About IBD

What is being done to help prevent inflammatory bowel disease (IBD) in the next generation? The Genetic, Environmental, Microbial (GEM) Project is a research study from Crohn's and Colitis Canada (CCC) focused on finding possible causes for Crohn’s disease by following healthy people who are at a higher risk for developing the disease. To talk about GEM, Amber interviews CCC volunteer Chantel Wicks. Chantel is the chapter president for the Durham Region in Ontario and the Chair of their Gutsy Walk, which is a fundraiser and event that takes place every year in the first weekend of June. Learn more about how the GEM Project is uncovering important information on the development of IBD and how to get involved in CCC and The Gutsy Walk.

Find Chantel Wicks on the Guts and Glory Podcast at:

• Web: https://gutsnglory.ca/
• Facebook: @GtsNGlry
• Twitter: @GtsNGlry
• Instagram: @gtsnglry

Find Crohn's and Colitis Canada at:

• Web: https://crohnsandcolitis.ca/
• The Gutsy Walk: https://gutsywalk.ca/
• Facebook: @getgutsycanada
• Twitter: @getgutsycanada
• Instagram: @getgutsycanada

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD152

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Did you notice that suddenly one year you started paying more for your healthcare? Crohn's disease and ulcerative colitis are sometimes treated with medications that are expensive. Manufacturers create programs to help patients afford these drugs. In the beginning, these payments from assistance programs counted toward a yearly health insurance deductible. Then, suddenly: they stopped counting. Overnight, patients found themselves responsible for more costs, while insurance carriers received what amounts to double payments. A 2023 court ruling says that this practice should be reversed again, but it's not happening. Amber McCown tells her story of how a copay accumulator program took her by surprise and why she's partnering with the HIV+Hepatitis Policy Institute and working with legislators and agencies to advocate for change.

• Aimed Alliance. How a Loophole in the Patient Protection and Affordable Care Act Can Impact Access To Your Necessary Treatments: https://aimedalliance.org/wp-content/uploads/2022/07/Aimed-Alliance-Non-EHB-Fact-Sheet-FINAL-1.pdf
• Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2021; Notice Requirement for Non-Federal Governmental Plans: https://www.federalregister.gov/documents/2020/05/14/2020-10045/patient-protection-and-affordable-care-act-hhs-notice-of-benefit-and-payment-parameters-for-2021
• Copay Accumulator Programs: https://cga.ct.gov/2024/rpt/pdf/2024-R-0034.pdf?t=1713267305928
• State Insurance Departments: https://content.naic.org/state-insurance-departments

From the HIV+Hepatitis Policy Institute: In 2022,the HIV+Hepatitis Policy Institute, two diabetes groups, and individual chronic disease patients filed a lawsuit in the U.S. District Court for the District of Columbia challenging the federal rule that allowed "copay accumulators." Insurers use "copay accumulator" programs to avoid counting the value of copay coupons that patients get from drug manufacturers toward a patient's deductible and out-of-pocket costs -- effectively double charging the patients. In 2023,the court ruled in favorof the plaintiffs and struck down the federal rule that had allowed health insurers to avoid counting copay assistance from drug manufacturers toward a patient's out-of-pocket cost. But the government isn't enforcing the court's ruling, so patients are still subject to copay accumulator schemes.It's bad enough that the federal government is effectively ignoring a court ruling. Far worse is the fact that patients are still being unjustly subjected to copay accumulators that prevent them from being able to afford their prescription drugs as a result. Patients need the federal government to issue a new rule ASAP. Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD151 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

People with IBD are more likely to live with anxiety, depression, or other mood disorders than people who don't live with one of these conditions. For that reason, caring for mental health is as important as caring for physical health. But it doesn't always work out that way, as patients may not know how important their mental health is to their physical health, or may not have access to a mental health professional. Abri Bernstein shares her personal journey with ulcerative colitis (UC) and how somatic psychotherapy helped her cope with living with the disease. Abri explains somatic psychotherapy as a holistic approach to healing that focuses on the body and nervous system regulation. She describes various modalities, such as somatic experiencing, sensorimotor psychotherapy, and acceptance and commitment therapy (ACT), emphasizing the importance of addressing trauma stored in the body for healing to occur.

