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, 2019April 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.

Guest Post for IBS Awareness Month: My Perceptions and Tips On Being a Supportive Spouse

IBS Impact welcomes another guest blogger this week. Jake S. lives in the United States with his wife, who has IBS. He is an engineer and an outdoors enthusiast. He also loves smoking low FODMAP meals with her, as well as hiking and camping. He wrote this article especially for IBS Impact. We appreciate his willingness to support his wife and other people with IBS and their partners by sharing his experiences and useful advice.

Read a recent post by Jake’s wife here.

For the last five years my wife has been suffering from IBS-D. It took almost three years to diagnose her GI issues as IBS and start managing it with things like the low FODMAP diet and gut directed hypnotherapy. The journey that those with IBS go through, I think, can only be given justice by those who experience it. Since I do not have IBS, I am here to speak to the five-year journey I have been on as a supporter of a spouse with IBS. If you are reading this, you already know IBS is not the sexiest of conditions and as a spouse it can be difficult to know how to be supportive and how to adjust to the changes that come from living an IBS friendly lifestyle. I would like to share three topics I think new supporting spouses and others will find helpful on their own journey towards supporting a spouse with IBS. The first is simply how to talk about IBS, the second is the isolating effects IBS has on your spouse, and the third is guilt as a spouse without IBS. For all three, communicating and having open discussions with your spouse are crucial. 

Being in the support role means sometimes you might have to explain why your spouse has disappeared to the bathroom for an extended amount of time, why they didn’t eat any of the food they were served, or why they are not going out to dinner that night. Due to the social stigmas around discussing your spouse’s bowel movements, it is important to have a plan going into social interactions. As everyone is different, there is no one right answer here, but the best advice I can give is to simply have a conversation with your spouse. Find out where their comfort level is when discussing their IBS with various people and to what degree. You may find their answer is significantly different in what they desire to share from one family member to another. The same goes for any friends or social groups that you interact with. So, really discuss this with your spouse and understand how best to support them. This will allow you to respect their comfort levels when having to handle these sensitive and personal moments like a lengthy bathroom visit. 

The feeling of isolation that occurs once you know your spouse has IBS can be very real and it will impact the both of you. However, it doesn’t need to be all consuming. This is unfortunately amplified by the fact that IBS is oftentimes a lesser known and understood condition that is uniquely different for everyone afflicted by it. In the beginning, going out to do anything associated with food seems incredibly daunting because you just don’t know what landmines lie ahead. The best advice I have about this is for both you and your spouse to go through the process of understanding their dietary restrictions together. When your spouse goes through the oftentimes tedious process of the FODMAP diet, slowly eliminating and reintroducing foods to understand their specific triggers, be attentive! Learn their triggers alongside them. This will ensure that your spouse is not completely alone on their journey. 

Knowing the triggers will set you up to be more supportive in the future too. You can then be an extra set of eyes to help avoid the trigger foods and find new foods to build out a meal plan that has been severely cut down from what it used to be. Just don’t make the mistake I have made several times of not asking before purchasing a new item. Ask your spouse before bringing home that lactose free cottage cheese. Just because it is low FODMAP and safe doesn’t mean they are going to like it! Turns out, she really hates cottage cheese. (Side Note: I highly recommend downloading the Monash FODMAP app. Trust me, it will help immensely when shopping for your spouse.)

Another example of where having this knowledge can help relieve the feeling of isolation is that you will find people who want to be supportive but just don’t have the tools or knowledge to be helpful. They will most likely look to your spouse for information. Given that you have been involved and have the knowledge, you can share in this burden and step in to help others learn more about your spouse’s specific needs. Again, just make sure your spouse is okay with your discussing it with each person. Most likely, they will welcome the support of this tag-team approach.

In supporting your spouse, you may find yourself doing what we did and shifting most of your meals to low FODMAP, versus making separate meals for them and the rest of the family. This allows you to meal plan together and again helps in alleviating that feeling of isolation. Although we rarely eat out anymore, we instead get adventurous in our own cooking, oftentimes experimenting with new recipes or modifying old ones to suit her dietary restrictions. We have found cooking together to be enjoyable and have found ways of creating low FODMAP meals we never thought possible, such as pizza and BBQ! It can even be an excuse to get a fancy new toy. My new smoker is a great example. 

