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In 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 childhood
- Coping with surgical trauma and living with medical PTSD
- Her ileostomy and pull-through procedures
- Life with Short Bowel Syndrome and daily nutritional challenges
- The importance of access to medical foods and legislative change through the MNEA
- Advocating through her blog and building community for others with rare GI conditions
- Finding diagnosis for a lesser-known condition: abdominal migraines
Jenny’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_Connection
- LinkedIn: https://www.linkedin.com/company/rare-connection-inc
- YouTube 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 Markers
00:00 Intro
03:16 Diagnpsis story
05:03 Family Connection
05:50 Early memeories
09:31 J pouch
10:23 ostomy bag covers
11:09 FAP
12:38 Long Term Effects of FAP
14:21 Genetic Testing
15:21 short bowel syndrome
17:34 Medical Nutrition
18:30 Insurance denials
23:23 Importance of equitable access to medical nutrition
24:34 Navigating the system
25:43 Life's A Polyp blog
27:54 Health union formerky We Go Health
30:23 What Keeps Jenny Going
32:32 If the Medical Nutrution Equity Act were passed
34:28 Oklahona Doesn't cover Medical, Foods, or Formula
36:00 conclusion
Chapters
1. Familial Adenomatous Polyposis With Jenny From Oklahoma (00:00:00)
2. [Ad] & so much more (00:18:45)
3. (Cont.) Familial Adenomatous Polyposis With Jenny From Oklahoma (00:19:35)
64 episodes
