Tag Archives: community

How to Eat Well When Chronic Fatigue Makes Cooking Impossible

About IBD Podcast Episode 210 With Nicholas Kelly, RD

Cystic fibrosis (CF) is thought of as a lung disease, but it affects the entire body. Amber Tresca speaks with Nicholas Kelly, MS, RD—a registered dietitian, public speaker, and cystic fibrosis advocate. His diagnosis is a result of his mother’s advocacy and research. Nick describes how he balances wanting to fit in with his determination to stand out, how he navigates chronic illness disclosure in the workplace, and his “triple minority” experience within the CF community. Plus, Nick shares practical nutrition tips to help you rethink your relationship with food.

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Powerful Lessons: How Women Experience Life With IBD

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Featuring Alicia Aiello of Girls With Guts – About IBD Podcast Episode 207

Alicia Aiello, president of Girls With Guts, shares her journey with IBD, which began in childhood. She discusses major surgeries, including a proctectomy that resulted in an unexpected loss of her fallopian tubes and an ovary, and the early onset of perimenopause. Alicia opens up about navigating rectovaginal fistulas, feeling dismissed, and the importance of knowing when to switch providers.

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Brown Note: Helping People with IBD Find Hope and Support With Andrew Giffin — About IBD Podcast Episode 204

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Amber Tresca talks with Andrew Giffin, a product manager in Toronto who was diagnosed with Crohn’s disease at 19 after years of symptoms in high school. Andrew shares his experience navigating three major surgeries, adjusting his career path away from law enforcement, and learning to manage stress as part of living with a chronic illness. He also discusses developing apps, including Brown Note, a free, anonymous peer-support app for people with digestive diseases. Brown Note was inspired by his own feelings of isolation while preparing for his third surgery and is available on Apple, Android, and the web.

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Hospitals Are Investing in AI: What You Should Know

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By now, you’ve heard lots about artificial intelligence (AI) in the news, from friends and family, online, and even at work. You may even be impacted by AI in a significant way, especially if you’ve been laid off from your job, or if you’re a social media manager.

Or: if you’re a patient.

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How to Bring an Intention to Your 2026 – About IBD Podcast Episode 193

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We explore the idea of setting intentions instead of resolutions in the new year, which are more adaptable for people living with IBD. Amber shares clips from guests who explain their intentions, such as prosper, discipline, generosity, consistency, and the importance of taking breaks. Each guest highlights how intentions guide actions and mindset, emphasizing personal growth, resilience, and kindness, despite unpredictability.

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How to Be Resilient (Even if You’re Sick of It)

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I’m a little tired of being “resilient,” aren’t you?

I’m told I’ve developed resiliency, and that’s how I’ve made it through the difficulties with my illnesses (ulcerative colitis and others) and their treatments, such as surgeries. I don’t really think of it that way, however. My perspective on resilience is that I don’t see how I could exist without it.

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The Truth About Surviving IBD and Incontinence – About IBD Podcast Episode 190

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Katryna Loewen, a registered nurse diagnosed with ulcerative colitis in 2020, shares her journey through severe flare-ups, incontinence, and her decision to have a colectomy and ileostomy in 2024. She discusses the emotional and physical challenges of living with IBD, the stigma of ostomies, and how these experiences shaped her life, relationships, and career. Katryna also describes managing her mental health, planning her wedding, and preparing for motherhood, offering hope and practical advice to others with IBD.

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The Truth About Stigma and Acetaminophen Use During Pregnancy Featuring Mariah Leach, JD, MS

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Amber and Mariah discuss how women with chronic illnesses cope with advice on medication use in pregnancy—especially in light of the confusion around acetaminophen. Mariah shares her experiences with rheumatoid arthritis and pregnancy, focusing on changes in medication safety data. They talk about the pressure, stigma, and lack of support for pregnant women, the need for nuanced guidance, and provide resources.

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How to Become an Effective Patient Advocate

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Living with inflammatory bowel disease (IBD)—including Crohn’s disease and ulcerative colitis—is an isolating and overwhelming experience. Patient advocacy is a powerful way to channel these challenges into meaningful change for the entire IBD community. In episode 186 of About IBD, Kelly Dwyer and I shared our journeys, practical advice, and insights on how anyone can become an effective advocate, regardless of experience or background.

Here you’ll find a roadmap for patients, caregivers, and allies who want to make a difference in public policy.

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