Research Links Gut Microbiome Changes to Brain Structure in Irritable Bowel Syndrome (IBS)

June 14, 2017

The international gastroenterology conference, Digestive Disease Week, which traditionally takes place annually in mid-to-late May or early June generally brings a wealth of news on state of the science developments in gastroenterology research for a range of conditions, including irritable bowel syndrome (IBS). One of the interesting and groundbreaking articles presented this year,  which has received recent coverage in both scientific and mainstream media, is a collaboration of 14 researchers from UCLA, Texas Children’s Microbiome Center and Baylor College of Medicine,  and the Washington University School of Medicine in St, Louis, Missouri. The authors confirmed the existence of IBS microbiome subgroups as found in various researchers’ past work and made a preliminary identification of some specific microbes and their metabolites that appear to be involved. Also, for the first time, they found that structural differences in the brains of some study volunteers with IBS appear to correlate with gut microbiome composition.

The open access full text of the journal article, “Differences in gut microbial composition correlate with regional brain volumes in irritable bowel syndrome” by J. S. Labus, et al, was published in  Microbiome on May 1, 2017 and is linked above. “Study shows association between gut microbes and brain structure in people with IBS” by Enrique Rivero of the medical news website Medical XPress was published on May 5, 2017 based on information from UCLA. These sources were consulted for the summary below.

International IBS research in past years has previously established that IBS involves disruptions in the brain-gut-microbiome axis in both directions from the brain to the lower GI tract and from the GI tract to the brain. It also has been known that there are structural and functional brain changes in IBS, particularly in the areas controlling sensation and salience (a mechanism of the brain involved in attention to and perception of the relevance of stimuli), and particularly in those with a history of early trauma. Additionally, it has been known that there are changes in microbiome composition in those with IBS compared to healthy controls. However, until now, because of the extremely large number and range of different types of microbes present in the GI tract, it has been challenging to pinpoint specific and consistent microbes or to connect these patterns to the neurological differences. The above study has begun to do so.

The investigators obtained a variety of data from the volunteers including, history, physical exam, numerous standard questionnaires for various aspects of mental health, behavior, diet, and trauma history, if any,  as well as stool samples and brain imaging. The study participants included 29 adults with IBS according to Rome III international diagnostic criteria (in effect at the time, although Rome IV has been in effect since May 2016), about three-quarters of whom were female, representing all of the bowel habit subtypes, diarrhea, constipation, alternating or mixed, and unspecified/unsubtyped. There were 23 control subjects without IBS, all of whom were female. The IBS and control groups were roughly similar in average age. The average length of having IBS for those in the IBS group was 11.3 years, plus or minus 13.2 years.

There were no statistically significant differences in diet. Although a minority of the IBS group showed clinical anxiety and the total trauma history scores were similar between the two groups, those with IBS reported greater anxiety, stress, catastrophizing and trauma history.

The microbiome analyses showed that the participants with IBS fell into two groups. 14 individuals (9 women, 5 men) had a statistically significant altered gut microbiomes while the other 15 (12 women, 3 men) had microbiomes that were essentially indistinguishable from the healthy controls. These differences between groups were not correlated with age, IBS subtype, medication usage, stress, anxiety, depression or catastrophizing. There was some association between history of early life adversity and length of time with IBS and the microbiome alterations in the first group.  Neurological changes in relation to the healthy control group were found in both subgroups of the volunteers with IBS, but were more pronounced and extensive in the group with the microbiome changes.

It should be emphasized that this was a preliminary, exploratory study of a relatively small sample group, and while many details of the findings appeared to the researchers to be consistent with past studies on IBS , some aspects were more surprising, and many unknowns remain, including the causes of these alterations in these individuals with IBS. However, it is hoped that in time, with further research, IBS investigators will be able to identify consistent microbiome patterns in particular subgroups of IBS that will aid in diagnosis and determination of the optimal treatments for  specific individuals.

IBS Impact looks forward to following the progress of research in this aspect of IBS and hopes to report on more advances in the months and years to come.

