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

February 25, 2014

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

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

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

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

February 17, 2014

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the symptom cluster currently known as irritable bowel syndrome or IBS has been called various other terms that are now outdated.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

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

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

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

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

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

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

New Research on Biomarkers and MRI Imaging Suggests Directions for Future Diagnosis and Treatment of Irritable Bowel Syndrome (IBS)

February 9, 2014

January and February 2014 appear to have been good months for IBS research, which may be encouraging to those of us with IBS that scientists around the globe continue to work hard on our behalf. Multiple news reports and newly published study results from separate teams in different countries are intriguing and worthy of mention here.

In one recently published study, involving a collaboration of researchers from Macquarie University and the University of Newcastle, both in Australia, as well as from the University of Michigan at Ann Arbor and Prometheus Laboratories, a pharmaceutical and diagnostic products company in San Diego, California, both in the United States, evaluated 244 research subjects. This group included people with identified IBS with diarrhea, IBS with constipation, IBS with mixed subtype, and without any other known functional gastrointestinal disorders.  The researchers selected 34 possible genetic and serological (immune) markers based on factors known to be problematic in IBS as well as whole genome analysis. They also considered 4 additional psychological markers related to depression, anxiety and somatization (psychological distress expressed as physical symptoms). They found that a combination of the 34 biological markers was effective in distinguishing those who had IBS from those who did not have it, and that the addition of the 4 psychological factors increased this ability to distinguish IBS from the healthy controls. Furthermore, the biological factors were relatively effective in distinguishing subtypes of IBS, most successfully between IBS-D and IBS-C. However, in this case, the psychological factors had almost no effect. The findings of this study open the door to the potential development of reliable diagnostic tests for IBS in the future.

A second team of researchers from the University of Nottingham, a major center for IBS research in the United Kingdom, recently published three separate studies in which they successfully used MRI imaging techniques. Previously, researchers were limited to X-rays of the colon, which did not allow as detailed observation as MRIs, and might present radiation risks, especially to children and to women of childbearing age, who are a large proportion of people with IBS. In one study, the Nottingham researchers were surprised to discover that their study subjects with faster than normal transit times, such as in IBS-D, had colons about the same size as volunteers with normal transit. However, in those with IBS, the first part of the colon, known as the ascending colon, was unable to expand as much as normally to allow the contents to move down the colon. The MRI technique now allows researchers to measure the difference, and potentially, in the future, use medications to address this specific problem. The Nottingham researchers were also able to use MRI imaging to study gastrointestinal motility in a second study, and in a third study on healthy volunteers and FODMAPS. It is already known by IBS researchers that a low-FODMAP diet is helpful to many people with IBS. Now that the Nottingham team has data on healthy volunteers, it plans to follow up with studies on people with IBS that will hopefully shed more insight into absorption or malabsorption of specific foods, colonic distension and the mechanisms of how the low-FODMAP diet works.

Finally a recent news item from the website Medical News Today reports the creation of an interdisciplinary network of 70 research groups from 19 European countries known as GENIEUR (Genes in Irritable Bowel Syndrome Europe) to study the genetic factors that may lead the development of IBS. Presently, according to the article, only a few genes that predispose an individual to IBS are known. GENIEUR, led by top IBS researchers from the University of Gothenburg and the Karolinska Institutet, both in Sweden, and the University of Heidelberg in Germany, hopes to set up a biobank that includes samples from a large number of people with IBS and healthy controls that will eventually assist them in further identifying genetic influences and biomarkers for IBS. It should be emphasized that all of the research mentioned above is still preliminary, and much more study is needed before usable and reliable diagnostic tests and targeted treatment for IBS are available and well accepted by the medical community at large. However, each of the reports cited above appears promising, with the potential to lay the groundwork for major progress in the diagnosis and treatment of irritable bowel syndrome worldwide in the future.

Two frustrating things about irritable bowel syndrome for people who have it and the health care professionals who provide care to us are that there are currently no laboratory tests that can be done in a clinical setting to diagnose IBS or determine the most effective treatment options for any given individual with IBS. Although several decades of research have established numerous known and possible abnormalities that exist in people with IBS, none of this is obvious by examining a person’s colon, blood work or other tests outside of a research context. For over 20 years, international experts in functional gastrointestinal disorders have recommended the use of the Rome criteria, which uses patterns of symptoms to diagnose IBS. They estimate that a Rome III diagnosis is 98% accurate. However, as written on this blog on October 9, 2011, a 2010 study unfortunately showed that large numbers of primary care physicians, gastroenterologists and nurse practitioners still believe the outdated notion that IBS is a diagnosis of exclusion to be given only when everything else that could cause similar symptoms is ruled out. This enduring misconception, which also exists among the general public and many people with IBS themselves, can be very damaging to individuals with IBS who may not get appropriate medical care, sufficient social support from family and friends, accommodations from schools or employers, despite legal protections in the U.S. and some other countries, or disability benefits if needed because of the belief that medical tests are “normal” and nothing serious is wrong. Even when IBS is quickly and correctly diagnosed and the health care provider is knowledgeable, because there is no way to test for each person’s specific needs, many people with IBS face months or years of trial and error with various treatment interventions that have been shown to be helpful for some subset of people with IBS, not necessarily us. Any scientific breakthroughs that allow doctors to demonstrate readily observable structural, metabolic or genetic changes, will ultimately help them to diagnose and treat those of us with IBS more precisely and further legitimate our medical condition and needs as individuals and as the IBS community.

U.S. Food and Drug Administration (FDA) Releases Warning About Sodium Phosphate Laxatives

February 3, 2014

An announcement from IFFGD recently alerted us to the fact that the U.S. Food and Drug Administration (FDA) recently issued expanded warnings regarding over the counter oral or rectal laxatives that contain sodium phosphate, due to increased risks of severe side effects or death in certain groups of users. Currently, labels state to take a maximum of one dose per day for three days. However, if the first dose is ineffective in relieving constipation, consumers should not continue taking the laxative product.

The updated cautions, which are not yet on product labels, now advise adults over the age of 55, as well as adults with, or caregivers of children with, kidney disease, heart disease, dehydration, colon inflammation or who are taking “diuretics or fluid medicines; angiotensin-converting enzyme (ACE) inhibitors used to lower blood pressure; angiotensin receptor blockers (ARBs) used to treat high blood pressure, heart, or kidney failure; and nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen”  to consult a physician or other health care professional before using over the counter sodium phosphate-based laxatives. Such products are marketed in the U.S. under the Fleet brand name and other generic or store versions.

This change in FDA advice is the result of its review of 54 cases of serious adverse effects, including dehydration, electrolyte imbalance and kidney damage, which were ultimately fatal for 12 adults and one child in this group. As not all instances of side effects are necessarily reported to the FDA, the press release states that a precise rate of these negative outcomes is not known. For more information, see the links in the first paragraph of this post.

IBS Impact is a grassroots effort by people with IBS that focuses on awareness and advocacy, not treatment.  We do strive to provide information and resources that are  reputable, accurate and balanced to the extent of the current scientific knowledge of experienced professionals in the field of IBS and functional gastrointestinal disorders, and to encourage others with IBS and their families to make fully informed decisions that are right for their own situations. Readers with specific questions about this warning in relation to their own IBS or other condition that causes constipation are encouraged to consult their own doctors and other health care providers.