Basic introductory materials on IBS aimed at people who are undiagnosed or newly diagnosed tend to have a positive tone. We are told that there is nothing visibly wrong with our digestive tracts, that we are not at particular risk for colon cancer, and yes, we may have abdominal pain, diarrhea, constipation, gas and/or bloating, but for many people, these symptoms are mild and/or sporadic. Such materials generally attempt to assure us that while there is no cure for IBS, with a few diet modifications, exercise and stress management, most of us will be just fine, and for those who are not, medications are available if we consult our doctors.
Most of the above description is likely true for the about 40% of people with IBS that a Rome Foundation Working Team Committee estimated in 2011 are mildly affected, and a portion of the 35% estimated to be moderately affected. That still leaves about 25% who can be classified as severely affected. (See the January 10, 2012 post.) Given that IBS affects anywhere from 9-23% of the population in different countries worldwide, even that last subset alone is quite large. Those of us on the moderate to severe part of the spectrum who have lived with IBS for many months or many years understand that our reality is not as simple as the first paragraph would suggest. Any particular treatment intervention only helps some people, there’s no way to predict which ones will work or not for any specific individual, and even the most statistically effective options, like gut-directed hypnotherapy or cognitive behavioral therapy, aren’t always readily available or foolproof. Historically, most IBS treatment has focused on identifying and attempting to minimize whichever bowel symptom appears to be predominant or most bothersome.
As has been written on this blog several times in the past, including September 6, 2011 and March 11, 2013, irritable bowel syndrome isn’t even just about bowels for the approximately one-third of us who, according to Olafur Palsson, PsyD. of the University of North Carolina Center for Functional GI and Motility Disorders, experience significant non-GI symptoms or even larger percentages of overlapping medical conditions. Traditional or complementary health care, medications, supplements, special foods, extra personal hygiene items, books and CDs about IBS, etc. are all potential expenses that add up for the households of those with significant IBS. Some people with IBS are unable to continue their education or employment, and even those who are may find their productivity suffers, affecting colleagues, the employer and ultimately society. (See the March 19, 2012 post.) Relationships with family and friends are also a common concern. (See the September 18, 2011 and February 27, 2013 posts.) None of this is news to medical and mental health professionals who specialize in functional gastrointestinal disorders like IBS and interact with the most significantly affected of us on a regular basis, but quantifying this for the larger community of gastroenterologists and other medical providers in various specialties is an important part of awareness. An interesting new study has recently been presented at the annual Digestive Disease Week conference for gastroenterology professionals in May 2013 that may become a step forward in that endeavor.
As Dr. Palsson reports on his own blog, FGID Update, in the post entitled, “DDW 2013 Note: Self-Perceived Poor Health in IBS is Mostly Due to Other Things Than Bowel Symptoms” he, as well as others who study or treat IBS or other chronic conditions, has sometimes observed striking discrepancies between the objective severity of symptoms and affected individuals’ self-reported state of health. In other words, some people with significant symptoms rate their health as excellent while others with seemingly fewer or less severe symptoms may state their health is poor. According to Dr. Palsson, the new study, led by Jeffrey Lackner, PsyD of the University at Buffalo, State University of New York, and a team of many other researchers from Buffalo, Northwestern University in Chicago and Wayne State University in Detroit, Michigan, involved 235 adults with IBS. Participants were asked to complete detailed questionnaires on health, psychological symptoms, non-gastrointestinal physical symptoms, quality of life and social functioning. Dr. Lackner and his colleagues found that the actual severity of IBS symptoms, as measured on a standard scale used in most IBS research, had relatively little to do with how study participants perceived their own health. There were many possible variables involved, but the strongest correlations with reported poor health in this specific study were fatigue, somatization (high number of non-GI symptoms), negative social interactions and anxiety or depression. As Dr. Palsson seems to suggest, the results point toward both a need and an opportunity for medical professionals to shift focus when needed to address these issues with the people with IBS they affect. Some existing treatment options and educational approaches may help, and more attention to these issues in future research may lead to further advances in the years to come.
While the number of people in this study was relatively small, and, in a research context, cannot yet be considered definitive, the evidence appears to validate the experiences of both some functional gastrointestinal disorder professionals and some people with IBS , including the IBS Impact founder, on aspects that have historically received relatively scant attention. May the work of Dr. Lackner and his colleagues bring some hope and acknowledgement to others who may struggle with some or all of the issues addressed by this study. IBS Impact actively encourages awareness of many aspects of IBS, whether they are medical, psychological, social, financial or other, for this broad, multifaceted approach is likely the best chance for deep understanding of IBS-related needs and long-term societal changes in this regard.