A new national survey by Health Union of more than 1,000 individuals with Irritable Bowel Syndrome (IBS) reveals that the condition is difficult to diagnose and often even more difficult to treat. Respondents often found healthcare providers and the public in general lacking in empathy and understanding of the full impact of the disease. Self-treatment often becomes the norm and controlling symptoms difficult.
IBS is a condition involving recurrent abdominal discomfort and pain accompanied by disordered bowel movements that occurs in roughly 10 to 15% of adolescents and adults in North America. Exact numbers are unknown, with vast underreporting due to many patients with IBS symptoms not consulting a physician and not being formally diagnosed. Symptoms include, but are not limited to, changes in bowel habits, such as constipation, diarrhea, or alternating occurrences of these. Other symptoms may include difficulty swallowing, acid reflux, and nausea.
The exact cause of IBS remains unknown, with multiple factors, including psychosocial, environmental, and gut physiology combining to produce symptoms. The lack of an exact cause leads to extreme difficulty in diagnosis. With no definitive diagnostic test, IBS is diagnosed through symptom-based guidelines. Sometimes symptoms may be mistakenly diagnosed as IBS when they can actually be signs of other conditions, such as celiac disease, inflammatory bowel disease, or colorectal cancer.
Along with diagnostic difficulties, patients find the severity of the condition and the impact on quality of life to be misunderstood. “So many with IBS go undiagnosed, and while it’s unfortunate, it’s not too surprising. When you hear ‘it’s just IBS’ it doesn’t exactly feel like you’ve received a proper diagnosis of a legitimate illness” said Stephanie Huston, IrritableBowelSyndrome.net patient contributor and Health Union employee.
There is no cure for IBS. Treatment focuses on improving gastrointestinal symptoms and improving quality of life. Most respondents report recognizing the triggers for their IBS, but still found it difficult to manage symptoms, with only 2% indicating they were able to manage all of their symptoms. The symptoms reported most difficult to manage were the urgent need to move bowels (77%), chronic/persistent diarrhea (67%), and frequent bowel movements (58%).
Treatment for IBS proves difficult and respondents often turned away from their healthcare providers (HCPs) in favor of self-care approaches. Four in ten reported being dissatisfied with their HCP, citing issues with empathy, education, communication and non-pharmaceutical approaches. Thirty-eight percent were not currently seeing an HCP, with 32% of those choosing to manage on their own and 27% not finding their HCP helpful in treating their IBS.
“I’ve seen a number of healthcare practitioners for my IBS, including physicians, naturopaths, and acupuncturists. Some have been more helpful than others, but through all my relationships and searching for the right solution for me, I’ve learned how to be a better advocate for my own health. No one can tell you what is best for you. They can offer suggestions and options, but it’s up to the individual to decide and to weigh the risks and benefits of each treatment option,” said patient contributor Emily Downward.
Respondents most often turned to diet and lifestyle changes to manage their IBS. Nearly all (98%) tried at least one diet strategy. Other top lifestyle changes included exercise (43%), use of probiotics (43%), and vitamins (44%). Only 15% of respondents have tried a prescription IBS medication and only 5% were currently using one.
Tim Armand, president and co-founder of Health Union, noted the difficulties IBS patients often face, stating: “Living with IBS can be very frustrating. Changing diet may help, but doesn’t always work to prevent symptoms, and other people don’t understand how much of an impact IBS has on daily life. We hope that IrritableBowelSyndrome.net can help fill the gap by providing information and community support that is often now lacking.”
The IBS in America survey was conducted online March 31, 2016, to May 27, 2016, with 1,045 respondents who self-diagnosed with IBS and living in the U.S. More details about the survey are available on request.