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.


ACTION ALERT: Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017 (HR 1187)

March 21, 2017

In early March 2017,  the International Foundation for Functional Gastrointestinal Disorders (IFFGD) publicly made known that the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017, also known as HR 1187 was introduced in the United States House of Representatives on February 16, 2017.  HR 1187 addresses public awareness efforts and research funding for functional gastrointestinal and motility disorders like IBS, as well as improved efforts at coordination of research efforts and prescription drug approval among federal entities and the functional GI and motility disorder community.

This is similar to the bill that was known in the 112th Congress in 2011-2012 as HR 2239, in the 113th Congress in 2013-2014 as HR 842 and in the 114th Congress as HR 2311. Because the composition of Congress changes with each federal election, it is not unusual for legislation that does not pass to be reintroduced in future sessions under different bill numbers depending on the date of introduction.

IBS Impact thanks IFFGD  for its ongoing work of many years in bringing this bill to fruition, and urges readers who are U.S. citizens to advocate for this landmark legislation on behalf of people with IBS and related disorders. As with the previous versions of the Act, HR 1187, was introduced by Representative F. James Sensenbrenner, Jr. (R-WI-5) as the initial sponsor. On March 13, 2017, Representative Mark Pocan (D-WI-2), a co-sponsor of HR 2311 in the previous Congress, became the first co-sponsor of HR 1187.

Past versions of the Act have been supported by both political parties and it is a revenue-neutral bill, meaning no new spending or taxes are involved. However, through this legislation, Congress can direct the National Institutes of Health to allocate existing discretionary resources specifically to IBS and other functional gastrointestinal and motility disorders, such as GERD, gastroparesis, chronic idiopathic psuedo-obstruction, functional dyspepsia, short bowel syndrome, Hirschsprung’s disease, cyclic vomiting syndrome, chronic bowel incontinence from various causes, and many others, which collectively affect about 25% of Americans. Irritable bowel syndrome is the most common of these. 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 often involves multinational teams of scientists, and in any case, study results are usually published globally, adding to cumulative scientific knowledge among professionals and public awareness of various conditions worldwide.

In order to pass the House of Representatives in this Congress, HR 1187 needs support from 218 Representatives, a majority of the House, by the end of the current 115th Congress in December 2018. During 2011-2012, the previous bill received sponsorship or co-sponsorship from 17 Representatives in 12 states and both political parties, in 2013-2014, 20 Representatives from 13 states and both political parties, and in 2015-2016, 13 Representatives from 7 states and both political parties. Some are no longer members of the House of Representatives, but IBS Impact hopes that previous cosponsors who are still in office will continue their support and encourage their colleagues to sign on as well. Now affected people and our supporters must show Congress that this is important enough to pass and enact.

For more information, see IFFGD’s link at: https://iffgd.org/advocacy-activities/congressional-bill.html
The text of the bill, the current status and cosponsors can also be accessed directly at any time through its official Congressional database entry at Congress.gov. If you do not know who your Representative is, you can look up this information by entering your zipcode in the “Find Your Representative” search box with the white U.S. map graphic near the top right corner of your screen at house.gov. In some zipcodes, different areas fall into two or more different Congressional districts, in which case you will then be prompted to enter your exact street address to determine the correct district.

Clicking on your Representative’s name will take you to his or her official House website, which will have contact forms, links or details. If you already know who your Representative is, you can generally find the website by typing his or her name into any Internet search engine. Because modern security procedures for postal mail may result in significant delays, legislators generally prefer to hear from constituents through email/website contact forms or telephone. If you choose to call, it is preferable to ask for the staff person in charge of health issues, but if he or she is not available, you may leave a message or speak to the person who answers your call. Many legislators also have social media accounts.

Your specific personal experiences as a person with IBS and/or other functional gastrointestinal disorder or a family member, friend or professional who supports us, and how HR 1187 is needed are most effective in communicating that we are real people behind the statistics. However, even a polite general request can demonstrate to your Member of Congress that there are many constituents interested in the swift passage of this Act.

When writing and/or calling, be sure to state your name, where you live in the Congressional district and that you are a constituent. Tell briefly why you are interested in HR 1187 so they know who you are and why the bill is important– such as have had IBS for X years, have had difficulty finding adequate relief or have a family member with IBS, etc. If you are prepared with a few reputable facts and details about IBS in general to show that this is a widespread issue, not just your personal problem, these also help in showing credibility on the issue. The IFFGD link above has some suggested talking points.  Familiarity with your Representative’s record on or interest in other health issues may also help,  but if you do not know these things, telling your own experience is fine. Be sure to say thank you. Then pass the word to family, friends, coworkers or classmates who have been supportive of you with your IBS. Keep in mind that because of the 2016 elections and redistricting, you may have a different Representative than before, even if you have not changed your residence.

