I’m Jenny Jones and I was born a zebra thanks to Familial Adenomatous Polyposis (FAP) – a rare, hereditary cancer syndrome. The most notable hallmark of FAP is 100s – 1000s of precancerous polyps in the colon/rectum requiring an inevitable surgery to remove the colon once polyp burden becomes too high to be managed by colonoscopies alone. However, we have several other elevated cancer risks and other manifestations that we may develop.
I was diagnosed at eight years old with FAP, and I come from a long family line of it. My medical journey has been long and complicated as my body can never just be “normal” or “textbook.” Due to surgical complications from my colon removal, I also developed another rare disease – Short Bowel Syndrome, a malabsorption disorder.
In spite of the medical challenges and the mental health difficulties that come along with these invisible illnesses, I’ve learned how to enjoy life, and I make sure to strongly cherish my loved ones as we never know what each day may bring. When life and time allow, I attend cultural festivals, garden, paint, and spend time outdoors. But most of all, I just want to spend time with my loved ones as much as I can while helping others navigate FAP through Life’s a Polyp Foundation, a 501c3 nonprofit dedicated to FAP patients and families.
5 Invisible Symptoms
- Fatigue – without a colon, it’s common to have dehydration and nutrient deficiencies that cause a multitude of issues including fatigue. Many of us require iron infusions and other medications/supplements to help keep our labs in an okay range.
- Intestinal Blockages – surgeries create scar tissue/adhesions and these worsen over time. As a result, we are at increased risk of food related intestinal blockages from difficulty digesting food. Intestinal blockages can also be caused by non-food issues such as a tumor or Desmoid Tumor pressing into the remaining bowel.
- Medical PTSD – my medical experiences as a child caused me to develop PTSD and changed my brain. Depression, anxiety, and anger have been difficult challenges for me as a result.
- GI issues – while GI issues are common without a colon in general, mine are increased by my repeated GI surgeries and Short Bowel Syndrome. Due to this, I experience extreme bloating and while most without a colon have 4-12 loose stools a day, I have at a minimum 20. During a Short Bowel flare, I hit 100 easily.
- Pain – there can be a lot of pain associated with FAP and the surgeries it requires. Adhesions can cause pain, rerouting of the GI system can cause pain, nutrient deficiencies and dehydration affect not only the muscles but also how the body functions, also creating pain.
4 Things That Help Me Manage The Pain / Symptoms
- Medications – while some do not like taking medications or would prefer medications not to be an answer for treatment, personally, my medications make a huge difference in my daily life to help keep me functioning. Not all are prescribed, some are over the counter, but they all play an important role in keeping me as healthy and as active as possible.
- Physical/Occupational Therapy and Exercise – I’m not very good at maintaining exercise but my body lets me know when I can’t avoid my exercises anymore. Muscles support our body and when they become weak, pain can increase.
- Mental Health Counseling – I used to only enter counseling when I was having a depression episode that I couldn’t get out of by myself. A few years ago, I entered back into counseling realizing I can’t keep running away from my struggles, and I started EMDR trauma therapy to help me further process my experiences and increase my ability to cope.
- Self-Care – I didn’t learn self-care until my late 30s. I still struggle with it, but I learned that self-care is necessary. For me, that looks like allowing myself to rest or engage in less activity when I need to, giving myself grace for my physical and mental health, and engaging in activities that bring me joy and replenish me.
3 Ways My Life Has Changed
- I changed schools because of my surgical complications from my first surgery. This led me down an entirely different trajectory – it caused me to make all new friends and experience a completely different school life. But it was for the better.
- I changed careers. Due to my medical PTSD, I couldn’t provide medical care to any person or animal. I no longer was capable of becoming a veterinarian.
- It led me to patient advocacy including telling my own story. By telling my story and advocating for awareness, I found community. It was community that helped teach me about self-love and acceptance. Community led me to founding Life’s a Polyp Foundation – the first FAP only focused nonprofit in the United States.
2 People Who Inspire Me
- My mom. She is my hero. Sharing the same two rare diseases, I watched her as I grew up fighting constantly for good care and proper insurance billing/coverage. She taught me how to advocate for myself and how to navigate the medical system. She handled her health with the most amazing grace – a grace, I have never been able to emulate myself. Losing her was the hardest thing I have ever experienced and it made me realize, I would go through all the medical trauma again and again if it meant another lifetime with her.
- There are so many FAP advocates who I deeply admire. But I’m going to pick Ryan Baker. As a young child with FAP, Ryan is already a strong advocate – always teaching their friends and strangers about FAP and already advocates in their own medical care.
1 Thing I Want People to Know
You are not alone. With rare disease, it is easy to feel completely alone. But we are out here and with the internet we are able to connect easier than ever. Even for someone who is the first one diagnosed with a newly identified rare disease or someone who is still seeking a formal diagnosis – the entire rare disease community welcomes you and there are subcommunities who will more closely align with your experiences. But regardless of if your disease has a name yet or not, you are not alone – we are here. You don’t have to navigate any of this alone anymore.
To read all of our previous zebra spotlights, please click here.