Voices Across America

My Patient Story

Jenny

State: Oklahoma
Congressional District: OK05

Diseases

Gastrointestinal Disease, Rare Disease

Issues and Challenges

Jenny has encountered: Gaslighting, Invisible Illness, Medical Discrimination, Mental Health Access, Rare / Underserved Disease

My Story

I was about 7 or 8 years old when my medical story started. I had been healthy up until 3rd grade when I started having chronic abdominal pain. My parents took my pain seriously and sought help from my pediatrician. However, my parents and I were turned away. My pediatrician told my parents that there was nothing wrong with me, I was just a “whiny child”. Because of this, my parents were refused the insurance required referral to a GI specialist for further evaluation of my abdominal pain.

This maybe wouldn’t have turned out to be such a huge problem for some children and their parents. My mother has a rare, genetic disease called Familial Adenomatous Polyposis (FAP). There is a 50/50 chance of inheriting it from a parent with the disease and it’s no disease to ignore. FAP causes 100s to 1000s of precancerous polyps to develop in the colon that will require surgery to remove the colon before the polyps turn cancerous. Additionally, there is an elevated risk for these polyps to cause cancer anywhere else in the GI tract and for other cancers outside of the GI tract to develop. There are many extra-colonic manifestations of FAP that also affect the health. Regular monitoring is required to not only survive FAP but also to maintain a quality of life. My parents did not know if I had inherited FAP from my mother, but they knew there was a chance and they knew that my chronic abdominal pain could be something serious because of this.

Once my parents were able to switch from an HMO to a PPO insurance plan, they did and they found me a pediatric GI specialist immediately. Fortunately, my new GI specialist took me and my parents serious. She gathered a thorough family history and upon learning about my family history of FAP, she quickly scheduled an endoscopy and colonoscopy for me. The scopes found that at the age of 8, I was already developing colon polyps and my stomach was pre-ulcerous from stress. A genetic test was completed and I was confirmed to have FAP. The colon polyps were biopsied and one doctor determined the polyps were already starting to turn cancerous while another determined the polyps had not turned cancerous yet but would in a matter of time.

At age 9, I had my first surgery to remove my colon and ostomy placement. I was to have a second surgery at 10 to reverse my ostomy into a Jpouch. However, I would soon experience complications from this surgery resulting in 4 additional surgeries within the year. My small intestine wrapped around itself and surrounding organs causing my blood supply to be cut off. The ER doctor didn’t find anything wrong and sent me home, telling my parents that I was “just a whiny child”. My parents took me back to the ER the next day and my twisted intestine was discovered by a different doctor. The hospital staff couldn’t believe I had lived through the night. Due to this complication, my Jpouch died and I would have an ostomy for 6 years before being able to have it reversed into a Straight Pull Thru.

I developed Short Bowel Syndrome (SBS) as a result of my Jpouch dying. Short Bowel Syndrome is a rare disease that results due to the dysfunction or removal of intestine and causes malabsorption of nutrients as severe, chronic diarrhea is typical. Some individuals require a feeding tube and TPN in order to obtain the required nutrients.

In high school, I had my ostomy reversal but again experienced complications due to adhesions. My adhesions created a stricture around my small intestine resulting in severe malnutrition and dehydration. Once again, my life was at stake and after a year of a variety of medical tests, I underwent exploratory surgery. This surgery discovered the stricture and removed adhesions.

Due to all the medical trauma I experienced, I developed PTSD and depression. I didn't seek mental health help until I was in high school. I started counseling and medication management. The combination changed my life and I was able to learn how to process my medical trauma and cope with my PTSD triggers.

It took several years for my health to stabilize after this last surgery. However, I was able to continue my education resulting in graduating with a Master’s degree in Social Work and I have been able to maintain full time employment.

My Motivation and Inspiration

I developed medical PTSD and depression as a result of my medical trauma. I use my medical trauma to help others with chronic illness. I work in the medical field and I also share my story on my blog and youtube channel. I want to help others who are still adjusting to their own health issues and are still finding their own voice. I also raise funds for NORD FAP Research Fund through Life's a Polyp Shop.

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