Please sign your real full name, physical address and email address if you choose to write,  or give this information to the staff member you speak to you choose to call on the telephone. Most offices will request it near the end of the call so that they have a record of callers and issues discussed. This is important so that Congressional staff members know that you are actually a constituent and potential voter in their district. Many legislators do not accept communications from those outside their own districts. They may also wish to respond to you, although it may take several attempts to attract attention or some time to receive a reply. Please contact only your member of the U.S. House of Representatives at this time. The President, Senators, Governors or other state or local officials do not have any control over this part of the legislative process.

You do not have to be an excellent writer or speaker, just one that your Representative and his or her staff will see as a real person with real issues and real needs, not a “canned” request copied and pasted from somebody else’s letter. Keep your message short– one page or less in writing, or a phone message or conversation of a couple minutes.

This is a major opportunity for the IBS community and its various websites, groups and organizations to come together, regardless of political or philosophical differences, make our needs known, and do something to make our lives better in the future. Self-advocacy to get legislation enacted takes time, effort and patience, but it is possible if more people are willing to make noise publicly, as other health and disability groups do.

For all those with IBS who complain that nobody understands and nobody wants to do anything for us, now is your chance to make yourself heard. Some people want to understand and help. Congress has the power to make this bill happen. Each of us has the power to make it happen by coming out of the closet, getting over the embarrassment and asking publicly and persistently for this very specific help. It only takes a few minutes to write an email or pick up the phone. Please do it.


U.S. Food and Drug Administration Issues Drug Safety Communication for IBS-D Medication Eluxadoline (Viberzi), March 2017

March 15, 2017

Today, March 15, 2017, IBS Impact learned via IFFGD social media that the U.S. Food and Drug Administration (FDA) issued a drug safety communication for eluxadoline (also known by the brand name Viberzi), currently used in treating irritable bowel syndrome with diarrhea in adults, 18 and older, both men and women. This warning applies specifically to people without a gallbladder, whom the FDA advises should not take eluxadoline (Viberzi). There is an apparent high risk of serious pancreatitis, which has resulted in many reported cases of hospitalization and two deaths.

According to the FDA warning notice issued today, as of February 2017, in the 21 months since eluxadoline’s FDA approval in May 2015, the FDA received 120 reports of serious pancreatitis or death. 76 of the 120 patients reported required hospitalization and 2 of them died. In 68 of the patients, it is known whether or not they had a gallbladder. 56 did not have a gallbladder, including the 2 individuals who died. 22 of the 120 cases of serious pancreatitis or death reported additional complications. As a result, the FDA is advising that those with IBS-D who do not have a gallbladder not be prescribed eluxadoline (Viberzi) at this time. For physicians, the drug safety communication includes several suggestions of alternative over-the-counter and prescription medications for IBS-D.

The FDA is working with the pharmaceutical company Allergan to address the safety concerns and urges patients and physicians to report any adverse events to the FDA.  There are no announced changes in safety concerns or recommendations regarding eluxadoline (Viberzi)  for those individuals who do have a gallbladder.

IBS Impact urges readers who have IBS-D and no gallbladder and are currently taking eluxadoline (Viberzi) to consult their physicians promptly. We advise anyone considering any specific IBS medication or treatment to read available evidence-based information, to familiarize themselves with the benefits and risks, and to consult their own doctors as if the given intervention is worth trying in their specific situations. IBS Impact focuses on awareness and advocacy and does not endorse particular interventions, but does encourage accurate and up to date information from reputable sources so that individuals with IBS and their families can make the most informed choices for their own needs and desires.


New Updates to IBS Impact.com Main Website for March 2017

March 8, 2017

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

A few links have been replaced with updated versions and several new ones have been added on the news footer, IBS page,  advocacy page, research page, resources page, IBS and children page, family and friends page, and links page. The United States, United Kingdom, Canada, Australia, and New Zealand are all represented in these most recent changes.

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 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 countries which are among the top sources of hits to the site and this blog, with occasional references to several others.

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 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.


