Familial Adenomatous Polyposis With Jenny From Oklahoma

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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.

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🔗 Blog: Life’s A Polyp

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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

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