Another IBS Awareness Month and What the Year Has Brought Us

April 10, 2014

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

Last year, 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 last year marked my sixth April with IBS. I observed how for me and  many other people with IBS 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 have 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.

April 2014 marks my sixth year and seventh April as a person with IBS, and even in the space of a single year, there are steps forward to report.

Progress in the science of IBS:

In the past year, this blog has posted several times on new areas of promising IBS research, including genetics, the microbiome, possible cellular metabolism and the use of magnetic resonance imaging to study gut motility. These varied endeavors are taking place in or with the involvement of many scientists from many countries. See the following posts: October 6, 2013, February 9, 2014 and March 8, 2014, as well as other posts in the Research category of the blog sidebar to see the range of research news and clinical trial opportunities mentioned here over time.

Progress in the treatment of IBS:

Linaclotide, a newer prescription medication already in use in the U.S. for IBS-C, was launched in Europe as Constella beginning in mid-2013. Several other investigational medications and other non-pharmaceutical treatment options such as diet, probiotics and psychological interventions, are always in the research pipeline in various parts of the world. In the spring of 2013, through the advocacy of IFFGD, IBS Impact and others, the U.S. Food and Drug Administration selected IBS, GERD and gastroparesis for the FDA Patient Focused Initiative.

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

Recently, a large, multi-center study led by Jeffrey Lackner, PsyD of the State University of New York at Buffalo, collaborating with colleagues at Buffalo, Northwestern University, Wayne State University and UCLA, was published showing that contrary to the beliefs of many health care professionals, factors other than gut symptoms, such as fatigue, non-gastrointestinal symptoms and negative social interactions have a large correlation to the perceptions that study subjects with IBS had of their own health. See the article in the American Journal of Gastroenterology and podcast with Dr. Lackner here.  This is research that has gotten much attention in recent weeks and months and seems to validate the lived experiences of many of us with IBS.

Progress in societal supports for people with IBS:

Largely through the efforts of our peers in the inflammatory bowel disease community, additional U.S. states have adopted Restroom Access Acts, popularly known as Ally’s Law, or introduced bills to enact one. These individual state laws have the common goal of allowing people with medical conditions, including irritable bowel syndrome, that may cause urgent restroom needs, to use employee-only facilities in retail stores if no public restrooms are immediately available. See the May 10, 2013 and March 14, 2014 posts.

Progress in advocacy and awareness:

The International Foundation for Functional Gastrointestinal Disorders and its grassroots arm, the Digestive Health Alliance  (IFFGD/DHA)  continue to shepherd the Functional GI and Motility Disorders Research Enhancement Act (HR 842) through its second attempt at Congressional passage, with the support of IBS Impact and other groups and individuals. The Act has picked up several new co-sponsors in the U.S House of Representatives since April 2013. See the March 2, 2013 and September 27, 2013  posts for more about HR 842, IFFGD has also been an ongoing advocate for veterans, who are disproportionately at risk for functional gastrointestinal disorders like IBS. In November 2013, the Pediatric Research Network Act, which IFFGD  joined many other health organizations in supporting, was signed into law. While this law is not specific to IBS or functional GI disorders, the law addresses pediatric-specific medical research, and its resources and insights may translate into gains for children and youth who have IBS or related gastrointestinal conditions.

At least twice in the past year, Douglas Drossman, MD, FACG, has spoken out publicly about his concerns regarding high profile media coverage of IBS or functional GI disorders. (See the September 20, 2013 and January 20, 2014 posts.) Dr. Drossman is the founder of Drossman Gastroenterology, the Drossman Center for the Education and Practice of Biopsychosocial Care, the founder and co-director emeritus of the University of North Carolina Center for Functional GI and Motility Disorders, the current president of the Rome Foundation, and one of the foremost international experts in the field. His work and his voice have been and continue to be influential.

IBS Impact’s site hits for the main site and this blog, as well as followers for this blog and social media continue to increase year by year, and we have reached over 100 different countries and territories with this blog alone. Record daily and monthly hits were reached last November with this post on common misconceptions about IBS.

These are just a handful of examples of forward motion 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.

April is Irritable Bowel Syndrome (IBS) Awareness Month 2014

April 1, 2014

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.

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. It was revised and updated in 2013, and now again for 2014. 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 a week 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 has free downloadable awareness posters and other resources. The Irritable Bowel Syndrome Self Help and Support Group online forum based in Canada that draws visitors from many countries worldwide, has a downloadable brochure in English explaining IBS to those who do not have it, with translations in Simplified and Traditional Chinese, Swedish and German on the website. The Gastrointestinal Society, also 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 some guest bloggers this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name. 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 a recent 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. A few 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.