Paying It Forward for Irritable Bowel Syndrome (IBS)

February 28, 2017

With various economic and political changes in some of the countries that frequent this blog and our main website, many citizens have started to wonder about the mid-range and long-term future for government and public support for their various interests and causes. This has included concern from some scientific researchers in various fields about their ability to continue their work. While the future remains to be seen, for many people from diverse parts of society, this has sparked increases in private giving to a wide variety of causes. This is a positive development and something IBS Impact hopes more people with IBS and family members will consider for our community the next time they think or say, “Why doesn’t anybody research better treatments… do more awareness… provide services … recognize this need or that need?”

Well, the answer is that some organizations and many researchers and other professionals in the functional GI disorders community indeed do many of those things and have been doing them for quite a while. That their consistent efforts and progress are not generally publicized as well as resources and breakthroughs for other common health conditions,  and these organizations and individuals are not household names all over the world. or even in their own countries, recognizable instantly to any IBS-affected family, let alone the general public, is definitely a problem. Recognition of the IBS community’s existing resources and accumulated medical evidence is something that other sites and groups, both grassroots IBSer-led like IBS Impact and others, and established professionals, have endeavored to address. Just as with IBS itself, advocacy, awareness, education and research are slow. They are unpredictable. They take effort, perseverance, some degree of luck, and more than a little courage when the going gets rough, and many other things.  The still-unmet needs that one could theoretically expand to meet appear endless. But one of the most practical needs for any of this to happen is money. Staff members need to be paid, offices and labs need to be kept open with utilities, phones, computer hardware, software, Internet service, websites, other equipment and supplies, printing and postage for print publications and brochures, travel and fees for conferences and other public speaking or advocacy opportunities, to name just some of the typical organizational or research expenses.

Irritable bowel syndrome is extremely common. It is found in almost all countries on every continent of the globe, in every age group from young children to senior adults, in all genders, ethnic groups, socioeconomic groups, religious or political affiliations or lack thereof. It is not talked about in public as much as many other conditions because for many people in our community, it is deeply embarrassing to discuss problems with related to how we excrete bodily waste.  Many people with IBS who do talk about it find that some people they interact with are uninterested or dismissive. While the occasional minor celebrity has come out in public as having IBS, none of them has sustained interest in publicly supporting the cause, and people who are not directly affected are not going to understand the challenges and take up the cause unless people who are affected– people with IBS and families– make their presence known and show that our cause is worthwhile. Standing around and waiting for hypothetical wealthy people to come along spontaneously, hand over inexhaustible sums for IBS, and bring millions of the general public to our side to fight our own battles is not realistic.

It is up to us, to the extent we are each financially able, to support our own needs and the organizations and research facilities in several countries that already exist to help us. This is true of any health community or other constituency, such as a university alumni association, at least in the way traditional fundraising works in the United States. Historically, support from people with IBS for our own cause has not happened much at all. It is understandable that severe IBS often brings with it greater expenses of various sources and perhaps unemployment or underemployment compared to pre-IBS productivity.  But eight years ago, when IBS Impact was still in the planning stages, one person with IBS stated that if every person estimated to have IBS  in the United States, the United Kingdom and Australia alone donated one of his or her local unit of currency (dollar or pound) per year, we would have over one billion of them.

Almost six years ago on July 22, 2011, very soon after starting this blog, we published a post entitled “Putting Our Money Where Our Mouths Are for IBS,” in which this issue was first discussed in detail, with comparisons to another related health community and explanations of the funding process in the United States. Three years after that, on August 25, 2014, then-current events prompted this blog to revisit and expand upon the topic. Some grassroots crowdfunding efforts like Facebook Causes and the IBSGroup.org donation fund are no longer in existence. But most established not-for-profit organizations and research centers do remain, and the general issues raised in the posts years ago are still the same and will remain that way for years to come.

IBS Impact itself is neither a business nor charity.  From inception, expenses of keeping the main website running and randomly- generated ads off this free blog have been donated by the IBS Impact founder and a succession of webmasters, all people with IBS of relatively modest means. This is a conscious decision in order to discourage miracle cure spammers and maintain our credibility within the IBS community. Philosophically, we do encourage IBSers to support financially the organizations or research centers of your choice. Many, in several countries from which we receive many hits, are linked on various pages of the IBS Impact main site, including the links and research pages. For those who really cannot give directly, there are several sites that direct corporate money from online merchants to charities of your choice at no extra cost, such as Good Search /GoodShop  and Amazon Smile in the U.S., iGive for U.S. and Canadian residents, and Everyclick for those in the U.K. Even small amounts can add up if there are many individuals with a consistent commitment to change.

