher. She continues to share her personal experiences with childhood cancer, eating disorders, anxiety, and ulcerative colitis. We share how we often feel the need to “be strong” and continue with life’s responsibilities even when it’s not expected of us. Montana discusses her experiences and struggles with surgery for a total colectomy and ileostomy, 2 weeks later an emergency surgery because of a perforated duodenal ulcer, and eventually a third surgery for a j-pouch. We also talk about how chronic illness, hospital stays, medications, etc. directly impacts mental health and how our medical system is set up in a way that does not support people with the mental health struggles that come with being hospitalized and living with chronic or long-term illness.

Check out her website https://montanaskurka.com/ and podcast, ‘Life Support’.

Montana Skurka is an Integrative Wellness Educator who is dedicated to providing patients with guidance, education and support as they overcome the unique challenges of chronic illness. In this episode (Part 1 of 2), Montana opens up about her personal life struggles with illness, including childhood cancer, eating disorders, anxiety, depression, and eventually a diagnosis of ulcerative colitis as a teen which resulted in her needing to have surgery for a j-pouch. We discuss what we feel, are the short falls of our medical system, especially surrounding chronic illness and trauma and its impacts on mental health. Montana courageously shares her struggles with her health both physically and emotionally.

Hear the rest of Montana’s story of resilience and self-advocacy in Part 2 of this episode. In the meantime, check out her website and podcast at https://montanaskurka.com/

Nathan Pember is a fellow IBD Warrior who is not afraid to advocate for himself and others with IBD. What should you do if you aren’t happy with the treatment you receive at a medical facility? Nathan will tell you! He shares his personal journey with Crohns Disease that began at the age of 14. In 2017, Nathan had two operations, a resection and ileostomy, and then had the ileostomy reversed a few months later. Like many of us, his battle is more than just physical symptoms but knowing how to cope mentally and emotionally as well. Listen to his story of resilience and strength. Together, let’s end the stigma surrounding IBD!

It’s almost that time of year again, Gutsy Walk time! Every year, Crohns and Colitis Canada hosts a 5 km walk at over 60 locations across Canada! This year we walk on Sunday, June 2nd, 2019! Have you signed up yet? Want to be a sponsor? Maybe you want to be a volunteer? Check out this episode to learn more about this amazing walk and how you can get involved! Gutsy Walk raises money not only to help find a cure for us IBD Warriors but also to fund research for new medications and advocacy programs that help make our day-to-day lives easier.

Check out www.gutsywalk.ca for more information!