Fighting 2 Rare Diseases

Jenny_FAP warrior story

Jenny's Story

United States

Age: 25-36

A little bit about my journey:

My Diagnosis

Familial Adenomatous Polyposis, Short Bowel Syndrome

Time to Get Diagnosed

A year

Year I was Diagnosed

1994

Sending Love to

Dr. Vong

Hospital I'd Recommend

Integris Baptist

This is my story:

I was diagnosed at age 8 with the rare, genetic disease Familial Adenomatous Polyposis (FAP), which I inherited from my mother. FAP is caused by a mutation to the APC gene and causes 100s to 1000s of precancerous polyps to develop in the cancer. These polyps will turn cancerous if the colon is not removed in time. There are several extra colonic manifestations as well including bone growths, Desmoid tumors, supernumerary teeth and high risk of other GI cancers and other cancers throughout the body.
I had my first surgery to remove my colon at age 9 as my polyps were starting to turn cancerous. Originally, I was to have surgery to remove my colon and place a temporary ileostomy that would then be reversed in a second surgery to a Jpouch. However, I experienced life threatening complications resulting in 4 additional surgeries within the span of a year. Due to these complications, a part of my small intestine was also removed resulting in the development of another rare disease, Short Bowel Syndrome (SBS). SBS 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 maintain necessary nutrients and hydration.
I was able to have my ostomy reversed 6 years later. Unfortunately, I experienced life threatening complications again. After months of medical testing, it was discovered in my 7th exploratory surgery that adhesions had created a stricture around my small intestine. This stricture was causing me to have excessive diarrhea and vomiting on a daily basis therefore I wasn’t able to maintain my electrolytes, nutrition, or hydration levels. An ulcer developed in my small intestine due to the excessive diarrhea and eventually created a hole in my intestine. In order to allow the hole to heal itself, I was NPO for several weeks and received TPN for several months while completing 6 weeks of hyperbaric treatments.
It would take another 6 years after this surgery for my body to begin to stabilize itself. Within another 8 years, I began to experience severe and chronic abdominal pain and nausea that was worsened when eating. These issues were caused by adhesions, gallstones, and precancerous polyps in my gallbladder requiring my 8th surgery.
I continue to be monitored by several specialists to manage my FAP and SBS to not only treat symptoms but also monitor for the development of possible cancers associated with FAP. Due to my medical experiences, I enjoy advocating for FAP and SBS to raise awareness through my blog Life’s a Polyp and raising funds for NORD FAP Research Fund. I also am excited for my FAP children’s book to be published for Rare Disease Day 2022.
The management of rare disease and chronic illness is a lifelong commitment, it truly takes a Chronic Warrior.

Let’s play 20 questions:

The song that keeps me going is:
Sounds of Madness
I never leave home without my:
Calmoseptine
My go-to feel better movie is: 
The Little Mermaid
If I was in the hospital, the celebrity I would most love to visit me would be:
Alan Alda
When I need to relax, I:
curl up in bed
My favorite food is:
Sushi, Seafood
The quote that keeps me going is:
Tomorrow may be a better day
When I need a laugh, I:
talk to my partner
Meet my pets (or favorite stuffed animal):
Zia and Azriel
My hero is:
my mother
When I’m having a down day I binge watch:
Youtube videos
My favorite book to get lost in is:
Shakespeare
I want to be best friends with:
Alan Alda
The thing I’m most proud of:
my blog Life's a Polyp
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
publishing my own book
The most hilarious thing that has happened to me is:
crazy dating stories and experiences
It really means a lot when someone does this:
I hear from others how I've been able to touch their lives
My favorite social media account to follow is:
Wego Health
The advice I would give to myself back at the beginning of this journey would be:
start counseling upon diagnosis
Words of encouragement that I’d give to my fellow warriors are
You are not alone. There are online communities now to help us advocate and navigate through our illnesses
Follow my journey: www.lifesapolyp.com

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