11 Years and 12 IBS Awareness Months: More Forward Momentum for the IBS Community 2018-2019

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

Six 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,  and April  30, 2017, and May 8, 2018, I reported in a similar vein, on progress for the IBS community in each respective years, Now, continuing the tradition during my own tenth year with IBS, just a week after my eleventh IBS Awareness Month, once again, I can observe many  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. These include, but are by no means limited to telephone and web based cognitive behavioral therapy for IBS, food related quality of life in inflammatory bowel disease (IBD) and IBS, a new Rome Foundation Working Team Report on post-infectious IBS, the effects of gut-directed hypnotherapy on the intestinal microbiome, and a comprehensive literature review for pediatric functional abdominal pain disorders, the first such update in many years.

In addition, the Rome Foundation, a not-for-profit organization founded decades ago by thought leaders from many countries in the field functional gastrointestinal disorders/disorders of gut-brain interaction that includes IBS, has established a new initiative known as the Research Institute of the Rome Foundation. The hope is to be a centralized, international resource for scientists in the field in ways that will continue to encourage and expand research over time.

These varied advancements in IBS research are taking place in or with the involvement of many scientists from many countries, and very often, volunteers with IBS from multiple countries per study as well.  See other posts in the Research category of the blog sidebar, the IBS studies page of our main website  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 mid-May traditionally provides even more state of the science research news each year.

Progress in the diagnosis and treatment of IBS:

The Journal of the Canadian Association of Gastroenterology has just published guidelines for the management of irritable bowel syndrome (IBS) in its April 2019 issue. Twelve named authors from the fields of gastroenterology, health psychology and primary care, represent six Canadian universities in several provinces, with one author currently unaffiliated. While a few Canadian researchers have previously collaborated with United States colleagues on American guidelines, which differ from these Canadian guidelines in a couple of aspects, as far as IBS Impact is aware, this is the first time any national professional organization in Canada has issued a comprehensive document of this nature.

Meanwhile, in July 2018, the American College of Gastroenterology published its own updated recommendations for IBS treatment options. The previous guidelines dated back to 2014.

 Over the past four 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.  Rome IV development 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 29 years, although research shows that many people with IBS and medical professionals who do not specialize in IBS remain unaware of this. Since the launch of Rome IV and continuing in the past year, the Rome Foundation members have made Rome IV print and online materials and webinars available to educate fellow health care professionals, including new outreach to primary care physicians and those from regions of the world historically underrepresented in the field. The Foundation also continues a program to mentor promising young functional GI researchers, an initiative begun over a year ago.

Several investigational medications and other non-pharmaceutical treatment options are always in various stages of the research pipeline in various parts of the world.  Earlier this year, Rifaximin, known in Canada by the brand name Zaxine, received Health Canada approval for use in IBS-D.   In the United States, at the end of March 2019, the Food and Drug Administration approved the return of tegaserod, brand name Zelnorm, to the U.S. market for women with IBS-C with no cardiovascular history or risk factors. This medication was previously taken off the market several years ago because of reports of serious cardiovascular complications in some users.

The website of the Rome Foundation Psychogastroenterology Group went live in the fall of 2018. Founded and maintained by Laurie Keefer, PhD of Icahn Mount Sinai in New York and Sarah Kinsinger, PhD of Loyola University in Chicago, both leading GI health psychology clinicians and researchers, to encourage the use of highly effective psychological treatments for IBS like gut directed hypnotherapy and cognitive behavioral therapy. The website includes a private listserve for psychogastroenterology professionals, public links to media coverage on these interventions, and most importantly, a public online directory of GI health psychology professionals that can be accessed by people with IBS, concerned family members, and health care professionals searching for providers.

In the past several months, IFFGD has also initiated its dietitian care locator.

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

The International Foundation for Gastrointestinal Disorders (IFFGD), in the U.S., formerly the International Foundation for Functional Gastrointestinal Disorders, began recruiting its first invitation-only, volunteer Patient Advisory Council for people with GI disorders, including IBS and family members known to IFFGD as among the most active and interested advocates, and larger volunteer Patient Panel, open to any interested individual, early in 2018 as reported on this blog in June 2018. Since then, IFFGD and members of these groups have communicated, as individuals and groups, to share information and feedback on IFFGD materials, programs, and advocacy priorities, and to develop the means to address suggestions of members and the concerns of those affected by GI disorders in the wider community.  IBS Impact appreciates the effort to encourage more formal patient-organization collaboration.

Progress in societal supports for people with IBS:

The IBS Network in the United Kingdom continued its efforts this past year to expand the availability of local, in-person self-help/support groups for people with IBS in the UK. as originally reported by this blog on October 23, 2016 and January 13, 2017. As of this writing, there are 16 such groups which meet monthly in various locations in England and Scotland. The current list can be accessed at this link.

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. 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. Over the last year, Monash launched a significant redesign of its app based on user feedback, also revamped its online training course for dietitians, and is cooperating with a major Australian bakery franchise that supplies bread throughout Australia as well as to Canada, and a few in New Zealand and the United States.

Progress in awareness and advocacy:

Over the past years or so,  the American Neurogastroenterology and Motility Society,  the Rome Foundation, and IFFGD, in cooperation with the University of Michigan, a major functional GI research center, have each sponsored various Twitter chats, Facebook Live events and/or other social media events on IBS and functional GI disorders that are increasing awareness and education among patients, families, and other professionals.

IFFGD has announced this year’s dates for its annual national advocacy event in Washington, DC to meet with federal legislators on several issues of concern to the GI disorder community. This will take place on June 24-25, 2019. Those who wish to participate should register by the deadline of May 31.

IBS Impact continues to make incremental updates to this blog and social media several times a month and to its main website several times a year,amassing archives that thus far cover almost eight years of quality, evidence-based material, resources and personal experiences of those who blog for us. The number of followers of this blog and our social media accounts continues to increase. Cumulatively, IBS Impact now reaches readers in over 150 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.

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