This report captures the experiences of over 3,000 people living with IBS – a condition that affects an estimated 11% of the global population. Drawing on large-scale survey data, patient voices, and expert reflections from leading healthcare professionals, it surfaces key challenges in care and offers practical, evidence-informed strategies for clinicians. It reveals what patients are up against – and what they wish clinicians understood.
The data is clear: IBS is more than a digestive disorder. It’s a daily disruption, a mental burden, and an invisible battle – and clinicians are uniquely positioned to help patients regain control and improve their quality of life.
This report is based on a cross-sectional survey administered by Nerva in March 2025. The survey was designed to evaluate the lived experiences, care pathways, and perceived treatment outcomes of individuals with irritable bowel syndrome (IBS).
A total of 3,403 respondents completed the survey. Participants were drawn from geographically diverse regions, primarily the United States, United Kingdom, Australia, and Europe.
Navigating IBS begins with more questions than answers – but better conversations and earlier recognition can help change the course.
Despite IBS being one of the most commonly diagnosed GI disorders, survey respondents reported facing a fragmented and frustrating path to care.
Only 23% of respondents received an IBS diagnosis within the first year of symptoms. In contrast, more than a third of respondents faced diagnostic delays longer than 3 years.
Proactive patient engagement and early symptom education may help shorten diagnostic timelines and improve care trajectories — even when a formal diagnosis is not immediately possible.
Reflecting these challenges, 31.2% of respondents were misdiagnosed before receiving their final IBS diagnosis.
Even once a diagnosis is made, many patients said they leave with more questions than answers.
When asked, "How well did your healthcare provider explain your IBS diagnosis?", responses revealed a gap in patient understanding. 27% of respondents said their healthcare provider didn’t explain their IBS diagnosis at all — compared to just 4% who felt extremely well-informed.
“I was told I was exaggerating and that it was purely anxiety and stress related.”
Survey respondent
39, Female, Australia
Over half of respondents (52.1%) said their healthcare provider did not discuss the gut–brain connection at all during their diagnosis or treatment planning, with only 14.5% reporting that it was discussed in detail – despite its inclusion in the American Gastroenterology Association (AGA) quality indicator guidelines.
When respondents were asked, “Do you understand the role of the gut-brain connection in IBS symptoms?”, the difference between those who had completed Nerva and those who hadn’t was clear.
Among non-Nerva program users, only 13.6% rated their understanding as a 5 (very well). In contrast, 41.5% of those who completed Nerva gave it a 5.
This gap in responses suggests completing brain-gut therapy deepens awareness of the gut-brain connection – giving people a better understanding of their condition.
GI psychologist Dr. Megan Riehl underscored the importance of educating patients on the gut-brain connection in her most recent webinar – not just to inform, but to validate their experience and build trust in the treatment process.
“IBS symptoms are very real and driven by what happens between the gut and the brain. The brain of someone living with IBS has a harder time down-regulating even benign gut sensations – and if we don't explain that, patients may believe their pain isn’t valid. Helping them understand that this is a real, physical interaction between the brain and the gut can make all the difference in treatment engagement.”
Dr. Megan Riehl, GI Psychologist, University of Michigan
[Watch the webinar]
44% reported using social media, forums, support groups, or advice from family and friends to learn about IBS symptom management strategies – highlighting how untrained, word-of-mouth guidance is becoming a key part of how many patients navigate their condition.
Receiving a diagnosis for IBS often requires self-advocacy, reflecting the challenges patients and clinicians face in navigating a complex condition.
These findings underscore the need to clearly explain the gut-brain connection so patients feel empowered to consider brain-gut behavioral therapies as a valid part of care.
When asked to describe the most challenging part of managing IBS, responses revealed that some patients – particularly younger women – felt their symptoms were minimized, with a few mentioning "not being taken seriously because I'm a young woman" or similar wording.
IBS casts a shadow over mental health and lifestyle – but understanding the extent of that impact can help guide better support.
Many patients reported fluctuating severity, making it difficult to plan even basic activities. For 1 in 3 respondents, symptoms were described as severe or debilitating – a striking reminder of the silent burden IBS places on everyday life.
“We need to explain that we can’t remove all of our patients’ symptoms, but with time, we can hopefully find a solution that helps them take back control of their life.”
Dr. May Wong, Gastroenterologist.
Watch the webinar
Those who completed Nerva reported significantly lower emotional burden and daily disruption compared to those who did not. Specifically, 25% fewer reported moderate to extreme hopelessness, 32% fewer reported high disruption to daily life, and 37% fewer reported extreme isolation.
IBS symptoms don’t stop at the office door. Many respondents reported that managing unpredictable symptoms at work affects not only their performance but also their long-term career opportunities.
