Irritable Bowel Syndrome (IBS) and the Myth of a Cure

One can’t run an IBS website, forum or active social media account without sooner or later encountering all sorts of claims about a cure for IBS. Vigilant site owners and moderators who wish to do so can filter out many blatant offenders, but the same themes recur in forum postings, in the spam mail to owners of sites like IBS Impact, in Internet search results, and in the occasional inquiries of acquaintances with IBS or an exasperated family member who wants to know if his or her relative with IBS or the doctor has reputable information or junk science. Certainly, if one is new to information about IBS and struggling with symptoms, it’s understandable to want to believe anything or anybody that just might hold the key to getting rid of this highly disruptive condition quickly and forever. The people behind IBS Impact and probably the vast majority of readers and site visitors have been in that state of mind more than once. Unfortunately, IBS doesn’t work that way, much as we would like it to.  As of now, 2014, there is no cure for IBS. Conventional medicine cannot cure IBS. Alternative medicine cannot cure IBS. While the science of IBS is evolving and advancing each year, a true cure is a long way away. For a small percentage of people with IBS each year, with luck and time, IBS symptoms will go away spontaneously,  (Scroll down to “Is IBS forever?”) but for the near future, the best most of us can hope for is successful management, with fewer, less intense and/or less frequent symptoms. Anyone who promises a cure is telling an untruth, is misinformed, or is using the word  “cure” very loosely.

The most obvious version of the mythical miracle IBS cure– although perhaps not, since these marketers would not persist if some people were not taken in by them– usually appears in spam emails, some IBS discussion forums, and random Internet ads when one searches most topics related to IBS. This kind of advertiser is precisely why IBS Impact chooses to to pay WordPress, which hosts this blog, for its “no ads ” option to suppress all types of ads on this blog. Typically the “cure” is some kind of expensive supplement that is supposed to stop symptoms quickly in days or weeks. Frequently, it claims to be “natural” and may involve some blend of herbs, antioxidants or probiotics that make it sound legitimate. In themselves, probiotics are generally accepted by IBS professionals as reasonable options to try, with the understanding that there are thousands of strains and combinations, only a tiny fraction of which have undergone clinical trials for IBS. However, reputable professionals do not claim that a specific probiotic formula or anything else is any more than one type of intervention that may help some subset of people with IBS.  Often, purveyors of “miracle cures” are very vague about what is in the product until they have one’s contact information and have separated individuals with IBS or their families from their money. Some may claim to offer money back guarantees, but if the product is so good, why should that be necessary? If it’s so simple, why have decades of peer reviewed academic research all over the world not yielded that specific answer? How can an anonymous stranger on the Internet know that something will “cure” all or most people with IBS, in all our variations, when our own medical providers who know our individual health histories cannot? Anyone who does not recognize or acknowledge that different people with IBS, even with similar symptoms, often have different experiences and outcomes with any given treatment is probably not familiar with more than one person with IBS.

Then there are those who claim we can “heal” ourselves or “reverse” IBS by ridding ourselves of toxins through cleanses or extremely restrictive diets free of genetically modified organisms or the like, or that we can do so by zeroing in on the “root cause” of IBS like Candida overgrowth, parasites or food intolerances, to name a few common claims.  Some of these statements have grains of truth in conventional medicine as IBS is currently understood, but are not quite accurate. Food intolerances indeed often have similar symptoms to IBS. Lactose intolerance, because it is very common in most ethnic groups, often coexists with IBS,  but is most often genetic, involves a deficiency of a specific enzyme produced in the small intestine, not the colon, and one condition does not cause the other. True fructose intolerance is less common, also hereditary, and is usually evident very early in life because of major medical complications if unrecognized.  Their own previous results regarding non-celiac gluten sensitivity and IBS  have recently been called into question by the very researchers at Monash University in Australia who first identified NCGS  and developed the low-FODMAP diet for IBS. With the low-FODMAP approach, people with IBS are encouraged to reduce or avoid some of these same food components to lessen –not cure–symptoms, but for completely separate scientific reasons. If true food intolerances are the only issue, and symptoms completely resolve from avoidance, then the initial diagnosis of IBS was not accurate.  IBS is not a catchall diagnosis, but one that is specific.

