Putting Our Money Where Our Mouths Are for Irritable Bowel Syndrome (IBS)– Revisited

August 25, 2014

The other day, in the wake of a highly publicized campaign that is successfully raising a great deal of money for a particular health cause, a person with IBS said to the IBS Impact founder, “It would be nice if someone would do that for IBS.”

Well, yes, in a way, but no. There are debates in that community and the disability community at large as to if fundraising of this sort actually leads to substantively greater awareness of the medical condition in question, how much of the amount raised actually results in services and research directly benefiting the affected community rather than overhead, and if “fun” stunts actually undercut the dignity of those with the condition and trivialize their needs. There are other concerns as well, but the irritable bowel syndrome community isn’t anywhere near having high profile celebrity benefactors and viral Internet sensations and being in the position to have such discussions and differences of opinion.

Irritable bowel syndrome is very common. 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 and use the bathroom. 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 some hypothetical wealthy person to come along spontaneously, and hand over a large sum of money for IBS 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 five 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.

Over three 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. As this was a brand new blog at the time, the post got relatively little publicity, but given the recent conversation that prompted this current post, it seems like a good time to resurrect and revisit it. The grassroots Facebook Causes and the IBS Self Help and Support Group’s dedicated donation fund are all no longer in existence. But established not-for-profit organizations and research centers do remain, and the general issues raised in the post three years ago are still the same.

IBS Impact itself is neither a business nor charity. The expenses of keeping the main website running and ads off this free blog are donated by the IBS Impact founder and webmaster, both of whom are people with IBS of relatively modest means. This is a conscious decision in order to discourage miracle cure spammers and establish our credibility within the IBS community. Philosophically, we do encourage IBSers to support financially the organizations or research centers of your choice. Many, in 4 countries, 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 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.


Online Study for People with IBS and Their Partners, Mind-Body Digestive Center, August 2014

August 18, 2014

The Mind-Body Digestive Center in New York City, an IBS-specific treatment center founded by Charles Gerson, MD and Mary-Joan Gerson, PhD, is conducting a new online research study of people with irritable bowel syndrome and their partners (spouses or significant others). The research will focus on if agreement or disagreement on causes of IBS beliefs about illness and harmony in the relationship affect IBS symptoms. People with IBS will complete 5 questionnaires and partners will complete 3 different questionnaires online through a secure website.

If you and your partner are both interested in participating, you are asked to separately email mindbodydigest@gmail.com. Please state both of your names and clearly indicate which one of you is the person with IBS and which one is the partner. After you receive the appropriate links and instructions, no identifying information will be stored.

This listing is summarized from a recent announcement on the IFFGD website. Any questions or concerns about the study should be communicated directly to the Mind-Body Digestive Center.

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While IBS Impact attempts to highlight a diversity of available opportunities, this is not intended as an exhaustive resource. Previous posts on open clinical trials for IBS can be found by clicking the clinical trials category in the blog archives on the upper right sidebar of this blog. We also have a page for IBS studies on the main IBS Impact site. Because studies stop accepting new volunteers or are completed over time, please check the post date on this blog, or the last update date on studies page, to verify that the study you are interested in is relatively recent rather than from a few years ago. Depending on how you accessed this blog, the post date will appear either at the top or at the bottom of the post, and is occasionally included in the post title. On the studies page on the main site, the date of the last update is at both the top and the bottom of the page. The research and links pages and the July 26, 2011 post provide additional general resources.

We welcome researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies they wish to be considered for posting or if an existing listing needs to be updated. Contact links for the founder/listowner and the webmaster can be found on the home page of the main IBS Impact website.

IBS Impact makes these study announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation in any study. IBS Impact, as an entity, is not directly affiliated with any research sponsor and receives no funding from any source for studies or links we feature on this blog, the main site or social media.


American College of Gastroenterology Issues 2014 Evidence-Based Review on Irritable Bowel Syndrome (IBS) Management

August 10, 2014

This past week, on August 5, the American College of Gastroenterology Task Force on Functional Bowel Disorders, publicly released the 2014 ACG evidence-based systematic review on the management of irritable bowel syndrome (IBS) and chronic idiopathic constipation (CIC), also known as functional constipation. The last such review was in 2009. The updated review was issued as a monograph supplement to the August 2014 issue of The American Journal of Gastroenterology. The full 25 page text in PDF format is accessible at the above link.