Stress isn’t just a trigger for IBS symptoms – it’s part of a self-reinforcing cycle.
While almost 99% of respondents acknowledged that their symptoms are worse when they feel stressed of anxious, only 11.8% reported being offered Psychological therapies (Gut-directed hypnotherapy (GDH), cognitive behavioral therapy (CBT), other psychological therapy) by their healthcare practitioner.
“I think a lot of the gut-directed hypnotherapy helps patients learn to calm themselves. Rather than reacting strongly to every symptom, they can manage it more effectively and avoid that anxiety spiral we often see in IBS.”
Ellie Anderson, Accredited Practising Dietitian & PhD Candidate,
Mind+Gut Clinic and Monash University
[Watch the webinar]
As part of an integrated care model – combining pharmacological, dietary, and psychological approaches – gut-directed hypnotherapy can play a clinically meaningful role. By targeting dysregulation within the gut–brain axis, including visceral hypersensitivity and heightened central arousal, it may help break the cycle and improve long-term symptom control.
IBS is a multifaceted disorder, and care is beginning to reflect that complexity with broader, more personalized strategies. Yet most healthcare providers still offer dietary changes and medications as first-line options for their patients:
The low FODMAP diet remains a cornerstone of IBS dietary protocol and plays an important role in symptom management.
Approximately 87% of respondents had attempted to manage their IBS through a dietary intervention, such as the low FODMAP diet. Yet survey responses reveal common challenges with adherence, cost, and sustainability.
Of respondents who noted diet as one of the symptom management tools that they have tried, 26% reported spending over $100 extra per month on specialized IBS-friendly foods or diets –with 10% spending over $200 extra per month.
For some, the very structure of dietary therapy can become part of the problem. Heightened vigilance around food may activate the same gut-brain pathways that drive symptom flare-ups.
A 2016 randomized clinical trial found that gut-directed hypnotherapy works just as well as the low FODMAP diet in managing IBS¹.
Participants in both groups experienced similar levels of improvement, suggesting that IBS symptoms can be effectively managed through either a top-down or bottom-up approach.
Further research shows that the best patient outcomes occur when medical, dietary, and psychological interventions are integrated into care².
Patients often cycle through restrictive diets, medications, supplements, and trial-and-error remedies without finding lasting relief.
Without brain-gut education and behavioral support, many patients remain stuck managing symptoms reactively – rather than transforming the underlying gut-brain miscommunication.
For clinicians, integrating brain-gut behavioral therapy into IBS care can help patients move beyond reactive symptom control toward long-term, system-level regulation.
A critical part of that shift is how providers communicate. Simple, validating statements like, ‘IBS is real, and I believe you’ can fundamentally shape the patient experience, laying the groundwork for trust and therapeutic engagement. When patients feel acknowledged and understood by their healthcare provider, they could be more likely to adhere to treatment plans and achieve better outcomes.
Clinical evidence now strongly supports gut-directed hypnotherapy as a powerful intervention for IBS. Almost 30 studies have been published, with results showing significant improvements in symptoms, including abdominal pain, abdominal bloating, bowel dysfunction, and overall severity³. As digital tools gain traction, they offer a practical way to deliver this care more broadly.
A randomized control trial from Monash University, published in the American Journal of Gastroenterology, demonstrated that digital gut-directed hypnotherapy can deliver strong clinical outcomes⁴:
While awareness and treatment options for IBS are expanding, many patients still face barriers to accessing the care they need:
With half of respondents cutting back on essential expenses and nearly a third facing long wait times, the need for accessible, scalable care is clear. Digital therapeutics are now recognized in the American Gastroenterological Association’s (AGA) quality indicator guidelines as a recommended option for IBS. As a digital therapeutic, Nerva offers a clinically backed, affordable way to help address barriers like cost and access.
This affordability is backed by evidence: an abstract found that the average out-of pocket cost of managing IBS symptoms for 6-months dropped from $1,259 USD to $644 USD after just six weeks of using Nerva, with costs stabilizing at around $500 over time⁵. The findings highlight how digital therapeutics can offer a sustainable and effective solution to the affordability gap in IBS care, while also improving symptom and psychological outcomes.
From long diagnostic delays and limited treatment conversations, to the overwhelming burden of symptoms and cost, the experiences of people living with IBS reveal both the shortcomings of the current system and the promise of a more integrated approach.
By recognizing IBS as a disorder of gut–brain interaction, embracing multidisciplinary care, and expanding access to evidence-based digital tools like gut-directed hypnotherapy, clinicians have the opportunity to deliver not just symptom support, but meaningful, lasting improvements in quality of life.
Referring Nerva gives your patients a proven, scalable option for managing IBS beyond diet and medication and allows you to deliver the gold standard of integrated care.
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