 


Online Study: Thought Impact Scale, University of North Carolina, May 2017

May 30, 2017

The following online study conducted by Olafur Palsson, PsyD, psychologist, professor and researcher at the University of North Carolina Center for Functional GI and Motility Disorders, Chapel Hill, North Carolina, was received recently via social media. Dr. Palsson is a leading international researcher of IBS and its psychological aspects. The current study is not specific to IBS or any other chronic medical condition, and study volunteers need not have a medical condition, but if the Thought Impact Scale is validated through this and other research, it has potential applications for psychological interventions for IBS and other conditions.

Dr. Palsson is seeking adult volunteers aged 18 or over who are fluent in English and reside in the United States to complete two 25 minute surveys 30 days apart. You must be willing to provide him with your first name and an email address so that he can send a participant code number and password, but responses to the surveys themselves are anonymous and cannot be linked in the study database to personally identifying information.

The italicized paragraphs below are a direct, complete quotation of the details available on the study website, which is linked below the italicized portion. The website also includes a video of Dr. Palsson personally describing the intended research.  Please address any additional questions or concerns about the study directly to Dr. Palsson at opalsson@med.unc.edu

HOW MUCH DOES YOUR SUBCONSCIOUS MIND INFLUENCE YOU?

Participate in an online research study and get answers to that question.

Dr. Olafur Palsson in the University of North Carolina at Chapel Hill School of Medicine is testing a new questionnaire, called the Thought Impact Scale, which is designed to measure the degree to which subconscious (or non-conscious) mental functions affect people’s conscious behaviors, feelings and life experiences in everyday life. This online study will evaluate how the new questionnaire scores relates to various personal life experiences and characteristics, and assess the reliability and internal consistency of the questionnaire.
Whether you believe you are influenced a lot by your subconscious mind or only a little bit or even not at all, you are invited to participate in this study.

Participation requires:

Completing online surveys twice, about 30 days apart (takes about 25 minutes each time).
Being at least 18 years old, living in the United States and being fluent in English.

In exchange for your participation, you will:

Receive a personal report of your questionnaire results and their meaning. This report will include your scores on the new Thought Impact Scale and other questionnaires used in the study, how those scores compare in general with those of people in the study sample, and what the scores seem to mean about how much connection you have with your subconscious mind and how they relate to other main findings in the study.
Be entered into a drawing for 5 Amazon gift cards of $25 each
Receive a copy of the abstracts of all scientific papers that are published with the findings of this research
http://www.thoughtimpactscale.com

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 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.


Representative Pocan of Wisconsin Co-Sponsors HR 1187 for Functional Gastrointestinal and Motility Disorders

May 8, 2017

According to IFFGD and the official Congressional legislative database Congress.gov, Representative Mark Pocan (D-WI-2) recently signed on as the first co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015.

Representative Pocan is serving his third term in the House of Representatives. His district, the 2nd Congressional District of Wisconsin, encompasses Dane County, Iowa County, Lafayette County, Sauk County and Green County and parts of Richland and Rock Counties, including the state capital of Madison and environs. According to his official House website, Representative Pocan is a member of the House Appropriations Committee where he sits on the Subcommittee on Labor, Health and Human Services and Education, and he supports various health and veterans’ issues. Functional gastrointestinal disorders like IBS disproportionately affect military veterans and service members. He was also a co-sponsor of the most recent previous version of the Act, HR 2311 in 2014-2016, which did not pass.

If you are a constituent of Representative Pocan, please take a few minutes to write or call him with your thanks for his continued  support of the functional gastrointestinal and motility disorders community.

In officially supporting HR 1187, Representative Pocan joins Representative F. James Sensenbrenner, Jr. (R-WI-5) , who is the initial sponsor. If you are a constituent of Representative Sensenbrenner, please thank him as well.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2016 elections, district boundaries that may have been re-drawn, or if you have moved.

Your personal experiences as a person with IBS and/or other functional GI/motility disorders, or as a concerned family member, friend or colleague, are most effective in communicating to legislators and their staff that there are real human beings behind the statistics. However, even general expressions of support are helpful.

HR 1187 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 1187.

NIH grants funding to researchers throughout the world, not just in the U.S., so in the long run, enactment of this Act may also benefit readers with IBS in other countries. Medical research also sometimes involves multinational teams of scientists, and in any case, study results are usually published globally, adding to the cumulative knowledge worldwide.

