Familial Adenomatous polyposis With Jenny From Oklahoma - Video

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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