14 Years and 15 IBS Awareness Months: Holding on to Hope 2021-2022

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

Nine 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, April 30, 2019,  April 30, 2020, and May 3, 2021, I reported in a similar vein, on progress for the IBS community in each respective year. Now, continuing the tradition during my own fourteenth year with IBS, with my fifteenth IBS Awareness Month now ending, 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 the long term impact of the low FODMAP diet, sleep disturbances in IBS, regulation of intestinal motor circuits, distinct microbiota subtypes, a large multinational study of 53,400 people with IBS proving shared genetic pathways with anxiety and mood disorders, the effect of cognitive behavioral therapy on the microbiome, gut-directed hypnotherapy in children and adolescents, the role of bile acids in gut-brain signaling the natural history of IBS and overlap with other GI disorders, no increased risk and possibly lower risk of colon cancer among those with IBS, a review of patient experiences with and desire for support and education on IBS, extraintestinal (non-GI) symptoms in IBS, and increased overlap of IBS and migraines.

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.

Progress in the diagnosis and treatment of IBS:

In December 2021, the Rome Foundation revised its clinical guidance to health care professionals that frequency and duration of symptoms outlined in the Rome IV international diagnostic criteria are considerations, but that diagnosis should also consider bothersomeness of symptoms to the patient rather than always using the specific frequency or duration in the criteria. While these strict standards will still be used in research, it is hoped that physicians will diagnose and treat patients with clear Rome-criteria symptoms IBS sooner rather than delaying because a particular individual does not have symptoms as frequently or as long as typical.

During 2021-2022, the Rome Foundation has offered continuing medical education opportunities for fellow health care professionals in both gastroenterology and primary care on diagnosis and treatment.  The Foundation also continues a program to mentor promising young functional GI researchers and expand collaborations with research centers and industry through the Rome Foundation Research Institute. The Rome V updates to the Rome international diagnostic criteria began development last year and are currently scheduled to be completed and released in 2026.

Several investigational medications or  novel uses of existing medications, and other non-pharmaceutical treatment options are always in various stages of the research pipeline in various parts of the world. Tenapanor (brand name Ibsrela), a new medication for adults with IBS-C was originally approved by the U.S. Food and Drug Administration in the fall of 2019. Tenapanor has finally just been made available in the United States by Ardelyx in April 2022. Ardelyx licensed tenapanor to Knight Therapeutics in Montreal for the Canadian market, Health Canada approved the medication in 2020 and it has been available under the same brand name, Ibsrela, since early 2021.

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

As reported on this blog in June 2018, 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 2021-2022, 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 direct collaboration and transparency between affected individuals and IFFGD. A few members of the Patient Advisory Committee also now serve in more formal roles on IFFGD’s Board of Directors. IFFGD is also responsive to other members of the community. This past summer, based on feedback, it launched both a survey on long COVID and gastrointestinal disorders, including IBS, and a focus group for identifying inequalities and disparities in health care experiences and access among those affected by GI disorders.

IFFGD also continues 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:

IBS Support (Official), a science-based Facebook support group for which I am one of 13 administrators/moderators from 6 countries, currently has over 88,000 members, an increase of approximately 12.5% over this time last year. This group serves people with IBS of all ages and walks of life, spouses/partners/significant others, parents and other concerned individuals from more than 100 countries. 12 members of the admin team are adults with longtime IBS. One is the parent of a young adult with IBS. Several admins have relevant professional background in scientific research or health care, education, health or disability advocacy, dietetics or food service, and/or contacts with leading professionals and organizations in the IBS community. We are pleased to fill an ever-growing need for reputable IBS support

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, including this past year.  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 has expanded over time and currently includes major and specialty brands in at least 8 countries. It appears that some low FODMAP meal subscription services have been added in the past year as well. Monash continues online training courses, both for dietitians and for people with IBS using the diet.

On April 23, 2022, for IBS Awareness Month, IFFGD continued its Nancy and Bill Norton Educational Series, named in honor of IFFGD’s founders, who developed and headed the organization from 1991-2017, with an in-person event held in the Chicago area. This was focused directly on IBS-affected attendees in the hope of educating them, providing resources, and empowering them to manage their conditions. This was the first attempt in the IBS community in many years to provide ongoing in-person patient-centered events rather than very occasional ones.  Due to the COVID-19 pandemic, all NES events last year were solely online. IFFGD envisions this series as 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. The videos for the public portion of this year’s IBS event are expected to be posted in May so that people all over the world can benefit from them for the months and years to come.

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 people with IBS and families.

By popular demand from readers affected by GI disorders after publication of their 2021 book, Gut Feelings: Disorders of Gut-Brain Interaction and the Patient-Doctor Relationship, A Guide for Patients and Doctors, Douglas A. Drossman M.D, President Emeritus and Chief Operating Officer of the Rome Foundation and Johannah Ruddy, M.Ed, Rome Foundation Executive Director and patient advocate who lives with IBS herself, began work on a companion volume, Gut Feelings: The Patient’s Story. Personal Accounts of the Illness Journey. Along with the contributions of Dr. Drossman and Ms. Ruddy, this book features eight of Dr. Drossman’s own patients with disorders of gut-brain interaction such as IBS who agreed to share their experiences and insights and how, after appropriate care, they are living productively with their conditions. This book is due to be released in July 2022 and is currently available for pre-orders directly from the Rome Foundation.

IBS Impact continues to make incremental updates to this blog, social media, and its main website several times a year,amassing archives that thus far cover almost eleven 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 160 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.

Please note that IBS Impact does not receive funding from Monash, the Rome Foundation, Dr. Drossman or Ms. Ruddy, 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.

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