Elizabeth Willingham had had a roller-coaster series of gastrointestinal problems for more than five years. Diagnosed with Crohn’s disease, a type of inflammatory bowel disease (IBD), when she was 12 years old, the Jackson, Mo., teen was almost in a perpetual state of persistent pain, with bloating and diarrhea impacting many of her activities.
“I felt at times like a rope was pulling the center of my abdomen to my back,” she recalled. “It was terrible.”
She had lost 20 percent of her body weight as her mother aggressively sought out doctors both in and out of Missouri to treat the escalating pain. A colonoscopy finally pointed to inflammation from Crohn’s disease in her small bowel.
“Before she was diagnosed, Elizabeth loved gymnastics,” said her mother, Amy Willingham. “But when she started saying that she didn’t want to go to the gym because she didn’t feel good, I knew it was getting worse.”
Doctors successfully targeted medications to tackle the inflammation and, in 2023, Elizabeth was told her Crohn’s disease was in remission. “But I kept telling them the pain was still there,” said Elizabeth. “It didn’t go away.”
She already had missed the entire spring semester of her freshman year in high school because of the inflammatory bowel disease. Now, many days during her sophomore and junior years were lost trying to find a cause and treatment for the residual pain. “She’d go to the bathroom multiple times a day, but the pain was constant, impacting everything,” said Amy Willingham. “It woke her up from sleep and she was becoming pale. We had assumed the pain was from the Crohn’s disease, but why did things keep getting worse?”
Her mother sought out other options, including pain management, cognitive behavior therapy, PT, and other medications to try and find relief for her daughter. Then, while searching the internet, she came across a novel treatment — IB Stim — which was used with success to treat a condition called DGBI, or Disorder of Gut-Brain Interaction. That led her to Dhiren Patel, MD, a pediatric gastroenterologist at SSM Health Cardinal Glennon Children’s Hospital, who is nationally recognized for the care of children with wide-ranging motility and neuro-gastrointestinal issues.
“DGBI is more common than many physicians think,” said Dr. Patel. “It is a disruption in the communication between the gut and the brain, which share a common neurohormonal pathway that controls GI symptoms and bodily functions.”
What sometimes happens in IBD is that because the nerve pathway is triggered and disrupted so often, it becomes stuck in the “on” position, sending pain signals constantly. IB-Stim can, in effect, recalibrate that nerve communication pathway and reset the errant pain signaling by placing a small neurostimulation device behind the ear, which then delivers a low-level electrical signal direct to the nerve involved in the gut-brain interaction. “There’s a sensation, like a small buzz,” said Elizabeth. “But you get used to it. It’s like putting on pants— you put them on and notice them at first, but then you don’t after a few minutes."
IB-Stim was approved by the FDA in 2019 for the treatment of functional abdominal pain associated with irritable bowel syndrome (IBS) in adolescents. “The added benefit of IB-Stim is that it is a non-pharmacological treatment option,” said Dr. Patel. “I’ve had success in using it for the treatment of lingering pain problems in children with many long-term medical conditions, including several patients with IBD.”
Dr. Patel notes that more than 50 percent of patients who come to his Pediatric Neuro-Gastroenterology and Motility Center have a form of DGBI with or without associated diagnoses. “It is often overlooked because we tend to focus on fixing the underlying cause of inflammation, but DGBI is a real condition that can lead to lingering and debilitating symptoms. IB-Stim is an option to treat that.”
Elizabeth felt significantly better within a month of undergoing several IB-Stim treatments. She now has her eye on medical school, with a goal of becoming a pediatric gastroenterologist. Her excellent grades — which she kept up despite her many school absences and several hospitalizations — led to an invitation to attend the National Academy of Future Physicians in Boston in 2025. She’s dual-enrolled in early college classes and will graduate from high school a semester early.
“I did an online shadowing of a gastroenterologist and he said that every month there is something new and innovative in his field,” said Elizabeth. “I strongly believe in wanting to give children their childhood back. I lost so many years to my disease, and I want to become a pediatric gastroenterologist just like Dr. Patel.”
She added, “Kids shouldn’t have to deal with this. I’m going to do something about that someday.”
