Tag Archives: crohns

Amber’s Year in Books 2025 — About IBD Podcast Episode 192

Looking for your next great read? Host of About IBD, Amber Tresca, gives her year-end roundup of books, with brief summaries and reflections on each. The selections cover a mix of genres, from speculative fiction and psychological thrillers to memoir and dark fantasy, often touching on themes of trauma, community, self-acceptance, and chronic illness. Amber shares how the stories resonated with her experience as a GenX mom living with a chronic illness, offering both recommendations and caveats. She also discusses practical tips for accessing books affordably through libraries and apps, and encourages exploring local bookstores or thrift shops to boost your reading journey and sense of community.

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How Storytelling Fosters Compassion for Kids with Chronic Illness – About IBD Podcast Episode 181

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A children’s book leads to this conversation, which bridges the worlds of chronic illness, creativity, and connection. I talk with MB (Britt) Mooney, author of “The Mouse Who Couldn’t Eat Cheese,” a children’s book inspired by a young woman named Alex who lived with severe Crohn’s disease. MB, a science fiction and fantasy author, stepped outside his usual genre to create a story that helps kids and families understand invisible illnesses and the power of friendship. You’ll hear behind-the-scenes insight on MB’s creative process, the lessons learned from working with Alex’s family, and the message he hopes every reader takes away—whether they live with inflammatory bowel disease or not.

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How Propel a Cure is Transforming Crohn’s Disease Research – About IBD Podcast Episode 180

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Grassroots organizations are an important part of the IBD landscape, helping fill in the many gaps in our underserved community. Amber talks with Angela Clark, president and CEO of Propel a Cure, a grassroots nonprofit that funds research projects looking for the causes of Crohn’s disease. They discuss the challenges of finding cures for IBD and the importance of supporting innovative, early-stage research. Angela explains their grant selection process, highlights current research they fund, and shares how the organization communicates complex science to the IBD community.

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From Privacy to Advocacy: Balancing Faith and Chronic Illness Featuring Hindy (Tauber) Klein – About IBD Podcast Episode 179

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Amber speaks with Hindy Klein, a member of the Orthodox Jewish community living with Crohn’s colitis. Hindy shares how she manages IBD while observing Jewish laws, discussing challenges with diet, fasting, and hospital care during Shabbat and holidays. She also talks about overcoming stigma, the importance of community support, and how her faith helps her cope. The episode highlights the need for cultural sensitivity in healthcare and the value of sharing personal stories to support others with chronic illness.

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Post-Traumatic Stress Disorder and IBD With Stephanie Brenner, LCSW, MSW

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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

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Learning to Accept IBD – About IBD Podcast Episode 140

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Being diagnosed with a chronic condition is a major adjustment. Digestive conditions like IBD (Crohn’s disease and ulcerative colitis) wind up affecting every part of our lives. Learning to accept the ways in which the disease affects life can be helpful. But it’s important to make the distinction between acceptance and complacency. Maalvika Bhuvansunder, a young adult patient living with Crohn’s disease, uses her experiences to help bring the concept of acceptance into focus for other people who are living with a chronic condition.

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About IBD Podcast Episode 128 – CDPATH: A Prognostic Tool for Crohn’s Disease

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Are we getting close to predicting how Crohn’s disease might change over time? Dr. Corey Siegel, co-director of the Inflammatory Bowel Disease Center at the Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire, and Jessica Caron, a patient key opinion leader who lives with Crohn’s, discuss a prognostic tool called CDPATH. This tool may help patient and healthcare providers understand how the disease may change over the next few years, and better inform a discussion of treatment options.

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About IBD Episode Episode 123 – Understanding Resilience With Mara Shapiro

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Does living with Crohn’s disease or ulcerative colitis make a person more resilient? And is resilience something that should be a part of management plan for people with inflammatory bowel disease (IBD) or other chronic illnesses? Mara Shapiro, healthcare journalist and Crohn’s disease patient, has had no other choice but to find a way towards resilience in her life, having lived through grief and loss early in life, followed by the diagnosis of several chronic illnesses. She provides deep insight on coping mechanisms and resilience, including the various ways we can look at these ideas to fit our own needs.

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About IBD Podcast Episode 122 – Serving in the Navy With Crohn’s Disease, With Daniel Rausa, DO

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When it comes to people with Crohn’s disease or ulcerative colitis serving in the military, the usual policy is that the two things are incompatible. The reason being that people living with an inflammatory bowel disease (IBD) need care and treatments that are incompatible with being deployed. However, sometimes there are other considerations, as Dr Daniel Rausa describes. Dr Rausa was diagnosed with Crohn’s disease while serving in the Navy, and he has advice for people who live with an IBD and want to serve or who want to pursue a medical career. He also describes why it’s so important to follow up and stay on top of transition of care when leaving military service.

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About IBD Podcast Episode 119 – The Restroom Access Act

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Have you ever been out in public and needed a toilet — but there wasn’t one available?

This has happened to everyone who lives with an inflammatory bowel disease (IBD, Crohn’s disease or ulcerative colitis), which is why so many of us have “bathroom accident” stories. Needing to use the bathroom is a basic human need, but it’s treated like an afterthought. That’s where the Restroom Access Act comes into play: a law passed in several states that allows people to request access to a toilet when they live with certain conditions.

There is no such law currently in California. That’s hopefully going to change thanks to the efforts of Ashlyn Saltzburg and Kelly Silk. Ashlyn is a teenager living with IBD and Kelly is her mom. Their effort to get a law passed in California is nothing short of heroic. Learn about how they got started on this journey to have the Restroom Access Act passed in California, and how you can help.

Send your letters of support for AB 1632 to Assemblymember Weber’s Legislative Assistant, Raymond G. Contreras: raymond.contreras@asm.ca.gov

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