Toward True Awareness of IBS

Here are some common chronic health conditions: diabetes, coronary heart disease, asthma, IBS, kidney disease, inflammatory bowel disease. Can you rank them in order of the estimated number of people in the United States who have each condition?

From highest to lowest prevalence, the answers are:

IBS: 25-45 million, or 10-15% (1) with some estimates as high as 58 million (2) or 10-20% of the population (3)
Kidney Disease: More than 26 million (4)
Diabetes: 25.8 million (5)
Asthma: 24.6 million (6)
Coronary Heart Disease: 17.6 million adults age 20 or over (7)
Inflammatory Bowel Disease (IBD), with which IBS is often confused, 1.4 million.(8)

Are you surprised? Many people are, whether they have IBS or not. As self-advocates, we should be asking ourselves why and what we do about it. Most readers of this blog probably can identify others they know who have one or more of the other conditions, if they do not have one themselves. They most likely know the names of these disorders and have a basic understanding of what they are. Some organizations that represent these conditions are readily recognizable by the public: the National Kidney Foundation, the American Diabetes Association, the American Lung Association. the American Heart Association, the Crohn’s and Colitis Foundation. In many local communities, people who are diagnosed with one of these or many other conditions are routinely offered access to training on how to manage the disorder effectively, to clinics or phone lines where they may ask questions or express concerns to medical professionals, to support groups for themselves and/or their families, and perhaps referrals to clinical trials if appropriate and desired. This is as it should be.

Unfortunately, this is far less often the case for people with IBS. Granted, about 50% of people with IBS don’t even consult physicians.(9) But many IBSers anecdotally report being given relatively little information and left to fend largely for ourselves, with few resources in our own communities. Studies show that even as knowledge of IBS has been increasing over the years, many physicians do not use the standard Rome III criteria (see page 889) for diagnosis of IBS.(10) Also, while our available resources, IFFGD and the University of North Carolina Center for Functional GI and Motility Disorders among them, do very important work on behalf of the IBS community, how many laypeople understand what a functional GI disorder is and that IBS is the most common one? Why are the free and public online chats with UNC experts usually sparsely attended? Why do those of us who are open about our IBS often encounter otherwise highly educated acquaintances who ask us what IBS is, or media coverage that is sometimes blatantly inaccurate? Why are some IBSers so desperate that that they fall for the quacks that abound for IBS?

There are a few responses that are commonly heard in the IBS community as to why IBS is not a priority. First, it’s pointed out that every other health condition mentioned in this post, if not well managed, can be life threatening, while IBS is not. True. However, it is well documented, both in research and the personal experiences of many IBSers, that IBS that is not well managed can have major impact on quality of life.(11) Second, it’s said that 70% of IBSers have mild symptoms.(12) Granted. But even the remaining 30% is an extremely large number. Third, it’s said that while these other conditions have clear and organic causes and treatments, IBS can’t be seen on existing clinical tests and remains poorly understood, so we can’t expect equivalent resources to be available. Perhaps. But modern research is making the distinction between functional and organic increasingly blurry for IBS.(13) Some important things are understood about IBS that were not decades ago. Should we not support further scientific and social advances? IBS Impact was founded to say that none of these reasons should be a barrier to people with IBS and our supporters standing up for ourselves as other health and disability groups do. When we do, while miracles are not just around the corner, we will accelerate progress to our benefit.
1. International Foundation for Functional Gastrointestinal Disorders, Facts about IBS

2. Web MD Irritable Bowel Syndrome (IBS) Health Center, Overview and facts

3. University of North Carolina Center on Functional GI and Motility Disorders, Irritable bowel syndrome, 2.

4. National Kidney Foundation Home page

5. American Diabetes Association , 2011 National diabetes fact sheet

6. The American Heart Association, Heart and stroke statistics 2010 update. Circulation 121; 2010 February 23: e86.Published online 2009 December 17, doi: 10.1161/CIRCULATIONAHA.109.192667

7. Akinbami ,L.J., Moorman, J.E. & Liu, X. (2011 January 12) Asthma prevalence, health care use, and mortality 2005-2009 National Health Statistics Reports 32:1.

8. Crohn’s and Colitis Foundation of America. About Crohn’s disease and ulcerative colitis

9. University of North Carolina Center on Functional GI and Motility Disorders, Irritable bowel syndrome:2.

10. Spiegel, B, Farid, M., Esrailian, E., Talley, J. & Chang, L., Is irritable bowel syndrome a diagnosis of exclusion? A survey of primary care providers, gastroenterologists and IBS experts Am J Gastroenterol. 2010 April; 105(4): 848–858. Published online 2010 March 2. doi: 10.1038/ajg.2010.47

11. International Foundation for Gastrointestinal Disorders & the University of North Carolina Center for Functional GI and Motility Disorders IBS patients: their illness experience and unmet needs.(2009)

12. International Foundation for Functional Gastrointestinal Disorders Statistics

13. Drossman, D. A. (n.d.) The ‘organification ‘of functional gi disorders: implications for research.

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