13 Years and 14 IBS Awareness Months: Moving the IBS Community Forward 2020-2021

♦ May 3, 2021 ♦ Leave a comment

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

Eight 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, and April 30, 2020, I reported in a similar vein, on progress for the IBS community in each respective year. Now, continuing the tradition during my own thirteenth year with IBS,  with my fourteenth IBS Awareness Month recently ended , 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 a national 14-year study of those with IBS, their biological siblings, and unrelated control groups in Sweden, showing definitively with scientific evidence that IBS does not cause increased risk of death, currently open studies on the effect of the COVID pandemic on psychological well-being of people with IBS (in Italian, but with an option in the drop-down menu for English) and the experiences of young people with IBS or other functional GI/disorders of gut-brain interaction in the transition from pediatric to adult care, the correlation of psychological comorbidites in symptom severity  and several different studies on existing treatments such as gut-directed hypnotherapy, cognitive behavioral therapy, the low FODMAP diet,  as well as ones still under investigation, such as fecal microbiota transplants and some medications.

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:

As first reported in June 2020, the American Gastroenterological Association conducted a literature review and does not recommend routine use of probiotics for IBS or other chronic GI disorders because of low evidence of effectiveness for a very small subset of people.

In December 2020, the American College of Gastroenterology updated its clinical guidelines for IBS.

In April 2021, the British Society of Gastroenterology updated its own clinical guidelines for IBS.

During 2020-2021 Rome Foundation has offered several online symposia as part of 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. The Rome V updates to the Rome international diagnostic criteria began development this past 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.

In 2021, 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, published Gut Feelings: Disorders of Gut-Brain Interaction and the Patient-Doctor Relationship, A Guide for Patients and Doctors. Publisher’s Weekly, a major publication in the U.S. publishing industry, has a review of Dr. Drossman and Ms. Ruddy’s work here.

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 2020-2021, also 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 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:

In March 2021, as part of a session on online support groups for IFFGD’s 2021 Virtual Advocacy Event, I was honored to be invited to present on IBS Support (Official), a 77,000 member and constantly growing science-based Facebook support group for which I am one of 14 administrators/moderators from 6 countries. 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. 13 members of the admin team are adults with longtime IBS. One is the parent of a minor child with IBS. Several admins have relevant professional background in scientific research or health care, education, health or disability advocacy, and/or contacts with leading professionals and organizations in the IBS community. We are pleased to fill a growing need for reputable IBS support and to be recognized by IFFGD as a credible and evidence-based source worthy of being highlighted.

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. This year,several foods common in India were tested and added to the database. 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, Austria, the United States, Canada,and several multi-national brands. Monash continues online training courses, both for dietitians and for people with IBS using the diet.

[Please note that IBS Impact does not receive funding from Monash or  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 people with IBS and families.

This year, for the organization’s 30th anniversary, IFFGD has launched a completely redesigned website and has been busy implementing its new Nancy and Bill Norton Educational Series, named in honor of IFFGD’s founders, who developed and headed the organization from 1991-2017. IFFGD envisions this 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.  Due to the COVID-19 pandemic, all events this year have been only online. However, from the discussion stage, it has always been the plan to stream Norton Educational Series events online in addition to any in-person future events, so that people with chronic GI conditions served by IFFGD can participate regardless of where they are in the world.

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 ten 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.

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