In wanting to be supportive of my spouse, I also found myself dealing with quite a bit of guilt, especially early on in this journey. I even shame-ate in the car on a few occasions just so she didn’t have to see me eat a delicious burger she could no longer enjoy without consequence. My feelings of guilt, about how she could no longer eat what I could, were real, but my actions were unnecessary. Discussing this guilt with my wife helped lessen those feelings. She never asked me to shame-eat in my car. She wants me to still be able to eat foods I enjoy, but that she can no longer have. If you are sharing a meal plan and being supportive of your spouse, they will understand if you need to have something different on occasion. Being a supporter of someone with IBS means you’ll be emotionally involved in the experience too. Communicating and sharing in the experience with your spouse means you’re both not alone as you go through this experience together, although differently. 

Everyone is different and will have a different experience, but hopefully this post helps you, as a spouse, family member, or friend, on your journey to supporting a loved one with IBS. In the end, communication is important and will help in the many situations you’ll encounter in this journey. 

 

Guest Post for IBS Awareness Month: Making Sense of Unsupportive Family and Friends and Finding Supportive Others

IBS Impact welcomes a guest poster this week. Megan S. lives in the United States with her husband. She is currently a PhD candidate in sociology and working towards the completion of her dissertation. When not focused on her research, teaching college courses, or finding camaraderie in the IBS Support (Official) Facebook group, she enjoys cooking with her husband, and camping and hiking with him and their energetic pet dog. She wrote this post especially for IBS Impact. We thank her for her time, effort, and candid, helpful perspectives.

Read a recent post by Megan’s husband here.

 In many ways, I wish this blogpost was uncalled for. Unfortunately, many of us have experienced unsupportive, judgmental family and friends, who sometimes even blame us for, or don’t believe in, our diagnosis. This post tries to make sense of and explore some of the reasons why this might be, as I also share about my family’s slow “coming round” to accepting my IBS and demonstrating empathy. Through practicing our own empathy, we might find patience as we wait for our loved ones to process their own emotions about our IBS, and I propose other resources and networks while we wait for these individuals to (hopefully) come round to being supportive.

It began with the live action Beauty and the Beast movie and a side salad, or so I thought. After grabbing dinner, my friend and I went to the movies. There, my stomach turned and grumbled, and it dawned on me: I could not make it through the movie. I waited for what seemed like a lull and went for it. Thank goodness the restroom speakers piped in the soundtrack of the movie as my explosive diarrhea created its own. Too bad we were not watching a more explosive movie; Transformers would have done the trick.

Although the insoluble fiber in lettuce is something I cannot handle, removing lettuce did not resolve all my woes. Next it was spice, then, incorrectly, nightshades, and probably a few more along the way that I’ve since forgotten. An acquaintance of mine, who I knew from college and often socialized with through mutual friends, was diagnosed with this “IBS,” and I stood in resolute denial that such a thing could be plaguing me. Next, my doctor mentioned that my symptoms sounded like IBS, but again, denial can be a determined beast.

As my symptoms escalated over the next few years, I found myself having more bad days than good. I could hardly remember what a “normal” bowel movement was. Pain became my companion. I was exhausted, sometimes spending several days on the couch, in pain and afraid to eat. Somewhere in this low point of mine I had a not-so-bad day and ran into this acquaintance with the IBS at a social gathering. As I griped to him, he told me about some “FODMAP diet,” and something called “Monash.”

That moment serves as the page turner in my story. I transitioned from embracing denial to embracing knowledge about the condition, and perhaps recognizing that I have IBS. (I totally have IBS.) Over the course of a year, I found great success with the low FODMAP diet. From there, I benefited from gut directed hypnotherapy and enteric coated peppermint pills. Two years later, I am still tweaking my diet and experimenting with scientifically proven symptom management options, now empowered by knowledge as opposed to burdened with denial.

However, this transition was not met with support by everyone I held near and dear. IBS is still incorrectly considered by many “that condition” that really means doctors simply do not know what is truly “wrong” with you. (For a great discussion on social stigma and chronic illness, check out this 2013 guest post for IBS Impact by Dr. Tiffany Taft, Psy.D., a GI health psychologist and leading researcher on this very topic.) Upon telling my father I had IBS, he told me that he never had any issues like this, and that clearly, I did not get this condition from him. His words stung. I questioned if he believed me. In reality, he was processing his own guilt and sorrow; many parents feel this way when their children suffer from chronic conditions.

In planning a group trip, a friend of mine stated that they no longer wanted to hear about “my poop problems,” overwhelmed with my adamant demand that I need access to a means of making my own food. A week of eating in restaurants would destroy me with my extreme sensitivity to FODMAPs.

