by Nina Pan, IBS Impact founder and primary blogger for IBS Impact.
Four 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 how for 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 , April 14, 2015, and April 29, 2016, I reported in a similar vein on progress for the IBS community in each respective year. Now, continuing the tradition during my own ninth year and tenth 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, the science of IBS has continued to expand in many areas, from diet, to gut microbiota, to understanding of the visceral hypersensitivity responsible for pain, to stigma, and the effect of parental response on children with functional abdominal pain and many other topics. 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. The annual Digestive Disease Week international gastroenterology conference taking place shortly in May traditionally provides even more state of the science research news each year.
Progress in the diagnosis and treatment of IBS:
Over the past two and a half years, 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, which was officially published and presented to the international gastroenterology community in May 2016. This latest update reportedly involved over 100 experts from numerous countries. 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 26 years, although research shows that many people with IBS and medical professionals who do not specialize in IBS remain unaware of this.
In addition to some changes in symptom criteria, Update on Rome Criteria for Colorectal Disorders: Implications for Clinical Practice,” by Magnus Simren, MD of the University of Gothenburg in Sweden, Olafur Palsson, PsyD and William Whitehead, PhD of the University of North Carolina Center for Functional GI and Motility Disorders in the U.S., published this month in Current Gastroenterology Reports, notes that the Rome IV is attempting to encourage a transition from the more stigmatizing “functional GI disorders” to a “disorders of gut-brain interaction,” which is more reflective of current understanding of IBS and related disorders, some of which include functional diarrhea, functional constipation and centrally mediated abdominal pain (functional/recurrent abdominal pain) among others affecting the lower or upper GI tract. In addition, the authors state that, “Therefore, in Rome IV it is emphasized that functional bowel disorders constitute a spectrum of GI disorders rather than isolated entities. It is acknowledged that, even though they are characterized as distinct disorders based on diagnostic criteria, significant overlap exists, and occasionally, it may be difficult to distinguish them as distinct entities. Furthermore, it is also highlighted that transition from one functional bowel disorder to another, or from one predominant symptom to another, is frequently seen, and this may occur as part of the natural course of the disorder, as a response to therapy, or both.”
As this blog reported on October 11, 2015, Rome IV guidance also includes a new Multidimensional Clinical Profile which, for the first time, takes into account common extraintestinal (non-GI) symptoms and other psychological and social factors that may influence care. It is hoped that all of these changes will provide better diagnosis and treatment for people with IBS worldwide, and new opportunities for education of medical professionals in disorders of gut-brain interaction.
Several investigational medications and other non-pharmaceutical treatment options are always in the research pipeline in various parts of the world. Eluxadoline (brand name Viberzi), already in use in the United States, was approved by Health Canada in March 2017. According to Canadian contacts, the timeline for availability depends on provincial decisions.
Progress in understanding the impact of IBS and the barriers that remain:
As this blog reported on January 29, 2017, in December 2016, the Gastrointestinal Society released its report on a year-long survey on 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. A five-question followup survey, open to previous and new participants, is still accepting responses at this time. The link to both the report and the follow-up are in the linked January post.
Progress in societal supports for people with IBS:
The IBS Network in the United Kingdom made great progress this past year in its ongoing efforts to support and expand the availability of local, in-person self-help/support groups for people with IBS in the UK. as reported by this blog on October 23, 2016 and January 13, 2017.
Although the Irritable Bowel Information and Support Association (IBIS) in Australia closed this year, the administrators of the IBS Support Facebook group, of which I am one, were pleased to be recognized as one of the two alternative resources IBIS suggested on its remaining web page. This international, evidence-based educational group is currently administered by 9 individuals from 4 countries, all of whom have had IBS for many years, and are highly knowledgeable from formal professional education and experience and/or many years active in the IBS community. At this time, membership is over 27,000 and grows by about 1000 members each month.
Monash University in Australia, developers of the low-FODMAP diet that is effective for reducing symptoms for many people with IBS, continues to test specific foods and product brands in several countries, in some cases, leading to revision of its previous recommendations. It also adds new countries as research and resources permit. In late March of this year, Dutch foods were added to the app, allowing those in the Netherlands to use it more easily. Monash also has 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 growing Previously, the only manufacturers listed were in Australia or New Zealand, but there have been recent additions in the U.S. and Canada as well.
Progress in advocacy and awareness:
The International Foundation for Functional Gastrointestinal Disorders has continued to shepherd the Functional GI and Motility Disorders Research Enhancement Act through its fourth attempt at passage by the U.S. House of Representatives, with the support of IBS Impact and other groups and individuals. After three previous attempts in the three previous Congresses, it was reintroduced in the the current 115th Congress under a different Act number, HR 1187, in March 2017 and has received bipartisan support from Representative. See the Legislation category, HR 1187, HR 2311 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.
IBS Impact once again completely redesigned and updated its main website in December 2016 and continues to make incremental updates and improvements several times a year. The number of followers of this blog and our social media accounts continues to increase. Largely due to the release of the Rome IV criteria in May 2016, overall hit counts average 300-400% higher than prior to Rome IV and have remained in the new range almost one year later. A Rome IV post has now displaced the August 12, 2011 post on IBS being added to service-connected disabilities for Gulf-era U.S. veterans as the most popular post in the history of this blog, a status the previous post held from 2011-2015. Cumulatively, IBS Impact now reaches readers in over 130 different countries and territories 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.