A Dozen Years and 13 IBS Awareness Months: Advances for the IBS Community 2019-2020

♦ April 30, 2020 ♦ Leave a comment

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

Seven 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, May 8, 2018, and April 30, 2019, I reported in a similar vein, on progress for the IBS community in each respective years, Now, continuing the tradition during my own twelfth year with IBS, as my thirteenth IBS Awareness Month draws to a close, 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 differences in pain among IBS subtypes,differences in Xifaxan response for IBS-D,  a possible enzyme deficiency that may account for some individuals in the subset who do not respond to the low FODMAP diet, a U.S. study on fecal microbiota transplant for IBS which was terminated early because it was found to be no better than placebo, as well as several studies confirming previous research correlating IBS to various known commonly overlapping conditions or showing the effectiveness of certain existing IBS medications for some patients. [Thank you to IFFGD staff for providing assistance in compiling many of the studies mentioned here.]

In addition, the Rome Foundation, a not-for-profit organization of thought leaders from many countries in the field of functional gastrointestinal disorders/disorders of gut-brain interaction and who developed the Rome international diagnostic criteria 30 years ago, last updated to Rome IV in May 2016, undertook a multi-year Global Epidemiology Study that has begun to bear fruit in the form of multiple major journal publications this year for this or narrower aspects of the overall work.  Epidemiology is the study of the incidence, distribution and factors controlling the development of certain medical conditions. In this research, scientists surveyed approximately 73,000 adults from a wide range of cultural and socioeconomic backgrounds in 33 countries on 6 continents of the world. This work has already given researchers new insights into how many people in various parts of the globe have IBS and/or related FGIDs/DGBIs and their circumstances, and will undoubtedly be a major milestone paving future directions for research.

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.  In the past few years, including 2019-2020, as some long-established senior committee, board and administrative members or editors at the Rome Foundation and other gastroenterology organizations, research centers or professional journals have retired or moved on to other professional endeavors, different researchers have taken on the roles, in some cases diversifying countries, areas of expertise, or perspectives represented in influential positions in the field. IBS Impact hopes that this factor also contributes to moving the field further forward in the years to come. 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.

Progress in the diagnosis and treatment of IBS:

In September 2019, the American Gastroenterological Association published Clinical Guidelines on the Laboratory Evaluation of Functional Diarrhea and Diarrhea -Predominant Irritable Bowel Syndrome in Adults.   Some tests are recommended by the AGA while the AGA also makes no recommendation or recommends against others and discusses the quality of evidence for each. The guidelines state that this is meant to reduce variations in medical practices of different health care providers, and that the document will expire in 5 years. At that time, presumably, the AGA will update the guidelines as needed depending on future evidence and medical practices.

During 2019-2020, the Rome Foundation has offered several symposia in different cities as part of continuing medical education opportunities for fellow health care professionals in both gastroenterology and primary care on diagnosis and treatment. The next one is scheduled for autumn of this year.  The Foundation also continues a program to mentor promising young functional GI researchers, an initiative started after Rome IV.

Several investigational medications and other non-pharmaceutical treatment options are always in various stages of the research pipeline in various parts of the world. As reported on this blog on June 17, 2019, the groundbreaking IB-Stim device had just then been approved by the U.S. FDA for use in treating IBS pain in adolescents. In September 2019, the FDA approved tenapanor (Ibsrela) for use by adults who have IBS with constipation (IBS-C)

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

As reported on this blog in June 2018,  about two years ago, 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 Committee 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. In 2019-2020, this mechanism became more established, and IFFGD and members of these groups have continued to communicate, as individuals and groups, to share information and feedback on IFFGD materials, programs, and advocacy priorities and 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.

Recently, IFFGD also began conducting a comprehensive survey online survey of people with IBS, their experiences and unmet needs. This is a follow-up to a similar comprehensive multi-year survey by IFFGD and the University of North Carolina first begun in 2007. This previous study attracted a large number of responses internationally and its insights have been important contributions to IBS research, medical care and support systems since then. It is hoped that the current survey will also yield significant responses and long term positive impact for our community.

