Is There an Average Person with Irritable Bowel Syndrome (IBS)?

October 26, 2014

Recently IBS Impact was contacted by a communications entity seeking perspectives from IBS sites and organizations for a possible education venture. This appeared to be an opportunity to share some thoughts, increase our reach and encourage more good quality awareness, and we were glad to be asked. The relatively open ended discussion ranged from personal experiences to the general themes of diagnosis, IBS education or lack thereof,  doctors, stigma, relationships with one’s family, friends and colleagues, the wide variety of information and resources on IBS ranging from state of the science academic research and organizations to outdated statistics to outright quack cure scams and everything in between, and the general tendency of people with IBS not to be as active as some other health communities in publicly identifying themselves or organizing for advocacy. All of these issues and more have been discussed on this blog, the IBS Impact main site and social media at various times in the past. But one question was more difficult to answer. Paraphrased,”What would an average person with IBS want in an education effort?”

The answer, in this case, seemed to be, “There is no average person with IBS.” IBS crosses all demographic boundaries, anywhere from 30 million to almost 60 million people in the United States alone, and, according to a tweet by Olafur Palsson, PsyD  of the University of North Carolina Center for Functional GI and Motility Disorders sometime back, perhaps as many as half a billion people worldwide on every continent. Researchers know that statistically, in most countries, about two-thirds of people with IBS are female and one-third male, a discrepancy thought to stem from both physiological factors, such as hormones, and social factors, such as access to or willingness to seek medical care, but in a few countries, the statistics skew more prominently toward men. All ages are affected, from small children to senior citizens, with varying ages of onset as well,  all ethnic groups, all socioeconomic backgrounds. Some of us are in the diarrhea-predominant subtype, some constipation-predominant, some mixed, some pain-predominant, some not easily subtyped. As discussed in a January 10 2012 post, a Rome Foundation task force last estimated that about 40% have mild or sporadic symptoms, 35% moderate symptoms and 25% severe symptoms. Anecdotally, some of us had very gradual symptom onset over a period of months or years, while for others it was abrupt, in a matter of hours or days. Some of us know that the onset of our IBS appears to have been following infection, food poisoning, abdominal surgery, or that there is a family history of IBS. Most have no idea where it came from. Some seek medical help immediately; some wait years, embarrassed, hoping things will go away. Some who do seek care find competent, knowledgeable, empathetic professionals quickly, others not so much. Some people appear to be helped by various specific treatment interventions, while those same approaches appear to do nothing at all for others, even if, on the surface, the individuals have similar symptom patterns. Some people can easily identify and remove symptom triggers. Others can’t and muddle through the best they can. Enter any large IBS forum and one will likely find members who were diagnosed yesterday, fifty years ago and everything in between. Some people with IBS are very open about it with family, friends, coworkers and classmates. Many, perhaps most, are not. A small minority are actively involved in awareness or advocacy. Most, for a variety of reasons, are not. Some are extremely knowledgeable about the current science of IBS and available resources. Many, sometimes even years after diagnosis, are not. Given all that, could there realistically be an average opinion on anything related to IBS? Any large support forum suggests otherwise.

As a result, reaching a critical mass of people with IBS with single perfect message for most of them is not easy for any website, organization, research center or other entity. Getting us to respond to an educational event, clinical trial opportunity, survey, charitable solicitation or call to advocacy action takes more work, more time, more patience and more luck than many people who are new to the IBS community realize. If successful, one is not necessarily reaching an “average person with IBS,” but whomever happens to be on a particular website or social media that day who is in the physical condition and mood to respond. One could easily be daunted and give up, and many IBS bloggers and websites do when IBS symptoms lessen, perhaps, and the impulse to go on with life and leave behind IBS as much as possible understandably takes over.