The task force included eight leading expert clinicians and researchers of functional gastrointestinal disorders from various academic research centers in the United States and Canada. The chair was Eamonn Quigley, MD, FRCP, FACG of Houston, Methodist Hospital and Weill Cornell Medical College. Other members were Brian Lacy, MD, PhD, FACG, of Dartmouth Hitchcock Medical Center, Anthony Lembo, MD of Harvard Medical School and Beth Israel Deaconess Medical Center, Paul Moayyedi, BSc, MB, ChB, PhD, MPH, FRCP (London), FRCPC, FACG of McMaster University Medical Centre, Yuri Saito, MD, MPH of the Mayo Clinic, Rochester, Lawrence Schiller, MD, FACG of Baylor University Medical Center, Edy Soffer, MD, FACG of the Keck School of Medicine, University of Southern California, and Brennan Spiegel, MD, MSHS of the UCLA School of Medicine. According to a press release sent directly to IBS Impact by the ACG media contact, “Dr. Moayeddi conducted the systematic reviews with support from Alexander C. Ford, MD, ChB, MD [sic], FRCP, and carried out the technical analyses of the data independent of the Task Force.” (page 2)

The task force sought to systematically examine and evaluate available research literature on a wide variety of conventional and complementary treatment interventions, both existing and relatively new, that are commonly used for IBS. These included but were not restricted to diet, probiotics, the non-absorbable antibiotic rifaximin (brand name Xifaxan), antidepressants, antispasmodics, peppermint oil, bulking agents and laxatives, including loperamide (Immodium), the 5-HT3 receptor antagonist alosetron (Lotronex for severe IBS-D, available under FDA-restricted distribution only because of past serious safety concerns), the 5-HT4 serotonin receptor agonist tegaserod (Zelnorm for IBS-C, no longer available in the United States because of past serious safety concerns), the chloride channel activator lubiprostone (Amitiza), psychological therapies such as hypnotherapy and biofeedback, herbal preparations, and acupuncture. The task force used preset criteria in selecting reliable studies to review and used meta-analyses when appropriate. The quality of evidence for the effectiveness of each type of treatment was graded, again using standard scales. The full report also notes instances of possible bias or other study limitations. The task force’s revised recommendations are based on the quality of evidence and other considerations like risks and costs and possible patient preferences.

Some of the notable conclusions of the task force follow:

Elimination diets may be helpful to some people with IBS, but the overall reliability of available evidence is “very low,”(page 56 of monograph, page 5 of PDF). The low-FODMAP approach specifically is considered to “show promise” but in need of more research to determine more precisely how or why it may work. (page 58 of monograph, page 7 of PDF.)  For those with IBS whom increasing fiber intake helps, the evidence is stronger for psyllium (soluble fiber) than for bran (insoluble fiber).  Probiotics can moderately improve global symptoms, bloating and flatulence in IBS for some people, but relatively few strains have been specifically studied for IBS, and it is not possible at this time to target specific individuals they may help or specific strains to recommend. Prebiotics and synbiotics do not have sufficient evidence of effectiveness.  Rifaximin has moderate evidence of effectiveness for diarrhea-predominant IBS, but the task force expresses concern about potential long-term antibiotic resistance, uncertainty about long-term effectiveness, and the relatively high expense of this treatment to patients. Linaclotide (Linzess in the United States; Constella in Europe) and lubriprostone (Amitiza) garner strong recommendations from the task force for use in constipation-predominant IBS. This is particularly of interest, since the vast majority of treatment types reviewed, even many long considered to be traditional, established approaches to IBS, have received “weak” recommendation (page 56 of monograph, page 5 of PDF). Also, the review concludes that there is increased evidence than in previous years to support antidepressants and psychological therapies as effective for IBS, however, the report notes that antidepressants tend to have various side effects that some people with IBS may not be willing or able to tolerate, and the dearth of mental health professionals knowledgeable about and experienced in psychological therapies for IBS is a barrier to widespread use of psychological treatments.

The task force emphasizes that although IBS research is quickly increasing and evolving, the vast majority of available treatments continue to be aimed at an individual’s predominant Rome criteria symptom, not on the global symptoms of IBS as a whole, and only a small subset of people with IBS tend to be helped by any given intervention. It is important to work with one’s personal physician and other health care providers to determine the appropriate management options for one’s own situation and preferences.

IBS Impact appreciates the work of the task force and ACG’s willingness to make this review readily available to the functional GI community, professionals and affected individuals alike. Although ACG’s recommendations for IBS management are not drastically changed from five years ago when the last review was published, it is clear that the field is moving incrementally forward. Periodic peer review is important to the scientific process and future advances, and the availability of this document provides a comprehensive summary and guidance to professionals providing health care to people with IBS and to interested people with IBS in the most current standards of care for IBS in the United States. When so many people with IBS, families and professionals continue to receive outdated or inaccurate information about basic aspects of IBS, an evidence-based document is an important tool in education and management of IBS.


Gut Week 2014 in the United Kingdom and Ireland is August 11-17, 2014

August 3, 2014

Next week is National Gut Week in the U.K. and neighboring Ireland, and a good time to update readers in those countries on some of the available resources for irritable bowel syndrome and other gastrointestinal conditions in that region of the world.

