Many people are disconcerted if they are told by their doctors, after minimal or no tests, that they have IBS. This is understandable, for with many other common disorders, abnormalities can readily be found and treated by an alert and thorough health care provider. This is not the case with IBS or other functional GI disorders. The problems in IBS are not obvious and cannot be tested clinically through means currently available to doctors outside of highly specialized FGID research labs. Because of this, the medical profession long believed there was “nothing wrong,” and this led to the notorious idea that IBS is “all in the head.”
However, over the past two decades or so, research in many countries worldwide has established that there is indeed a physical basis for the symptoms of IBS, including dysfunction of the brain-gut axis, visceral hypersensitivity, abnormalities involving the neurotransmitter serotonin, as well as various other possible issues that continue to be studied. About.com’s IBS Guide, Barbara Bradley Bolen, PhD, wrote a series of posts updated this year that summarize, in plain language, some major areas of current knowledge about IBS. Also, in 2010, a joint study by UCLA in the U.S. and McGill University in Canada was published that showed for the first time structural changes in the brains of female study participants with IBS. It is hoped that future research will confirm or elaborate on these findings in beneficial ways.
Thus, it is no longer accurate to claim, as many IBSers do, that nobody knows anything about IBS,that it is only a catchall term for any gastrointestinal disturbance that doctors cannot or will not otherwise diagnose, or that IBS is only correctly diagnosed by ruling out every other condition that might cause similar symptoms. It is true that IBS is extremely complex and not as well understood as would be ideal and that individuals’ symptoms and experiences with IBS vary widely. But there are things that we all have in common that have been known for some time.
The international standard for diagnosis of IBS is the Rome III criteria. (See page 889.) According to Dr. Bolen in a 2009 post, Brennan M.R. Spiegel, MD, MSHS of the V.A.Greater Los Angeles Healthcare System and UCLA wrote for an IFFGD publication that a Rome criteria diagnosis of IBS is about 98% accurate. Some people newly-diagnosed with IBS fear that they may have cancer, and this, or IBS interventions that don’t work, may lead them to seek out many unnecessary tests. However, according to William Chey, MD of the University of Michigan, people with IBS are not at any higher risk of colon cancer than those without IBS. Although clinical protocols for diagnosing and treating IBS vary somewhat from country to country, neither the American College of Gastroenterology’s 2008 guidelines, the National Health Service’s 2008 NICE guidelines for adults with IBS in the U.K. , the 2006 guidelines of the Gastroenterological Society of Australia, nor the IBS page of the Canadian Digestive Health Foundation of the Canadian Association of Gastroenterology advocate extensive and invasive tests for everyone who may have IBS. Rather, they emphasize certain tests that may be indicated for specific subgroups of people based on each patient’s history and the physician or practitioner’s judgment.
Unfortunately, a study by Dr. Spiegel and colleagues at UCLA also shows that gastroenterologists, general internal medicine physicians and primary care nurse practitioners in local communities are much less likely than what the study terms “international gastroenterologists (GIs) who are recognized experts in IBS” to use the Rome criteria in diagnosing IBS or to identify correctly that IBS is not a diagnosis of exclusion. This is a basic unmet need in the IBS community that may negatively affect IBSers’ knowledge of IBS, their ability to receive proper care, and tools to advocate for themselves.
Only qualified medical professionals can diagnose IBS or any other condition. IBS Impact encourages people with IBS and concerned family and friends to familiarize themselves with the Rome criteria and currently accepted standards of care in their own countries, so they can be assured if their health care providers are following best practices.
As self-advocates, we should continue to educate others as to the current science of IBS rather than outdated myths and misconceptions. Without widespread basic understanding of what IBS is and what it is not, it will be more difficult for medical and social advances to move forward. The situation of people with IBS will be much improved when our community can get beyond these issues of fundamental awareness and on to other unmet needs for greater scientific understanding and parity in societal resources with other common medical conditions.