IBS Awareness Month 2016: How Far We Have Come and Have Left to Go

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

Three years ago, on April 24, 2013, I wrote a post for IBS Awareness Month that began with some reflections on my personal experiences with IBS, as well as my motivations for IBS Impact. At that time, I had been living with IBS for over five years, and 2013 marked my sixth April with IBS. I observed  for how many of us, dealing with the numerous actual or potential effects on a day to day basis often makes it difficult to recognize when progress is being made, either for us as individuals, or for the IBS community as a whole. I stated that it is only with the passage of time that I had begun to realize how some things are indeed changing, albeit slowly, for the better. In the rest of the post, I pointed out numerous areas in IBS research, IBS treatment, understanding of the impact of IBS on quality of life, increased societal support and advocacy that had seen concrete, positive change in just the five years and six IBS Awareness Months  I had personally experienced.

 On April 10, 2014  and April  14, 2015, I reported in a similar vein on progress for the IBS community in each respective year. Now, continuing the tradition during my own eighth year and ninth IBS Awareness Month, once again, I can observe small steps forward in just a single year.

Progress in the science of IBS:

In the past year, this blog often noted open clinical trials in diverse areas of IBS,  such as diagnosis,  brain gut interactions, hormones, fecal microbiota transplants, and enzymes. These varied endeavors are taking place in or with the involvement of many scientists from many countries. See other posts in the Research category of the blog sidebar or our Facebook or Twitter feeds to see the range of research news and clinical trial opportunities publicized over the most recent several months.

Progress in the diagnosis and treatment of IBS:

 Over the past 16 months, this blog has often reported on the development of Rome IV criteria, the latest update to the international symptom-based diagnostic criteria for functional gastrointestinal disorders like IBS. The Rome criteria, which are said by leading IBS researchers to be 98% accurate for most people with IBS symptoms, have been in existence in some form for 25 years although research shows that many people with IBS and medical professionals who do not specialize in IBS remain unaware of this. As this blog reported on October 11, 2015,  Rome IV is expected to include a new Multidimensional Clinical Profile which, for the first time, will take into account common extraintestinal (non-GI) symptoms and other psychological and social factors that may influence care for particular individuals with IBS.  Rome IV will be officially published and presented to the international gastroenterology community at the annual Digestive Disease Week professional conference taking place about 3 weeks from now. It is hoped that it will provide better diagnosis and treatment for people with IBS worldwide, and new opportunities for education of medical professionals in functional GI disorders.

Several investigational medications and other non-pharmaceutical treatment options are always in the research pipeline in various parts of the world. In the U.S., prescription medications. Rifaximin (brand name Xifaxan) and Eluxadoline (brand name Virberzi) both received FDA approval for IBS-D in late May 2015 and are now in use by some people with IBS.

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

As this blog reported on January 26, 2016, the Gastrointestinal Society in Canada launched an online survey seeking experiences and opinions and needs of adults with IBS and parents of children with IBS across Canada. The results are intended to shape future GI Society programs and to advocate and educate health care providers, policymakers and community members about IBS. Originally, the survey was scheduled to close on April 30, but has now been extended through June 6, 2016.

In December 2015, the American Gastroenterological Association released the results of a survey it commissioned called “IBS in America” Over 3000 people with IBS and over 300 physicians, both gastroenterologists and primary care providers, were interviewed by marketing research company Gfk on behalf of AGA. The survey, which was financially supported by the pharmaceutical companies Ironwood Pharmaceuticals and Allergan plc, has since received considerable media attention and opportunities for IBS to be discussed among health care professionals.

Progress in societal supports for people with IBS:

Our peers, primarily from the inflammatory bowel disease (IBD) community, are continuing decentralized but ongoing efforts to pass Restroom Access Acts, popularly known as Ally’s Law, in additional states.  These individual state laws, which to the best of my knowledge now number sixteen, have the common goal of allowing people with medical conditions, including irritable bowel syndrome, that may cause urgent restroom needs, to use employee-only facilities in retail stores if no public restrooms are immediately available. As far as I am aware, no new state has been successful this past year in enacting a law, but publicity and advocacy continue to make more legislators and the public aware of the need. Search the Ally’s Law tag in the right sidebar to see previous posts and states where similar laws apply.

The IBS Network continues its ongoing efforts to prevent widespread closures of public toilets in various areas of the United Kingdom, and it continues to support and expand the availability of  local, in-person self-help/support groups for people with IBS throughout the country.

Last spring, Monash University in Australia, developers of the low-FODMAP diet that is effective for reducing symptoms for many people with IBS, launched a low-FODMAP certification program, whereby food product manufacturers whose products have been tested by Monash as appropriate for the diet, may display an official certification symbol to alert consumers. The number of products currently certified is small, but is of promising help to those in Australia and New Zealand who follow the low-FODMAP diet.

Progress in advocacy and awareness:

The International Foundation for Functional Gastrointestinal Disorders and its grassroots arm, the Digestive Health Alliance  (IFFGD/DHA),  continued in the past year to shepherd the Functional GI and Motility Disorders Research Enhancement Act through its third attempt at passage by the U.S. House of Representatives, with the support of IBS Impact and other groups and individuals. After two previous attempts in the two previous Congresses,  it  was reintroduced in the the current 114th Congress under a different Act number, HR 2311, in June 2015 and has received bipartisan support from Representatives in several states.  See the Legislation category,  HR 231,1 HR 842 and HR 2239 subcategories in the right sidebar of this blog for more on this history of this important Act.  IFFGD has also been an ongoing advocate for veterans, who are disproportionately at risk for functional gastrointestinal disorders like IBS.

In the past year, the IBS Network in the United Kingdom launched its “Not Just IBS” awareness campaign and Change.org petition addressed to all U.K. political parties and the National Medical Director advocating for specific changes to improve the lives of all those in the U.K. who have IBS.

IBS Impact launched a newly designed and updated main website in the fall of 2015 and the number of followers of this blog and our social media accounts continues to increase. Cumulatively, IBS Impact continues to reach readers in over 100 countries on every continent of the globe.

These are just a handful of examples of progress for the IBS community in the past year. Cumulatively, 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 we have come far as well. 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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