An extended family member, exasperated with my ever-changing dietary restrictions as I worked with a FODMAP trained dietician, irritably stated, “Just tell me the list of what you can and can’t have once you figure this out,” and walked off. This comment, in addition to so many others, hurt. I felt invalidated and that others perceived me as simply being difficult or needy, wanting to be the center of attention perhaps. No one saw the pain I experienced afterwards, at home the next day, curled up on my couch. Most of all, these statements made me feel unwanted. In reality, everyone else was just struggling to make sense of my IBS and how it altered the ways I was able to interact and spend time with them.

There is a wonderful theoretical piece by Peggy A. Thoits, a leading researcher on life course theory. For those with chronic conditions, there tend to be two groups of supporters: primary and secondary (2011). Primary group members are oftentimes spouses, family, and close friends, whereas secondary group members are more distanced, such as coworkers or acquaintances. Oftentimes, the random coworker who steps up as a secondary group supporter has something in common with the individual, in our case, perhaps sharing in IBS or another chronic condition.

Although primary group members are a crucial support system, “primary group members are typically upset about the individual’s situation themselves, even more so if it creates serious disruptions in their own lives. They are invested in the problem being resolved as quickly as possible to alleviate their own and their loved one’s distress. Invested supporters therefore may minimize the threatening aspects of the problem, insist on maintaining a positive outlook, or pressure the person to recover or problem solve before he or she is ready” (Thoits 2011:153).

Thoits’ observations might resonate with many of us here. Although our loved ones support us, sometimes their methods might offend and hurt, invalidate, and frustrate us. They might wish for a cure when there is none. Much of this boils down to their need to emotionally process this significant change in our lives and theirs. I witnessed this myself when my own primary supporters demonstrated their own emotional strain and stress, lack of empathy, and their requests for a simple food list which is oftentimes impossible to provide with IBS. Of course, not every primary group member will feel this way; some will be incredibly supportive, while others will falter.

My largest takeaway is to give these individuals time. Recently, I decided to be more open about my pain, symptoms, and experience with IBS, compared to discussing IBS in a distanced and informative way. When my father called to talk during a recent flare, I informed him that I was feeling tired, in pain, and toilet bound. Over the next few days, he checked in on me, asking how I was feeling and if I was on the mend. It was the first time he outwardly demonstrated compassion towards me regarding my IBS. This is a major change from his declaration of him not having these types of issues.

We live in a very solution focused society, especially those of us in westernized societies, which is why it is unsurprising that family members will oftentimes bombard us with incorrect advice. Oftentimes these individuals are doing their best to help, even if disastrously so. When this happens, I have found it best to give them a specific way that they can help. Several family members of mine constantly offered incorrect dietary advice, such as cutting gluten or preservatives. They often became frustrated when I turned their “advice” down. Below their advice was their own emotional processing. These individuals express love through food. Suddenly, my IBS was a direct challenge to their expression of love. Once this dawned on me, I was able to provide some safe recipes for them to make. It began with just one and over time we’ve built a small list so that they may express their love in the way they know best.

Of course, this comes with some caveats. There are primary group members whom you might lose or grow distant with. Some of my friendships have not lasted the way I had hoped. Perhaps some of these individuals will eventually come round. It took me until 2020 to really begin the low FODMAP diet; live action Beauty and the Beast came out in 2017! It took me three years to accept what was going on with my body, even though I was the one in pain and performing the daily diarrhea soundtrack. In comparison, my father taking two years from my diagnosis to come around might even be considered reasonable.

While I waited, and in some cases continue to wait, for my loved ones to process their emotions regarding my IBS diagnosis, I was fortunate to find supportive “others” elsewhere, in those Thoits calls “secondary group members.” These are individuals whose “knowledge about one another is less personal… work, voluntary, and religious organizations are examples of secondary groups” (Thoits 2011:146). Of course, not every coworker or acquaintance will be supportive. However, Thoits posits that “similar others,” in other words, secondary group individuals who have similar experiences, such as their own chronic conditions, can provide a wonderful resource. “Having ‘been there’ themselves, similar others can tolerate expressions of distress and validate the normalcy of the person’s emotional reactions and worries, rather than deny, criticize, or attempt to change them because they are upsetting or threatening to hear” which may be true for primary group members (Thoits 2011:154). Simply put, their similar experiences allow these individuals empathy, and their emotional distance means they are not personally impacted.

