by Nina Pan, IBS Impact founder and primary blogger for IBS Impact.
Last year, 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 last year marked my sixth April with IBS. I observed how for me and many other people with IBS 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 have 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.
April 2014 marks my sixth year and seventh April as a person with IBS, and even in the space of a single year, there are steps forward to report.
Progress in the science of IBS:
In the past year, this blog has posted several times on new areas of promising IBS research, including genetics, the microbiome, possible cellular metabolism and the use of magnetic resonance imaging to study gut motility. These varied endeavors are taking place in or with the involvement of many scientists from many countries. See the following posts: October 6, 2013, February 9, 2014 and March 8, 2014, as well as other posts in the Research category of the blog sidebar to see the range of research news and clinical trial opportunities mentioned here over time.
Progress in the treatment of IBS:
Linaclotide, a newer prescription medication already in use in the U.S. for IBS-C, was launched in Europe as Constella beginning in mid-2013. Several other investigational medications and other non-pharmaceutical treatment options such as diet, probiotics and psychological interventions, are always in the research pipeline in various parts of the world. In the spring of 2013, through the advocacy of IFFGD, IBS Impact and others, the U.S. Food and Drug Administration selected IBS, GERD and gastroparesis for the FDA Patient Focused Initiative.
Progress in understanding the impact of IBS and the barriers that remain:
Recently, a large, multi-center study led by Jeffrey Lackner, PsyD of the State University of New York at Buffalo, collaborating with colleagues at Buffalo, Northwestern University, Wayne State University and UCLA, was published showing that contrary to the beliefs of many health care professionals, factors other than gut symptoms, such as fatigue, non-gastrointestinal symptoms and negative social interactions have a large correlation to the perceptions that study subjects with IBS had of their own health. See the article in the American Journal of Gastroenterology and podcast with Dr. Lackner here. This is research that has gotten much attention in recent weeks and months and seems to validate the lived experiences of many of us with IBS.
Progress in societal supports for people with IBS:
Largely through the efforts of our peers in the inflammatory bowel disease community, additional U.S. states have adopted Restroom Access Acts, popularly known as Ally’s Law, or introduced bills to enact one. These individual state laws 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. See the May 10, 2013 and March 14, 2014 posts.
Progress in advocacy and awareness:
The International Foundation for Functional Gastrointestinal Disorders and its grassroots arm, the Digestive Health Alliance (IFFGD/DHA) continue to shepherd 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. The Act has picked up several new co-sponsors in the U.S House of Representatives since April 2013. See the March 2, 2013 and September 27, 2013 posts for more about HR 842, IFFGD has also been an ongoing advocate for veterans, who are disproportionately at risk for functional gastrointestinal disorders like IBS. In November 2013, the Pediatric Research Network Act, which IFFGD joined many other health organizations in supporting, was signed into law. While this law is not specific to IBS or functional GI disorders, the law addresses pediatric-specific medical research, and its resources and insights may translate into gains for children and youth who have IBS or related gastrointestinal conditions.
At least twice in the past year, Douglas Drossman, MD, FACG, has spoken out publicly about his concerns regarding high profile media coverage of IBS or functional GI disorders. (See the September 20, 2013 and January 20, 2014 posts.) Dr. Drossman is the founder of Drossman Gastroenterology, the Drossman Center for the Education and Practice of Biopsychosocial Care, the founder and co-director emeritus of the University of North Carolina Center for Functional GI and Motility Disorders, the current president of the Rome Foundation, and one of the foremost international experts in the field. His work and his voice have been and continue to be influential.
IBS Impact’s site hits for the main site and this blog, as well as followers for this blog and social media continue to increase year by year, and we have reached over 100 different countries and territories with this blog alone. Record daily and monthly hits were reached last November with this post on common misconceptions about IBS.
These are just a handful of examples of forward motion 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.