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.


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.


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.

 


Veterans with IBS and Functional Gastrointestinal Disorders 2016

November 11, 2016

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

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

IFFGD has done considerable work in the past several years in advocating for federal funding and other legislative needs specific to veterans, conducting outreach to service members and veterans and encouraging those affected by functional GI and motility disorders to participate in veteran-specific self-advocacy efforts. Since fiscal year 2012, functional GI disorders have been included in the Department of Defense Gulf War Illness Research Program, which is part of the Congressionally Directed Medical Research Program. However, advocacy from the veteran community and supporters must occur on an ongoing basis for funding to be continued each fiscal year. Interest in veteran issues has been one reason for Congressional support of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015, HR 2311, currently in the House of Representatives, aimed toward improving the lives of affected veterans and civilians alike, and must continue to build.

As this blog reported on January 20, 2014, the depth of need for further awareness, services, support, and research in the veteran community is not necessarily well known even within the Department of Defense or other military entities, the media or the general public. The post linked in the second paragraph of this post about the recognition of IBS and other functional GI disorders as presumptive service-connected disabilities, more than five years after original publication, has continued to receive consistent hits from readers nearly every day. By an extremely wide margin, from the inception of this blog in mid-2011 through 2015, it was the #1 most read individual post, of over 200 cumulative posts on this blog. It was also the #1 most read post for each individual year.  Not until the release of the Rome IV international diagnostic criteria in late May of this year, did it drop to #2 on the all-time and 2016-to-date lists.Clearly, a very strong need exists for information and resources on this topic. It is hoped that given the relatively higher impact of functional GI disorders among veterans and service members, and their relatively higher profile as a constituent group, any advances on behalf of the affected veterans and service members will eventually carry over to people with functional GI disorders in general.

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


Representatives Engel of New York and Pocan and Kind of Wisconsin Co-Sponsor HR 2311 for Functional Gastrointestinal and Motility Disorders

July 11, 2016

According to IFFGD/the Digestive Health Alliance and the official Congressional legislative database Congress.gov, Representative Eliot Engel (D-NY-16), Representative Mark Pocan (D-WI-2), and Ron Kind (D-WI-3) have recently signed on as a co-sponsors to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015.

Representative Engel is serving his fifteenth term in the House of Representatives. His current district, the 16th Congressional District of New York  encompasses the northern portion of the Bronx, which is one of the boroughs of New York City, as well as parts of suburban southern Westchester County. Representative Engel is the first co-sponsor who is also a current member of the Subcommittee on Health, where HR 2311 is  under consideration.  See the linked website for a list of all current members. Representative Engel has a long record of supporting  a wide range of veterans’ issues and health issues, as seen on his official house website. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk for functional gastrointestinal disorders like IBS, which are already very common in the general population.

Representative Pocan is serving his second 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 Committee on the Budget, and he supports various health and veterans’ issues.

Representative Kind is serving his tenth term as a member of the House of Representatives. His district, the 3rd Congressional District of Wisconsin, represents the western part of the state, including La Crosse, Eau Claire and Platteville. Representative Kind’s official House website can be found at the link. Representative Kind has a record of supporting veterans’ issues. He is also a former member of the Subcommittee on Health and was also a co-sponsor of HR 2239 in the 112th Congress (2011-2012) and HR 842 in the 113th Congress (2013-2014), previous versions of HR 2311 which did not pass. IBS Impact thanks him for his continuing  support over three successive Congressional terms.

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

In officially supporting HR 2311, Representative Engel, Representative Pocan and Representative Kind  join Representative F. James Sensenbrenner, Jr. (R-WI-5) , who is the initial sponsor,  Representative Andre Carson (D-IN-7), Representative Zoe Lofgren (D-CA-19) and Representative Gwen Moore (D-WI-4), Representative David Young (R-IA-3), Representative David Loebsack (D-IA-2), Representative Keith Rothfus (R-PA-12), and Representative David Joyce (R-OH-14), and Representative Sean Duffy, (R-WI-7) If you are a constituent of any of these Representatives, please thank them as well.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 2311, please see the previous post from May 18, 2015 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 2014 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 2311 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 2311.

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 2311 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 114th,  the necessary number of sponsor/cosponsors must be reached by December 2016. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 2311 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 and HR 842 in 2014. 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 2311 as they occur. Links to the social media sites can be found on the right sidebar of the blog.