Recall that acquaintance? He was a secondary supporter who has since become a great friend. We share poop stories, discuss food options, and more. Never underestimate the value of a good poop story. At first, he was the sole informant, providing me with incredible resources. Since then, I have also empowered myself with knowledge and have been able to return the favor by informing him about additional resources. More importantly, we can speak in IBS terms; we understand this experience. Lastly, did I mention that we can relate with a good poop story?

My takeaway about secondary group members is that if you don’t have any, find some! I was fortunate to have an acquaintance who was already diagnosed; however, he was not my only secondary contact. I’ve become closer with a colleague who has celiac, and various others who have GI disorders. Beyond these individuals, I also found an IBS support group on Facebook which I have benefited greatly from. Most days I spend some time answering questions or providing advice that aligns with the most recent scientific understandings about IBS. I have a sense of both purpose and community as I help others in this virtual space.

In short, IBS is a cruel condition, not merely because of the wretched symptoms, but also in the ways it can disrupt our quality of life and impact the lives of others we cherish most. Some of these individuals will handle your IBS incredibly well. I am fortunate to say that my spouse has been one of these impressive primary supporters. Others will need time to process. Be patient. Some, unfortunately, may never come round. Regardless of how much, or lack of, support you receive from these loved ones, consider finding secondary group supporters, whether it be through a Facebook group, engaging with blogs such as these, support groups in your local community, or that unexpected coworker. Finding others who relate can be endlessly valuable as we wait for loved ones to come round.

Thoits, Peggy A. 2011. “Mechanisms Linking Social Ties and Support to Physical and Mental Health.” Journal of Health and Social Behavior 52(2):145-61.

April is Irritable Bowel Syndrome (IBS) Awareness Month 2022

April is Irritable Bowel Syndrome Awareness Month. IBS affects, depending on the source, at least 25 million and perhaps up to 58 million women, men and children in the United States and anywhere from 9-23% of the population in different countries on every continent of the world.  In the U.S, this prevalence exceeds that of diabetes, chronic kidney disease, asthma, adults with chronic heart disease, and, by far, inflammatory bowel disease (IBD), with which IBS is often confused. IBS Impact stands in solidarity with what Olafur Palsson, PsyD, full professor and leading researcher at the University of North Carolina Center for Functional GI and Motility Disorders once estimated as half a billion people with IBS around the globe. As noted in the January 10, 2012 post on this blog, in 2011, a Rome Foundation working team estimated that 40% of us are mildly affected, 35% moderately affected and 25% severely affected, with the last two groups significantly larger than that same group of professionals had previously thought.

Unlike awareness weeks and months for these and other common health conditions, it is often difficult to know this unless one follows certain IBS sites, but as time goes on, awareness gradually increases. In 2012, this blog  first published a version of this post as  “10 Things We Can Do for IBS Awareness This Month and Every Month,”  which remains one of the most popular single posts in the history of this blog.  That post has been revised and updated as needed every year since. Here are 10 possible strategies for how people with IBS in any country can increase awareness of IBS. Readers of this blog who are relatives and friends, with the permission of the person with IBS, feel free to help the cause too.

1) If they do not already know, talk to your family, friends, coworkers, classmates and medical providers about IBS. Having IBS is often an isolating experience, and some people with IBS who have “come out of the closet” have found that the stress of hiding and worrying about who knew and how much they knew actually triggered worse symptoms.  No, not everyone will “get it” and that can be hurtful or tiring, but people without IBS will never learn to understand unless we are willing to tell them. Some of them will help you and it may be the people you least expect. Given that IBS is the most common functional gastrointestinal disorder with prevalence anywhere from 9-23% in different countries worldwide, it’s very likely that some people  you tell will also have IBS or loved ones with IBS. The IBS Impact main website has an entire page of articles specifically for family and friends. Many past posts on this blog are also tagged for this subject, and can be found by using the search box on the right sidebar.

2) If you find the IBS Impact website or blog or any other reputable IBS site useful and interesting, share it with your family and friends, other people with IBS and your health care providers, especially those not currently active in the IBS community.  Knowledge is power. The more people who have good information and resources rather than outdated misconceptions and quacks, the better off we will be as individuals and as a group. IBS Impact also posts to its Twitter and Facebook pages with scientifically reputable articles, resource links, clinical trial and advocacy opportunities and encouragement from sources all over the globe. If you use these social media platforms, your likes, comments and shares are a quick and low-effort way to participate in IBS awareness and spread the word very quickly. On social media, #IBSAwarenessMonth has become an  established hashtag over the years among people with IBS, families,  GI organizations and leading IBS researchers.  The IBS Impact main website has just been updated in late March 2022 replacing old links and/or adding new material on all pages in time for IBS Awareness Month.

