By: Jenny Jones
I’m Jenny and my medical story started when I was about age 8. I had been experiencing chronic abdominal pain for a while. My parents knew there was a chance I had inherited the rare disease Familial Adenomatous Polyposis (FAP) from my mother and perhaps this is what was causing my abdominal pain. They began their efforts to have me evaluated by a GI specialist but would encounter barriers placed by their HMO insurance. A referral to a specialist was required by a primary care doctor. However, my PCP dismissed my pain and told my parents I was “just whiny”. For me to be seen by a GI specialist, my parents decided to change to a PPO insurance plan as soon as possible so that we would never require a referral again to be seen by a specialist. Once I was seen by a pediatric GI, she immediately ordered an EGD, Colonoscopy, and genetic testing to fully evaluate my pain and if I had inherited FAP. This was important to know as FAP is a hereditary colon cancer syndrome that causes 100s to 1000s of precancerous polyps to develop at a younger age onset and guarantees colon cancer to develop if the colon isn’t removed in time. FAP also has higher risks for many other cancers and has several extra-colonic manifestations as well. Monitoring for FAP patients really needs to begin upon birth.
I was truly blessed with my new GI doctor. My test results found that my pain was caused by being pre-ulcerous from stress and I did indeed have FAP. Even though my FAP wasn’t causing any symptoms at the moment, I had precancerous colon polyps that were starting to turn cancerous. In 1995, at age 9 I underwent colon removal with a temporary ileostomy with the plan to reverse my ostomy into a Jpouch 3 months later. However, I would require 4 more surgeries within that year. I encountered a life-threatening surgical complication of my small intestine wrapping around itself and my surrounding organs resulting in my Jpouch dying and the development of another rare disease – Short Bowel Syndrome (SBS). By the end, I developed medical PTSD, became so consumed by anger and depression that I became suicidal and homicidal and was living with an ileostomy that I was told couldn’t be reversed. I hated my body, myself, and anyone else I held responsible for what I had endured. I lived like this for the next 6 years – traumatized and broken from my medical experiences, terrified anyone would find out about my health issues.
My life didn’t begin to change until I was 14 and asked to go to mental health counseling. In counseling I was able to start processing my medical trauma and learn healthy coping skills for my PTSD, depression, and anger. This was life changing for me and gave me hope for a better life. In 2001, when I was 15, a new surgeon agreed to try to reverse my ileostomy into a Straight Pull Thru and it was successful, although not without its own life-threatening complications as well. My SBS already caused malabsorption issues from a fast gut transit time, dehydration, and inability to properly absorb nutrients. This worsened though when I started having frequent voluminous stools and vomiting. I started having chronic abdominal pain again. My body deteriorated rapidly and even with months of medical testing; the reason couldn’t be identified. I required weekly medical monitoring for frequent blood transfusions and IV fluids to rebalance my electrolytes. For months, I required artificial feeding through a central line in my chest as my Short Bowel Syndrome had created a hole in my intestine. To minimize surgeries, I was not allowed to have anything by mouth for weeks and underwent a full session of hyperbaric treatments to aid in healing the hole. The road to being able to just drink water, much less eat again, was difficult and long. However, the last resort to identify the cause of my issues was exploratory surgery that found adhesions had created a stricture around my small intestine that was causing the excessive stools and vomiting. It would take 6 more years after this for my body to stabilize itself again.
During this time, I managed to finish high school and a bachelor’s degree program. My body would grant me 8 years without a hospitalization allowing me time to finish a master’s degree program, obtain and maintain full time employment, and get married. Then one fateful day, my depression led me into a severe malnourished and dehydrated state again resulting in a fall, in which I would hit my head. And my life would take another, unexpected turn that day. I was hospitalized for a few days and the eve before my hospital release, I began to experience chronic nausea and increased abdominal pain. After months of testing and medication trials, I found a medication combination that worked to manage my symptoms the best we could.
By the time I would require my next surgery in 2021, I had divorced my husband, bought my own home and found my true life partner. In 2021, I required my gall bladder to be removed due to gallstones and precancerous polyps. This 8th surgery would send my body into a tailspin of non-stop debilitating pain. It took 6.5 months and 7 specialists to determine my pain was caused by Abdominal Migraine. And my Abdominal Migraine is believed to have started when I hit my head in 2015 resulting in the chronic nausea and increased abdominal pain that started just a few days later. It took over a year, but with the correct medications and months of physical therapy, I regained my independence and quality of life. It’s 2023 now and my body still likes to create mysteries for my doctors to solve. Presently, my doctor and I are trying to determine the cause of my new issue of recurring vomiting.
I’ve never been one to let my health stop me though. In fact, I learned to use it to help to educate and empower others so that they may not have the same medical and mental health experiences I did as a child. In addition to maintaining full time employment with this focus, I also established Life’s a Polyp in 2012 to raise awareness about FAP and SBS. I started the NORD FAP Research Fund in 2015. In 2022, my children’s book about FAP was published. This year, I’m focusing on fully funding the FAP Research Fund so that more research can be conducted – hopefully to prevent colon removal surgery for FAP patients.
In my efforts to help others through their chronic illnesses…I received an incredible, unexpected gift in return. I learned self-love and self-acceptance. That terrified little girl who hated herself, her body, and the world is now embraced and protected by a much stronger, wiser me and is loved by an incredible online rare disease community. If only I knew then what I know now about how the power of self-love and acceptance is life-altering.
Social Media: @LifesaPolyp
FAP Children’s Book: Life’s a Polyp with Zeke and Katie
NORD FAP Research Fund Donation:
If you would like to contact Jenny: firstname.lastname@example.org
© 2023 Jenny Jones and Courage to Shine™
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2 Comments Add yours
Your story is a great reminder of what one needs to do in order to get appropriate care for rare (or rarely diagnosed) conditions. And, even then, the trauma involved can be devastating. Thanks for bringing the issues to light and helping others through sharing intimate details, Jenny.
Nice response Paige!!!