As for parasites, it is very well acknowledged by the functional GI professional community that gastrointestinal infections, including ones from parasites, can trigger first onset of post-infectious IBS shortly thereafter, but by the time the functioning of the gut is disturbed by IBS, the parasite is gone. By definition, in addition to the specific description of IBS symptoms outlined in the Rome III criteria page 889, if any structural, organic or metabolic cause can be found for symptoms, it’s not IBS. In short, if a parasite is still detectable, it’s a parasite, not IBS. In industrialized countries, parasitic infections are relatively uncommon, typically from contaminated food or water or improperly cooked meat, or recent travel in a region of the world with less reliable sanitation practices, not transmitted casually or spontaneously developed. Therefore, if one is at risk for a parasite, one is likely to remember. At this point in the science, no one can say with certainty that he or she knows all the “root causes” of each individual’s IBS in order to promise a cure. What can be said is that in general, for people with IBS as a group, some potential causes and treatments have more extensive and reliable evidence than others. For any given individual, effective interventions are still a matter of trial and error.

Some of the common “alternative” theories mentioned above have no reliable peer reviewed evidence in relation to IBS.  Candida overgrowth is one of these. Colon cleanses are another. The American College of Gastroenterology links on its website an article that states there is no evidence that colon hydrotherapy in particular has any medical benefits, and may be dangerous if it disturbs the body’s electrolyte balance or causes dehydration. In IBS specifically, it can exacerbate or trigger symptoms rather than relieve them. As for genetically modified organisms, although IBS has not always been called by its present name, it  has existed for many generations before GMOs existed and IBS continues to exist around the globe, including in developing nations where GMOs are not prevalent. While it’s a good thing to encourage healthful eating, the high prevalence of IBS cannot be blamed on GMOs.

The third general theme in the “cure” myth is the person with IBS who claims that he or she follows a specific diet or takes some medication or probiotic or supplement and, “Now I’m cured.” Even if we take stories like this at face value that it is an actual person with properly diagnosed IBS, this is sloppy language. If the person stopped treatment and symptoms returned, that would not be a cure. If he or she could stop the intervention, still be symptom-free, and not have to think about his or her gut or do anything to maintain it more than he or she did before getting IBS in the first place, that would be a cure. If continued treatment is needed for symptoms to go away but they do completely, that’s fortunately “successful symptom management.” We will not say “good management,” because that implies there is also “bad management,” and there are plenty of people with IBS who carefully do the things that are supposed to help us and still cannot get adequate symptom relief. IBS is not a moral failing to be judged on how well or poorly managed. It is a chronic medical condition with no cure.

That is not to say that the situation is hopeless, but that we should be accurate and realistic about the limits of both conventional and alternative medicine. A large 2007 survey by IFFGD and the University of North Carolina Center for Functional GI and Motility Disorders showed that over a third of respondents had used at least one complementary or alternative approach of various specific types at some point. (See page 16.)  IBS forums are full of positive and negative anecdotes for any treatment option, conventional or alternative. Like their conventionally trained counterparts, alternative practitioners vary. Some alternative or holistic providers practice in or in close consultation with integrative medicine units of hospitals, and may even also have conventional medical credentials. Some may have “alternative” credentials. Some may be quacks with no credentials at all.  Good ones should not be speaking of cures, but of management, similar to conventional health providers.

While IBS Impact advocates greater evidence-based education and research about Rome criteria-diagnosed IBS, and carefully selects its sources, links and suggested resources accordingly, we recognize that some will choose to pursue other options. We encourage readers who do so to make informed decisions with  full and accurate knowledge of what is currently considered proven, not proven, inconclusive, controversial or anecdotal, and we make an effort to provide clear distinctions in posting information on the blog, our main website or social media. In time, what is considered scientific truth about IBS today in 2014, will change as ongoing research and the lived experiences of those of us with IBS broaden and deepen the range of insights. Perhaps in our lifetimes we will see a true cure for IBS. But not today.

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