3) If you prefer traditional means of distributing information, IBS Impact has business cards with our logo available free for the asking. IFFGD, in the U.S.,has a free downloadable media tool kit and press release.  The Gastrointestinal Society in Canada has its own downloadable IBS Awareness infograph and resources.  The IBS Network in the United Kingdom also offers a variety of IBS fact sheets to its paid members.

4) Volunteer to share your story on the IBS Impact sites by using the contact links on the main website. We welcome diverse perspectives from people with IBS and their families and friends, and will be welcoming  guest bloggers later this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name and country of residence. IFFGD also accepts personal stories for its websites, anonymously or with names. IFFGD also occasionally quotes people with IBS in its publications.

5) Interact with the media. When there is coverage of IBS-related topics in mainstream print or broadcast stories or blogs, send or post your comments and corrections. This lets the media and other readers, viewers or listeners know we are out here as a community and that we care about how IBS is portrayed. IFFGD occasionally gets requests from the media to interview affected people. If you are interested, let IFFGD know that it can contact you. The IBS Network also sometimes publicizes requests from UK-specific media. Occasionally, IBS Impact does as well. For a past discussion of the media and IBS, see the November 6, 2011  post. Read about an advocacy success with a major U.S. media outlet in the January 20, 2014 blog post,  and IBS Impact’s more recent response to widespread, grossly inaccurate reporting involving IBS on October 23, 2017.

6) Participate in a research study or register for a database of potential volunteers so that scientists become more aware of our needs. Some studies are online or through the mail or phone. We regularly list some open studies and databases on this blog, and on the main website, and/or share them on social media,  and many of the resources we link do as well. Currently, as of April 2022, there are listed opportunities in the United States, the United Kingdom, Italy, and Australia. We always welcome additional studies from reputable organizations, academic medical centers or clinics and pharmaceutical companies for listing consideration and encourage them to contact us.

7) IBS Impact is not a charity, but consider donating to one of the GI-related organizations or research facilities in your country. Many are listed on our links and research pages of the main site. It is very important for all non-profits to show that they are supported by their own constituency (the people whom they represent) when they approach other funding sources.  It is true that many IBSers don’t have a lot of money to spare, but even small amounts help. Several years ago, one person with IBS stated that if every person with IBS in just the U.S, the U.K. and Australia alone committed a dollar or pound a month, we’d have over a billion a year. If you’d like, have a fundraiser. IFFGD and other charitable organizations are generally glad to assist their supporters in these efforts. For more on why financial support to IBS entities is important, see this July 22, 2011  post and its August 25, 2014 followup.

8) If you absolutely cannot donate directly, use Amazon Smile (in the U.S.)  or iGive  (in the U.S. or Canada) or Everyclick (in the U.K.) as your search engines or online shopping portals on behalf of the gastrointestinal charity of your choice. These sites all work slightly differently, but participating merchants designate percentages of each transaction to specific organizations you indicate. It doesn’t look like much each time, but the amount adds up if you use them consistently. Nothing extra comes out of your own pocket, and the charities do get the money.

9) Write to legislators or policy makers to support issues of importance to the IBS community. IFFGD can help U.S. citizens with current U.S. legislation of concern to functional GI and motility disorders. If you prefer not to go through an organization, you can do so yourself. Often there are separate state issues as well, which, when possible, we attempt to publicize on this blog. The IBS Network occasionally posts U.K. specific advocacy on its website and social media.

10) If you’re ambitious, organize an awareness event, especially those of you who are students or health professionals. Although this April, much of the world is still social distancing and avoiding public gatherings amid the COVID-19 pandemic, virtual events are possible now or in the future. Talk to a health professions class or study group. For another discussion of why IBS awareness is important, see this July 9, 2011 post. GI organizations, including the ones listed above, are often happy to assist their supporters with grassroots efforts if desired.

There are many more than 10 possible ways to advance the cause of IBS awareness worldwide. IBS Impact was founded on the belief that awareness is an ongoing process that should not just happen one month a year, so don’t just restrict yourself to April. But every action, small or large, multiplied by many people with IBS and our supporters moves us closer to a time when IBS is widely understood by the general public and when the medical and social needs of people with IBS as a community can be more easily met.

