Evidence-Based Guidelines and Resources for Irritable Bowel Syndrome (IBS)

April 27, 2012

A large part of being credible and effective self-advocates as people with IBS and family members is being well-informed ourselves as to what IBS is and is not and what reputable scientific research currently says about treatment options and other topics related to IBS. Functional gastrointestinal disorders like IBS, as well as many non-GI symptoms or disorders that commonly overlap with IBS, are generally not as well understood and often not as effectively treated as conditions with less complex and more obvious abnormalities. People with IBS, including many involved in IBS Impact, have had the experience of finding numerous conventional and complementary interventions to provide inadequate relief and, for months or years at a time, may be left largely to find our own way, because every person with IBS has a different experience, and even the most knowledgeable and well-meaning professionals do not have quick or easy answers. We understand on a very personal level the desperation that moderate or severe IBS can prompt during the worst phases to find anything or anyone that might help. This impulse toward self-advocacy and self-preservation can be a positive thing, but can also have negative consequences if not approached in an informed way.

Those who become active in the IBS community eventually become aware that as far as IBS is concerned, almost everybody has an opinion, whether it’s our peers with IBS, professionals in the field, books, articles, websites or support forums, our family and friends or colleagues, and the general public– and many of these opinions and experiences conflict with each other. How do we separate potentially useful information and resources from the myths, misconceptions, outdated data, or outright quacks selling supposed miracle cures? The science of IBS has a long way to go, but it has advanced quite a bit in the past couple of decades. Physicians and other health care providers who received the majority of their training some time ago, or people with IBS who have lived with the symptoms for many years simply may not be aware of newer developments. For example, as noted in this blog’s October 9, 2011 post, recent research at UCLA shows that large percentages of health care providers in local communities are not aware that international functional GI experts  no longer consider IBS a diagnosis of exclusion that requires numerous tests of every person with apparent IBS symptoms. That’s why education and awareness of all involved parties: people with IBS, our loved ones, health care providers and the general public are all important.

For IBS Awareness Month, two organizations have been highlighting online tools they offer that may be of use to people with IBS and those who support us. The IBS Network in the United Kingdom has newly launched an online, interactive self care plan that can be used by IBS Network members to track symptoms, learn about treatments through audio, video, case histories and exercises, and design a individual plan for self-management.  The American College of Gastroenterology has also called attention to its online IBS treatment matrix, first made available in 2009, that discusses commonly used treatment interventions that the user indicates. It also mentions other possible options for one to discuss with one’s own physician.

The matrix is based on a comprehensive, evidence-based review by the ACG in 2009 of common conventional and complementary treatments, and the strength or weakness of current scientific evidence for their effectiveness. The full, published report is linked above. For blog readers from the U.K, the British Society of Gastroenterology issued guidelines for IBS management in 2007 and the National Health Service’s National Institute for Health and Clinical Excellence released its own in 2008. The Gastroenterological Society of Australia professional guidelines on IBS, as last revised in 2006, are linked here.  To IBS Impact’s knowledge, there is no similar, publicly available, comprehensive official statement by the Canadian Association of Gastroenterology in regard to IBS. However,  its associated Canadian Digestive Health Foundation discusses the diagnosis and treatment process on this page. The New Zealand Society of Gastroenterology and the Irish Society of Gastroenterology, unfortunately, do not appear to have professional guidelines or consensus reports on IBS at this time.

IBS Impact is a grassroots group focused on awareness and advocacy and encouraging informed decisions by people with IBS and their family members. Please consult qualified health care professionals for advice on individual medical treatment concerns.  Many more original articles and links to reputable sources of information on IBS can be found on the IBS Impact main website.


Representatives Perlmutter of Colorado and Price of North Carolina Co-Sponsor HR 2239 for Functional Gastrointestinal and Motility Disorders

April 20, 2012

UPDATE: HR 2239 did not pass in the 112th Congress. In February 2013, the Act was reintroduced in the 113th Congress as HR 842. Please see the March 2, 2013 post or click on the HR 842 category on the blog sidebar for updated information.

According to THOMAS, the Library of Congress legislative database, and IFFGD, Representative Ed Perlmutter (D-CO-7) and Representative David Price (D-NC-4) have signed on as co-sponsors to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011.