But the IBS community and the public need to read and hear those diverse experiences and perspectives. Those of us with quality information and resources to share should continue to reach whomever we can, even if it is a small segment of a huge potential audience. We should encourage others who wish to do the same, and not get too caught up in minor political or philosophical differences, for no one individual or organization or website or forum can do this alone. Researchers and other entities who wish to help people with IBS should take note of the vast differences in experiences in our community, and work toward parity in the availability of good quality IBS education, treatment and services. Finally, the general public, families, friends, colleagues and classmates, notice the huge numbers of people with IBS. Notice the demographic diversity. We are among you, whether you are aware of it or not. Like many other groups for other health conditions, IBSers generally do not want pity, but we can use and appreciate true empathy, concrete support and opportunities to continue as full and productive lives as each of us can with IBS.


“IBS Road Show,” London,UK Multidisciplinary Symposium to be Held November 28, 2014

October 19, 2014

The Functional Gut Clinic, located in London, has announced that a one day educational symposium for people with IBS and professionals will be held on Friday, November 28, 2014, at the Queen Elizabeth II Exhibition Centre in London from 9:00 a.m. to 5:30 p.m.

The event is designed to bring together people with IBS, clinicians, researchers, and other professionals, including dieticians, nutritionists,and alternative practitioners, to discuss experiences, scientific research, diagnosis, treatment, best practices and  potential limitations of current knowledge and practice. The aim is eventually to produce an outcome document to be shared publicly with the wider IBS community and, it is hoped, guide future evidence-based research and practice. This is the first such “IBS Road Show.” The sponsors, which include the Functional Gut Clinic, Almirall, Bedfont Scientific, Highgate Hospital, and Sandhill Scientific, intend to hold similar events in other geographical areas of the United Kingdom in 2015.

Additional affiliations include the British Society of Neurogastroenterology and Motility, the British Society of Gastroenterology and the British Dietetics Association.

Registration is currently open, with further information and the full agenda available on the Functional Gut Clinic site at IBS Road Show, London. The symposium’s full-price fee of 100 pounds includes a hot buffet lunch and refreshments. Thirty places are reserved for people with IBS for a 50 pound reservation deposit, which is refundable if the individual does indeed attend.

IBS Impact hopes that this information is of interest to readers in greater London, and wishes all involved with this event a productive and successful undertaking.


Recent UNC Research Yields New Insights into IBS Symptom Episodes

October 11, 2014

Recently the American College of Gastroenterology shared on social media an infographic highlighting the results of a study,”Episodic Nature of Irritable Bowel Syndrome” The study, which appeared in the September 2014 American Journal of Gastroenterology  was authored by Olafur Palsson, PsyD, Professor of Medicine at the University of North Carolina Center for Functional GI and Motility Disorders, the late Jeffrey Baggish, MD of CSL Behring, and William Whitehead, PhD, the Director of the UNC Center.

According to Drs. Palsson, Baggish and Whitehead’s article abstract, they asked study volunteers with IBS to keep a diary of pain and bowel movement consistency based on the standard Bristol Stool Scale. They then analyzed the data for 124 of those people who were able to record at least 21 consecutive days up to 3 months. During this time, volunteers did not take any anti-diarrheal, laxative or other medication for IBS. The number of days logged averaged 72 days. Drs. Palsson, Baggish and Whitehead’s aims were to determine if the symptoms of diarrhea, constipation, abdominal pain and/or bloating occurred in clearly time-defined episodes or were random, to develop rules for when individual symptom flares begin and end, and to observe any overlap between the occurrence of pain and the occurrence of the other gastrointestinal symptoms.

According to the ACG’s comments in the infographic, prior to this study, it has been observed that about 79% of people with IBS have experienced both loose and/or watery stools and hard and/or lumpy stools at different times. Also, the Rome III criteria used for diagnosis of IBS (See page 889.) have assumed that the onset of pain and the onset of bowel symptoms are closely related. In addition, people with IBS often take medications for IBS symptoms as needed, without any clear guidelines for when to start and stop. The new study in question provides some additional insights into all three issues.

The study concluded that for the people in the study group, symptom episodes averaged 2-4 days in length. From those patterns, the researchers were able to develop rules defining onset and completion of episodes that applied to 75% of loose and/or watery stools and 80% of hard and/or lumpy stools. Significantly, they discovered that bloating and pain often occurred together in episodes, and while constipation and pain or diarrhea and pain also coexisted often, more than half the time, pain was independent of changes in stool consistency. As such, the ACG infographic suggests that the Rome criteria (Rome IV is currently in development.) may need to be revised to reflect that finding.

