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the symptom cluster currently known as irritable bowel syndrome or IBS has been called various other terms that are now outdated.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?

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

  1. Reblogged this on clinicalalimentary and commented:
    This is a thought provoking piece about renaming IBS – we certainly need more IBS advocates would a name change increase advocacy?

  2. Another excellent post Nina – hope you don’t mind me re-blogging it!

  3. bevsfoodhaven says:

    Reblogged this on bevsfoodhaven and commented:
    I don’t think this would help but what do you think?

  4. patientj says:

    Sounds like a solution that’s looking for a problem. What difference would we want to effect by renaming irritable bowel syndrome? If people were embarrassed about admitting they have the condition, I don’t think it make any difference whatsoever. For a start, I say I have IBS, which already does away with having to use the ‘bowel’ in conversation. If it was renamed, you’d have two problems: people would be unfamiliar with the term and patients would have to describe their symptoms and use those words that seem to make us squeamish.

    If stigma is an issue, I would make light of it. I sometimes tell people I have a funky colon. It gets the message across. Conversely, I think any use of medical terms actually increases the stigma. I don’t want to be defined by my condition and medical jargon does just that. The main symptom I have as a result of my IBS is excessive flatulence; however, I cringe just typing it. It sounds too clinical. It sounds too onomatopoeiac. Instead, I tell people I can’t eat something because it makes me fart too much. Euphemism and colloquialism are our friends – save the techy language for professionals and discussions with your boss.

    However, I believe a narrower definition of the individual symptoms as clinical diagnoses in their own right what would make a much greater difference to the treatment and management of IBS for most patients. On my blog, for instance, I have advocated for a proper clinical definition of excessive flatulence (http://patientj.wordpress.com/2014/01/05/defining-excessive-flatulence/) pointing out that some of the causes are treated as separate conditions in themselves but when those conditions aren’t the cause it is unaccounted for in any of the Rome criteria. Furthermore, it seems IBS is the diagnosis when nothing else fits, which in itself is distressing because it tells the patient the doctor doesn’t know what’s wrong with you and, I personally felt, doesn’t want to help you find out more.

    Clearly doctors need more education to help them understand the condition and what can be done about it (my GPs were woefully behind the curve when it came to understanding how to treat my IBS, although they were quite happy to diagnose it). However, changing the name won’t help with the education (indeed it might hinder it). A more granular diagnosis might help identify better treatment plans or highlight the patient’s key concern (is it the pain, bloating, diarrhoea, constipation…) and help them tackle that. Just taking the time to do this might help a patient; a sort of placebo effect if you will.

    So, in summary, renaming IBS will not make any significant difference to the recognition, understanding or management of the condition. Making up and popularising euphemisms for IBS might have a greater affect in helping people talk about their condition and making the wider public aware of what it means. But, perhaps the best way to help patients is to clinically divide IBS into more subsets and specific symptoms to make management and the identification of key trends and correlations easier, and hopefully provide better management and treatment in the long run.

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