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 – Amber Tresca introduces Nicholas Kelly, RD 01:29 – What is cystic fibrosis (CF)? The GI, pancreas, and full-body impact 02:43 – Dismantling racial misconceptions and the rise of gene therapies 03:48 – Researching symptoms without Google to beat false negatives 05:28 – Choosing excellence over chronic illness limitations 08:16 – Moving from pushing through to body awareness and acceptance 09:09 – Securing attendance flexibility and extended exam time 10:34 – Maintaining health privacy and avoiding workplace bias 11:44 – Advocating as a "triple minority" and bringing passion to clinician-patient communication 14:01 – Rebuilding a realistic relationship with food 17:04 – Meeting unpredictable illness with empathy 18:28 – 3 Energy-saving nutrition hacks for fatigue 20:31 – The nutritional value of sweet peas and the two-rinse low-sodium trick 22:14 – Connecting with Nick Kelly: Website, social channels, and resources 23:18 – Triple-combo CFTR modulator therapies and finding a cure for CF 24:45 – Outro: Episode wrap-up, show notes, and production credits Find Nicholas Kelly, RD at: Web: https://nicholaskellyrd.com/ YouTube: https://www.youtube.com/@nicholaskellyrd Instagram: https://instagram.com/nicholaskellyrd Tik Tok: https://tiktok.com/@nicholaskellyrd LinkedIn: https://www.linkedin.com/in/nicholaskellyrd/ Facebook: https://www.facebook.com/NicholasKellyRD/ Twitter: https://x.com/NicholasKellyRD Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio. 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.

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: https://bit.ly/AIBD209 This episode is sponsored by Connecting to Cure. 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, and sexual health. Strategies for self-advocacy in healthcare settings, particularly for women. The importance of healthcare providers listening to patients and understanding their unique experiences. The role of community support organizations in providing resources and advocacy for patients. The intersection of personal experience and professional practice in healthcare. The significance of mental health and body image in managing IBD. Key chapters: [00:05] Host Amber Tresca introduces guest Morgan Check, a pediatric gastroenterology nurse practitioner who lives with Crohn's disease. [02:03] Morgan recounts her diagnosis with ulcerative colitis at 15. [04:32] Morgan starts Remicade, which led to ten years of remission. [05:38] At 25, Morgan needed emergency J-pouch surgery. [07:58] Morgan was rediagnosed with Crohn's disease. [10:37] Morgan discusses being a nurse practitioner with IBD. [14:06] Morgan shares her path to motherhood. [17:09] Morgan describes experiencing small bowel obstructions. [21:14] Morgan discusses specific health issues for women with IBD. [24:29] Advice for women on how to communicate with healthcare providers. [27:16] Tips for healthcare professionals on how to better listen to their female patients. [29:50] Discussing Connecting to Cure and how it supports patients and families. [34:14] Morgan talks about her son Ezra's "Taco Tuesday" food review videos. [36:20] Morgan shares her social media handle, "Gut Check with Morgan." Find Morgan Check, NP at: Instagram: @GutCheckWithMorgan Facebook: @GutCheckWithMorgan YouTube: @GutCheckWithMorgan Threads: @GutCheckWithMorgan TikTok: @GutCheckWithMorgan LinkedIn: Morgan Check, NP Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer 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.  

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: https://bit.ly/AIBD208 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 perforation. [00:06:17] — Brandon shares his childhood memories of his dad's symptoms. [00:08:04] — Brandon recalls learning about his dad's cancer diagnosis. [00:10:50] — Adam explains how a colon cancer diagnosis led to j-pouch surgery. [00:14:15] — Brandon describes the changes in family life after his dad's j-pouch surgery. [00:17:05] — Adam talks about his concern that his sons might inherit IBD. [00:19:12] — Adam and Brandon discuss the importance of getting involved in advocacy. [00:23:56] — Brandon shares how he became involved with Connecting to Cure. [00:27:08] — Adam shares how pouch surgery has given him a new lease on life. [00:28:21] — Brandon outlines how to engage with Connecting to Cure. What you'll learn: The role of family dynamics in managing chronic illness. The involvement of children in patient education and advocacy influenced by a parent's health journey. The importance of early screening and awareness for inflammatory bowel disease (IBD). The challenges of living with a chronic illness and the need for better support and resources. The impact of j-pouch surgery on quality of life and family interactions. How community groups like Connecting to Cure help families cope with IBD. The influence of chronic illness on the aspirations and career choices of family members. The importance of understanding medical conditions and procedures through research and education. Find Adam Sikes at: LinkedIn: https://www.linkedin.com/in/adamsikes Find Brandon Sikes at: Instagram: https://www.instagram.com/brandonsikesss/ LinkedIn: https://www.linkedin.com/in/brandon-sikes-214620348/ This episode sponsored by Connecting to Cure Crohn's and Colitis: Web: https://www.connectingtocure.org Twitter: @connecttocure Instagram: @connectingtocure Facebook: @ConnectingToCure Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer 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.

