Familial Adenomatous Polyposis With Jenny From Oklahoma

Send us Fan MailIn this milestone 50th episode of Rare Connection, host Joanna sits down with Jenny, the powerful voice behind the blog Life’s A Polyp. Diagnosed with Familial Adenomatous Polyposis (FAP) as a child, Jenny underwent a total colectomy at age 9, followed by a series of life-threatening complications that led to multiple surgeries, an ileostomy, a reversal, and eventually the diagnosis of Short Bowel Syndrome (SBS) — one of the conditions covered in the proposed Medical Nutrition Equity Act (MNEA).Jenny opens up about:Her early diagnosis with FAP and its impact on her childhoodCoping with surgical trauma and living with medical PTSDHer ileostomy and pull-through proceduresLife with Short Bowel Syndrome and daily nutritional challengesThe importance of access to medical foods and legislative change through the MNEAAdvocating through her blog and building community for others with rare GI conditionsFinding diagnosis for a lesser-known condition: abdominal migrainesJenny’s story is raw, insightful, and a powerful reminder of why visibility for invisible illnesses matters.📌 Connect with Jenny: 🔗 Blog: Life’s A Polyp📲 Join the Conversation & Support the Show💬 Comment on this episode:Watching on YouTube? Comment below!👕 Wear your advocacy: Order our new Rare Disease & Invisible Disability Awareness t-shirt — ships worldwide! Only $24.99 + shipping. [Link in show notes]https://www.bonfire.com/invisible-disability-rare-disease-awareness/📱 Follow Rare Connection:Facebook Group:https://www.facebook.com/groups/3802022513417876 Facebook Page:https://www.facebook.com/profile.php?id=100095564621062 X (Twitter): https://x.com/Rare_ConnectionLinkedIn: https://www.linkedin.com/company/rare-connection-incYouTube Channel:https://www.youtube.com/@Rare_Chef🧠 Mental Health & Suicide Prevention If you’re struggling, you're not alone. 📞 Call 1-800-273-TALK (8255) or 📱 Text 988 for free, 24/7 support in the U.S.Chapter Markers00:00 Intro03:16 Diagnpsis story05:03 Family Connection05:50 Early memeories09:31 J pouch10:23 ostomy bag covers11:09 FAP12:38 Long Term Effects of FAP14:21 Genetic Testing15:21 short bowel syndrome17:34 Medical Nutrition18:30 Insurance denials23:23 Importance of equitable access to medical nutrition24:34 Navigating the system25:43 Life's A Polyp blog27:54 Health union formerky We Go Health30:23 What Keeps Jenny Going32:32 If the Medical Nutrution Equity Act were passed34:28 Oklahona Doesn't cover Medical, Foods, or Formula36:00 conclusionSupport the show