Given that these key findings seem to have clear potential implications for future diagnosis and treatment, they seem worthy of being further highlighted on this blog for our readers. It is hoped that these results can be replicated in ways that lead to more effective medical care and self-management for all with IBS.

 


New UNC “Expert Update” Monthly Educational Series for Patients Returns with “IBS and Stigma,” October 2014

October 3, 2014

The University of North Carolina Center for Functional Gastrointestinal and Motility Disorders has just announced the return of its free monthly online educational series. This series allows people affected by functional GI and motility disorders to ask questions of and give feedback to leading professionals in the field associated with UNC and other research centers. Similar to the highly regarded UNC “Evening With the Experts” chat series which was discontinued in late 2012,  each month, UNC will post a video presented by an expert in a specified topic and area of research. This video will generally be approximately 30-40 minutes in length. Following the video, viewers will be able to submit questions directly to the researcher through the UNC Expert Update page for up to 7 days after initial posting.  Selected questions of general interest will be answered online shortly afterward so that all participants may be able to learn from them.

Unlike the previous UNC educational endeavor, the new video series will not be live chat and will not be scheduled online for a specific evening. These changes were made in the hope of increasing access to FGIMD-affected people and families who might not be able to commit to attending a specific date and time, as well as providing more flexibility for the professionals involved.  The basic format for this exciting resource is unchanged.

The first monthly topic posted today, Friday, October 3, 2014, is “IBS and Stigma: Do People with IBS Experience a ‘Spoiled Identity’? is presented by Tiffany Taft, PsyD, Clinical Research Associate at Northwestern University Feinberg School of Medicine, Center for Psychosocial Research in GI Disorders and Co-Director of Oak Park Behavioral Medicine, LLC, both in the Chicago area. Stigma is one of Dr. Taft’s research interests, for which she also authored a guest post on this blog on April 15, 2013. Her own blog, “Mind Your Body,” co-authored with her co-director at Oak Park Behavioral Medicine, Stephanie Horgan, LCSW, can be found in the blogroll links on the right sidebar of this page.

Expected upcoming topics and tentative dates are also available. Please check back on the UNC Expert Update page linked above for the specific videos or any changes on those dates.

  • November 14: “What Parents Need to Know about Abdominal Pain in Children” presented by Miranda van Tilburg, Ph.D.
  • December 12: “Causes and Treatments for Chronic Constipation” presented by William Whitehead, Ph.D. & Guiseppi Chiarioni, M.D.

Obviously, the professionals involved are not able to diagnose or treat individual people over the Internet, and depending on the number of and types of questions they receive, they may not be able to address every question. However, they can and do respond to general questions, concerns and the occasional suggestion, direct people to other general resources as appropriate, and explain their topics and cutting edge research in a respectful way that most affected people can understand, even if they are not scientists.

This is a tremendous and unique opportunity, especially for people with IBS or their loved ones who find that their local health care providers do not explain IBS to them adequately, are not fully up to date on standards of care or research on IBS, dismiss them or their IBS, or any number of common complaints from IBS community. Many people at UNC or other collaborating research centers, are world authorities and pioneers in the functional GI field who see patients whose FGIMDs are the most difficult to treat, and who have lived and breathed FGIMD research every day for years. These people take time out of their own busy schedules to make themselves available at no charge to any member of the public with an Internet connection fast enough to handle video and audio technology. Some fine professionals do pay attention if we take the time to speak up. Knowledge is power. If you or a loved one has one or more functional GI or motility disorders, please consider taking less than an hour of your time when a topic  is offered in order to learn scientifically accurate, state of the science information that may help you or someone close to you.

IBS Impact welcomes the return of UNC’s high quality public education efforts and thanks the series producer, Dr. Olafur Palsson, his colleagues at UNC and all of the participating experts for their long and ongoing commitment to functional gastrointestinal and motility disorder research, awareness and support of those of us who live with IBS and/or other functional gastrointestinal and motility disorders.

