Representatives Price of North Carolina and Shea-Porter of New Hampshire Co-Sponsor HR 842 for Functional Gastrointestinal and Motility Disorders

July 17, 2014

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, Representatives David Price  (D-NC-4) and Carol Shea-Porter (D-NH-1) have recently signed on as co-sponsors to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Price is currently serving his thirteenth non-consecutive term in Congress representing the 4th District of North Carolina, which was recently re-districted and currently encompasses much of the Triangle region in the central part of the state, including most of Durham and Orange Counties and parts of Alamance, Wake, Harnett, Chatham and Cumberland Counties. According to his official House website, Representative Price is currently a member of the Committee on Appropriations, where he supported increases in funding to the National Institutes of Health. He also is the Ranking Democrat on the Subcommittee on Homeland Security and  a member of the Subcommittee on Military Construction and Veterans Affairs. 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. In the 112th Congress in 2011-2012, Representative Price was also a co-sponsor of HR 2239, the previous version of this Act, which was not passed by the House of Representatives at that time. IBS Impact commends Representative Price’s continued support.

Representative Shea-Porter is currently serving her third non-consecutive term in Congress representing the 1st District of New Hampshire in the southeastern part of the state, encompassing most of greater Manchester, the Seacoast and the Lakes regions, including  all of Carroll and Stratford Counties, most of Belknap and Rockingham Counties and small portions of Grafton, Hillsborough and Merrimack Counties. Representative Shea-Porter, whose official House website, states she is a former military spouse, is a member of two subcommittees of the Committee on Armed Services. She also has a record of membership in several caucuses or supporting legislation related to various health and women’s issues. In most countries, women are also disproportionately affected by IBS.

If you are a constituent of Representative Price or Representative Shea-Porter. please take a few minutes to write or call with your thanks for their support of HR 842 and the functional gastrointestinal and motility disorders community.

In officially supporting HR 842, Representatives Price and Shea-Porter join 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) and Representative Richard Neal (D-MA-1) U.S. citizens residing in the districts of Representative Price’s and Representative Shea-Porter’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.


Online Clinic for Bladder, Bowel and Digestive Health Available July 16-22, 2014

July 9, 2014

TalkHealth, a social media community in the United Kingdom that provides health information and online forums, and “online clinics” where participants can ask questions of health experts and organizations for a given category of conditions, has announced that the July 16- 22, 2014 topic will be the bowel, bladder and digestive health. TalkHealth is presenting this month’s clinic in cooperation with NHS Choices, the Bladder and Bowel Foundation, The IBS Network, which is the U.K. national charity specifically for irritable bowel syndrome, Core, which is an organization for all gut and liver diseases, and PromoCon, a national service of Disabled Living for adults and children facing continence issues. The 2014 Bladder, Bowel and Digestive Health Clinic, which takes the form of an online forum, is currently open and accepting questions in advance and through the dates of the clinic.  Readers can access it by clicking the above link.

Some past clinic topics for various health conditions, including the July 2013 bladder, bowel and IBS clinic, and the August 2013 clinic for chronic fatigue syndrome (also known as myalgic encephalomyelitis) or fibromyalgia, both of which commonly overlap with IBS, are archived on the TalkHealth website, although they no longer accept questions

IBS Impact hopes TalkHealth provides another source of reputable information and support to our U.K. readers. In addition to the clinic this month, please browse the rest of the TalkHealth website, including the new online forums for IBS, and feel free to leave comments on this post for the benefit of other IBS Impact readers as to if you find the resources useful.


Representative Neal of Massachusetts Co-Sponsors HR 842 for Functional Gastrointestinal and Motility Disorders

July 3, 2014

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, Representative Richard Neal (D-MA-1) has recently signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Neal is currently serving his thirteenth term in Congress, his first term representing Massachusetts’ recently redrawn 1st district,  which encompasses western and part of central Massachusetts, including all of Berkshire County, most of  Hampden Counties and parts of Franklin, Hampshire and Worcester Counties, including the cities and towns of Springfield, West Springfield, Holyoke, Pittsfield and  Westfield. According to Representative Neal’s official House website, he has a record of supporting health issues.

