A Perspective of 5 Years and 6 IBS Awareness Months

by Nina Pan, IBS Impact founder and primary blogger for IBS Impact

In late 2007, very abruptly after decades of excellent physical and mental health, I became a person with severe pain-predominant IBS and numerous extraintestinal symptoms. Despite immediate and correct diagnosis by two physicians within days of onset, prompt treatment across the spectrum of reputable conventional and complementary IBS interventions  and proactive, unceasing self-education and self-advocacy, it has been over five years of a long, continuing road and, thankfully, some slow physical progress and regained quality of life, but never simple answers and certainly no mythical miracle cure.  IBS and its many unpredictable effects, physically, emotionally, socially, professionally,  and financially, remain with me to some extent every waking hour, and it’s only with the passage of time that it’s possible to realize how far I’ve come.

My first IBS Awareness Month, April 2008, passed in a blur of the steep learning curve of recent diagnosis and close to 20 severe GI and non-GI symptoms, including sleep disturbances, 24 hours a day, 7 days a week. My second IBS Awareness Month in April 2009 found me a bit improved, but still much the same overall. A few months later, realizing that I was quickly exhausting appropriate options for my own IBS management, I began to consider using my long personal and professional experience in disability and health communities and as an educator to advocate for the IBS cause. Shortly after my third IBS Awareness Month in 2010, IBS Impact came to fruition. Just before my fourth IBS Awareness Month in 2011, we launched the public website, and in 2012, around my fifth IBS Awareness Month, we made our first forays into social media.

2013 marks my sixth April as a person with IBS, and while IBS Impact is still far from the original vision of a large, active community of people with IBS focused on self-advocacy and awareness and, similar to symptom management, the results are rarely immediate or obvious, slow and steady work has made it a presence in the IBS and GI disorders community that has reached, at last count, 101 countries on every continent at some time in its existence. Our niche is intentionally distinct from the many existing forums that focus on emotional support and day to day management: reputable, evidence-based scientific information, personal experiences, useful news, clinical trial and advocacy opportunities, and food for thought about the broader medical and social issues facing many of us with IBS. Although my own experiences and interests as a person with IBS definitely motivate, inform and shape IBS Impact, I rarely write directly about them here, because the goal is not to have readers see this endeavor as about me and my personal problem. It’s about guiding both fellow people with IBS and others to recognize IBS as a global societal concern that affects not only those of us with the symptoms or diagnostic label, but everyone around us too.

Like individuals, as a community, people with IBS often have pessimistic phases. Enter any support forum at random, and some messages will be about how, “Nothing helps,” “Nobody understands,” “Nothing ever changes.” That often appears true in the heat of the moment, but again, looking back over the long term, what have six years of IBS Awareness Months brought for the IBS community?  Here are several actual examples, many of which have been discussed before on this blog.

Progress in the science of IBS:

 In 2010, a report of a decade-long study by McGill and McMaster Universities of Walkerton, Ontario, Canada was released. This community experienced contamination of its water supply in 2000, leading to over 2300 residents becoming ill. More than a third of these people later developed post-infectious IBS. This research contributed to the understanding of IBS-PI, as well as the possible genetics of IBS. (See the August 5, 2011 post)

Also in 2010, researchers at UCLA in the United States and McGill University in Canada, working jointly, discovered neurological changes in female study participants with IBS, opening the door to further research of possible biomarkers for IBS. This research interest in the neurology of IBS continues. Just this week, the State University of New York at Buffalo reported in a press release about the work of Jeffrey Lackner, PsyD and colleagues who are using brain imaging in an attempt to identify IBS biomarkers and possible changes as a result of psychological treatments like cognitive behavioral therapy.

In the past five years, there has been increasing interest, both in scholarly journals and mainstream media, in the role of gut bacteria in IBS as well as overall health. Besides many medical studies specific to IBS and other GI disorders, two separate international collaborations are currently working with gut microbiome samples recruited from thousands of ordinary members of the general public who volunteered over the Internet. (See the December 31, 2012 post.)

Progress in the treatment of IBS:

The NICE guidelines in the United Kingdom for treatment of IBS were updated in 2008. The American College of Gastroenterology guidelines were updated in 2009. (See the April 27, 2012 post.)

Linaclotide, approved in 2012, is already in use for IBS-C  in the U.S., and is soon forthcoming in Europe as Constella. Several other investigational medications for IBS are in the research pipeline. (See the September 1, 2012  and November 30, 2012 posts.)

The low-FODMAP diet, pioneered in Australia in 1999, wasn’t yet well known internationally as a possible intervention for some people with IBS in 2008, but has now received wider interest and evidence-based support.

Progress in understanding the impact of IBS and the barriers that remain:

In 2009, IFFGD released the first report of its ongoing and comprehensive Unmet Needs Survey of respondents with IBS.

In 2010, a team of researchers at UCLA published a study that showed that far more gastroenterologists, primary care physicians and nurse practitioners in local communities than functional GI experts still believe erroneously that IBS is a diagnosis of exclusion. (See the October 9, 2011 post.)

In 2011, a Rome Foundation Working Team Committee report acknowledged that the percentages of people with moderate and severe IBS are likely higher than the same researchers previously believed. (See the January 10, 2012 post.)

Progress in societal supports for people with IBS:

In 2011, the U.S. Department of Veterans Affairs officially recognized IBS as a presumptive, service connected disability for the purposes of disability compensation for veterans and service members who have served in the Persian Gulf/Southwest Asia region since 1990.  (See the August 12, 2011 post.)

Largely through the efforts of our peers in the inflammatory bowel disease community, most U.S. states with existing Restroom Access Acts/Ally’s Law, have adopted them sometime in the years since 2008. (See the February 20, 2012, August 21, 2012 and November 2, 2012 posts.)

Progress in advocacy:

IBS Impact did not exist in April 2008. Although IFFGD was founded in 1991, its grassroots arm, the Digestive Health Alliance, was not yet operating either six IBS Awareness Months ago. Among other things, DHA has now seen the IBS/functional GI community through a U.S. House of Representatives resolution on IBS awareness in 2010, has been an ongoing advocate on behalf of veterans who are disproportionately affected by functional GI disorders like IBS,  and is now shepherding the Functional GI and Motility Disorders Research Enhancement Act (HR 842) through its second attempt at Congressional passage, with the support of IBS Impact and other groups and individuals. (See the March 2, 2013 and March 18, 2013 posts for more information on HR 842.)

These are just a handful of positive steps forward for the IBS community on many levels over the past five years. There are many more. Obviously, we still have very far to go before all people with IBS have all the medical and social supports that we need for fully productive lives, with or without IBS,  but progress is being made. There are reasons for hope, especially if more of us do our part for self-advocacy and awareness in the years and IBS Awareness Months to come.

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