IBS Impact’s Top 20 (or 45!) Countries and Top 20 Posts of 2021

For the New Year, IBS Impact is once again participating in the common December-January blogger tradition of highlighting popular posts and interesting blog statistics from the year just past.

This blog reached readers in 73 countries and territories during 2021. The cumulative total is 167 for the  ten years WordPress has made country statistics available to individual blog owners. While, predictably for an English-language site, 9 of the top 10 countries/territories this year are ones where English is one of the official languages, total blog hits span every continent, underscoring that IBS is a global problem, not the common, inaccurate stereotype of it as a nuisance disorder caused by overindulgent North American diets and lifestyles. A list of the top 20 countries, which is actually 45 this year, because of several ties of multiple countries each– better reflects the diversity of countries of origin represented, which appears to change somewhat every year. It is hoped that the vast majority are legitimate visits, even from those who might not have been searching specifically for information about IBS, and not simply potential spammers. In order, the countries are:

1. United States

2. United Kingdom

3. Australia

4. Canada

5. Spain

6. South Africa

7. India and Ireland (tie)

8. Belgium

9. Singapore

10. Puerto Rico

11. Japan

12. Mexico and New Zealand (tie)

13. Romania, the Netherlands, Germany, and China (tie)

14. Poland, Brazil, and Finland (tie)

15. Kuwait, the Philippines, and France (tie)

16. Turkey and Italy (tie)

17. Israel, Macedonia, and Trinidad & Tobago (tie)

18.  Hong Kong, Russia, and Argentina (tie)

19. Thailand, Greece, United Arab Emirates, Saudi Arabia, Ecuador, Vietnam, and Sweden (tie)

20. Denmark, Norway, Bangladesh, Kenya, South Korea, Nigeria, and Panama (tie)

Below are the top 20 individual posts that received the most hits during 2021.

Most of the posts in 2021’s top 20 list were first published in 2011 through 2020. However, they continue to attract attention because most address topics that are of ongoing interest to people with IBS. Perhaps longtime readers can refresh their memories and newer readers will discover something interesting and useful.

There are also four posts from 2021 on this top 20 list that readers may have missed when they were first published in recent months. If so, take a look.

Please note that since this blog has been in continuous existence for 10 1/2 years, some links embedded in posts that are several years old, while valid at the time of publication, have inevitably become out of date and may lead to a dead link or completely different site. You may find the updated or a similar current resource on our main website. If not, feel free to leave a comment, and IBS Impact or other readers may be able to assist. In order, the posts are:

1.The Americans with Disabilities Act (ADA) and Irritable Bowel Syndrome (IBS), July 30, 2012

2. Guest Post from a Teen for IBS Awareness Month: I Am No Longer A Lost Boy April 9, 2021

3. Designer Mychael Knight Could NOT Have Died from Irritable Bowel Syndrome (IBS), October 23, 2017

4. Irritable Bowel Syndrome (IBS) and a Debate on “Can’t Wait” Cards,  November 25, 2012  Please note that the blog originally linked in the above post as a basis for discussion no longer exists on WordPress.com. However, the ideas raised and the invitation by IBS Impact for readers and the IBS community to continue to discuss related concerns are still valid.

5.  Education Laws and Resources for Students with Irritable Bowel Syndrome (IBS), August 27, 2013

6. Resources for People with Irritable Bowel Syndrome (IBS) in Australia 2017, February 16, 2017

7. Guest Post From a Parent for IBS Awareness Month: An Emotional Journey, April 26, 2021

8. Public Restroom Access and Irritable Bowel Syndrome (IBS),  February 21, 2011

9. New Rome IV Diagnostic Criteria for Irritable Bowel Syndrome (IBS) Unveiled May 2016, June 9, 2016

10. Massachusetts Enacts Restroom Access Act, August 20, 2012

11. Restroom Access Act (Ally’s Law) Updates in Maryland and Maine, May 10, 2013

12. More Things to Say and Not to Say to People with IBS, February 27, 2013

13. Functional Gastrointestinal Disorders/IBS Considered Presumptive Service-Connected Disabilities for U.S. Gulf War Veterans,August 12, 2011

14. 13 Years and 14 IBS Awareness Months: Moving the IBS Community Forward 2020-2021 May 3, 2021

15. Book Review: The Everything Guide to the Low-FODMAP Diet: A Healthy Plan for Managing IBS and Other Digestive Disorders November 17, 2014