8) If you absolutely cannot donate directly, use Goodsearch (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.

New Updates to IBS for March-April 2014

March 26, 2014

Many updates to most pages of the IBS Impact main website have been underway recently. Among the changes are updated information and links on the progress of advocacy for the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, also known as H.R. 842. There have also been new resources added on the links page, advocacy page, and IBS and children page. The IBS studies page has been considerably revised. Defunct links for some older material previously on the site are being removed, and some items are being rearranged. The various updates involve resources in four countries that are among the top visitors to IBS Impact.

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 public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.

April is IBS Awareness Month and some intriguing things are also being planned for this blog in the coming weeks, so please check back.

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 organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered. Contact links for the IBS Impact founder and webmaster can be found on the home page of 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.

Delaware Introduces Restroom Access Act (Ally’s Law) in General Assembly

March 14, 2014

Yesterday, through the social media of Ally Bain, an advocate for the restroom access laws that popularly bear her name, IBS Impact learned that a Restroom Access Act has been introduced in the 147th General Assembly in the state of Delaware. According to various media sources, this appears to be the latest attempt over several years to pass such legislation in Delaware..

The current effort, which is known, as HB 245, has State Representative Trey Paradee (D-29) as its primary sponsor in the Delaware House of Representatives. He is currently joined by seven co-sponsors in the House. In the Delaware State Senate, the bill’s primary sponsor is State Senator Bethany Hall-Long (D-10) Similar to most existing restroom access laws in other states,  the proposed legislation provides that customers of a “retail establishment,” who have an “eligible medical condition” that requires immediate access to restroom facilities must be allowed, on request, to use an employee restroom during normal business hours, if there are at least two employees present at the time, there is no public restroom available on the premises, and allowing use of the facility would not pose a health or safety hazard to the customer or an obvious security risk to the business. Examples of eligible medical conditions specifically mentioned in this draft of the bill are Crohn’s disease, ulcerative colitis, celiac disease, any other inflammatory bowel disease, irritable bowel syndrome, use of an ostomy device or any other medical condition that requires immediate access to a restroom. Acceptable forms of proof that may be requested are a written note from a physician or other licensed medical professional or an identification card issued by a national organization for the medical condition or a local health department that states the person has the condition. The current text of HB 245 is linked here.

Please keep in mind that as it is still pending legislation, there may be changes made in the process of consideration. The bill has just been introduced, and must be passed by the General Assembly and signed by Delaware’s governor in order to become law.  IBS Impact encourages Delaware residents who are also U.S. citizens to contact their State Representatives and State Senators to express their support for the eventual enactment of this bill.

According to a press release on the website of the Delaware House Democrats, the issue of restroom access for individuals with medical conditions was brought to State Representative Paradee’s attention by a 15 year old girl with Crohn’s disease, which is a form of inflammatory bowel disease (IBD), and her parents. Their advocacy appears broadly similar to the past efforts of Ally Bain, who also has Crohn’s disease. Many years ago, Ally had an accident in a store after her request to use the employee restroom was refused, despite her explaining repeatedly that she had an urgent medical need. After that humiliating experience, Ally successfully worked with legislators in her home state of Illinois to pass one of the earliest state laws to address this issue. Ally is now an adult and a student in law school, but was only 14 years old when she began her quest, and she inspired others, many of them also teenagers, to join Ally in advocating for similar legislation in their own states. IBS Impact commends the willingness of these young people to speak publicly of their needs in a way that many of their peers, as well as many affected adults, historically do not.

As of this writing,  IBS Impact is aware of fifteen states having restroom access laws specifically allowing people with medical conditions to use employee-only restrooms in retail establishments: Colorado, Connecticut,  Illinois, Kentucky, Maine, Maryland, Massachusetts, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Washington State and Wisconsin. As these are individual state laws, they each vary in certain details,  Please see IBS Impact’s previous posts on February 21, 2012, August 20, 2012, and May 10, 2013 for links to the text of the law in each of the states where one currently exists. In most of these states, irritable bowel syndrome (IBS) is specifically mentioned in each law. In Massachusetts and Maryland,  IBS is covered broadly under “any other medical condition requires immediate access to a restroom facility.”

In past years, similar bills been introduced in several additional states, but have not yet passed, requiring continuing advocacy and reintroduction in subsequent legislative sessions.  IBS Impact has reached out to Ally and other self-advocates in the inflammatory bowel disease community in an effort to increase public awareness of the similar concerns of many people with IBS, as well as to offer support toward this common goal. While their diagnosis of IBD is different from IBS in several ways, the experience of gastrointestinal pain, unpredictable, urgent or frequent trips to the bathroom and feeling embarrassed and alone is shared by many people with IBS. The IBD community has generally been much more publicly visible and active in these advocacy efforts relative to people with IBS.  Please see IBS Impact’s previous post on November 2, 2012 for commentary on why it is in the interests of the IBS community to join our IBD-affected peers in pressing for these laws.