Representative Perlmutter’s district, the 7th Congressional District of Colorado,  encompasses parts of Jefferson, Adams and Arapahoe Counties in the central part of Colorado, including many northern and western suburbs of Denver.

Representative  Price’s district, the 4th Congressional District of North Carolina covers the Triangle region, including Durham County, Orange County and parts of Wake and Chatham Counties.

If you are a constituent of Representative Perlmutter or Representative Price, please take a few minutes to write or call him with your thanks for his support of HR 2239.

In officially supporting HR 2239, Representative Perlmutter and Representative Price  join the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8), Representative Peter Welch (D-VT), Representative Elton Gallegly (R-CA-24), and Representative Jesse Jackson, Jr. (D-IL-2), Representative Tammy Baldwin, (D-WI-2), Representative Maurice Hinchey (D-NY-22), Representative Nan Hayworth (R-NY-19) and Representative Gwen Moore (D-WI-4)

According to the information on THOMAS, it appears that the bill is currently under consideration in the Subcommittee on Health. If you would like to see a list of the members of that Subcommittee, click here and scroll down to the fourth subcommittee listing.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 2239 and you have not contacted him or her recently to ask for his or her support,  please see these previous post from July 6, 2011 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.

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 2239 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 2239.

It is IBS Impact’s understanding that HR 2239 will most likely not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 219 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 112th,  the necessary number of sponsor/cosponsors must be reached by December 2012. Beginning in January 2013, the Congressional membership will be different as a result of the upcoming 2012 elections. Thus, a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering cosponsors anew. 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 Yahoo discussion group for further updates on HR 2239 as they occur.


ACTION ALERT: U.S. Citizens, Advocate for Fiscal Year 2013 National Institutes of Health Budget

April 18, 2012

The following is an excerpt of an action alert that was received recently from IFFGD/the Digestive Health Alliance:

Greetings!

We want to let you know about a threat to medical research, and how you can help stop it.  

 Under the Budget Control Act of 2011, the National Institutes of Health (NIH), the nation’s biomedical research agency, faces an automatic 7.8% or $2.5 billion cut in their fiscal 2013 budget.  This will go into effect unless an alternative plan becomes law later this year to meet deficit reduction targets.

 According to NIH Director Francis S. Collins, MD, PhD, the cut would mean NIH would be able to fund 2,300 fewer grants in fiscal year 2013.  Over the past nine years, with nearly flat budgets, NIH has lost purchasing power for medical research due to inflation. Only 1 out of 7 grant requests now get supported, the lowest ratio in NIH history.

 The NIH is the largest source of funding for medical research in the world. NIH support goes to scientists in universities and research institutions in every state and around the globe. Research findings are the basis for medical treatments and the search for cures. Continued research is critical to our community affected by digestive health conditions.

 IFFGD and our grassroots arm, the Digestive Health Alliance (DHA), have joined the public health community in advocating that Congress provide NIH with at least $32 billion in fiscal year 2013. The current fiscal year 2012 NIH budget is $30.7 billion. Funding of at least $32 billion would allow NIH to implement critical new research initiatives.

 Please help by contacting your Congressional representatives in the U.S. House and Senate. Ask them to support an increase in NIH funding to a level of at least $32 billion for Fiscal Year 2013.

  • Go online to our Legislative Action Center
     
  • Click on NIH 2013 Budget Action to send an email on this issue to your representatives.

 Be an advocate for digestive health. Thank you!

IBS Impact encourages members and readers who are U.S. citizens, to participate in this advocacy effort. The above link on the IFFGD site leads to Capwiz, a software program in which you may type your zipcode to look up and easily contact your federal legislators. If you live in a zipcode that falls in more than one  district, you will be prompted for the exact street address. Please use your real name and contact information. As many legislators only accept communications from their own constituents, it is important for Congressional staff members receiving your message to know that you are a resident and potential voter in that district and a real person with real needs. They also may wish to reply to you, although it is unpredictable when or if one will receive a response. The Capwiz program is reputable software used for legislative advocacy by numerous organizations and groups. It and IFFGD will protect your privacy and you do not need to be an IFFGD member to use the site. However, if, for any reason, you do not wish to use Capwiz itself, you can contact your legislators directly by email through their official websites, phone, postal mail or fax by using the contact information provided by Capwiz.

