Would Renaming Irritable Bowel Syndrome (IBS) Make a Real Difference?

Over the years, the symptom cluster currently known as irritable bowel syndrome or IBS has been called various other terms that are now outdated. These range from, among others, the extremely vague “nervous stomach” to the inaccurate “spastic colitis,” “irritable colitis,” “mucous colitis” (IBS, as currently understood scientifically, is not a form of colitis.) to “spastic colon,” as an apparent attempt to acknowledge the unpredictable motility found in IBS. “Irritable bowel syndrome” is the most recent name choice, as physicians and researchers began to realize that the symptoms of IBS form distinct patterns. “Syndrome,” in a medical context, means “a group of signs and symptoms that occur together and characterize a particular abnormality.” This part of the present name is more consistent with the symptom-based Rome criteria that functional gastrointestinal disorder experts have advocated as the international diagnostic standard for over two decades. Rome III is the current version. (See page 889.) Rome IV is presently under development.

Yet, many people with IBS, as well as professionals in the field, and even some people outside the IBS community find “irritable bowel syndrome” problematic as well. For one thing, because of the similarity in acronyms, IBS is frequently confused with inflammatory bowel disease (IBD), which is not the same condition and responds to different types of treatments than IBS does. In the experience of the IBS Impact founder, the general public, the media and even respected scientific journals on occasion, are not immune to this error, and it is frustrating to people with IBS and people with IBD alike.

Secondly, like it or not, any mention of the word “bowel” in everyday public conversation tends to be stigmatizing. In most cultures, talk of toilet habits is considered crude or impolite, often fodder for juvenile humor, suppressed snickering or stunned silence and a quick change of subject. Add the word “irritable” next to it which, in the scheme of unpleasant experiences, implies a very trivial and fleeting annoyance, not a complex, chronic medical condition with potentially severe impact on quality of life, and this ratchets up the opportunity for those who do not know better to make fun of people with IBS. If it’s possible to do so with no consequences, because historically, most people with IBS feel too embarrassed to identify themselves and protest, can society take our very real needs as a community seriously?

Recently, following an instance when a verbal play on the words “irritable bowel syndrome” was used publicly in an unrelated context meant to be humorous, the IBS Impact founder observed that the joke itself was amusing, but that the connection to IBS was not necessary and could be offensive, a comment with which several other conversation participants, including some who have no known connection to IBS, agreed. One asked why, given the problems described earlier in this post, the name has not been changed already, pointing out, among other examples, that, rightly, it is no longer socially acceptable to call a person who has Down syndrome a “mongoloid,” and that what previously was called “manic-depression” is now widely known as “bipolar disorder.”

The IBS Impact founder explained that while many within the IBS community do feel that “irritable bowel syndrome” is not an ideal fit, there are so many other pressing issues that need attention: basic awareness among people with IBS and families and health care providers themselves, let alone the general public, greater access to medical and mental health professionals and services in our local communities, such as IBS education programs and support groups, more research funding and IBS-friendly legislation, easier access to disability benefits if needed, and the list of needs goes on. People who have a similarly poorly understood chronic condition that commonly overlaps with IBS, “chronic fatigue syndrome,” also known as “chronic fatigue immune dysfunction syndrome,” and also known as “myalgic encephalomyelitis” have had similar debates in their community over preferred terminology, and the evolution to a more “serious” sounding name has been slow in many countries. Given all that, and the facts that the formal organizations that focus on IBS, where they exist in a handful of nations worldwide, are small, the pool of professionals who specialize in IBS, relative to other GI conditions, is also limited, and the number of people with IBS and families who are willing to “come out of the closet” publicly and advocate consistently over a long period of time is infinitesimal, it appears that, for the near future, a name change is low on the list of priorities for our community.

The original questioner then replied that in that person’s opinion, a name change would appear to be a higher priority if it encouraged and empowered more people with IBS to be open and to advocate for themselves without the stigma of the silly name. This might be true, although that result is difficult to predict before it happens. What would we reasonably change it to? Would anyone outside the functional gastrointestinal disorders community understand, for example, “Neurogastrointestinal Colon Dysfunction” or “Functional Colon Disorder?” It seems that the latter would imply wrongly to the average layperson that the colon functions, rather than, correctly, that there is a non-organic, non-structural, non-metabolic reason it doesn’t function– although even that traditional “functional” versus “organic”  dichotomy is becoming murkier with increasing research on IBS. In either case, it’s realistically likely that one’s conversation partner would ask, “What’s that?” forcing the brief clarification, “IBS,” and we would be back to the original problem. By the time any new terminology was well established in the lexicon, would it again be quickly obsolete from new scientific understanding about what IBS actually is?

What do readers think? Would calling IBS something else make a meaningful difference on any level?

• Posted in: Awareness ♦ Functional Gastrointestinal and Motility Disorders ♦ IBS ♦ Irritable Bowel Syndrome
• Tagged: stigma