 


One Gene Mutation Identified for a Subset of People with Irritable Bowel Syndrome (IBS)

September 26, 2014

A September 5, 2014 news item from IFFGD reports that a gene mutation that appears to relate to irritable bowel syndrome has been identified in a genetic region known as SCN5A. SCN5A controls part of the function of the sodium channel, which is necessary for normal gastrointestinal motility.

This news item was based on a study of SCN5A in people with IBS that was published in Gastroenterology in June 2014. The authors included 29 researchers at the Mayo Clinic in Rochester, Minnesota and several other research centers in Sweden, Greece and Italy. The study involved genotype analysis of 584 people with IBS and 1380 people without IBS as controls. 2.2% of the people with IBS showed SCN5A encoding errors which disrupted sodium channel function. Interestingly, although diarrhea-predominant IBS was the most common subtype found in the study group with IBS, more of those found to have the SCN5A mutations were constipation-predominant rather than other IBS subtypes. Mexiletine, an anti-arrythmic drug used in restricted situations for certain cardiac conditions, resolved the disruption of the sodium channel when used on isolated cells in the laboratory. One person with IBS-C who was given mexiletine as a medication during the study also had a normal bowel pattern afterward. The overall findings of this study have been replicated 4 separate times with a total of 1745 people with IBS and unaffected control groups.The authors conclude that they have identified one mechanism of IBS and potential future treatment of it.

It should be emphasized that 2.2% is a very small subset of all people with IBS and this gene mutation is not necessarily the only potential factor leading to IBS symptoms, even in those who are eventually found to have it. At this time, it can only be identified in a research context, and cannot be tested or treated by physicians in a clinical setting. There is no single “IBS gene” that causes IBS in all people who develop it. Anecdotally, many people with IBS know that they have genetic relatives who also have IBS or commonly overlapping conditions, but many others with IBS have no known family history of the condition. There are many possible areas of continuing research into the causes of IBS. However, as with many advances over the past few years, this mutation in SCN5A is a promising partial answer and a potential source of hope for a small subset of people whose IBS cannot be adequately managed by currently available means.

 


When Irritable Bowel Syndrome (IBS) and Inflammatory Bowel Disease (IBD) Overlap or Coexist

September 19, 2014

Although inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS) have similar acronyms and some similar symptoms, they are very different gastrointestinal disorders. The different forms of IBD, such as Crohn’s disease and ulcerative colitis, cause visible inflammation and other structural changes in the digestive tract, as well as tangible biomarkers in one’s blood that can be measured by existing tests. As such, IBD is traditionally classified by the medical profession as an “organic” disorder.  Meanwhile, IBS, in which no structural differences from a “normal” colon or biomarkers can be obviously seen through existing tests and procedures currently available to physicians in a clinical setting, is considered a “functional” disorder.

In addition, IBS is considerably more common than IBD. Some of the demographic groups that are at higher risk for each disorder are different. Treatments used for IBD generally do not work for and are not accepted medical protocol for IBS and vice versa. Anecdotally, community resources, such as support groups, tend to be more readily available for IBD than IBS. Some people may be diagnosed with both IBS and IBD, but one condition does not cause the other. In fact, one of the frequent challenges of both the IBS and IBD communities is making the media and general public– including sometimes our own IBS and/or IBD affected peers and families– aware that IBS and IBD are not different names for the same condition. Three years ago, this blog published a post about the differences. Irritable Bowel Syndrome (IBS) and Inflammatory Bowel Disease (IBD) Are Not the Same.

The basic differences outlined in that post and the associated linked resources are still valid, and as far as leading international researchers in gastroenterology currently understand the science, IBD and IBS are still separate disorders. But like much related to irritable bowel syndrome, the reality is much too complex to reduce to simple media sound bites or Internet memes. As mentioned in IBS Impact’s 2011 post on the subject, for some time, researchers had already recognized that some people with irritable bowel syndrome do have subtle inflammation, especially in the post infectious-IBS (IBS-PI) subset, and anti-inflammatories, including some medications traditionally prescribed for IBD, have been tested in clinical trials for IBS, before and since that post, with mixed results. Over many years, various academic researchers of functional gastrointestinal disorders like IBS have also found evidence of neurological changes in pain perception, dysfunction in neurotransmitters and the brain-gut axis, altered gut microflora, genetic changes, and changes in immune mediators, though at a lower level than in IBD, in various subsets of people with IBS. So although numerous pieces of the puzzle that is irritable bowel syndrome remain to be put together, it is increasingly clear that IBS is not just a disorder of function.