Resources and information discussed in this episode:

• What Is Somatic Therapy?
• Trauma and the Nervous System: A Polyvagal Perspective
• Polyvagal Institute
• The Trauma Foundation
• Bonaz B, Sinniger V, Pellissier S. Therapeutic Potential of Vagus Nerve Stimulation for Inflammatory Bowel Diseases. Front Neurosci. 2021;15:650971. Published 2021 Mar 22. doi:10.3389/fnins.2021.650971.
• Polyvagal Theory: A Science of Safety

Find Abri Bernstein at:

• Web: Healing With Abri
• LinkedIn: Abri Berstein
• Email: [email protected]

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD150

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Diagnosed with attenuated familial adenomatous polyposis (AFAP), retired Navy veteran Dan "Dry Dock" Shockley shares his remarkable journey of service, diagnosis, and advocacy. Following his diagnosis, Shockley became a passionate advocate for early detection and reducing the stigma associated with living with an ostomy. He emphasizes the importance of proactive medical care and maintaining a positive attitude in the face of adversity. Through his advocacy work and personal journey, Shockley serves as an inspiration, demonstrating resilience, determination, and a commitment to making a difference for others. Find Dan "Dry Dock" Shockley at: Twitter: @Dryshockley Instagram: @DanDryDock LinkedIn: @Dan Dry Dock Shockley Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD149 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

We can hold two truths: Crohn’s disease is funny. It is also not funny. I speak with Matt Nagin, who has many talents, but we focus on his work as a comedian and actor living with Crohn’s disease. Our discussion focuses on how people need laughter and comedy in their lives. Yet, living with an illness like inflammatory bowel disease (IBD), it can be challenging to find those comedic moments. Especially when most people don’t know what IBD is, and even among those who do, they kind of don’t want to hear about it sometimes. Get tips from Matt on how to form a sense of humor about illness, keep people from getting burned out on you, and think outside the box when it comes to symptoms. Find Matt Nagin at:

• Web:mattnagin.com
• Facebook: @naginplease
• Twitter: @naginplease
• Instagram: @naginplease
• TikTok: @naginplease
• LinkedIn: Matt Nagin

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• LinkedIn: @macooney
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

What did you read over the past year? If you made a reading goal: did you hit it? The books I read in 2023 included biographies, fantasy, fiction, and romance. Plus, I had several authors who live with Crohn’s disease or ulcerative colitis on the show this year, so I read their books as well. Hear more about some of the books I enjoyed in 2023, how you can hear more from authors with IBD, and ways that you can hit those reading goals this year.

IBD Author Episodes:

• The Plant-Based Crohn’s and Colitis Cookbook –About IBD Podcast Episode 127
• Up and Adam: A Patient’s Experience on Winning with IBD—About IBD Podcast Episode 130
• I Pooped My Pants With April Michelle Harris – About IBD Podcast Episode 133
• Positivity Beats IBD With Josef Miller – About IBD Podcast Episode 143

Books mentioned in this episode:

• Why Not Me? - Mindy Kaling
• Yes Please - Amy Poehler
• Bossypants - Tina Fey
• Orange Is the New Black - Piper Kerman
• Spare - Prince Harry
• Born With Teeth - Kate Mulgrew
• Where the Deer and the Antelope Play - Nick Offerman
• Fan Fiction - Brent Spiner, Jeanne Darst
• Wrong Place Wrong Time - Gillian McAllister
• Tomorrow, and Tomorrow, and Tomorrow - Gabrielle Zevin
• The Dead Romantics - Ashley Poston
• Where the Crawdads Sing - Delia Owens
• The House in the Pines - Ana Reyes
• The Testaments - Margaret Atwood
• The Heart Goes Last - Margaret Atwood
• Maid - Stephanie Land
• Class - Stephanie Land
• Under the Whispering Door - TJ Klune
• In the Lives of Puppets - TJ Klune
• Long Way Down - Jason Reynolds
• Red at the Bone - Jackeline Woodson
• Hatchet - Gary Paulsen
• The Plant-Based Crohn’s and Colitis Cookbook - Helena Rose Murphy
• The Purple Rose - Josef Alexander Miller
• I Pooped My Pants - April Michelle Harris
• Up and Adam: A Patient's Experience on Winning with IBD - Adam Finkelstein

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• LinkedIn: @macooney
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

A diagnosis of inflammatory bowel disease (Crohn’s disease, ulcerative colitis, IBD) affects the entire family. When it’s a child that’s diagnosed, it changes so many things and brings a host of challenges. Families experience many unmet needs related to IBD. My guest is Lisa Fournier of IBD Connect. Lisa is the mother of two children who live with IBD. Her experiences in helping them manage IBD at different stages in life compelled her to be a support for others. She worked with her local hospital to start a support group and eventually founded IBD Connect. Learn about the programs IBD Connect offers and how the community can support their important mission. Concepts on this episode:

• Very Early Onset Inflammatory Bowel Disease (VEO-IBD)
• UMass Chan Medical School Center for Applied Nutrition
• Methicillin-resistant Staphylococcus aureus (MRSA)

Find IBD Connect at:

• Instagram: @ibdconnectinc
• Facebook: @IBDConnectInc
• Web: IBD Connect, Inc.

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD146 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

My guest is Stephanie Brenner of Chronic Illness Psychotherapy. Stephanie is a Licensed Clinical Social Worker who has experience in working with clients with chronic illnesses. She has also taken on a variety of roles in GI space, including previously serving on both the advisory team for the Pediatric Crohn’s Guidebook and the recruitment committee for the Rome Foundation’s GastroPsych organization.

