15 Common Misconceptions That Shouldn’t Exist About Irritable Bowel Syndrome (IBS)
1. Misconception: I have never heard of IBS. It must be rare.
Reality: IBS is the most common functional gastrointestinal disorder. It affects anywhere from 9-23% of the population depending on the country and estimates of anywhere from 25 million to 58 million people in the United States alone. These estimates are higher than those for many other common and well-known chronic medical conditions. See the July 9, 2011 post for some relevant statistics and links.
2. Misconception: IBS is not a real disorder but a catchall label for any gastrointestinal problem doctors can’t or won’t otherwise diagnose or IBS is a diagnosis of exclusion after doctors have tested and ruled out everything else it might be.
Reality: It has been well established in IBS research that IBS involves visceral hypersensitivity (abnormal pain thresholds), dysfunction in the brain-gut axis (communication between the brain and the digestive system), and abnormalities in the signaling and transport of serotonin, a neurotransmitter. Many other possible factors are still being studied. For over two decades, international experts in functional gastrointestinal disorders have widely recommended and used the Rome criteria to diagnose IBS based on symptoms and limited tests based on an individual person’s situation. They state that a Rome criteria diagnosis is 98% accurate. The current version is Rome III. Rome IV is currently under development. See the October 9, 2011 post for further details.
3. Misconception: IBS is caused by poor diet and lifestyle. Follow [specific diet] [exercise] [don’t smoke/drink] [sleep more/less] and you will be fine.
Reality: While many people with IBS are helped to varying extents by changes in diet and/or exercise or lifestyle routines, many others do not experience significant differences. Food and lifestyle do not “cause” IBS and some people who have healthful diets and lifestyles may develop IBS or continue to have symptoms anyway. Certain identifiable triggers may worsen symptoms for some people, but these can vary from person to person. There is no single foolproof list of “safe” or “unsafe” foods or lifestyle interventions. Consider viewing the following video on diet and IBS from the University of North Carolina Center for Functional GI and Motility Disorders. The presenter is Erin Slater, RD, LDN, a registered dietitian and person with IBS.
4. Misconception: IBS is “all in your head” or IBS is caused by stress.
Reality: IBS is a real physical disorder, just not one that can be obviously seen on existing tests currently available to health care providers outside a research lab. See Misconception #2. Because of the brain-gut connection and because the brain and the digestive system have serotonin and other neurotransmitters in common, in combination with other factors, ongoing physical and psychological stress can possibly contribute to the development of IBS or worsen symptoms to varying extents depending on the person. This is why some psychological treatment options are helpful to many people with IBS, even some who do not have coexisting mental health diagnoses. Researchers know that many people with IBS have coexisting depression or anxiety, either separately from IBS, or perhaps as a result of the stresses of living with severe IBS. These correlations are still being studied, but IBS, in itself, is not a mental health disorder and it is not “caused” by stress alone. See this overview of stress and its role in IBS from the IFFGD website.
5. Misconception: My (my family member’s) (my friend’s) IBS was cured by [name an intervention] so yours can be too.
Reality: IBS is a complex, unpredictable chronic disorder. Although there is much that researchers know about it, there is still much to learn. Each person’s IBS is different in symptom patterns, severity and other factors.While there are various treatment and management strategies, at this time, there is no way for anyone to predict which ones will help any given individual, and there is no cure. Some people are fortunate to have mild symptoms and/or symptoms that come and go intermittently. Many people’s symptoms improve somewhat over time and researchers estimate that every year about 10% become symptom-free. (Scroll down to see “Is IBS forever?” on the IFFGD site.) Some studies suggest that over the course of several years, a higher percentage will no longer have IBS, especially in the post-infectious subset. But the vast majority of people with IBS will need to manage it by some means over the long term and we cannot be quickly and simply restored to the way we were before we had IBS.
6. Misconception: IBS is the same thing as inflammatory bowel disease (IBD).
Reality: Although there is some research evidence of non-overt inflammation in some people with IBS, especially those with post-infectious IBS, (See the August 5, 2011 and September 10, 2013 posts.) and a small number of people have both conditions, IBS and IBD are very different disorders. See the August 31, 2011 post and a September 2013 post by About.com IBD Guide Amber Tresca comparing and contrasting IBS and IBD.
7. Misconception: IBS increases the risk of colon cancer.
Reality: There’s no reputable scientific evidence to support this idea. See a 2010 news release from the University of Michigan about a relevant study led by William Chey, MD.
