How to Eat Well When Chronic Fatigue Makes Cooking Impossible With Nicholas Kelly MS, RD
About IBD
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. Chapters: 00:00...
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Why Your Symptoms Get Dismissed (and How to Be Heard) — With Morgan Check, NP
About IBD
Pediatric GI Nurse Practitioner Morgan Check shares her journey living with Crohn’s disease, navigating a diagnosis change, emergency surgery, and motherhood. She uncovers the challenges facing women with IBD, from bone density and fertility to dismissal in clinical settings, and gives actionable tips for effective self-advocacy. Transcript, video, and more at: This episode is sponsored by . What you’ll learn: The challenges faced during the path to motherhood, including fertility issues and pregnancy complications. The impact of IBD on women's health, including fertility, bone density,...
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The Truth About How IBD Affects Families With Adam and Brandon Sikes
About IBD
Adam Sikes was diagnosed with ulcerative colitis at 18 and later with stage 1 colon cancer. Along with his son Brandon, Adam shares how his family supported him through decades of illness, surgery, and recovery with a J-pouch. Adam and Brandon highlight how IBD affects families, the importance of screening, and the power of community support through groups such as Connecting to Cure. Transcript and more information available at: Chapters: [00:02:12] — Adam discusses his diagnosis of ulcerative colitis at age 18. [00:04:05] — Adam describes his colon resection surgery after a...
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Powerful Lessons: How Women Experience Life With IBD Featuring Alicia Aiello of Girls With Guts
About IBD
Episode transcript and more information at: https://bit.ly/AIBD207 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. What you’ll learn: The impact of inflammatory bowel disease (IBD) on women’s health. Why proctectomy surgery might be used, how it...
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Hidden Ways IBD Affects You Over a Lifetime With Puja Khanna, MD
About IBD
The truth about inflammatory bowel disease (IBD) is that it goes beyond the gut. In this first ever live recording of About IBD, Amber talks with Dr. Puja Khanna from Cedars-Sinai to explore the extra-intestinal impacts of IBD, from skin conditions and eye inflammation to debilitating fatigue. Learn how sex-specific factors affect women and why building a multi-disciplinary care team is the best strategy for long-term health. Episode transcript and more information at: Chapters: (00:01): Amber introduces the first-ever live recording of the "About IBD" podcast, recorded at an event in Los...
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How to Navigate ER Visits and Avoid Fragmented Care With Dr Stephen Lupe
About IBD
Emergency room visits are a source of stress and can lead to fragmented care. Amber speaks with psychologist Dr Stephen Lupe to learn why inflammatory bowel disease (IBD) patients avoid the ER, the reality of medical trauma, and how a multi-disciplinary approach like the IBD Medical Home can revolutionize patient care. Transcript and more information at: Sponsored by: Johnson & Johnson: Find Stephen Lupe, PsyD at: Cleveland Clinic: Twitter: LinkedIn: Resources mentioned: Cleveland Clinic's Digestive Disease & Surgery Institute: Explore the...
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Brown Note: Helping People with IBD Find Hope and Support With Andrew Giffin
About IBD
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,...
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Insider Secrets to Fearless Travel with IBD
About IBD
Certified travel advisor, business owner, and ulcerative colitis patient Sarah McGovern joins Amber to give tips and tricks on traveling with IBD. Sarah relates her IBD journey, including a rare medication side effect that landed her in the hospital. Now in remission, Sarah breaks down her blueprint for traveling with an invisible illness. On this episode, you'll learn concrete, practical strategies for traveling with IBD and how a travel advisor can help you relax on your next trip. Transcript and more information at: https://bit.ly/AIBD203 Chapters: 00:04 — Introduction to...
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The Powerful Impact of the IBD Community Featuring Katie Neu
About IBD
Episode transcript and more information at: Katie Neu and Amber Tresca talk over the results of the IBD Social Circle white paper, "The Power of Community in Inflammatory Bowel Disease." A survey of more than 500 patients puts a spotlight on the ways IBD affects body image, relationships, intimacy, and mental health. Amber and Katie discuss masking symptoms, the difficulties of working a corporate job, and why having community is critical. Chapters 00:05 — Host Amber Tresca introduces the podcast and her guest, Katie Neu, who lives with Crohn's disease. 01:25 — Amber and Katie...
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Yoga Therapy for IBD: Why Acceptance is the Best Teacher With Bari Gratton
About IBD
After a devastating Crohn’s disease flare, marketing executive Bari Gratton traded a high-stress career for the healing path of yoga therapy in California. Bari joins Amber Tresca to discuss the "Five Layers of Being," the toxicity of "pushing through," and how she is building community for the next generation of IBD patients. Episode transcript and more information at: Key Chapters & Timestamps: [00:00:00] – Welcome to About IBD with Amber Tresca [00:04:40] – Diagnosis in the late 90s: Life as a teen with Crohn’s [00:12:35] – The 2017 Crisis: Three surgeries and a temporary...
info_outline- 00:05 Introduction and Guest Background
- 01:23 The Role and Nature of Patient Advocacy
- 02:37 The Long Game of Advocacy: Successes and Challenges
- 04:37 Advocacy vs. Activism and Personal Motivation
- 06:05 The Importance of Patient Stories in Advocacy
- 06:52 Crafting and Delivering Your Elevator Speech
- 11:46 Managing Emotions and Practicing Your Story
- 15:42 Preparing for Advocacy Day: Research and Teamwork
- 18:07 Training and Building Confidence for Hill Visits
- 20:58 Coordinating with Your Advocacy Team
- 22:38 Practical Logistics: What to Wear and Security
- 24:42 Navigating Capitol Hill: Accessibility and Facilities
- 29:26 Managing the Day: Scheduling and Flexibility
- 32:17 During the Meeting: Structure and Communication
- 36:04 Group Dynamics and Respectful Storytelling
- 40:29 Building Relationships and Following Up
- 42:12 How to Get Involved with Advocacy Groups
- 44:42 Financial Considerations and Accessibility
- 45:17 Encouragement and Closing Thoughts on Advocacy
- 47:12 Lessons Learned the Hard Way
- 50:33 Closing Remarks and Gratitude
- 51:22 Outro and Credits
- Overview of inflammatory bowel disease (IBD), including Crohn's disease and ulcerative colitis.
- Personal experiences of living with IBD and the impact on daily life.
- The role of patient advocacy in improving healthcare policies and patient rights.
- Challenges faced by patients regarding insurance barriers and treatment access.
- Importance of sharing personal stories with legislators to influence policy change.
- Distinction between activism and advocacy in the context of healthcare.
- Strategies for effective communication and preparation for advocacy efforts.
- The significance of teamwork and collaboration in advocacy initiatives.
- Resources and organizations that support IBD advocacy and patient education.
- Emotional aspects of sharing health experiences and the importance of building relationships with legislative staff.
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