If you are a constituent of Representative Neal, 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 Neal  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-C0-7), Representative Jim Himes (D-CT-4), Representative André Carson (D-IN-7), and Representative Mo Brooks (R-AL-5). U.S. citizens residing in the districts of Representative Neal’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.


Book Review: The Gut Solution for Parents with Children Who Have Recurrent Abdominal Pain and Irritable Bowel Syndrome

June 27, 2014

Because most educational materials, research studies and other resources related to irritable bowel syndrome are focused on adults, readers may not be aware that children and adolescents can also develop IBS. A subset of these young people may have a parent or other genetic relatives who also have IBS or a commonly overlapping chronic condition, while others will have no known family history. 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.

Because of this relative dearth of youth-centered material, IBS Impact was pleased to learn recently of a relatively new book written especially for parents of children and teens with IBS or recurrent abdominal pain (RAP), also known as functional abdominal pain (FAP). RAP/FAP is a specific medical diagnosis that involves chronic abdominal pain similar to that in IBS but does not include disturbances in bowel movements. The book, The Gut Solution for Parents with Children Who Have Recurrent Abdominal Pain and Irritable Bowel Syndrome by Michael Lawson, M.D. and Jessica Del Pozo, PhD, (Lemke Health Partners:2013) appears to be a helpful resource for families.

Dr. Lawson is a board-certified gastroenterologist educated in both Australia and the United States who is currently practicing at Kaiser Permanente of Northern California, is a Clinical Professor at the University of California at Davis and has volunteered in Nicaragua, the Dominican Republic and Cambodia as part of his interest in multicultural medicine. Dr. Del Pozo is a licensed clinical psychologist, also at Kaiser Permanente of Northern California, who focuses on assisting those with chronic illnesses, including IBS and other chronic pain conditions. For several years, she and Dr. Lawson have collaborated as part of a multidisciplinary team treating school-aged children and teens with IBS or RAP/FAP. They use the SEEDS Program, which was developed by Dr. Lawson. SEEDS stands for Stress management, Education and communication, Exercise, Diet and Sleep, which the authors claim has been successful in reducing IBS or RAP/FAP symptoms long-term for the vast majority of several hundred youth who have participated since the program’s inception several years ago. This protocol has been presented at Digestive Disease Week, a large, well known annual international conference for professionals in the field of gastroenterology.

The Gut Solution is only 144-157 pages long, depending on edition, and although IBS and RAP/FAP are complex topics, is written in relatively easy to understand language and includes a glossary, all aspects that busy parents who are not health professionals themselves would probably appreciate. The authors begin with explanations of what IBS is and is not on the neurological, biological and physiological levels, with particular emphasis on the brain-gut interaction and visceral hypersensitivity that characterize functional gastrointestinal disorders like IBS and FAP, diagnosis, and how they differ from other common gastrointestinal diagnoses. The authors continue with a brief overview of most common conventional and complementary treatments, then systematically explain each aspect of the SEEDS protocol, including sample questions for family discussion, tips for both the youth and parents or guardians related to each element of the program. One child’s experiences are interspersed through much of the book as a case example. The stress management chapter includes some suggested techniques, the exercise chapter includes some sample exercises and the diet chapter includes an explanation of the low FODMAPs diet and other diet advice, some sample menu items, as well as a fluid replacement recipe suggested for chronic diarrhea. The authors emphasize the importance of creating and/or maintaining stable routines, open communication and clear, healthy boundaries and expectations as a means of reducing stress for the child or adolescent with IBS or RAP/FAP and other members of the household. They offer suggestions to parents for talking to and listening to their children about IBS or RAP/FAP at different developmental stages and note some possible pitfalls in communication in different parenting styles.

Overall, the information in The Gut Solution appears to be scientifically accurate, evidence-based and up-to-date as of its publication date of 2013. The advice is generally consistent with the multidisciplinary, biopsychosocial approach advocated by functional GI experts. It is a good balance between abstract scientific explanations and practical strategies for helping a child or adolescent with IBS or RAP/FAP reduce symptoms and manage the condition over the long term. The section on other syndromes connected to IBS and the chapter on sleep are particularly worthy of mention, as fatigue and/or sleep disturbances are common extraintestinal (non-GI) symptoms for many children and adults with IBS. Extraintestinal symptoms and commonly overlapping conditions are rarely discussed in detail in most written material for affected individuals, families or the general public.

