Katie’s Story – Finding Strength Through Challenge
Living with gastroparesis is just one part of Katie’s complex health journey. She’s become a passionate advocate for others, openly sharing her experiences in hopes of inspiring and supporting people who face similar battles.
A life of dedication
Katie has always led a busy, purpose-driven life. She works as a high school social worker, has competed as a successful athlete, and even published a book. Now, after being diagnosed with both Ehlers-Danlos Syndrome (EDS)—a rare connective tissue condition—and gastroparesis, she’s using that same determination to help people living with chronic and complicated medical conditions.
When the symptoms began
Her struggle began around 2012, when she was diagnosed with Ehlers-Danlos Syndrome. The disorder came with many physical challenges, but with help from her doctors, friends, family, and her loyal service dog, Moxie, she managed to adapt and find balance.
Then, suddenly, things changed.
“One day, I just couldn’t eat,” Katie recalls. “It wasn’t that I didn’t want to—it was like my body couldn’t handle food. I’d start eating and feel instantly full, like I’d just finished Thanksgiving dinner.”
Over time, her symptoms intensified. Persistent vomiting, severe stomach pain, and constant nausea became her reality. Every meal felt like being “stabbed in the stomach,” and her bloating was so extreme that she sometimes looked nine months pregnant.
Searching for answers
Months later, after enduring relentless symptoms, Katie underwent a four-hour gastric emptying study (GES), which confirmed gastroparesis.
She then sought help from a new gastroenterologist, hoping for a treatment plan. But instead, she was met with skepticism. The doctor questioned the accuracy of the four-hour test and insisted on a shorter, two-hour version, claiming it would be “more precise.”
Katie hesitated. “I knew from all the research I’d done that the four-hour test was the standard,” she says. “But it’s hard to push back when you’re not the expert.”
The shorter test came back negative for gastroparesis. The doctor concluded that Katie had slow stomach motility but no structural abnormalities—and implied that her symptoms might be psychological.
“I remember thinking, I wish it were all in my head, but I knew it wasn’t,” Katie says. She was given a diagnosis of functional dyspepsia instead.
Trying to advocate for herself
A new search for help
Katie decided to seek a second opinion. She changed hospitals and began working with a new medical team.
In the meantime, she tried alternative nutrition methods to maintain her strength. First came the NJ tube, inserted through her nose into her intestines. “It was awful,” she recalls. “As a social worker, I talk all day, and the tube rubbed my throat raw. I developed blisters, and it even got tangled around my vocal cords.”
When that failed, doctors switched to a J tube, which went directly into her intestines. Unfortunately, this method was far more dangerous.
“The J tube nearly killed me,” Katie says. “It caused intussusception several times and kept getting infected because of my Ehlers-Danlos. Eventually, I became septic.”
Her condition became critical, forcing another hospital admission and a new team of specialists.
Re-evaluating her options
Because of her connective tissue disorder, her doctors were limited in what they could safely do. Feeding tubes were no longer viable, and other traditional treatments were off the table.
That’s when one of her physicians asked a simple but life-changing question:
“Tell us more about that gastric electrical stimulator you mentioned before.”