16.  April is Irritable Bowel Syndrome (IBS) Awareness Month 2021, April 1, 2021

17. Yes, Researchers All Over the World Are Actually Studying Irritable Bowel Syndrome (IBS), December 28, 2014

18. Guest Post for IBS Awareness Month: Living with IBS, April 7, 2020

19. IBS and Extraintestinal (non-GI) Symptoms,  September 6, 2011

20. Irritable Bowel Syndrome (IBS) is Not a Diagnosis of Exclusion, October 9, 2011

This blog was begun in July 2011, a few months after the launch of the main IBS Impact website, and a bit over a year after the inception of IBS Impact itself. It is intended as a supplement to the many resources on our main site, one that can be updated relatively quickly with time-sensitive news, advocacy and clinical trial opportunities, as well as providing well-researched, scientifically reputable information on IBS and commentary on broader issues affecting the IBS community that may not be widely discussed on other sites. It is meant to be useful to a broad readership: people with IBS and related conditions, both those who may have lived with IBS for some time and those with recent onset or who are new to IBS sites online, family members and friends, health care and human service professionals who may interact with us, and the general public. We are pleased that it continues to fulfill this role.

IBS Impact wishes everyone a happy, healthy, prosperous and productive New Year and looks forward in 2022 to advances in awareness, advocacy, research, treatment and community support systems that benefit the worldwide IBS community.

Veterans with IBS and Functional Gastrointestinal Disorders, 2021

Today, November 11, is Veterans Day in the U.S. ,a federal holiday. It is also the traditional day on which many entities highlight veterans’ issues. U.S. veterans and current military service members who have been deployed in the Persian Gulf/Southwest Asia  region at any time since 1990 have been shown by multiple studies to be at even higher risk of IBS and other functional GI disorders than the general population. Conservative estimates put the incidence of functional GI disorders in the general population as 25%, most commonly irritable bowel syndrome. For veterans and military service members of the Persian Gulf/Southwest Asia era, the estimate may reach as high as 40%. This appears to be in part because of the high incidence of known functional GI risk factors during active duty, such as severe stress or trauma and/or food or water contamination that results in post-infectious IBS  (IBS-PI) or other post-infectious functional GI and motility disorders.

Here is IBS Impact’s August 12, 2011 post on the recognition ten years ago by the U.S. Department of Veterans Affairs of irritable bowel syndrome and functional gastrointestinal disorders as presumptive service connected disabilities for Gulf War veterans.

IFFGD has done considerable work in the past several years in advocating for federal funding and other legislative needs specific to veterans, conducting outreach to service members and veterans and encouraging those affected by functional GI and motility disorders to participate in veteran-specific self-advocacy efforts. Since fiscal year 2012, functional GI disorders have been included in the Department of Defense Gulf War Illness Research Program, which is part of the Congressionally Directed Medical Research Program. However, advocacy from the veteran community and supporters must occur on an ongoing basis for funding to be continued each fiscal year.

As this blog reported on January 20, 2014, the depth of need for further awareness, services, support, and research in the veteran community is not necessarily well known even within the Department of Defense or other military entities, the media or the general public. The post linked in the second paragraph of this post about the recognition of IBS and other functional GI disorders as presumptive service-connected disabilities, more than eight years after original publication, has continued to receive consistent hits from readers on many days. By an extremely wide margin, from the inception of this blog in mid-2011 through 2015, it was the #1 most read individual post, of what are over 300 cumulative posts on this blog. It was also the #1 most read post for each individual year.  Not until the release of the Rome IV international diagnostic criteria in late May 2016, did it drop to #2 on the all-time and 2016 and 2017 lists, still remaining #2 of all time through 2018-2020 and thus far in 2021. Clearly, a very strong need exists for information and resources on this topic. It is hoped that given the relatively higher impact of functional GI disorders among veterans and service members, and their relatively higher profile as a constituent group, any advances on behalf of the affected veterans and service members will eventually carry over to people with functional GI disorders in general.

The following article on the IFFGD website, “FGIMDs and Military Service” by Mark S. Riddle, MD, DrPH (Captain, US Navy, retired), University of Nevada, Reno School of Medicine and the VA Sierra Nevada Health Care System, Reno, NV, is an up-to date overview as of 2021.

IBS Impact encourages veterans, service members and families in the IBS and functional GI community, as well as those who support them, to familiarize themselves with the issues and resources, and to consider participating in self-advocacy activities. We look forward to feedback from readers as to how IBS Impact may be able to support such efforts further.