It is IBS Impact’s understanding that HR 1187 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 115th,  the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012, HR 842 in 2014 and HR 2311 in 2016. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 1187 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


IBS Awareness Month 2017: Approaching a Decade of IBS.

April 30, 2017

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

Four 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, I reported in a similar vein on progress for the IBS community in each respective year. Now, continuing the tradition during my own ninth year and tenth IBS Awareness Month, once again, I can observe 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, from diet, to gut microbiota, to understanding of the visceral hypersensitivity responsible for pain, to stigma, and the effect of parental response on children with functional abdominal pain  and many other topics. These varied endeavors are taking place in or with the involvement of many scientists from many countries. See other posts in the Research category of the blog sidebar or our Facebook or Twitter feeds to see the range of research news and clinical trial opportunities publicized over the most recent several months. The annual Digestive Disease Week international gastroenterology conference taking place shortly in May traditionally provides even more state of the science research news each year.

Progress in the diagnosis and treatment of IBS:

 Over the past two and a half years, this blog has often reported on the development of Rome IV criteria, the latest update to the international symptom-based diagnostic criteria for functional gastrointestinal disorders like IBS, which was officially published and presented to the international gastroenterology community in May 2016.  This latest update reportedly involved over 100 experts from numerous countries. The Rome criteria, which are said by leading IBS researchers to be 98% accurate for most people with IBS symptoms, have been in existence in some form for 26 years, although research shows that many people with IBS and medical professionals who do not specialize in IBS remain unaware of this.

In addition to some changes in symptom criteria, Update on Rome Criteria for Colorectal Disorders: Implications for Clinical Practice,” by Magnus Simren, MD of the University of Gothenburg in Sweden, Olafur Palsson, PsyD and William Whitehead, PhD of the University of North Carolina Center for Functional GI and Motility Disorders in the U.S., published this month in Current Gastroenterology Reports, notes that the Rome IV is attempting to encourage a transition from the more stigmatizing “functional GI disorders” to a “disorders of gut-brain interaction,” which is more reflective of current understanding of IBS and related disorders, some of which include functional diarrhea, functional constipation and  centrally mediated abdominal pain (functional/recurrent abdominal pain) among others affecting the lower or upper GI tract.  In addition, the authors state that, “Therefore, in Rome IV it is emphasized that functional bowel disorders constitute a spectrum of GI disorders rather than isolated entities. It is acknowledged that, even though they are characterized as distinct disorders based on diagnostic criteria, significant overlap exists, and occasionally, it may be difficult to distinguish them as distinct entities. Furthermore, it is also highlighted that transition from one functional bowel disorder to another, or from one predominant symptom to another, is frequently seen, and this may occur as part of the natural course of the disorder, as a response to therapy, or both.”

As this blog reported on October 11, 2015,  Rome IV guidance also includes a new Multidimensional Clinical Profile which, for the first time, takes into account common extraintestinal (non-GI) symptoms and other psychological and social factors that may influence care. It is hoped that all of these changes will provide better diagnosis and treatment for people with IBS worldwide, and new opportunities for education of medical professionals in disorders of gut-brain interaction.

Several investigational medications and other non-pharmaceutical treatment options are always in the research pipeline in various parts of the world. Eluxadoline (brand name Viberzi), already in use in the United States, was approved by Health Canada in March 2017. According to Canadian contacts, the timeline for availability depends on provincial decisions.

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

As this blog reported on January 29, 2017, in December 2016, the Gastrointestinal Society released its report on a year-long survey on experiences and opinions and needs of adults with IBS and parents of children with IBS across Canada. The results are intended to shape future GI Society programs and to advocate and educate health care providers, policymakers and community members about IBS. A five-question followup survey, open to previous and new participants, is still accepting responses at this time. The link to both the report and the follow-up are in the linked January post.

Progress in societal supports for people with IBS:

The IBS Network in the United Kingdom made great progress this past year in its ongoing efforts to support and expand the availability of local, in-person self-help/support groups for people with IBS in the UK. as reported by this blog on October 23, 2016 and January 13, 2017.