For a relatively short book, The Gut Solution covers a great deal of varied information, but does have some curious omissions. For example, in the section on diagnosis, the Rome criteria are explained, but the actual term “Rome criteria” and the fact that they are international guidelines are never mentioned, meaning parents might not recognize the term if they encountered it elsewhere, or not realize that these are standard diagnostic criteria rather than the authors’ or individual physicians’ opinions. Although “mind-body medicines” are briefly alluded to in the subsection on treatments under complementary and alternative medicine, and a publication by Olafur Palsson, PsyD. and William Whitehead, MD of the University of North Carolina Center for Functional GI Disorders on psychological treatments for IBS is listed in a “further reading” section, the generally effective and well-established evidence-based psychological treatments of gut-directed hypnotherapy and cognitive behavioral therapy are absent from Dr. Lawson’s and Dr. DelPozo’s overview of current treatment options in the actual text. Regular readers of this blog may also notice that some of the authors’ statistics throughout their book differ a bit from those of the primary sources IBS Impact often quotes or links on this blog, but this is a minor concern.

It is likely that most parents who read The Gut Solution, whether their children have been recently diagnosed with irritable bowel syndrome or recurrent abdominal pain/functional abdominal pain or have dealt with symptoms for some time, will find the book useful to them to some extent, though not all aspects of the SEEDS protocol or the parenting advice will necessarily apply equally to all children or all family situations. IBS Impact encourages parents to use the portions that appear to be helpful to them and their child in conjunction with their child’s own health care providers. We also encourage families to continue learning from Dr. Lawson and Dr. Del Pozo’s “further reading” section and other reputable sources. IBS Impact’s main website has a specific page dedicated to children with IBS and another page for family and friends. In addition, most resources on the other pages of the main site, this blog and social media are applicable to both children and adults with IBS.

The Gut Solution: For Parents with Children Who Have Recurrent Abdominal Pain and Irritable Bowel Syndrome by Michael Lawson, MD and Jessica Del Pozo, PhD is available from major online booksellers in a paperback edition and in a Kindle e-book edition. Please note that the Kindle edition does not appear to include the book’s index. Also, search results bring up completely different books by different authors with similar main titles, such as Gut Solutions, so readers should be careful that they have located the correct book.

Dr. Lawson and Dr. Del Pozo’s website for the book is linked here.

Although IBS Impact received an early PDF version of the book for our reference, we receive no funding for this review or for any sales of the book. As with all of the information on this blog, our main website and social media, it is provided in the interest of scientifically accurate public awareness and assisting blog readers dealing with IBS to make informed choices for themselves or their families.


Irritable Bowel Syndrome (IBS) and the Myth of a Cure

June 19, 2014

One can’t run an IBS website, forum or active social media account without sooner or later encountering all sorts of claims about a cure for IBS. Vigilant site owners and moderators who wish to do so can filter out many blatant offenders, but the same themes recur in forum postings, in the spam mail to owners of sites like IBS Impact, in Internet search results, and in the occasional inquiries of acquaintances with IBS or an exasperated family member who wants to know if his or her relative with IBS or the doctor has reputable information or junk science. Certainly, if one is new to information about IBS and struggling with symptoms, it’s understandable to want to believe anything or anybody that just might hold the key to getting rid of this highly disruptive condition quickly and forever. The people behind IBS Impact and probably the vast majority of readers and site visitors have been in that state of mind more than once. Unfortunately, IBS doesn’t work that way, much as we would like it to.  As of now, 2014, there is no cure for IBS. Conventional medicine cannot cure IBS. Alternative medicine cannot cure IBS. While the science of IBS is evolving and advancing each year, a true cure is a long way away. For a small percentage of people with IBS each year, with luck and time, IBS symptoms will go away spontaneously,  (Scroll down to “Is IBS forever?”) but for the near future, the best most of us can hope for is successful management, with fewer, less intense and/or less frequent symptoms. Anyone who promises a cure is telling an untruth, is misinformed, or is using the word  “cure” very loosely.

