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.
A bi-monthly podcast where we share the stories of our Caregivers, patients and...
Listen on: Apple Podcasts Spotify
Popular Podcasts
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.