Although the Irritable Bowel Information and Support Association (IBIS) in Australia closed this year, the administrators of the IBS Support Facebook group, of which I am one, were pleased to be recognized as one of the two alternative resources IBIS suggested on its remaining web page. This international, evidence-based educational group is currently administered by 9 individuals from 4 countries, all of whom have had IBS for many years, and are highly knowledgeable from formal professional education and experience and/or many years active in the IBS community. At this time, membership is over 27,000 and grows by about 1000 members each month.

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. In late March of this year, Dutch foods were added to the app, allowing those in the Netherlands to use it more easily. 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 number of products currently certified is small, but growing Previously, the only manufacturers listed were in Australia or New Zealand, but there have been recent additions in the U.S. and Canada as well.

Progress in advocacy and awareness:

The International Foundation for Functional Gastrointestinal Disorders has  continued to shepherd the Functional GI and Motility Disorders Research Enhancement Act through its fourth attempt at passage by the U.S. House of Representatives, with the support of IBS Impact and other groups and individuals. After three previous attempts in the three previous Congresses,  it  was reintroduced in the the current 115th Congress under a different Act number, HR 1187, in March 2017 and has received bipartisan support from Representative.  See the Legislation category, HR 1187,   HR 2311 HR 842 and HR 2239 subcategories in the right sidebar of this blog for more on this history of this important Act.  IFFGD has also been an ongoing advocate for veterans, who are disproportionately at risk for functional gastrointestinal disorders like IBS.

IBS Impact once again completely redesigned and updated its main website in December 2016 and continues to make incremental updates and improvements several times a year.  The number of followers of this blog and our social media accounts continues to increase. Largely due to the release of the Rome IV criteria in May 2016, overall hit counts average 300-400% higher than prior to Rome IV and have remained in the new range almost one year later. A Rome IV post has now displaced the August 12, 2011 post on IBS being added to service-connected disabilities for Gulf-era U.S. veterans as the most popular post in the history of this blog, a status the previous post held from 2011-2015. Cumulatively, IBS Impact now reaches readers in over 130 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.


Free Online Webinar for IBS, Functional GI Disorders with Dr. Drossman, “Achieving Effective Patient-Provider Communication” on April 24, 2017

April 17, 2017

The American College of Gastroenterology has announced that for IBS Awareness Month, it will be sponsoring a free online webinar presented by Douglas Drossman, MD, MACG  and one of his patients, Katie Errico on “Achieving Effective Patient-Provider Communication.” The webinar will take place on Monday, April 24, 2017 from 8:00-9:00 p.m. Eastern time. The webinar is designed specifically for people with irritable bowel syndrome and/or other functional gastrointestinal disorders.

Dr. Drossman, a leading, internationally-known expert on IBS, functional gastrointestinal disorders, doctor-patient relationships and the biopsychosocial approach to medical care, is President of the Drossman Center for the Education and Practice of Biospsychosocial Care, President of the Rome Foundation, Professor Emeritus of Medicine and Psychiatry at the University of North Carolina at Chapel Hill, retired co-director of the University of North Carolina Center for Functional GI and Motility Disorders and a longtime board member of the International Foundation for Functional Gastrointestinal Disorders,  along with many other pivotal roles in the development of the field of functional gastrointestinal disorders like IBS over his 40+ year career.

To participate in the webinar, please use the link to register. You will need to provide ACG with your full name and email address so that instructions for accessing the webinar on the scheduled date can be sent to you. It is open to anyone in any geographical location who has Internet access fast enough to handle streaming video, audio and chat technology. You will be able to ask questions after the presentation. Please keep in mind that Dr. Drossman cannot diagnose or treat anyone over the Internet, and depending on the number of participants and questions, he and Ms. Errico may or may not be able to get to every question.

“Achieving Effective Patient-Provider Communication” online webinar with Dr. Drossman, April 24, 2017

This is a tremendous and rare opportunity, especially for people with IBS or their loved ones to hear from and communicate directly with one of the world authorities and pioneers in the research, education and treatment of IBS. IBS Impact thanks ACG for making this webinar possible. We also thank Dr. Drossman for taking time out of his busy schedule to make himself available to the general public, and for his long decades of commitment to making functional gastrointestinal disorders like IBS a serious field of medical research and to supporting and treating many who live with these complex conditions.

