Hi, I’m Rebecca.

In the late 1990s, my dad suddenly became very sick. After testing, we found out he had colon cancer at only around 35 years old. My father was adopted, which meant we had no knowledge of our family’s medical history or any possible genetic conditions.

The adoption agency was able to medically open his adoption records, and that’s when we discovered that FAP ran through my paternal grandmother’s family. It had devastated most of my dad’s biological family. Later, we would learn that my older brother, my younger sister, and I all carried FAP as well.

After multiple blood tests, appointments, and two scopes, by August 2008 both my sister and I were scheduled for our J-pouch surgeries. I went first, and she went second. We both had one-step J-pouch procedures. Unfortunately, my little sister’s surgery was considered a failure, which caused sepsis. She had to be taken back into surgery and was given a loop ileostomy until she healed enough for another J-pouch procedure.

Thankfully, my J-pouch healed beautifully. I was able to have fairly normal teenage years and early adult years. However, the medical system in BC failed me during that time. I had no proper follow-up care or regular scopes, even after being rushed to the hospital multiple times for rectal prolapses. I also was never properly advised about the post-pouch diet, so I resumed my old eating habits almost immediately after leaving the hospital.

This turned out to be a critical mistake.

Fast forward to 2016, I became pregnant and was still having no major issues with my J-pouch. To help prevent further prolapses, I chose to have a C-section. In February 2017, we welcomed our child into the world. I remember the moment I first said hello to him, I was already asking the doctor when we could run a genetic panel. My concerns were brushed off. (You can find his story on Life’s a Polyp Foundation as well.)

After my child was born, life with my pouch became much more complicated. I started having symptoms of pouchitis, but once again, my concerns were dismissed. In 2020, I was sent for a PET scan for another medical issue, which eventually led to me having a total radical hysterectomy in May 2021.

After that surgery, my pouch failed.

Since then, I’ve seen numerous gastroenterologists and specialists, including the IBD Centre of BC. They tried almost every biologic medication available, but despite all of it, my symptoms never improved.

As things stand now, I am facing the reality of either living with a failing pouch or getting an ostomy—which, for someone with severe medical adhesive allergies, is far from an ideal option.

I hope that one day I’ll be able to update this story with something happier, something that feels like success. But for now, I remain at the mercy of a medical system that too often fails people living with rare chronic illnesses.

Because of those failures, I’ve made it my life’s mission to learn everything I can about FAP. I spend my free time volunteering, advocating, and raising awareness for FAP and chronic illness, hoping to help others feel less alone and better supported than I did.

For those reading this, please know that my experience is not the typical post-op journey. Many people with J-pouches and FAP never face the kinds of complications I have. FAP is not the end of the world—it’s simply the beginning of a new one.

It can be a wild ride, full of challenges, learning, and unexpected turns, but life absolutely continues. There is still joy, still strength, and still a future ahead.

As I like to say: no colon, still rollin’.