The most obvious version of the mythical miracle IBS cure– although perhaps not, since these marketers would not persist if some people were not taken in by them– usually appears in spam emails, some IBS discussion forums, and random Internet ads when one searches most topics related to IBS. This kind of advertiser is precisely why IBS Impact chooses to to pay WordPress, which hosts this blog, for its “no ads ” option to suppress all types of ads on this blog. Typically the “cure” is some kind of expensive supplement that is supposed to stop symptoms quickly in days or weeks. Frequently, it claims to be “natural” and may involve some blend of herbs, antioxidants or probiotics that make it sound legitimate. In themselves, probiotics are generally accepted by IBS professionals as reasonable options to try, with the understanding that there are thousands of strains and combinations, only a tiny fraction of which have undergone clinical trials for IBS. However, reputable professionals do not claim that a specific probiotic formula or anything else is any more than one type of intervention that may help some subset of people with IBS.  Often, purveyors of “miracle cures” are very vague about what is in the product until they have one’s contact information and have separated individuals with IBS or their families from their money. Some may claim to offer money back guarantees, but if the product is so good, why should that be necessary? If it’s so simple, why have decades of peer reviewed academic research all over the world not yielded that specific answer? How can an anonymous stranger on the Internet know that something will “cure” all or most people with IBS, in all our variations, when our own medical providers who know our individual health histories cannot? Anyone who does not recognize or acknowledge that different people with IBS, even with similar symptoms, often have different experiences and outcomes with any given treatment is probably not familiar with more than one person with IBS.

Then there are those who claim we can “heal” ourselves or “reverse” IBS by ridding ourselves of toxins through cleanses or extremely restrictive diets free of genetically modified organisms or the like, or that we can do so by zeroing in on the “root cause” of IBS like Candida overgrowth, parasites or food intolerances, to name a few common claims.  Some of these statements have grains of truth in conventional medicine as IBS is currently understood, but are not quite accurate. Food intolerances indeed often have similar symptoms to IBS. Lactose intolerance, because it is very common in most ethnic groups, often coexists with IBS,  but is most often genetic, involves a deficiency of a specific enzyme produced in the small intestine, not the colon, and one condition does not cause the other. True fructose intolerance is less common, also hereditary, and is usually evident very early in life because of major medical complications if unrecognized.  Their own previous results regarding non-celiac gluten sensitivity and IBS  have recently been called into question by the very researchers at Monash University in Australia who first identified NCGS  and developed the low-FODMAP diet for IBS. With the low-FODMAP approach, people with IBS are encouraged to reduce or avoid some of these same food components to lessen –not cure–symptoms, but for completely separate scientific reasons. If true food intolerances are the only issue, and symptoms completely resolve from avoidance, then the initial diagnosis of IBS was not accurate.  IBS is not a catchall diagnosis, but one that is specific.

As for parasites, it is very well acknowledged by the functional GI professional community that gastrointestinal infections, including ones from parasites, can trigger first onset of post-infectious IBS shortly thereafter, but by the time the functioning of the gut is disturbed by IBS, the parasite is gone. By definition, in addition to the specific description of IBS symptoms outlined in the Rome III criteria page 889, if any structural, organic or metabolic cause can be found for symptoms, it’s not IBS. In short, if a parasite is still detectable, it’s a parasite, not IBS. In industrialized countries, parasitic infections are relatively uncommon, typically from contaminated food or water or improperly cooked meat, or recent travel in a region of the world with less reliable sanitation practices, not transmitted casually or spontaneously developed. Therefore, if one is at risk for a parasite, one is likely to remember. At this point in the science, no one can say with certainty that he or she knows all the “root causes” of each individual’s IBS in order to promise a cure. What can be said is that in general, for people with IBS as a group, some potential causes and treatments have more extensive and reliable evidence than others. For any given individual, effective interventions are still a matter of trial and error.

Some of the common “alternative” theories mentioned above have no reliable peer reviewed evidence in relation to IBS.  Candida overgrowth is one of these. Colon cleanses are another. The American College of Gastroenterology links on its website an article that states there is no evidence that colon hydrotherapy in particular has any medical benefits, and may be dangerous if it disturbs the body’s electrolyte balance or causes dehydration. In IBS specifically, it can exacerbate or trigger symptoms rather than relieve them. As for genetically modified organisms, although IBS has not always been called by its present name, it  has existed for many generations before GMOs existed and IBS continues to exist around the globe, including in developing nations where GMOs are not prevalent. While it’s a good thing to encourage healthful eating, the high prevalence of IBS cannot be blamed on GMOs.