IBS Impact challenges people with IBS and family members– if an IBS organization or medical professional associated with an research entity has ever been helpful to you, or even if you hope they may be able to in the future, think about giving back. Many of us have not have unalloyed positive experiences over the years, but keep the faith. If even one site, one group, one individual in the IBS community has given you hope, information, comfort, direction, remember this. Then find an IBS or GI organization or research center that speaks to your interest, hope, or memory, and consider literally paying it forward to whatever extent you can to improve the future for all of us.


Resources for People with Irritable Bowel Syndrome (IBS) in Australia 2017

February 16, 2017

It has come to the attention of IBS Impact that the Irritable Bowel Information and Support Association (IBIS), a national organization in Australia for many years, apparently ceased operations recently. As IBS Impact sites receive many visitors from Australia each year, some have wondered about other good quality, accessible, evidence based-resources for IBS information, support and research, both within Australia and internationally. Below are several suggestions. This is not meant to be an exhaustive listing, but a place to start.

As many people in the IBS community for some time are aware, the low-FODMAP diet for IBS was developed by Monash University researchers almost two decades ago, and in the past several years, has increasingly caught on internationally as an effective symptom management option for many people with IBS. At this time, it is the only IBS diet with significant academic research evidence for helping 70% or more of those who try it to reduce their symptoms. There are now many low-FODMAP resources and low-FODMAP- trained professionals in various countries available, but their information is derived from Monash, or other sources who derive from Monash, whose department of gastroenterology continues ongoing research and refinement of the diet and related resources.

Monash maintains a blog and active social media, and regularly updates an international app, downloadable for  a modest cost, to assist users of the diet in identifying levels of various FODMAP components in listed foods, as well as acceptable serving sizes. It is IBS Impact’s understanding that the money goes back to funding further FODMAP research.  In Australia and New Zealand, a Monash low-FODMAP certification process is available for some packaged food products. On an ongoing basis, the gastroenterology department recruits local people with IBS to volunteer for clinical trials, and in the past, it has suggested the following online directory from the Dietitians Association of Australia to find an Accredited Practising Dietitian experienced in gastrointestinal disorders or other specific medical concerns. Monash’s information and resources on IBS and the low-FODMAP diet are extensive and state of the science.

Another up-to-date, scientifically reputable IBS site within Australia, IBSClinic.org.au,is supported by the Swinburne University of Technology, Royal Melbourne Hospital and St. Vincent’s Hospital, Melbourne and maintained by Dr. Simon Knowles, Clinical Psychologist and Senior Lecturer at Swinburne, with listed contributions from or references to many IBS professionals associated with the above entities or other leading IBS research centers in Australia and elsewhere. The site includes information on causes, medical examinations, treatments, psychological symptoms, general advice for affected adults, affected teens and family members without IBS, a range of IBS-specific and general links within and outside of Australia (IBS Impact thanks the site for an unsolicited link to our main website!), and finally, a password-protected set of free, downloadable validated programs combining mindfulness and cognitive behavioral therapy techniques. Psychological interventions also have well-established international evidence for helping reduce the symptoms, often long-term, of the majority of people with IBS who try them.

The University of Newcastle, Macquarie University, University of Sydney, and the University of Adelaide are other Australian universities known to be active in some aspects of IBS research, either currently or in the recent past.

IBS Impact is not aware at this time of Australia-specific support group options, but many of the online support resources listed on the links page of our main website are international. In its closure notice on its web page, IBIS-Australia suggests IBS Support  on Facebook, a closed, international, evidence-based group of over 25,000 members at this writing. Founded several years ago by a medical student with IBS, it is currently moderated by a team of 9 volunteer administrators from 4 different countries, all of whom have been adults with IBS for many years. In addition, several have educational and/or professional background in science or health care fields and/or education, while others have gained extensive knowledge from reputable sources and contacts over time. Two group administrators, including the IBS Impact founder, initiated and maintain established international, evidence-based IBS sites. The group encourages sharing of experiences and emotional support within group guidelines. Group administrators participate actively to educate members on the science of IBS and proven treatments to the best of current international research on IBS, discourage myths, misconceptions, quack cure scams, and as much as possible, maintain a safe and respectful atmosphere for participants from around the globe, including a substantial Australian contingent.  Thank you to IBIS-Australia for linking the group, unbenown to any group administrator until this week.

