April marks another Irritable Bowel Syndrome (IBS) Awareness Month in Canada. Affecting 13-20% of the population, this diverse condition can have a drastic impact on a person’s life. How drastic, you ask? Enough that many patients say they would even risk death for a chance at a cure, according to a surprising study published last summer by The American Journal of Gastroenterology.1
Despite decades of research, there is still no cure for IBS, which is a chronic condition for most diagnosed individuals, frustrating both patients and physicians. Health care providers offer individualized treatments for the varied symptoms associated with IBS, which include abdominal pain or discomfort, bloating, diarrhea, and constipation. Some individuals respond well to treatments, while for others, IBS is an ongoing battle against relentless symptoms.
Perception and Perspective
In this study, the researchers started by developing a unique survey to evaluate IBS patients’ experiences with IBS, perception of the risks associated with medications used to treat IBS, and willingness to accept hypothetical medication risks for a chance of complete cure. The study included 186 IBS patients, aged 18 years and older, who met the Rome III criteria for IBS.
There is no evidence for a relationship between IBS and an increased risk of colorectal cancer, but 49% of the study’s participants believed that there was an increased risk, and 54% of them held the belief that their IBS symptoms would never go away. About 30% of the participants were also convinced that IBS would affect their lifespan, even though this does not correlate with current evidence. Health care providers can help patients with unwarranted fears around the long-term consequences of IBS by reassuring them about the condition. The researchers also compared the participants’ perception of their own IBS symptoms with their rating on a validated IBS severity scoring system. It showed that patients have a slight tendency to underrate the severity of their IBS symptoms. This is an important finding, the study authors say, because of the concern that some health care providers might think that IBS patients exaggerate their symptoms.
No Ordinary Gamble
The final part of the survey implemented a tool called the Standard Gamble, which asks patients to choose between different percentages of risk of death and chances for a cure from their disease or ailment. In this study, the researchers asked participants about a hypothetical medication that would cure all of their IBS symptoms without the need for further IBS medications. The participants claimed that they would accept a median 1% risk of immediate death for a 99% chance of a total cure. The median level of risk patients were willing to take was the same for all subtypes, such as IBS-Constipation and IBS-Diarrhea. Factors such as age, gender, general risk-taking behaviour, duration of IBS symptoms, current medication use, and prior side-effects from medications did not appear to affect the participants’ willingness to risk all for a possible cure from their IBS symptoms. As the study authors explain, “This remarkable willingness to risk sudden death illustrates how significantly the burden of IBS symptoms compromises the quality of patients’ lives.”
In reality, of course, there is no perfect cure, and no magic answer to chronic disease. If you or someone you care about is affected by IBS, do not lose hope and do not give up on finding effective treatment. A vast amount of research is still dedicated to this area and practitioners introduce new or improved treatments for the symptoms of IBS regularly. About 40% of individuals with IBS never seek treatment, which means they are living with ongoing disruptive, possibly painful, symptoms without the benefit of available treatments. If you think you may have IBS, or if you received a diagnosis years ago but gave up on treatments, talk to your health care provider. There are several and varied therapies that many individuals find helpful. These include over-the-counter and prescription medications, diet and lifestyle modifications, psychological counselling, and even physiotherapy treatments specifically aimed at helping individuals with IBS.