Stephanie lives with Crohn’s disease and a permanent ileostomy and is also a cancer survivor. I asked her to help us better understand PTSD and PTS as they relate to having a chronic illness like IBD. She defines PTSD and why it can happen with IBD, what some of the signs and symptoms might look like, and what patients can do to address their mental health.

Episode transcript and more information at: https://bit.ly/AIBD145

Find Stephanie Brenner, LCSW, MSW at:

• Web:https://chronicillnesspsychotherapy.com/

• Facebook: https://www.facebook.com/chronicillnesspsych

Concepts discussed:

• An Overview of Rectovaginal Fistula:https://www.verywellhealth.com/rectovaginal-fistula-overview-4587356

• An Overview of Anal or Rectal Abscess:https://www.verywellhealth.com/perirectal-abscess-2328821

• Proctectomy Surgery for Inflammatory Bowel Disease:https://www.verywellhealth.com/proctectomy-surgery-for-inflammatory-bowel-disease-4122490

• Sacha McBain, PhD:https://www.linkedin.com/in/sachamcbain/

• What Is Post-Traumatic Stress Disorder (PTSD)?:https://www.verywellhealth.com/what-is-ptsd-5084527

• The Psychology of the Sickbed:https://www.amazon.com/Psychology-Sickbed-J-H-Berg/dp/B004NMY0RK

• Taft TH, Quinton S, Jedel S, Simons M, Mutlu EA, Hanauer SB. Posttraumatic Stress in Patients With Inflammatory Bowel Disease: Prevalence and Relationships to Patient-Reported Outcomes. Inflamm Bowel Dis. 2022;28(5):710-719. doi:10.1093/ibd/izab152

• What Is EMDR Therapy?:https://www.verywellhealth.com/emdr-therapy-5212839

• Understanding Diaphragmatic Breathing:https://www.verywellhealth.com/diaphragmatic-breathing-how-to-benefits-and-exercises-5219974

• All About Grounding: Techniques to Connect to Nature:https://www.verywellhealth.com/grounding-7494652

• Self-Report PTSD Checklist for DSM-5 (PCL-5):https://www.ptsd.va.gov/professional/assessment/documents/PCL5_Standard_form.pdf (other checklists https://www.ptsd.va.gov/professional/assessment/adult-sr/ptsd-checklist.asp#obtain)

• Rome Foundation:https://romegipsych.org/

• Samantha Irby:https://www.samanthairby.com/

• Tig Notoro:https://tignation.com/

• Hannah Gatsby:https://hannahgadsby.com.au/

• Cameron Esposito:https://www.instagram.com/cameronesposito/

Find Amber J Tresca at:

• AboutIBD.com: About IBD

• Verywell: Verywell Health

• Facebook: @aboutIBD

• Twitter: @aboutIBD

• Pinterest: @aboutibd

• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer

• Instagram: @maccooneycomposer

• Web: Cooney Studio

• LinkedIn: @macooney

• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

As an assistant professor of medicine in the Division of Gastroenterology at the University of Miami Miller School of Medicine, and the Director of Translational Studies for the Crohn’s and Colitis Center, Dr. Damas sheds light on the misconception that IBD only affects certain ethnicities. Her extensive research explores the connection between of environment and genetics in the development of IBD, with a special focus on its impact on immigrants from Latin America. Dr. Damas shares insights into the challenges of studying the role of diet in IBD, revealing key findings from her research and explaining how her work is reshaping our understanding of these diseases.

Find Oriana Damas, MD at:

• University of Miami: Oriana Mazorra Damas, M.D.
• Twitter: @oridamas

Dr Damas' Research:

• The Current State of Care for Black and Hispanic Inflammatory Bowel Disease Patients
• Social barriers influence inflammatory bowel disease (IBD) outcomes and disproportionally affect Hispanics and non-Hispanic Blacks with IBD
• Low-Fat, High-Fiber Diet Reduces Markers of Inflammation and Dysbiosis and Improves Quality of Life in Patients With Ulcerative Colitis
• Ethnicity influences risk of inflammatory bowel disease (IBD)-associated colon cancer: a cross-sectional analysis of dysplasia prevalence and risk factors in Hispanics and non-Hispanic whites with IBD

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD143

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

What is it like to be a teen living with Crohn’s disease? If you’re like Josef Miller, you channel the challenges of the diagnosis and management of IBD into action. Josef has written a book about his experiences, entitled "The Purple Rose," and created an initiative called "Positivity Beats IBD," which creates inspirational cards for people living with IBD and other conditions. Learn about Josef's journey with Crohn's, his multicultural background, and how and why he decided to write a book.

Find Josef Miller at:

• Instagram — Positivity Beats IBD: @positivity_beats_ibd
• Instagram — Josef Miller: @josefjm13
• Book: The Purple Rose
• Book: The Axolotl That Lost Himself
• Connecting to Cure

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD143

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.