Beyond the need to advocate for the laws themselves, there also seems to be a need for increased awareness of the laws that exist among people with IBS, IBD or other bowel or bladder conditions who might benefit from these laws. There is also no centralized source for the status of laws, pending legislation, and advocacy efforts in each state, making it difficult to verify information at times. While IBS Impact does not currently have the resources to be as comprehensive a source for this as would be ideal, over time, this blog has striven to report on as much information on the subject as is readily available. When possible, we have also included links to the laws and to grassroots groups concerned with these issues in certain states.  We encourage readers and followers, both in the IBS and the IBD community, to comment here or to contact IBS Impact privately with additional information or corrections in the future, so that all people with medical conditions causing urgent restroom needs can benefit from this knowledge.

University of North Carolina Study Finds Possible Maternal DNA Link in Small Subset of Irritable Bowel Syndrome (IBS)

March 8, 2014

Many people with irritable bowel syndrome are the only known people with IBS in their families, while others report relatives, sometimes many, who also have or had a diagnosis or symptoms suggestive of IBS and/or one or more of several other chronic conditions that commonly overlap with IBS. This suggests that there are genetic influences in the development of IBS for at least some affected people. Narrowing down precisely what they are has been one of many diverse areas of IBS research in recent years.

A few weeks ago, a team led by principal investigator Miranda van Tilburg, PhD, Associate Professor of Medicine at the University of North Carolina Center for Functional GI and Motility Disorders, published results that show that a small percentage of cases appear, at least in part, to be linked to dysfunction in mitochondrial DNA. Mitochondria are subunits within cells that are involved in generating cellular energy. In human beings, mitochondria are inherited only through a person’s biological mother. Previous medical research has shown that problems with mitochondria also appear to be involved in other functional gastrointestinal disorders, chronic fatigue syndrome, depression and migraines, all of which are commonly overlapping conditions with IBS.

Dr. van Tilburg and her colleagues studied Caucasian adults who included 308 known to have irritable bowel syndrome (IBS), 102 healthy controls and 36 known to have inflammatory bowel disease (IBD). The researchers found probable maternal inheritance in 17.5% of study volunteers with IBS, in contrast to 2% in the control group and 0% of those in the IBD group. The researchers called this a “significant minority” who may have a form of IBS inherited through mitochondrial DNA. Dr. van Tilburg and her colleagues emphasized that the sample size was small, and the results should be replicated with larger groups and further research. There is no single IBS gene per se, that is known at this time.

These are intriguing results that appear to be promising in understanding possible causes of irritable bowel syndrome and, along with other recent genetic and biomarker research as discussed on this blog on February 9, 2014, perhaps collectively leading to usable diagnostic tests and improved treatment options in the long-term future. IBS Impact commends this important scientific work, and looks forward to further progress and answers for our community in the years ahead.

IFFGD/DHA Announces Advocacy Day 2014 For Functional GI and Motility Disorders

February 25, 2014

IFFGD’s grassroots arm, the Digestive Health Alliance, has announced Advocacy Day 2014 which will take place in Washington, DC on June 23-24, 2014. Participants will join IFFGD/DHA staff and functional GI and motility researchers in meeting directly with legislators regarding several issues of concern to the digestive health community. These include HR 842, the bipartisan Functional Gastrointestinal and Motility Disorder Research Enhancement Act of 2013, which is still seeking additional co-sponsors in the U.S. House of Representatives, the hoped-for introduction of a corresponding Act in the Senate, Department of Defense fiscal 2015 funding for the Gulf War Illness Research Program on behalf of veterans, who experience disproportionately high rates of functional gastrointestinal and motility disorders, and the National Institutes of Health budget for fiscal year 2015.

The advocacy activities are free of charge and some meals will be provided. However, those traveling to Washington, DC from outside the area must pay for their own transportation and hotel accommodations. IFFGD has secured a group rate at an area hotel for the event if reservations are made by May 20. This year, a limited number of attendee sponsorships will be available to cover lodging for individuals who may need partial financial assistance to attend. Travel and other costs will still be the attendee’s responsibility. Registration for Advocacy Day itself will be open until May 30 at the above link.

IBS Impact supports having as many options as possible for people to choose the advocacy issues that interest them. Add your voice to those in the IBS and functional gastrointestinal and motility disorder community who are already speaking out. U.S. citizens, if you have contacted your legislators before with no results, don’t stop, but try again. Every person, collectively, makes a difference.

Would Renaming Irritable Bowel Syndrome (IBS) Make a Real Difference?

