Online Survey: IFFGD, University of Michigan, Drossman Center, Patient-Doctor Relationships in IBS, December 2014December 6, 2014
The University of North Carolina Center for Functional Gastrointestinal and Motility Disorders has just posted the November 29, 2014 installment of its free monthly online educational series for individuals and family members affected by functional gastrointestinal disorders like irritable bowel syndrome. This series is accessible at the following link: UNC Expert Update.
This month’s video,”What Parents Need to Know About Their Children’s Abdominal Pain,” is presented by Miranda van Tilburg, Ph.D, Associate Professor of Medicine at UNC and a leading researcher of irritable bowel syndrome and functional abdominal pain, especially in children and adolescents. Functional abdominal pain (FAP), also known as recurrent abdominal pain (RAP), is a diagnosis similar to IBS, but without disturbances in bowel habits that are characteristic of IBS. This specific video is less than 20 minutes long.
Expert Update allows people affected by functional GI and motility disorders or their families to ask questions of and give feedback to leading professionals in the field associated with UNC and other major research centers. Each monthly video is no more than 30-40 minutes in length, and available for viewing free of charge by anyone in any country who has an Internet connection fast enough for streaming audio and video. Viewers may then 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.
Obviously, the professionals involved in Expert Update 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 and understandable way.
This month’s topic is a tremendous and unique opportunity for parents or guardians of children or teens with chronic abdominal pain resulting from IBS, FAP or another functional gastrointestinal disorder. Please consider taking less than half an hour of your time in order to learn scientifically accurate, state of the science information that may help your child and family.
IBS Impact 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.
For more detailed background on the UNC Expert Update series, please see the October 3, 2014 post. For further resources specific to parents and children or teenagers who are dealing with IBS or FAP/RAP, please see the April 11, 2012 and June 27, 2014 posts and the IBS Impact main website’s page on IBS and children. Readers in the United Kingdom may be interested in the many country-specific links at the blog Abominable Abdominal,written by a parent of a preteen diagnosed with FAP and coeliac disease.
American Gastroenterological Association 2014 Guidelines for Irritable Bowel Syndrome (IBS) Medications PublishedNovember 22, 2014
Earlier this month, the November 2014 print edition of Gastroenterology published an article entitled, “American Gastroinenterological Association Institute Guideline on the Pharmacological Management of Irritable Bowel Syndrome.” The article was previously released in online format in September.
The four authors were David S. Weinberg, MD, MSc, Director of Gastroenterology at Fox Chase Cancer Center in Philadelphia, Walter Smalley, MD of the VA Tennessee Valley Healthcare System, Vanderbilt University, Joel J. Heidelbaugh, MD, of the University of Michigan at Ann Arbor, and Shahnaz Sultan, MD, MHSc of the Department of Veterans Affairs Medical Center North Florida/South Georgia Veterans Health System, University of Florida at Gainesville, and Minneapolis Veterans Affairs Health System, University of Minnesota at Minneapolis. They based their article on the work of the AGA Institute Clinical Guidelines Committee, which consisted of eleven additional gastroenterologists associated with nine different academic medical centers in the United States and Canada. The AGA technical review for these guidelines, addressing methods and possible biases in the various studies and providing additional details and commentary on the results, was authored by Lin Chang, MD of UCLA, Anthony Lembo, MD of Harvard Medical School and Beth Israel Deaconess in Boston, and Dr. Sultan.
The AGA’s new official guidelines focus on the use of nine common medications or classes of medication commonly used for the treatment of IBS with diarrhea (IBS-D) and IBS with constipation (IBS-C) in adults in the United States. There are no current medications available that are specifically aimed at treatment of IBS with alternating or mixed subtype (IBS-M). The report is not intended to address the treatment of children with IBS, nor non-medication options for adults such as diet, fiber, exercise, psychological therapies, complementary medicine, etc.