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 affects women, and some potential complications. The challenges of rectovaginal fistulas and their effects on intimacy and mental health. The importance of self-advocacy and seeking second opinions. Some of the gaps in healthcare for women with IBD, especially regarding reproductive health and menopause. The role of community support and organizations such as Girls With Guts. How multidisciplinary approaches are important in managing women's health issues. Some personal coping strategies and hobbies outside of IBD advocacy. Upcoming events and resources for women living with IBD. Key Chapters & Timestamps: [01:12]: Introduction to Alicia Aiello, president of Girls With Guts (GWG). [03:01]: Alicia describes her abrupt diagnosis with ulcerative colitis at age 14. [04:36]: Alicia explains a proctectomy and details her surgical history, including rectovaginal fistulas. [07:26]: Alicia discusses her decision to seek a permanent ostomy. [09:19]: Alicia shares the unexpected outcome of her proctectomy surgery. [13:43]: Alicia talks about the lack of mental health support and reproductive care. [22:40]: Alicia shares the physical and mental toll of fistulas. [25:34]: Alicia offers advice on trusting your gut and advocating for yourself when you feel invalidated or rushed by a provider. [35:42]: Alicia outlines how providers can improve care for their patients. [38:24]: Gaps in care, including isolation and lack of information on aging with IBD. [40:49]: Alicia details the upcoming GWG  annual retreat and highlights the Cedars-Sinai Women's Health Conference. [45:54]: Alicia shares about her hobbies outside of advocacy. Resources: What is a Fistula? — Amber Tresca via Verywell Health: https://www.verywellhealth.com/what-is-a-fistula-1941776 Girls With Guts retreat information and registration — https://girlswithguts.org/calendar/gwg2026/ IBD & Women's Health Conference — https://www.eventbrite.com/e/your-life-your-hormones-your-ibd-womens-health-at-every-stage-tickets-1977517412815 Find Alicia Aiello at: Instagram: @alicia_aiello Facebook: @AliciaMarieAiello Find Girls With Guts at: Instagram: @ibdgirls           Facebook: https://www.facebook.com/IBDgirls TikTok: @ibdgirls LinkedIn: @ibdgirls Web: www.girlswithguts.org           YouTube: @IBDgirls Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer 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.

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: https://bit.ly/AIBD206 Chapters: (00:01): Amber introduces the first-ever live recording of the "About IBD" podcast, recorded at an event in Los Angeles. (01:31): Amber and guest expert Dr. Puja Khanna are introduced, detailing their backgrounds and expertise in the IBD space. (03:26): Dr. Khanna discusses common extra-intestinal manifestations of IBD, including issues with the eyes, liver, skin, and joints. (05:45): A discussion on how women are uniquely affected by IBD, including hormonal influences during puberty, pregnancy, and menopause. (06:30): Dr. Khanna explains the importance of a multidisciplinary care team and open communication with your gastroenterologist about all symptoms. (08:00): The importance of discussing reproductive health early, even in adolescence, to gather information and make informed decisions later. (10:18): Dr. Khanna offers advice on managing fatigue by addressing sleep, mood, nutrition, and energy conservation, even when labs are normal. (14:23): Amber and Dr. Khanna discuss the fine line between pushing through illness and recognizing one's capacity to avoid overexertion. (15:47): Dr. Khanna advises focusing on trends rather than daily details to avoid anxiety while still providing useful data to doctors. (20:04): Guidance on when to send a portal message versus seeking immediate care, emphasizing that patients should not hesitate to reach out. (22:41): How patients can understand that issues like joint pain or eye problems can be connected to their IBD. (26:01): Dr. Khanna explains the detective work involved in distinguishing between medication side effects and extra-intestinal manifestations of IBD. (30:00): Dr. Khanna discusses a multidisciplinary treatment approach that incorporates nutrition, mental health, and physical therapy alongside medication. (32:27): A discussion on the long-term safety of modern IBD medications and the genetic risk of passing Crohn's to children. (35:34): Dr. Khanna explains the role of diet, the microbiome, and specialized nutrition in managing IBD for human patients. (38:31): Dr. Khanna shares personal details about her family, her life in Southern California, and her experience as a triathlete. Concepts discussed: Women Experience IBD Differently Than Men: Why It Matters Inflammatory bowel disease's gender bias 5 ways inflammatory bowel disease affects women differently Find Dr Puja Khanna at: Twitter: @PujaKhannaMD Bluesky: @pujakhannamd.bsky.social LinkedIn: Puja Khanna, MD Instagram: @pujakhannamd Cedars Sinai: Dr Khanna Find Amber J Tresca at: AboutIBD.com: About IBD Verywell Health: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_ibd Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio. 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.