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Personal Story

Breaking the silence ahead of World IBD Day

News Editor Amanda Pedersen opens up about her experience with inflammatory bowel disease (IBD), and highlights an emerging technology that has game-changing potential for IBD patients.

By Amanda Pedersen

“You’re too young to be that sick.”

That is what my former gastroenterologist said to me when I was first diagnosed with ulcerative colitis sometime around 2000. It was a confusing thing to hear, because despite being 19 years old at the time, I was that sick.

Like Crohn’s disease, ulcerative colitis is an inflammatory bowel disease (IBD) that causes inflammation and ulcers in the digestive tract.

My symptoms worsened over the next two years to the point where I spent so much time in the bathroom that I was keeping my college textbooks on the back of the toilet in an effort to keep up with my studies — when I wasn’t doubled over in pain, that is — as the disease slowly took over my entire large intestine.

As much as I liked my doctor’s sense of humor, I never felt like he took my symptoms seriously, given my age. Finally, after trying medication after medication without ever achieving remission, I sought out a second opinion. The second gastroenterologist I saw had a rather bland personality by comparison, but he was far more straight forward about my condition. At that point surgery wasn’t just a recommendation, he said, it was a necessity.

So, in December 2002, I had my entire colon surgically removed — the first step in what is commonly referred to as J-pouch surgery. It’s called that because, after removing the colon (and sometimes the rectum), the surgeon eventually creates an internal J-shaped pouch using the end of the small intestine (the ileum), and then connects the pouch to whatever is left of the rectum, or to the anus. In between removing the colon and hooking up the J-pouch, however, most patients have to use an ileostomy bag while their bowel heals from the initial surgery.

Pooping into a bag was so not how I had pictured my senior year of college. My surgeon told me I had to have the bag for a minimum of three months, so I was back in the operating room exactly three months later. Unfortunately, my body had not had time to fully heal by then, and I developed a series of life-threatening complications from the second surgery. I ended up spending the next six weeks in the hospital, and had to have another ileostomy bag, this time for a full year. In case you’re wondering, an ileostomy bag is no different than a colostomy bag, it just happens to be connected to the ileum rather than the colon.

I was released from the hospital just in time to attend a family wedding in April 2003. I was 80-some pounds at that point, and could barely walk. Too weak to even shower by myself, I sat on a stool in the bathtub while my grandmother bathed me. I was 21, she was 70.

And I thought having a poop bag would have been the real low point of my recovery.

I was finally strong enough to complete the J-pouch surgery in 2004. In retrospect, it’s kind of crazy that I’ve been living without a colon for almost 19 years. I still have occasional flare ups known as pouchitis, and battle with frequent strictures, and other bowel-related inconveniences. But compared to life with ulcerative colitis, I really can’t complain.

The thing is though, my journey is not that uncommon. I’m just one of millions of people impacted by IBD, and there are so many unmet needs in the IBD space. That means plenty of opportunity for innovators looking for a large total addressable market.

Full story here.

Posted on: May 5 2021

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