The third general theme in the “cure” myth is the person with IBS who claims that he or she follows a specific diet or takes some medication or probiotic or supplement and, “Now I’m cured.” Even if we take stories like this at face value that it is an actual person with properly diagnosed IBS, this is sloppy language. If the person stopped treatment and symptoms returned, that would not be a cure. If he or she could stop the intervention, still be symptom-free, and not have to think about his or her gut or do anything to maintain it more than he or she did before getting IBS in the first place, that would be a cure. If continued treatment is needed for symptoms to go away but they do completely, that’s fortunately “successful symptom management.” We will not say “good management,” because that implies there is also “bad management,” and there are plenty of people with IBS who carefully do the things that are supposed to help us and still cannot get adequate symptom relief. IBS is not a moral failing to be judged on how well or poorly managed. It is a chronic medical condition with no cure.

That is not to say that the situation is hopeless, but that we should be accurate and realistic about the limits of both conventional and alternative medicine. A large 2007 survey by IFFGD and the University of North Carolina Center for Functional GI and Motility Disorders showed that over a third of respondents had used at least one complementary or alternative approach of various specific types at some point. (See page 16.)  IBS forums are full of positive and negative anecdotes for any treatment option, conventional or alternative. Like their conventionally trained counterparts, alternative practitioners vary. Some alternative or holistic providers practice in or in close consultation with integrative medicine units of hospitals, and may even also have conventional medical credentials. Some may have “alternative” credentials. Some may be quacks with no credentials at all.  Good ones should not be speaking of cures, but of management, similar to conventional health providers.

While IBS Impact advocates greater evidence-based education and research about Rome criteria-diagnosed IBS, and carefully selects its sources, links and suggested resources accordingly, we recognize that some will choose to pursue other options. We encourage readers who do so to make informed decisions with  full and accurate knowledge of what is currently considered proven, not proven, inconclusive, controversial or anecdotal, and we make an effort to provide clear distinctions in posting information on the blog, our main website or social media. In time, what is considered scientific truth about IBS today in 2014, will change as ongoing research and the lived experiences of those of us with IBS broaden and deepen the range of insights. Perhaps in our lifetimes we will see a true cure for IBS. But not today.


Congressional Call-In Day for Functional Gastrointestinal and Motility Disorders Is June 17, 2014

June 8, 2014
Used with the permission of the International Foundation for Functional Gastrointestinal Disorders/the Digestive Health Alliance (IFFGD/DHA)

Used with the permission of the International Foundation for Functional Gastrointestinal Disorders/the Digestive Health Alliance (IFFGD/DHA)

IFFGD/the Digestive Health Alliance has scheduled its annual Congressional Call-In Day in support of HR 842, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013, for Tuesday, June 17, 2014.

As of early June 2014, HR 842 is officially supported by 16 members of the U.S. House of Representatives, representing both political parties and 12 states.  They are the initial 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), Representative Ed Perlmutter (D-C0-7), Representative Jim Himes (D-CT-4), Representative André Carson (D-IN-7), and Representative Mo Brooks (R-AL-5).

The upcoming 2014 Congressional Call-In Day is an excellent opportunity for constituents of current supporters to express their appreciation to their legislators, as well as  for U.S. citizens whose Representatives are not yet co-sponsors to advocate for their support. On June 17, IFFGD/DHA and other IBS sites, including IBS Impact, strongly encourage all U.S. citizens with all functional gastrointestinal or motility disorders (for example, irritable bowel syndrome, GERD, gastroparesis, chronic idiopathic psuedo-obstruction, Hirschsprung’s disease,  functional (recurrent) abdominal pain, cyclic vomiting syndrome, functional dyspepsia and many others, which collectively affect at least 25% of the population), concerned family members, friends, co-workers or classmates, health and human service professionals who work with people with functional GI or motility disorders, to call their Representatives about HR 842. A strong, unified presence by many voices on the same day will make an impression that will pave the way for the IFFGD/DHA’s delegation of self-advocates with functional GI or motility disorders and functional GI professionals who will travel to Washington, DC to advocate in person later this month on IFFGD/DHA Advocacy Day 2014.

