Most people who’ve lived through an illness come away with a new perspective on life, or other takeaways that stay with them. It’s no different with inflammatory bowel disease (IBD).
After a ridiculously healthy childhood, with perfect school attendance awards in hand, I was diagnosed with ulcerative colitis (one form of IBD) at age 16. I had no way of knowing what the future held for me, or how my life would be affected by the diagnosis.
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Digestive problems tell only part of the story of what it’s like to live with IBD (inflammatory bowel disease).
The IBDs (Crohn’s disease, ulcerative colitis, and indeterminate colitis) are incurable conditions that primarily target the digestive system. Some of the common signs and symptoms of IBD include diarrhea, weight loss, abdominal pain, and fevers.
Continue readingLiving with a chronic condition places an invisible strain on friendships, marriages, and family dynamics, especially when patients feel the need to mask symptoms. Allison Fine, MSW, LICSW, founder and executive director of the Center for Chronic Illness, discusses breaking the cycle of emotional performance, navigating caregiver burnout, and processing ongoing grief. They explore how support groups are vital in chronic illness and how communication protects long-term relationships.
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Flare-ups in chronic illness can reopen feelings of grief. Clinical psychologist Dr Antonia Repollet shares her journey with Crohn’s disease and how it informs the way she helps patients navigate the emotional challenges of long-term health conditions. Learn ways to maintain your identity despite symptoms, how to come back from comments like “you don’t look sick,” and how a GI psychologist can be an ally in managing life with a relapsing-remitting condition.
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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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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.
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.
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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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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.
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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.