February 17, 2014

Over the years, the symptom cluster currently known as irritable bowel syndrome or IBS has been called various other terms that are now outdated. These range from, among others, the extremely vague “nervous stomach” to the inaccurate “spastic colitis,” “irritable colitis” “mucous colitis” (IBS, as currently understood scientifically, is not a form of colitis.) to “spastic colon,” as an apparent attempt to acknowledge the unpredictable motility found in IBS. “Irritable bowel syndrome” is the most recent name choice, as physicians and researchers began to realize that the symptoms of IBS form distinct patterns. “Syndrome,” in a medical context, means “a group of signs and symptoms that occur together and characterize a particular abnormality.” This part of the present name is more consistent with the symptom-based Rome criteria that functional gastrointestinal disorder experts have advocated as the international diagnostic standard for over two decades. Rome III is the current version. (See page 889.) Rome IV is presently under development.

Yet, many people with IBS, as well as professionals in the field, and even some people outside the IBS community find “irritable bowel syndrome” problematic as well. For one thing, because of the similarity in acronyms, IBS is frequently confused with inflammatory bowel disease (IBD), which is not the same condition and responds to different types of treatments than IBS does. In the experience of the IBS Impact founder, the general public, the media and even respected scientific journals on occasion, are not immune to this error, and it is frustrating to people with IBS and people with IBD alike.

Secondly, like it or not, any mention of the word “bowel” in everyday public conversation tends to be stigmatizing. In most cultures, talk of toilet habits is considered crude or impolite, often fodder for juvenile humor, suppressed snickering or stunned silence and a quick change of subject. Add the word “irritable” next to it which, in the scheme of unpleasant experiences, implies a very trivial and fleeting annoyance, not a complex, chronic medical condition with potentially severe impact on quality of life, and this ratchets up the opportunity for those who do not know better to make fun of people with IBS. If it’s possible to do so with no consequences, because historically, most people with IBS feel too embarrassed to identify themselves and protest, can society take our very real needs as a community seriously?

Recently, following an instance when a verbal play on the words “irritable bowel syndrome” was used publicly in an unrelated context meant to be humorous, the IBS Impact founder observed that the joke itself was amusing, but that the connection to IBS was not necessary and could be offensive, a comment with which several other conversation participants, including some who have no known connection to IBS, agreed. One asked why, given the problems described earlier in this post, the name has not been changed already, pointing out, among other examples, that, rightly, it is no longer socially acceptable to call a person who has Down syndrome a “mongoloid,” and that what previously was called “manic-depression” is now widely known as “bipolar disorder.”

The IBS Impact founder explained that while many within the IBS community do feel that “irritable bowel syndrome” is not an ideal fit, there are so many other pressing issues that need attention: basic awareness among people with IBS and families and health care providers themselves, let alone the general public, greater access to medical and mental health professionals and services in our local communities, such as IBS education programs and support groups, more research funding and IBS-friendly legislation, easier access to disability benefits if needed, and the list of needs goes on. People who have a similarly poorly understood chronic condition that commonly overlaps with IBS, “chronic fatigue syndrome,” also known as “chronic fatigue immune dysfunction syndrome,” and also known as “myalgic encephalomyelitis” have had similar debates in their community over preferred terminology, and the evolution to a more “serious” sounding name has been slow in many countries. Given all that, and the facts that the formal organizations that focus on IBS, where they exist in a handful of nations worldwide, are small, the pool of professionals who specialize in IBS, relative to other GI conditions, is also limited, and the number of people with IBS and families who are willing to “come out of the closet” publicly and advocate consistently over a long period of time is infinitesimal, it appears that, for the near future, a name change is low on the list of priorities for our community.

The original questioner then replied that in that person’s opinion, a name change would appear to be a higher priority if it encouraged and empowered more people with IBS to be open and to advocate for themselves without the stigma of the silly name. This might be true, although that result is difficult to predict before it happens. What would we reasonably change it to? Would anyone outside the functional gastrointestinal disorders community understand, for example, “Neurogastrointestinal Colon Dysfunction” or “Functional Colon Disorder?” It seems that the latter would imply wrongly to the average layperson that the colon functions, rather than, correctly, that there is a non-organic, non-structural, non-metabolic reason it doesn’t function– although even that traditional “functional” versus “organic”  dichotomy is becoming murkier with increasing research on IBS. In either case, it’s realistically likely that one’s conversation partner would ask, “What’s that?” forcing the brief clarification, “IBS,” and we would be back to the original problem. By the time any new terminology was well established in the lexicon, would it again be quickly obsolete from new scientific understanding about what IBS actually is?

What do readers think? Would calling IBS something else make a meaningful difference on any level?


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