 

 


Guest Post for IBS Awareness Month: Misinformation, Mystery, and Muddling Through IBS

April 7, 2017

IBS Impact is pleased to welcome a guest blogger this week for IBS Awareness Month. We thank her for her time and sharing her important experiences and insights.

Kathy Kersmarki lives in Winter Park, Florida. She worked twenty five years as an elementary school secretary/ bookkeeper and is now retired. After suffering for five decades with IBS and not sharing her story, she finds that being forthright about IBS  initiates meaningful conversations  and helps others to understand the condition. It also opens the door and allows other sufferers  to share their stories  as well. 

​I would like to thank Nina Pan for the opportunity to share my IBS story.

I believe I can safely say that anyone who suffers from IBS feels the impact on every aspect of their lives. It affects work life, home life, leisure life and relationships.  It becomes all consuming and everything sufferers do revolves around the condition.

I have had IBS for five decades that I can determine and may have even had it as an adolescent and teenager.  For years, I didn’t have a name for it and only knew I needed answers that never came.

I don’t blame the medical community entirely but I do believe that they should be availing themselves of scientific, documented evidence and should be passing this information on to patients.  Most of us have spent years going from one doctor to another to be told the condition is from stress, from food, from not getting enough exercise and if we just take this pill, or discontinue eating particular foods and stop being stressed, it will all get better.  The problem with that is it doesn’t get better without doctors truly understanding IBS.

I was at my wits’ end with IBS when I stumbled across a Facebook IBS support group which is science based. The administrators of the site made it clear that it wasn’t a forum for the latest gimmick or the newest over the counter herb or medicine.  I had spent years asking doctors and searching for information and in one site I learned that IBS is a brain/gut disorder and all of a sudden, the pieces started to fall in to place.

At this time, I was fortunate enough to find a gastroenterologist who listened to me and listened to what I was learning and together we made a plan. I told her about my anxiety and how I had become a captive to IBS. I was afraid to leave the house because when I left the house, I worried I would need a bathroom and that anxiety I felt caused the self fulfilling prophecy of needing that bathroom. Because I couldn’t leave home without needing a bathroom , I began planning my day the night before. What would I wear to disguise any issues, what would I eat, where were the bathrooms. It became a vicious and horrible cycle that many who suffer from IBS share.

She started me on a low dose anti-anxiety medication which in conjunction with the low FODMAP diet put me on the road to living a more normal life. I determined trigger foods and tolerated foods and was able to eat a healthy diet.  I also learned about Michael Mahoney’s IBS gut-directed hypnotherapy from the support group. His program enabled me to retrain the mind/gut connection. That was the last piece to the puzzle of my IBS and for eight months, I have been able to live the most normal life I have had in decades.

I believe there are answers for IBS sufferers but it is extremely vital that research continues and science based information is disseminated to everyone who enters a doctor’s office with questions about their digestive systems and the problems they have.  My hope is that every doctor, especially gastroenterologists, begins to tell their patients there is hope and to explain the brain/gut connection and help people to better cope.  My heart breaks reading some of the stories on the IBS support page. People are grossly misinformed and they are willing to try anything and everything regardless of how little it helps or how dangerous it might be.  I believe this is because the medical community doesn’t do a thorough job of learning the newest science based research and they too quickly dismiss the patient’s concerns.

I know I am one of the lucky ones who is managing to live a fairly normal life with IBS and I hope one day all sufferers will have the same results.

 


April is Irritable Bowel Syndrome (IBS) Awareness Month 2017

April 1, 2017

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 several times month 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.

3) If you’re not comfortable being public, you can still quietly distribute information in public places. IBS Impact has business cards with our logo available free for the asking. IFFGD/the Digestive Health Alliance has free downloadable awareness posters and other resources. The Gastrointestinal Society, in Canada, distributes free information packets and pamphlets that can be ordered online and mailed to addresses within Canada.  The IBS Network in the United Kingdom also offers a variety of IBS fact sheets to its paid members. Leave these materials in public displays or bulletin boards in community centers, libraries, medical offices and hospitals, pharmacies, banks, post offices, college campuses, wherever many people go every day.

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 hope to be welcoming guest bloggers 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. 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.

6) Participate in a research study 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 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.

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. Seeral 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 Goodsearch/Goodshop (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 that 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. Talk to a health professions class or go to a health fair. 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.