IBS and Extraintestinal (Non-GI) Symptoms

Health websites, articles or books directed at the general public typically describe IBS symptoms as abdominal pain and diarrhea, constipation or alternating between the two. This has led to the commonly used abbreviations IBS-D, IBS-C or IBS-A, or, more recently, sometimes IBS-M for mixed. But these different “types” are not always clear-cut in each individual with IBS, and sometimes shift over time. The international standard for diagnosing IBS, the Rome III criteria(see page 889), does not use these categories. Rather, it refers to abdominal pain or discomfort and changes from a person’s normal, symptom-free pattern in the form or frequency of stools. Still, up to the present, IBS treatment has focused mostly on reducing the single predominant symptom and IBS clinical trials screen mostly based on these few symptoms, as they are the ones that, by definition, all people with IBS will share.

What is less obvious to people with newly diagnosed IBS, some of their medical providers and the general public is that these are not necessarily the only symptoms a person with IBS might experience. Symptoms vary widely among individuals, so it would be equally incorrect to assume that each person with IBS must have additional symptoms, or, if additional symptoms exist, that they must be from IBS, rather than an unrelated medical condition. Still, there needs to be greater awareness that some people with IBS do have other symptoms that appear to be related to IBS but are not always recognized as such, and that they often compound the difficulties of finding appropriate treatment interventions and maintaining a productive and enjoyable quality of life.

Bloating, excessive gas and strong body odors are other gastrointestinal symptoms that are anecdotally reported by many people with IBS, but additional symptoms can also be what the medical profession calls “extraintestinal” or non-gastrointestinal. An article by Olafur S. Palsson, PsyD and William E. Whitehead, PhD at the University of North Carolina Center for Functional GI and Motility Disorders lists 26 non-gastrointestinal symptoms reported more commonly by people with IBS than in comparison groups, including fatigue, headaches, muscle pain or stiffness, sleep disturbances, twitching of the eyes, frequent or difficult urination and flushing of the head and neck among many others. In some cases, some of these additional symptoms may indicate a diagnosable overlapping condition. Statistically, IBS is known to coexist frequently with fibromyalgia, chronic fatigue syndrome, endometriosis, temporomandibular joint disorder, interstitial cystitis and vulvodynia. All of these are also functional pain syndromes, and research is ongoing to discover if there are common causes. But sometimes people with IBS may experience non-GI symptoms without meeting the criteria for another diagnosis.

Some time ago, the IBS Impact founder posted in another large IBS online forum asking readers, in an informal, non-scientific survey, to list all symptoms each person believed were related to his or her own IBS. Readers were specifically asked to include symptoms that might not generally be considered typical for IBS, but to exclude any symptom that might be related to any other known medical condition the person had. The replies ranged from 5 to 22 separate GI or non-GI symptoms, many, but not all, on the UNC list linked above. The IBS Impact founder experiences a high number and has found the existing IBS resources inadequate to deal with them, since they do not add up to a specific overlapping condition. Obviously, the cumulative negative impact of many symptoms, even if individually mild or moderate, is potentially greater and more complex than for those who experience few symptoms.

IBS Impact focuses on advocacy and awareness, not on treatment. Only qualified medical professionals can diagnose IBS or any other condition. IBS Impact urges people with IBS to report all symptoms to their health care providers, not just the well-known “textbook” ones. An overlapping diagnosis and treatment may be available. Even if this is not the case, some physicians may become more aware of the range of symptoms and issues that people with IBS experience. IBS Impact also calls on clinicians and researchers to ask their patients about non-Rome criteria or extraintestinal symptoms, to design their studies and surveys in ways that accommodate such responses, and to strengthen their collaboration with researchers of overlapping conditions in order to accelerate better scientific answers, treatments and social supports for all who are affected by these often debilitating disorders.

For reputable resources for overlapping conditions, please see the links page on the IBS Impact main website.

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