A large part of being credible and effective self-advocates as people with IBS and family members is being well-informed ourselves as to what IBS is and is not and what reputable scientific research currently says about treatment options and other topics related to IBS. Functional gastrointestinal disorders like IBS, as well as many non-GI symptoms or disorders that commonly overlap with IBS, are generally not as well understood and often not as effectively treated as conditions with less complex and more obvious abnormalities. People with IBS, including many involved in IBS Impact, have had the experience of finding numerous conventional and complementary interventions to provide inadequate relief and, for months or years at a time, may be left largely to find our own way, because every person with IBS has a different experience, and even the most knowledgeable and well-meaning professionals do not have quick or easy answers. We understand on a very personal level the desperation that moderate or severe IBS can prompt during the worst phases to find anything or anyone that might help. This impulse toward self-advocacy and self-preservation can be a positive thing, but can also have negative consequences if not approached in an informed way.
Those who become active in the IBS community eventually become aware that as far as IBS is concerned, almost everybody has an opinion, whether it’s our peers with IBS, professionals in the field, books, articles, websites or support forums, our family and friends or colleagues, and the general public– and many of these opinions and experiences conflict with each other. How do we separate potentially useful information and resources from the myths, misconceptions, outdated data, or outright quacks selling supposed miracle cures? The science of IBS has a long way to go, but it has advanced quite a bit in the past couple of decades. Physicians and other health care providers who received the majority of their training some time ago, or people with IBS who have lived with the symptoms for many years simply may not be aware of newer developments. For example, as noted in this blog’s October 9, 2011 post, recent research at UCLA shows that large percentages of health care providers in local communities are not aware that international functional GI experts no longer consider IBS a diagnosis of exclusion that requires numerous tests of every person with apparent IBS symptoms. That’s why education and awareness of all involved parties: people with IBS, our loved ones, health care providers and the general public are all important.
For IBS Awareness Month, two organizations have been highlighting online tools they offer that may be of use to people with IBS and those who support us. The IBS Network in the United Kingdom has newly launched an online, interactive self care plan that can be used by IBS Network members to track symptoms, learn about treatments through audio, video, case histories and exercises, and design a individual plan for self-management. The American College of Gastroenterology has also called attention to its online IBS treatment matrix, first made available in 2009, that discusses commonly used treatment interventions that the user indicates. It also mentions other possible options for one to discuss with one’s own physician.
The matrix is based on a comprehensive, evidence-based review by the ACG in 2009 of common conventional and complementary treatments, and the strength or weakness of current scientific evidence for their effectiveness. The full, published report is linked above. For blog readers from the U.K, the British Society of Gastroenterology issued guidelines for IBS management in 2007 and the National Health Service’s National Institute for Health and Clinical Excellence released its own in 2008. The Gastroenterological Society of Australia professional guidelines on IBS, as last revised in 2006, are linked here. To IBS Impact’s knowledge, there is no similar, publicly available, comprehensive official statement by the Canadian Association of Gastroenterology in regard to IBS. However, its associated Canadian Digestive Health Foundation discusses the diagnosis and treatment process on this page. The New Zealand Society of Gastroenterology and the Irish Society of Gastroenterology, unfortunately, do not appear to have professional guidelines or consensus reports on IBS at this time.
IBS Impact is a grassroots group focused on awareness and advocacy and encouraging informed decisions by people with IBS and their family members. Please consult qualified health care professionals for advice on individual medical treatment concerns. Many more original articles and links to reputable sources of information on IBS can be found on the IBS Impact main website.