Living with Familial Adenomatous Polyposis and Short Bowel Syndrome- Meet Jenny Jones

My Invisible Disease

After Jenny Jones is wrongly dismissed as a "whiny child" with chronic abdominal pain, she discovers she has two rare diseases, undergoes multiple surgeries, and fights for the rights of children with rare diseases to receive the necessary health care.
"If you arm yourself with the information and you don't hesitate to ask questions, you don't hesitate to ask for treatments and communicate with your doctors and stay on top of them, you can live a normal life expectancy." - Jenny Jones
Jenny Jones is a published author and rare disease advocate for Familial Adenomatous Polyposis and Short Bowel Syndrome. Diagnosed at a young age, she has dedicated her life to helping others with chronic illness and raising awareness around Invisible Disease.
Jenny Jones suffered from abdominal pain since she was a child; her parents suspected she had inherited a GI disease. After changing insurance plans, a GI specialist confirmed her diagnosis and at age nine, Jenny had to have her colon removed. Over the next few years, she endured more surgeries, including a hole in her intestine, and was left with medical PTSD. Through counselling and physical therapy, Jenny was able to find her confidence and self-love, and now works to help people with chronic illness. Despite her struggles, she finds joy in the simple things, like sipping iced tea, and has written a children's book to help other families understand chronic illnesses.
In this episode, you will learn the following:
1. The struggles of navigating medical treatment and advocating for oneself as a young person with a chronic illness.
2. The positive impact of counselling, physical therapy, and online support for people with chronic illnesses.
Resources:
Connect with Jenny:
Life's a Polyp Blog
Life's a Polyp Youtube Channel
Life's a Polyp with Zeke and Katie
Life's a Polyp Shop
All social media handles are @LifesaPolyp for Facebook, Twitter, Instagram, Tiktok, Pinterest, etc.
Jenny Jones Bio:
Jenny is a Rare Disease Advocate for Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). She was diagnosed with FAP at age 8 and required her first surgery to remove her colon at age 9. Following life threatening complications, she was soon diagnosed with SBS and would undergo 4 more surgeries that year and develop medical PTSD as a result. After living with an ileostomy for 6 years, Jenny was able to have her ostomy reversed into a Straight Pull Thru but again suffered life threatening complications requiring another surgery the following year. Jenny’s 8th surgery was in 2021 and exacerbated her (at the time) undiagnosed Abdominal Migraine, requiring over a year of continued advocacy and effort for her to regain her quality of life. Due to her medical exper

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