The guidelines are based on reviews of the scientific evidence thus far in multiple large randomly controlled trials for each medication or class of medications. The committee used standard procedures and best practices for its review, and assigned either a “strong” recommendation or “conditional” (weak) recommendation. By a “strong” recommendation, the committee deems the strength of evidence such that most people with IBS would likely desire to try this medication, that they would probably not need a significant amount of guidance to make a decision, that most medical professionals would find it appropriate to recommend to most people with the given IBS subtype, and that on a policy level, these medications could be considered a good quality standard of care in most situations. By a “conditional” recommendation, the committee concludes from the strength or weakness of evidence, that many people with IBS would likely desire to try a given medication but many others would not. For these medications, people with IBS and their physicians would have to take a more active role in “shared decision making” to determine if the specific medication is appropriate for the individual and consistent with his or her values (such as preferring to avoid side effects or extra out of pocket expenses, etc.) For these “conditional” recommendations, the guidelines state that further discussion among various stakeholders in the IBS community is necessary before adoption of major policy changes.
In all cases, the recommendations are “over no drug treatment,” meaning better than no treatment. There has been no apparent attempt in these recommendations to rank medication options in relation to each other. More details are available at the links to the article and the technical review, both of which are also downloadable in PDF format. Based on this work, the AGA now recommends as follows:
Linaclotide for IBS-C (Brand name Linzess in the United States and Canada, Constella in Europe): High quality evidence and strong recommendation by the committee. The article notes, however, that for those people concerned about costs or about the possible side effect of diarrhea (in a relatively small subset of study volunteers), they may prefer alternatives.
Lubiprostone for IBS-C (Brand name Amitiza): Moderate quality evidence and conditional recommendation by the committee. The article notes that there are few side effects, but those concerned about costs may prefer alternatives.
PEG (polyethylene glycol) laxatives for IBS-C: Low quality evidence and conditional recommendation by the committee. However, the article notes that there are few side effects and minimal costs associated with this class of treatment.
Comment by IBS Impact: The AGA article does not specify PEG laxatives that were reviewed, but as clarification for readers of this blog, one common brand name available without a prescription in the U.S. is Miralax.
Rifaximin for IBS-D (Brand name: Xifaxan): Moderate quality evidence and conditional recommendation by the committee. According to the article, side effects are relatively few, but the cost may be high.
Comment by IBS Impact: Please note that this medication is still undergoing the FDA approval process. In 2011, the FDA responded to a first application with a request for additional studies. At that time, the FDA expressed concerns, as some functional GI professionals continue to do, about the long-term effects of repeated use and possible eventual antibiotic resistance. Following additional promising results by Salix, the pharmaceutical company producing rifaximin, the FDA accepted a second application for review in September 2014. According to IFFGD, the FDA’s decision on rifaximin is expected by the end of February 2015. (Scroll down to “FDA Considers Rifaximin for Treatment of IBS-D.”)
Alosetron for IBS-D (Brand name Lotronex): Moderate quality evidence and conditional recommendation by the committee.
Comment by IBS Impact: Please note that this medication, intended only for extremely severe IBS-D that cannot be managed by other means, is currently available in the United States only under FDA-restricted status because of past history of severe side effects or death in some people. At this time, FDA approval is for adult women only, as there is insufficient evidence that it is effective in most men studied, and to our knowledge, this has not been researched in children.
Loperamide for IBS-D (Brand name Immodium, available in the U.S. without a prescription): Very low quality evidence and conditional recommendation from the committee. The article notes, however, that this medication is inexpensive, readily available over the counter, and may help reduce stool frequency, but is not effective for global IBS symptoms.
Tricylic anti-depressants: Low quality evidence and conditional recommendation from the committee. The article notes that this treatment is relatively low cost, but may cause disruption in the QT interval (a potentially serious cardiac problem) in some people.
Comment by IBS Impact: The AGA article does not specify which tricyclics were reviewed, but as clarification for readers of this blog, some examples of common tricyclics, by generic and U.S. brand names, are amitriptyline (Elavil), desipramine (Norpramin) imipramin (Tofranil), and nortriptyline (Pamelor).
Selective serotonin reuptake inhibitors (SSRIs), a different class of antidepressants: Low quality evidence and conditional recommendation from the committee. The article states that the risks of this treatment are low. However, from a total of 9 randomly controlled trials that the committee reviewed, they concluded there was no significant improvement in global symptoms or in abdominal pain specifically. Of all of the medications or classes of medication covered in these guidelines, this is the only category that the AGA now “recommends against.”