Progress in societal supports for people with IBS:

The IBS Network in the United Kingdom continued its support to and/or development of, as of this writing, a total of 13 local self-help/support groups in various locations in England and Scotland for people with IBS as originally reported by this blog on October 23, 2016 and January 13, 2017. The current list can be accessed at this link. While social distancing necessitated by the COVID-19 pandemic does not allow these groups to currently meet in person, some are continuing to meet by Skype and similar technologies.

Among other recent activities, the IBS Network also reports that in March 2020, it was raising awareness with employers regarding accommodating employees with IBS in the workplace.

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. The availability of certified products and food-related services has expanded over time and currently includes major and specialty brands in Australia, New Zealand, the United Kingdom, Germany, Poland, the United States, Canada,and several multi-national brands. Aside from continuing online courses for dietitians, in the past year, Monash has launched an online course for those with IBS on using the diet. For a modest fee, which varies by each country’s currency and exchange rate at any given time, one can complete the course at one’s own pace within one year of purchase. This is a positive step forward in making the complex dietary approach more understandable to those who, for various reasons, may not wish to or may not be able to consult a low-FODMAP trained dietitian.

Michael Mahoney, clinical hypnotherapist in Cheshire, England, founder of Healthy Audio and the developer of the IBS Audio 100 program for adults, (and later the IBS Audio 60 for children with IBS)  the gut-directed hypnotherapy home course used by people with IBS internationally for over 20 years, recently contacted IBS Impact to share the news that he has significantly discounted the MP3 version of IBS Audio 100, for as long as sustainable, and has also recently developed a new streaming version for 2020. IBS Impact commends Mike’s long commitment to making his programs as financially and logistically accessible to as many people as possible, which is motivated by his genuine concern for quality of life for people with IBS.

[Please note that IBS Impact does not receive funding from Monash or Healthy Audio or any other linked source, nor was any link solicited. As always, any resources mentioned on our sites and social media are independently chosen and shared in the interest of scientifically accurate awareness, advocacy, and high quality useful resources for the IBS community.]

Progress in awareness and advocacy:

Over the past year or so,  the American Neurogastroenterology and Motility Society,  the Rome Foundation, and the Drossman Center. among others, have continued to conduct various social media events such as Twitter Chats and Facebook Live to engage and educate their people with IBS and families.

This year, IFFGD has been busy planning and organizing its new Nancy and Bill Norton Educational Series, named in honor of IFFGD’s  founders, who developed and headed the organization from 1991-2017 and continue to serve on its Board of Directors. IFFGD envisions this new series as half day events a few times a year, each in a different location and focused on a different chronic GI condition or topic of concern common to many conditions that IFFGD serves, including IBS. These will be focused directly on GI disorder-affected individuals in the hope of educating them, providing resources, and empowering them to manage their conditions. This is the first attempt in the IBS community in many years to provide ongoing in-person patient-centered events rather than very occasional ones. The first one will be on Diet, Nutrition and Digestive Health in cooperation with the University of Michigan, a leading functional GI treatment and research center in October 2020. This date was rescheduled from earlier this year due to the COVID-19 pandemic. Plans are to stream Norton Educational Series events online also, so that people with chronic GI conditions served by IFFGD can participate regardless of where they are in the world.

IFFGD has also announced this year’s dates for its annual national advocacy event, which is virtual this year,  to connect with federal legislators on several issues of concern to the GI disorder community. This will take place on July 26-27, 2020. Attendance is free but registration is required. One of the pieces of federal legislation affecting people with IBS is HR 3396, the Functional Gastrointestinal Disorders Research Enhancement Act, which so far this Congressional session, has 22 legislators, the lead sponsor and 21 co-sponsors from both political parties, 14 states and the District of Columbia.

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 nine 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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