Also note the prominent action alert on the same page for HR 2239, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, currently pending in the U.S. House of Representatives.  If you have not contacted your Representative recently, please also consider asking for his or her co-sponsorship or thanking him or her for supporting the bill if he or she is already a current sponsor or cosponsor. The most recent details on the progress of this bill are in the March 9, 2012 post. Background information is in the July 6, 2011 post

IBS Impact members and readers who are not U.S. citizens, although you cannot participate directly in advocating for these issues, the swift passage of HR 2239 and increases in the NIH budget will also affect you indirectly. As IFFGD notes in the action alert quoted above, National Institutes of Health grants fund researchers all over the world. Also, in the research community, there is often multinational collaboration, and scientists from outside the U.S. often train or work in the U.S. for a period of time and bring new insights back to their own countries. Different entities within NIH also support and host multinational resources such as the clinical trial database ClinicalTrials.gov and medical journal databases Medline Plus and PubMed that make a wealth of medical research information available to professionals and the public worldwide. Support for progress in U.S. legislation, funding and research will have ripple effects abroad, just as U.S. citizens with IBS benefit from the work of scientists in many other countries. If you have U.S. citizen friends or relatives who have been supportive about your IBS  and/or who may have another personal interest in functional GI disorders, please consider asking them to support these advocacy efforts as well. IBS Impact encourages people with IBS in many countries to alert us to concerns, resources and possible advocacy opportunities in those nations so that we can support and encourage advocacy and awareness efforts worldwide.

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For Children With IBS and Their Parents

April 11, 2012

April is IBS Awareness Month. Much of the attention in the IBS community at this time of year, as well as year-round, is focused on adults with IBS, but some readers may not be aware that children and adolescents can get IBS too. According to IFFGD Fact Sheet #846 , Irritable Bowel Syndrome (IBS) in Children, one source estimates that 14% of all high school students and 6% of middle school students show symptoms of IBS. (The overall prevalence of IBS in all ages is widely quoted as 10-20% depending on the source, and anywhere from 9-23% in different countries worldwide.) The international diagnostic criteria, Rome III, for pediatric IBS specifies ages 4-18. While in adults, IBS is statistically more common in women than men, IBS affects boys and girls equally. Children and teens who are known to or may have IBS and their parents are an important subset of our community who also deserve mention.

Our friend Magda at the parenting blog Ask Moxie has generously given space on her site today to a guest post on IBS in children written by the IBS Impact founder, Nina, with input from our webmaster Shawn. Shawn also tells part of his own experience developing and coping with IBS as a child many years ago. If you have not done so already, please read the post and feel free to comment and/or to explore the rest of the Ask Moxie site for other general parenting topics and discussion.

If you’re a parent or guardian who is reading this blog for the first time as a result of the guest post on Ask Moxie, or one who has found IBS Impact recently through other means, welcome and thank you for visiting. We hope you will find this blog, our main website or our advocacy and awareness-focused Yahoo group interesting and useful. We have many original articles and links to reputable resources in several countries and, as a grassroots site, are always open to your suggestions and submissions.

In particular, we’d like to highlight our brand new page of links specific to children with IBS that has just been added this month. Our family and friends page has articles and resources for loved ones of people with IBS of all ages. Most resources on our site and on sites that we link are applicable to both adults and children with IBS.


10 Things We Can Do For IBS Awareness This Month and Every Month

April 1, 2012

UPDATE: 4/1/2014: This post, originally written in April 2012, is traditionally revised and updated every April to reflect current information, resources and links. Click on April 1, 2014 to see the most recent version.

 

April is Irritable Bowel Syndrome Awareness Month. Unlike awareness weeks and months for 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. Here are just 10 possible ideas 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.

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.

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 a free downloadable awareness poster, infograph 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. Leave these things 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. 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. For a past discussion of the media and IBS, see the November 6, 2011  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 many of the resources we link do as well. Another way to interact directly with IBS researchers is to come to the monthly online chats with the University of North Carolina Center for Functional GI and Motility Disorders. See the clinical trials or UNC chat categories on the top right of the blog sidebar for past posts on these topics.

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 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 designate. 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. IBS Impact is a place to talk about these things and get guidance from those of us who are more experienced in one area or another.

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.

There are many more than 10 possible ways to advance the cause of IBS awareness worldwide. As the title of this post suggests, 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.