When Matt Knoepfle was 10 years old, he began to experience complex gastrointestinal (GI) issues. Episodes of chronic constipation that happened almost weekly caused him such severe pain that he would curl up in the fetal position on the floor.
While doctor after doctor looked for a definitive diagnosis and solution, Knoepfle’s attempts at symptom management were largely trial and error. He often focused on eliminating various foods and tried to minimize stress. He avoided situations with seemingly problematic foods, or sometimes intentionally ate them because the day or two after an episode often offered a reprieve.
Over the years, these challenges taxed Knoepfle physically, disrupted his life, and isolated him from friends and family.
Help for Knoepfle and others
Knoepfle isn’t alone in the experience of living with chronic gastrointestinal challenges.
For many patients like him, the disruption to life and lifestyle can be as difficult as the physical pain and procedures. Resources and therapies to help are few and far between.
But that is now changing, thanks to the Gastrointestinal (GI) Behavioral Health Program that addresses the mental and behavioral health aspects of chronic gastrointestinal conditions alongside medical treatments.
More about the Gastrointestinal (GI) Behavioral Health Program
The initiative is led by clinical psychologist Jessica K. Salwen-Deremer, PhD, who is director of Behavioral Medicine at the Walter and Carole Young Center for Digestive Health and assistant professor of psychiatry and medicine at Geisel School of Medicine.
Salwen-Deremer specializes in providing both targeted mental healthcare to help GI patients navigate life with chronic, stigmatized health challenges and behavioral health therapies that improve patient outcomes.
“She was the first therapist I had ever seen that understood GI issues,” Knoepfle says. “The mental impact of a chronic GI condition can be devastating, but at the same time, it is more within my control than my physical issues. Finding my therapist and putting in the work has given me tools to help me cope and live my life as fully as I can. She has been a lifesaver in the truest sense of the word.”
Through the GI behavioral health program, Salwen-Deremer is building on her individual clinical work and developing a model for delivering this kind of care to patients around the country.
How the program began
In the past, Salwen-Deremer long felt there was more she could do for GI patients. “There’s a very limited number of GI psychologists in the country, and there’s a lot of patient need,” she says.
In her clinical practice, she would try to see more patients by offering them just a few sessions. But they really needed long-term treatment. Waitlists were growing and by the time patients were seen, their symptoms had gotten worse, making treatment more difficult.
Three years ago, Salwen-Deremer said to herself, “Enough is enough,” and began developing group therapy approaches for GI patients.
She started by providing directed hypnotherapy in a virtual group therapy setting. This therapy retrained GI patients’ brains to not respond to normal, healthy GI processes—like a stomach gurgling—in the same way as to pain caused by chronic conditions. Later, she and her team launched more groups, providing other therapies and skill-building guidance.
In 2022, Salwen-Deremer then received an award from the Susan and Richard Levy Health Care Delivery Incubator to formally develop and establish the Gastrointestinal (GI) Behavioral Health Program, devising innovative workflows, content, and delivery mechanisms to improve access to care on a larger scale.
“That helped us with a lot of growth, and so it’s just been this steady improvement and increase of the ways that we can help people and the number of providers that we have,” she says.
Accompanying Salwen-Deremer in her work is now another full-time faculty member, a postdoctoral fellow, and an intern.
How the program works
The Gastrointestinal (GI) Behavioral Health Program approaches patients with three different kinds of treatment: primary, complementary and supportive.
- Primary treatment tackles the physical GI symptoms, using interventions like cognitive behavioral therapy (CBT) or gut-directed hypnotherapy to disrupt the gut-brain connection that normally primes the body for activities like eating and excreting.
- Complementary treatment targets psychological challenges that interfere with a patient’s ability to manage their disease, such as treating them for panic attacks that they might have whenever they set foot in a hospital.
- Supportive treatment addresses the complexities of living with a chronic disease, helping patients lead “a life you care about in the context of unpredictable pain or symptoms,” Salwen-Deremer explains. Most sessions are conducted virtually, expanding the reach of the program and allowing patients like Maryland-based Knoepfle to participate.
Paying it forward
For Knoepfle, this kind of care is as vital as the care he receives from physicians.
He says Salwen-Deremer has been a critical part of his ability to navigate the tougher days. She helps Knoepfle strategize and prepare mentally ahead of difficult surgeries with long recovery times and holds him accountable for skill-building. And now, through the Gastrointestinal (GI) Behavioral Health Program, she encourages him to participate in group sessions, where he has tried new therapies and connected with others in similar situations.
“It can help make it a little more normal to realize, hey, I’m not the only one dealing with this,” Knoepfle says. “Even if they have a different diagnosis, they’re still struggling” with similar challenges and can talk about how it affects family, friends, and the ability to live a fulfilling life.
The program is also now expanding its therapeutic offerings by training more clinicians like Salwen-Deremer in GI psychology, streamlining access to the program, and supporting patients who may not be covered by insurance.
“This is a very specialized subfield where we’re working with the direct GI condition and GI symptoms, and it takes a lot of additional training as a provider," she explains.
Her aim is to deliver therapy and training that can be replicated or adapted beyond academic medical systems and to patients who do not have the same access to care due to insurance, location or other factors.
But, she adds, "we’re certainly leading the charge.”
The Gastrointestinal (GI) Behavioral Health Program would not be possible without the philanthropic support of LilaPants, a Knoepfle family business. “If our donations can help anyone who is struggling, they’re worth their weight in gold,” Knoepfle says. For the full story, read the December story in Giving in Action.
More resources
- Listen to Salwen-Deremer talk about how she is building new care models for patients with irritable bowel syndrome.
- Learn more about brain-gut health.