If you know the member of the federal House of Representatives who represents you, the direct telephone number for his or her Washington, DC office can usually be found on his or her official website, which can be located by an Internet search of his or her name. 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. If you are not sure who is your Representative, you can look up this information at  http://www.house.gov/representatives/find/ or call the U.S. Capitol switchboard at (202) 225-3121.

During business hours Eastern time on June 17, call your Representative’s office. Identify yourself as a constituent and give your name and the town or city in which you reside. Ask to speak to the staff member who deals with health issues. You may be asked for your street address or phone number. This is to confirm that you do live in the Representative’s district and/or to allow the office to contact you to follow up. If you are nervous, in advance of calling, write down notes for yourself or a short presentation to read. You do not have to be an excellent speaker, just a person that the legislator and his or her staff will see as a real person with real needs. Be polite, keep the conversation on topic and limited to a few minutes, and thank the staff person for his or her time. At a minimum, clearly state that you wish for the Representative to support HR 842, or express your thanks if he or she has already signed on.

Beyond this, you may choose to briefly explain your personal interest and/or experience with functional GI or motility disorders (for example, have had/family member has had irritable bowel syndrome for X years and has had difficulty finding appropriate treatment) and/or why functional GI and motility research and education provided for in HR 842 are important in general such as what a functional GI or motility disorder or  your specific one of interest, like IBS,  is, how many people it affects, usually affects both genders, all ages, all ethnic groups  that IBS/functional GI disorders are usually chronic. often misdiagnosed or mistreated and effective treatments, providers and local community services are limited. Thank the staff member again before ending your call. If the staff member who deals with health issues is not available, leave a brief message with the above details on voice mail or with the staff member who answers the phone. It is rare for such advocacy calls to result in an immediate commitment to a particular bill, but one purpose of Call-In Day is to create awareness of the needs that affect large numbers of people and momentum for increasing Congressional support.

For more information on HR 842 and advocacy strategies, including links to the bill, see the previous post from March 2, 2013 or click on the HR 842 category in the right sidebar of this blog to see all posts on this topic. Click the following link for DHA’s page for Call-In Day 2014

IBS Impact urges all U.S. citizen readers of this blog to participate in the important and easy advocacy effort and to spread the word among your supportive relatives, friends and functional GI and motility disorder groups.  The progress of HR 842 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.


Clinical Trials: Open Studies for Irritable Bowel Syndrome (IBS) in the U.S and U.K. May 2014

May 29, 2014

Below are two studies that have come to the attention of IBS Impact recently. The description below is a summary of major qualifications and details available, and other restrictions may apply.  If interested, please contact each listed sponsor directly for further information.

RESTORE 5 Study at the University of North Carolina Center for Functional GI and Motility Disorders, Chapel Hill, North Carolina

Women with IBS with diarrhea (IBS-D) ages 18-65 who are not pregnant, and do not have Crohn’s, colitis, diabetes mellitus, lactose intolerance, any other type of malabsorption, or celiac disease. Time commitment 8 weeks, 5 visits to UNC. There is monetary compensation (amount not specified.) http://www.ibsstudy.com/

The above listing was received from UNC Center social media and summarized from the study website.

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Online Study on the Effect of Expressive Writing on IBS Symptoms, Royal Holloway University of London, United Kingdom.

This study is being conducted by a Royal Holloway University psychology PhD student, Hannah Bowers. She is seeking responses from  adults over 18 with IBS There does not appear to be a country restriction. The study involves online submission of writing samples  of approximately 500-100o words per entry twice a week for two weeks, and then at a 3 month followup according to guidelines provided by the study.  You must provide an email address to receive instructions during the study, but do not have to provide your name. Participants completing the study will have the option to enter a drawing for prizes worth up to 50 pounds. Contact information for Ms. Bowers and her RHUL supervisor and a consent form can be found at the link below.

http://edu.surveygizmo.com/s3/1621627/Does-writing-regular-journal-entries-affect-digestive-symptoms

The above listing was summarized from an email received directly from Ms. Bowers, as well as from the survey itself.

While IBS Impact attempts to highlight a diversity of available opportunities, this is not intended as an exhaustive list. 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. 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.


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