8. Misconception: IBS is a women’s disease.
Reality: It is true that in most Western countries, about 2/3 of known people with IBS are female, however, in a few countries in Asia, the male-female discrepancy is not as pronounced. Researchers are still studying the possible differences in how IBS presents in women and men. It is thought that the difference involves both physiological factors such as hormones, and social and cultural factors such as greater access to or willingness to seek medical care. The following articles from the University of North Carolina Center for Functional GI and Motility Disorders explain more. “IBS in Women” and “IBS in Men”
9. Misconception: Children don’t develop IBS.
Reality: Estimated prevalence increases in adolescence and adulthood, but people of all ages can have IBS, including young children. See the April 11, 2012 post for more information and links to resources for children and teens with IBS and their parents.
10. Misconception: The high prevalence of IBS is the result of an affluent, modern,Western lifestyle.
Reality: IBS is found all over the world and in every socioeconomic group and ethnicity. Statistics for this blog indicate that it has reached over 100 countries on every continent in the two and a half years it has existed. In a 2012 post on his own blog FGID Update, “IBS:A Truly Global Phenomenon,” Olafur Palsson, PsyD. of the University of North Carolina Functional GI and Motility Disorders outlines some of analysis in many countries. Research by Val Harrington PhD of the University of Manchester in the United Kingdom reports records of symptoms consistent with what is now known as IBS at least as far back as the 19th century, perhaps even earlier.
11. Misconception: IBS is caused by lactose intolerance.
Reality: Lactose intolerance and IBS can cause some similar symptoms and many people have both conditions. But they are not the same thing. See the September 26, 2012 post.
12. Misconception: IBS is caused by gluten and/or fructose intolerance.
Reality: Again, food intolerances may coexist with IBS, but they are separate conditions. One popular intervention that is gaining attention and some scientific evidence for reducing symptoms in some people, is the low FODMAP diet, which includes restricting some fruits and wheat products for other scientific reasons, not intolerance per se. For more information, see the August 7, 2013 post.
13. Misconception: The only possible symptoms of IBS are abdominal pain or discomfort, diarrhea, constipation, gas and bloating.
Reality: It is true that, by definition, the Rome criteria include abdominal pain or discomfort and alterations in the form and/or frequency of stools, such as constipation or diarrhea. Gas and bloating are not in the criteria but are also very common in IBS. Not all people with IBS have additional symptoms, however, many do experience various extraintestinal (non-GI) symptoms or commonly overlapping conditions.These add to the self-perceived and objective challenges of managing IBS. For more information, resources and links, see the September 6,2011 and March 11, 2013 posts.
14. Misconception: Only a very small number of people with IBS have severe, disabling symptoms, so IBS is not a serious problem worthy of attention.
Reality: In 2011, a Rome Foundation Working Team report acknowledged that the percentages of people with moderate or severe IBS appear to be higher than these same researchers originally believed. (See the January 10, 2012 post.) There are many research studies and anecdotal reports directly from people with IBS that health related quality of life can suffer in many ways (See the June 25, 2013 post) with the reported burden sometimes greater than other chronic illnesses. This includes social stigma, which according to research by Tiffany Taft, PsyD of Oak Park Behavioral Medicine and Northwestern University, was perceived by significantly greater percentages of study participants with IBS versus participants with IBD. (See the April 15, 2013 post.)
15. Misconception: Well, if IBS is so common and such a struggle, there must be plenty of help available.
Reality: Truly knowledgeable and experienced health and mental health care professionals, research funding, local support groups and community education programs for people with IBS, families and professionals, and other resources are few and far between, out of proportion with the enormous numbers of people with IBS. A relatively small group of organizations, research entities, legislators and policy makers, websites, and individual professionals and people and families affected by IBS and related conditions all work long and hard in various ways on behalf of the IBS community. However, most of us come across erroneous information and opinions like those mentioned above and worse on a regular basis. These misconceptions come from the general public, the media, legislators, health care providers, and often people with IBS and families themselves. IBS Impact was created in the belief that this should not be the case.
Regular readers of this blog and supporters of IBS Impact’s philosophy, please share this post. If you are encountering this blog and this information for the first time, whether you are a person with IBS or a related condition, a family member, friend, health care professional or have some other role, we welcome you and encourage you to learn more from the reputable sources linked on this blog, our main website and social media. Knowledge is power and future progress for all of us with IBS.