If any Australian readers would like to offer other in-country resources for IBS Impact’s consideration in future updates of our sites and social media, please comment here on the blog or contact us through the main IBS Impact website. We hope this information is useful.


Results and Followup to Gastrointestinal Society, Canada 2016 Survey on Irritable Bowel Syndrome (IBS)

January 29, 2017

About one year ago, on January 26, 2016, IBS Impact posted a national online survey invitation by the Gastrointestinal (GI) Society, also known as the Canadian Society of Intestinal Research. The GI Society asked adults with diagnosed irritable bowel syndrome and parents/caregivers of children with diagnosed irritable bowel syndrome from across Canada about experiences, opinions and effects of IBS, with the intention of using the results to shape the organization’s programs, as well as future community awareness and advocacy among health care providers and policy makers and the general public.

Last month, the GI Society posted a report, Gastrointestinal Society 2016 Survey Results: Irritable Bowel Syndrome (IBS), which is available for download in PDF format from the link. Some highlights include the following:

There were a total of 2961 responses from all provinces and territories of Canada, approximately proportional to population. 2505 participants responded in English and 456 in French from the organization’s French-language mirror site. 86% of respondents were female, 14% male. 90% were between the ages of 30-69.

53% had had IBS for more than 10 years. 41% reported IBS-M (mixed subtype, formerly referred to as IBS-A for alternating), 35% IBS-D (diarrhea-predominant subtype), 18% IBS-C (constipation-predominant subtype) and 6% unsure. In a question rating pain in the previous 3 months on a 1-5 scale with 1 as no pain, and 5 as the worst pain, 4% chose 1, 20% chose 2, 39% chose 3, 28% chose 4 and 9% chose 5. Respondents were also asked to rate other common IBS symptom severity as never experience, mild, moderate, and severe.

According to the report, fewer than half of respondents have seen a gastroenterologist. Those who have consulted doctors for IBS mostly see general practitioners. 26% reported not seeing a doctor for IBS at least once a year. Of the remainder, the largest subgroups reported 1-2 visits or 3-5 visits. Small percentages in the single digits each reported 6-10 visits or 11 or more visits. 12% stated they had been hospitalized for IBS. 62% use two or more medications or treatments regularly. 16% stated they cannot afford prescribed treatments and 26% that they can only afford some. Medications commonly used for IBS pain are sufficiently effective for only about one-third. Only 21% of survey participants describe their symptoms as under control, 45% somewhat under control, 34% no symptoms under control. The report notes that these results are similar to a 2015 nationwide survey by the American Gastroenterological Association in the United States, IBS in America.

Most of the GI Society’s respondents also indicate co-existing medical conditions and/or quality of life effects. 83% report the need to limit their diet. 71% report anxiety at least some of the time with 27%  reporting an anxiety disorder diagnosis. 32% have a mood disorder, 27% gastroesophageal reflux disease (GERD), 24% sleep disorders, 15% fibromyalgia. 76% state that IBS interferes with everyday activities at least some of the time. 37% overall state that in an average month they cannot leave their homes at least some of the time, with higher percentages in the IBS-D subset.  46% of respondents who are employed and/or are students report that they miss time from work or school in an average month due to IBS.

The report concludes that there continue to be unmet treatment and quality of life needs for many Canadians with IBS and that in particular, IBS pain needs improved treatment options, as that remains a significant symptom for most people with IBS that is significantly associated with decreased quality of life. The report also states that the time between symptom onset and diagnosis and diagnosis and relief of symptoms needs to be shortened. This may be possible through increased collaboration between patients and physicians.

The GI Society is asking those who responded in the original survey to participate in a five question online followup survey. The original survey is now completed and no longer available for new replies, but the GI Society also invites those who did not have the opportunity to complete the original survey to answer the followup. At this time, January 29, 2017, the followup questions are open at the original survey link. No closing date for responses is indicated. Please address any questions about this survey directly to the GI Society

http://www.badgut.org/ibs-survey/

IBS Impact commends the Gastrointestinal Society for its efforts to gather and publicize the views of its constituency. We encourage  Canadian readers with IBS or IBS-affected minor children to continue to express and advocate for their needs and desires to the organization and their health care and community services providers and national, provincial and local policy makers through the followup survey and other means. We hope that the survey results amplify and catalyze positive changes for the IBS community in Canada, and by extension, worldwide.