The official site for Gut Week, sponsored by various charities, organizations and companies relevant to a range of digestive health conditions provides some general information on the website and links to other gastrointestinal resources It also offers information packets, including some articles from leading professionals in the U.K. and Ireland, available in hard copy by request or by download to people who provide contact information from within the U.K. or Ireland. There are also recipes and contests on the site in which to participate during the stated week.

One sponsor of Gut Week is The IBS Network, formerly The Gut Trust, in Sheffield and is the national charity for irritable bowel syndrome in the U.K. For a modest annual fee, members get access to a telephone helpline, support groups, a magazine and other written information, news about advocacy, such as the work of Truckers’ Toilets, U.K., which advocates for clean and plentiful facilities for long distance professional drivers, but whose work will ultimately benefit everyone. The IBS Network frequently posts U.K based research studies seeking volunteers,  an online self-care tool, and a “Can’t Wait” card meant to assist people with IBS in quickly communicating to others the need for access to a public toilet. The IBS Network also has an online community available to members.

As noted previously on this blog, some people with IBS in the U.K. have found RADAR keys, meant to unlock disability-accessible public toilets, useful. They are so named for the Royal Association for Disability Rights, which has now merged with other organizations to form Disability U.K., located in London.  In addition to selling RADAR keys and guides and smartphone apps of locations where they can be used, Disability U.K. provides a wide range of information and resources for people with all types of disabilities and medical conditions, including general advice on legal protections, benefits and other disability advocacy within the U.K. Many of these apply to IBS.

It is IBS Impact’s understanding that experiences with people with IBS receiving disability benefits within the U.K. or Ireland vary greatly. Some people are able to successfully obtain them, but others not. The following government websites have useful information on benefits and other disability-related topics: Gov.uk disability information in the U.K. and Citizens Information Board disability information in Ireland.

For evidence-based guidelines on treatment of IBS, see the British Society of Gastroenterology (2007), the National Institute for Health and Clinical Excellence (2008)  and the British Dietetic Association (2012). The South Manchester Functional Bowel Service, headed by Peter Whorwell, MD also has a website of information on IBS, gut-directed hypnotherapy, on which Dr. Whorwell is an international authority and pioneer, and the research studies and clinical care offered at his service.

Michael Mahoney, clinical hypnotherapist in Cheshire, has different, home-based CD/MP3  hypnotherapy protocols from Dr. Whorwell’s, which many adults and children with IBS or functional abdominal pain (also known as recurrent abdominal pain)  in various countries have found helpful, as well as an audio CD designed to explain IBS to family and friends. An article by Mike can be found on the family and friends page of the IBS Impact main site. A link to details on his IBS Audio 100 program for adults can be found on the links page, and a link to details on the IBS Audio 60 program for children on the children’s page.

Also on IBS Impact’s family and friends page is an an article by Sophie Lee, an adult with IBS in the U.K. who has had IBS since childhood. Sophie offered this excerpt from her published memoir to IBS Impact in the hope of increasing awareness of IBS. Some readers may be aware that she also owns IBS Tales, a website and support forum for people with IBS to share their successes and disappointments. It draws readers internationally, but as a site originating in the U.K., has more of a U.K. focus. Please be aware that because the site is composed of personal experiences with conventional, complementary and self-help treatment approaches contributed by many people, certain information may or may not be scientifically accurate, and in any case, individual experiences will vary. IBS Impact strongly encourages positive peer support and sharing of reputable information and personal experiences by people with IBS, but does not focus on treatment advice. We urge readers to also consult the evidence-based resources given in this post and ,the individual advice of their own health care providers so that they can make the fully informed choices best for their own situations.

A newer online forum is at the Talk HealthPartnership, sponsored by NHS Choices, as discussed on this blog on July 7, 2013.

Julie Thompson, a registered dietician who works in the National Health Service and is an advisor to the IBS Network, has a blog, Clinical Alimentary, that addresses digestive health and nutrition and the scientific evidence behind various topics of interest. For a thoughtful blog with many U.K. based links concerning children with chronic pain, see Abominable Abdominal, written by a parent of a pre-teen daughter with functional abdominal pain and coeliac disease. As of last writing some months ago, the author struck a hopeful note that with appropriate treatment, the daughter’s debilitating symptoms had finally greatly improved.  Finally, readers may be interested in this December 24, 2011 post by IBS Impact on fascinating research supported by the Wellcome Trust on the history of IBS in the U.K.

This post is not intended to be an exhaustive list of every resource available in the United Kingdom or Ireland for IBS, but a starting point. Readers are encouraged to comment on this post or through the contact links on the IBS Impact main website if there are suggestions of topics or resources or advocacy concerns that might be addressed in the future. IBS Impact draws many site visitors from the U.K, and Ireland, is pleased to have developed positive contacts with several of the resources listed in this post. We hope that most U.K. and Irish readers will find some useful information and direction, and that constructive dialogue and cooperation with other organizations, forums and individuals will continue in the interests of all people with IBS in those countries.