Online Survey: IFFGD Long COVID 2021 for Those with Gastrointestinal Disorders, August 2021

The following survey on pandemic, COVID and vaccine experiences among adults with any chronic GI disorder, including IBS, is from the International Foundation for Gastrointestinal Disorders, a 30 year old science-based U.S. not for profit organization/charity focused on various gastrointestinal disorders, including IBS and other disorders of gut-brain interaction/functional gastrointestinal disorders. The survey is online, anonymous, and international. Please address any questions or concerns directly to IFFGD as the originator of the survey.

https://survey.alchemer.com/…/Long-COVID-2021-Survey

IBS Impact welcomes researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional focus groups, studies or surveys they wish to be considered for posting. A contact form is available on the main IBS Impact website.

IBS Impact makes these announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation. Additional studies can be found by clicking on the Research– Clinical Trials sub-category in the right sidebar of this blog on our main website IBS studies page. Please be sure to check the date at the top or bottom of a given post, as many posts from this blog remain visible in search engines for several years, and studies stop accepting volunteers or conclude the trials after a period of time. IBS Impact, as an entity, is not directly affiliated with any research sponsor or organization and receives no funding from any source for studies, surveys or links we feature on this blog, the main site or social media.

Focus Group: IFFGD Invites Those with GI Disorders to Participate in Ongoing Focus Group for “Disparities and Inequalities in Health Care”, June 2021

The following focus group is a new opportunity being established by the International Foundation for Gastrointestinal Disorders (IFFGD), a 30 year old U.S. not for profit organization focused on various gastrointestinal disorders, including IBS and other disorders of brain-gut interaction/functional gastrointestinal disorders. Below is the text of the announcement exactly as received from IFFGD. IBS Impact encourages interested readers with IBS to consider joining.

        We would like to increase our knowledge of the disparities in healthcare for those living with GI disorders among persons of varied racial and ethnic backgrounds as well as other social determinants of health.   IFFGD hopes to gain a broader perspective on the topics patients feel are most important when receiving equitable healthcare and find ways to address the gap needs.    Our goal is to have a focus group meeting every other month starting in late June.    If you are interested in joining the Disparities and Inequalities in Healthcare focus group, please email us at iffgd@iffgd.org

Please address any questions directly to IFFGD.

IBS Impact welcomes researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional focus groups, studies or surveys they wish to be considered for posting. A contact form is available on the main IBS Impact website.

IBS Impact makes these announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation. Additional studies can be found by clicking on the Research– Clinical Trials sub-category in the right sidebar of this blog on our main website IBS studies page. Please be sure to check the date at the top or bottom of a given post, as many posts from this blog remain visible in search engines for several years, and studies stop accepting volunteers or conclude the trials after a period of time. IBS Impact, as an entity, is not directly affiliated with any research sponsor or organization and receives no funding from any source for studies, surveys or links we feature on this blog, the main site or social media.

Updates to IBS Impact.com Main Website, May 2021

IBS Impact has recently completed the latest round of updates to many pages of our main website,  IBS Impact.com,

The advocacy page, IBS page,  research page, IBS studies page, resources page, family and friends page, IBS and children page, and links page, plus the news updates in the light blue and white footers of every page all have additions or updates of content or links, or deletions of outdated links in late March, April and early May.

Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or Twitter feeds (links found on the lower right sidebar of this blog and in the light blue and white footer sections below each page of the main site).  Each has slightly different information on an ongoing basis. Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material and links. The current site reflects resources in six English-speaking countries which are among the top sources of hits to the site and this blog: the United States, Canada, the United Kingdom, Ireland, Australia and New Zealand. Several additional countries are occasionally represented on various pages.

Because of the redesign and transfer of the site to new hosting twice in 2015 and 2016, some links embedded in older posts on this blog or search engine results relating to IBS Impact.com may result in error messages, but you should still reach the site itself. If so, please use the navigation links at the top of the site to reach the desired subpage.  No information that is still currently useful has been removed from the site, although in some cases, the location has changed. Only outdated details and occasional defunct links for which there is no replacement available at this time have been deleted. The date of last update is indicated at the bottom of subpages that change periodically.

Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and worldwide public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.

IBS Impact as an entity, is not directly affiliated with any other organization, site, or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations,  and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide.

Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable evidence-based organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered. A contact form  can be found on the main site, or comments can be left on this blog.  Thank you to all of our readers and social media followers for your interest and participation.

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

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.