On its surface, the subreddit for irritable bowel syndrome (IBS) is a den of tongue-in-cheek humor; its logo reimagines the classic Reddit alien gripping its gut in discomfort, scatological memes abound, and the most active members sit “on the porcelain throne.” Beyond the joking veneer, however, the online community shares stories of how the disorder has tinged almost every aspect of members’ lives with shame and discomfort. In some cases, the resulting anxiety, depression, and avoidance can be debilitating, disabling, or even life threatening.
“Spend 10 minutes on the IBS subreddit, and there will be at least one person who is suicidal, posting to that list saying, ‘I can’t take this anymore. This has destroyed my life,’” says Melissa Hunt, a clinical psychologist in Penn’s Department of Psychology.
This is part of why Hunt has spent almost two decades studying and treating IBS, and why she just published the second edition of her book “Reclaim Your Life from IBS,” which offers a proven treatment plan for those suffering with the disorder. A year after the first edition went out of print, Hunt was finding copies selling on eBay for hundreds of dollars. In response to the demand, she wanted to provide an update that included more tools to aid in treatment as well as a review of the most recent advances in the field.
One of the most important advances is a deepened understanding of the mechanism of IBS, which is now characterized as a disorder of the gut-brain interaction, says Hunt. Signals from the gut that might go unnoticed in individuals without IBS instead get transmitted to and interpreted by the brain as pain or the urgent need for a bowel movement. This can lead to anxiety, and the intestine, which is lined with stress hormone receptors, responds by cramping and spasming. “And then you’re off to the races with this positive feedback loop of increasing hypervigilance by the brain and then hypersensitivity in the gut,” says Hunt.
Symptomatically, IBS manifests as abdominal pain and either constipation, diarrhea, or alternating bouts of both, and by some estimates as many as 15% of the population struggles with some form of the disorder. For those who are more prone to diarrhea, the anxiety around explaining frequent trips to the restroom or being too far away from a convenient restroom can lead them to avoid social situations and may ultimately manifest as agoraphobia.
“People get incredibly paranoid: ‘I can’t go to a restaurant because I’ll have an attack. I don’t want to have to leave the table and be away from everybody, and what if the bathroom is occupied? It would be a disaster, so I should just stay home,’” says Hunt. “Your life gets really small really quickly.”
The world-shrinking nature of the condition, paired with frequent physical discomfort, can lead to desperation. Many take extreme measures, usually in the form of dietary restrictions or multiple medications, in an attempt to reduce their symptoms.
However, even the effectiveness and side effects of many clinically prescribed interventions, such as laxatives or antibiotic treatments, can vary. For example, one diet that often works well to treat IBS symptoms, called “low-FODMAP,” is so restrictive that adherence is virtually impossible unless patients can prepare every meal themselves, says Hunt. Counterintuitively, this diet can harm intestinal health by starving important gut bacteria, she says.
What these treatments all share is their focus on the “gut” side of the gut-brain interaction. Instead, Hunt focuses on the brain. She uses cognitive behavioral therapy to help patients reduce their anxiety and hypervigilance around gut sensations and encourages them to slowly expose themselves to food and situations that they associate with their individual IBS symptoms. She also teaches them to stop catastrophizing, falling into the mental trap that the worst outcome is bound to happen. This approach actually leads to reductions in visceral hypersensitivity, allowing people to alleviate symptoms while eating whatever they want.
“If half of what’s going on in IBS is the way the brain is interpreting those signals, then therapy that helps you reinterpret those signals in a different way is going to help,” says Hunt. “That’s why talking about it is going to change their urgent diarrhea, which is initially hard for some patients to believe.”
Making treatment accessible
When Hunt initially tested and published a study of a low-intensity CBT treatment with limited but active therapist involvement, she was surprised by its efficacy in reducing symptoms and improving quality of life, she says. Several peers encouraged her to pursue larger studies and publish more on the subject.
Although more studies might look more prestigious, Hunt says she felt she could reach more patients and treatment providers with a self-help book. So, she wrote the first edition, which she tested with a randomized controlled trial, the gold standard for studying a treatment’s effectiveness. As in the first study, participating patients saw consistent improvements in their quality of life and IBS symptoms.
In the second edition, she explores advances in treatment made in the past decade. She added a chapter on diet, which explores recent research on restrictive diets and the ways healthy eating habits might help alleviate symptoms. She also dives into the benefits of exercise and nonjudgmental ways for people to help motivate themselves in that arena.
Hunt says she hopes the new edition will be useful to both patients and clinicians, including gastroenterologists, and therapists. Throughout the book, she offers more clinical anecdotes so that readers might find a case that resonates, and she ends with two mock patient stories, to show how someone might work through the text with and without a therapist.
Ultimately, Hunt says the book will give people like those on the IBS subreddit access to affordable, scientifically proven help. “The real goal of treatment for IBS is to get people their lives back, not necessarily to make the symptoms go away forever,” says Hunt. “You may have GI discomfort from time to time—everyone does—but you can still live a very rich, meaningful life.”