Conversely, IBD may not be as straightforward as traditionally assumed either, as is seen in the subset of people who have coexisting diagnoses of inflammatory bowel disease and irritable bowel syndrome. According to Douglas Drossman, MD, MACG, founder and co-director emeritus of the University of North Carolina Center for Functional GI and Motility Disorders,  founder and president of the Rome Foundation, and founder and president of the Drossman Center for the Education and Practice of Psychosocial Care, this group of people is now said by medical professionals to have what is called IBS-IBD. In his September 13, 2014 blog post, Understand IBS-IBD From the Biopsychosocial Perspective, Dr. Drossman writes that is now possible for IBD medications to resolve observable gastrointestinal inflammation to such microscopic levels that IBD is considered in remission. Yet, up to 20% of these people continue to experience significant pain and diarrhea similar to IBS-D. Interestingly, in  the past several years, researchers have observed that the way IBS-IBD presents is very similar to postinfectious IBS.

International experts in IBS like Dr. Drossman have long advocated a comprehensive biopsychosocial approach to treating IBS, in recognition of the influence psychological stress and cognitive beliefs can have on the physical aspects of IBS and vice versa. In the linked post, he explains its importance for the specific IBS-IBD subset as well.

The IBS-IBD subset of people with IBS is rarely, if ever, mentioned in educational material readily available to people with IBS, families and the media or general public.  IBS Impact thanks Dr. Drossman for his continuing leadership in the field and for bringing these aspects to wider attention through his post. It is hoped that in the future, further research in general and with the IBS-IBD group in particular will yield useful insights into the causes and treatment of both IBD and IBS.


Representative King of New York Co-Sponsors HR 842 for Functional Gastrointestinal and Motility Disorders

September 11, 2014

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, Representatives Peter T. (Pete) King (R-NY-2) has recently signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative King is serving his eleventh term in Congress, currently representing the 2nd District of New York, which was recently re-districted and currently encompasses parts of both Nassau and Suffolk Counties in central and South Shore Long Island, including the Townships of Hempstead, Oyster Bay, Babylon and Islip and most of Fire Island. According to Representative King’s official House website, he is currently a member of the Subcommittee on Homeland Security and has a record of supporting legislation concerning the military, veterans and health care.  As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk of functional gastrointestinal disorders like IBS, which are already very common in the general population.

If you are a constituent of Representative King, please take a few minutes to write or call him with your thanks for his support of HR 842 and the functional gastrointestinal and motility disorders community.

In officially supporting HR 842, Representative King joins the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8), Representative Julia Brownley (D-CA-26), Representative Bobby Rush (D-IL-1),  Representative Gwen Moore (D-WI-5), Representative Ron Kind (D-WI-3), Representative Susan Davis (D-CA-53),  Representative Peter Welch (D-VT), Representative James McGovern (D-MA-2), Representative Gerald Connolly (D-VA-11), Representative Louise Slaughter (D-NY-25), Representative Bill Posey (R-FL-8), and Representative Ed Perlmutter (D-CO-7), Representative Jim Himes (D-CT-4), Representative André Carson (D-IN-7), and Representative Mo Brooks (R-AL-5), Representative Richard Neal (D-MA-1), Representative David Price (D-NC-4) and Carol Shea-Porter (D-NH-1)  U.S. citizens residing in the districts of Representative King’s  colleagues listed here, please thank them as well.

According to the information on THOMAS, it appears that the bill is currently under consideration in the Subcommittee on Health. Click on the link above if you would like to see a list of its members.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 842 and you have not contacted him or her recently to ask for his or her support, please see the previous post from March 2, 2013  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 2012 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 842 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 842.

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 842 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 113th,  the necessary number of sponsor/cosponsors must be reached by December 2014. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 842 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. 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 842 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


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