15 Years and 16 IBS Awareness Months: Step By Step 2022-2023

♦ April 29, 2023 ♦ Leave a comment

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

Ten 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,  May 3, 2021, and April 30, 2022. I reported in a similar vein, on progress for the IBS community in each respective year. Now, continuing the tradition during my own fifteenth year with IBS, with my sixteenth 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 impact of diet on the colonic microbiome, long term GI outcomes of COVID-19, the neurobiology of IBS, hypnotherapy and long term stress memory in the enteric nervous system, gut microbiome signatures for different IBS subtypes, mechanisms of abdominal pain and food intake, quality of life in IBS,  addressing the unmet needs of patients with IBS, the FODMAP diet in a paediatric setting, IBS in men,  histamine production and the gut microbiota, fecal microbiota transplants for IBS, and medical students’ perceptions of IBS versus inflammatory bowel disease.

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:

Several national or multinational guidelines for the diagnosis and/or treatment of IBS have been newly published or updated this past year.

The American Gastroenterological Association  guidelines for IBS-D and IBS-C were released in June 2022.

Also in June 2022, the United European Gastroenterology Journal published European guidelines for the treatment of functional bowel disorders with diarrhoea based on the work of United European Gastroenterology and the European Society of Neurogastroenterology and Motility. IBS is the most common of many disorders in the functional bowel disorder/disorder of gut-brain interaction category.

In September 2022, the updated results of a consensus meeting in the United Kingdom on diet and IBS were published.

March 2023 saw the publication of the Indian consensus statement on irritable bowel syndrome in adults. This was a collaboration between the Indian Neurogastroenterology and Motility Society and the Indian Society of Gastroenterology.

During 2022-2023, 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 and has initiated several research grants as well as an award for effective doctor-patient communication. The Rome Foundation is also making efforts to formally bring dietitian professionals into roles in the Rome Foundation, in recognition of their importance in the health care of many people with disorders of gut-brain interaction including IBS. Finally, the Rome V updates to the Rome international diagnostic criteria, begun in 2021, continue to be developed with the participation of 144 experts from 27 countries, 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.

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 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.

IFFGD and WebMD are also collaborating on another online survey to improve patient care for IBS.

Progress in societal supports for people with IBS:

IBS Support (Official), a science-based Facebook support group for which I am one of 14 administrators/moderators from 6 countries, currently has over 98,000 members, an increase of approximately 11.5% 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. 13 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.

The Canadian Digestive Health Foundation provides several recent articles and resources for those with IBS.

IBS Network location-specific support groups in a few areas of the United Kingdom have resumed online or in-person. Many had been temporarily suspended due to the COVID pandemic. The IBS Network provides training and support to volunteer group leaders.

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.

Progress in awareness and advocacy:

Earlier this month, IFFGD returned to Washington, DC for the first time since the pandemic, with a delegation of staff, GI professionals and GI affected people to advocate for the needs of the GI disorder community. Details of the IFFGD 2023 Advocacy Event can be found at the link.

The IBS Network recently launched a Positive Steps campaign aimed at awareness of the connection between IBS and mental health. Several webinars have been conducted on related mental health topics. Individual recordings of past events are available at modest cost from the IBS Network, which is the UK national charity for IBS and is entirely supported by donations.

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 published, Gut Feelings: The Patient’s Story. Personal Accounts of the Illness Journey  in July 2022. 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. Dr. Drossman and Ms. Ruddy are currently working on a third book in the series from the perspectives of major thought leaders in the disorder of gut-brain interaction (DGBI) field.

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 twelve years of quality, evidence-based material, resources and personal experiences of those who blog for us. Cumulatively, IBS Impact now reaches readers in over 170 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 any 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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