Comment by IBS Impact: This is an interesting result, as research has shown that IBS is partly the result of abnormalities in serotonin signaling and transport, and SSRIs, up until now, have generally been considered by GI professionals to be reasonable options for IBS. Again, the article does not state which SSRIs were reviewed, but as clarification for readers of this blog, some examples of common SSRIs by generic and U.S. brand names, are citalopram (Celexa), escitalopram (Lexapro), fluoxetine (Prozac), paroxetine (Paxil) and sertraline (Zoloft).
Antispasmodic (anticholinergic) medications: Low quality evidence and conditional recommendation from the committee. The article states that overall, 22 randomly controlled trials reviewed showed significant symptom improvement and few serious risks of treatment, but the overall quality of evidence is low due to differences in method, continuous versus as-needed use, publication bias and other differences. In addition, not all of the specific medications in the studies are available in the United States.
Comment by IBS Impact: Once again, the AGA article does not state which antispasmodics were reviewed, but as clarification for readers of this blog, some examples of common antispasmodics, by generic and U.S. brand names, are hyoscyamine (Levsin) and dicyclomine (Bentyl).
Gastroenterology professionals may be interested in an AGA online webinar on this subject with Dr. Chang and Dr. Sultan on December 16, 2014 from 12:00 noon to 1:00 pm Eastern time. Information and a link to the registration page can be found here. http://www.gastro.org/journals-publications/news/aga-s-new-ibs-guideline
Readers may recall that this blog reported on new evidence-based reviews from the American College of Gastroenterology as well on August 10, 2014. To clarify possible confusion, these are two separate U.S. national professional organizations. While many aspects of their reviews and guidelines overlap and many gastroenterology professionals are members of both, AGA and ACG’s respective reports are not the same.
IBS Impact appreciates the work of the AGA Clinical Guidelines C0mmittee, the named authors of the published article and technical review, and the AGA. Peer review is important to the scientific process and future advances. The availability of this document provides additional guidance to health care professionals and 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.
Book Review: The Everything Guide to the Low-FODMAP Diet: A Healthy Plan for Managing IBS and Other Digestive DisordersNovember 17, 2014
Over the past several years, there has been increasing interest in the international digestive disorders community in the low-FODMAP diet for controlling gastrointestinal symptoms. It was first developed in the late 1990s by Susan Shepherd, PhD, Peter Gibson, MD, and Jacqueline Barrett, PhD of Monash University in Australia. At first, it was mostly known in that region of the world, but as promising peer-reviewed evidence for its effectiveness in reducing symptoms for many people with IBS has accumulated over time, IBS professionals in other countries and continents have begun to take notice, and in some cases, recommend the diet to their patients. While there have been many types of IBS diets suggested by various sources over the years, to date, the low-FODMAP diet is reportedly the only one with this level of peer-reviewed evidence thus far.
Given this development, there has been an explosion of blogs, books and other resources in various countries that are devoted to the topic. Recently, IBS Impact was invited to review one of the newest books, The Everything Guide to the Low-FODMAP Diet: A Healthy Plan for Managing IBS and Other Digestive Disorders by Barbara Bolen, PhD and Kathleen Bradley, CPC (Adams Media: 2014).
Dr. Bolen is a psychologist and health coach in private practice in the Long Island region of New York, and a health writer with particular interest and experience in IBS and other GI conditions. For many years, she has been the IBS Guide for About.com. She is also the author of Breaking the Bonds of Irritable Bowel Syndrome: A Psychological Approach to Regaining Control of Your Life (New Harbinger Publications: 2000) based on cognitive behavioral therapy techniques shown to be effective for many people with IBS. She is co-author, with Jeffrey D. Roberts, of IBS Chat: Real Life Stories and Solutions (iUniverse: 2007). Ms. Bradley is a recipe developer, consultant, and certified professional coach whose writing has appeared in various health, food, and cooking publications. She has also disclosed on the book’s website and for related media articles that she is a person with IBS who has successfully reduced her symptoms with the low-FODMAP diet.
The Everything Guide to the Low-FODMAP Diet is 288 pages long. Similar to Dr. Bolen’s About.com blog, it is written in a scientifically accurate but non-technical language that is easily accessible to most readers who may not have a scientific background. Throughout the book, points or common questions considered particularly important are set off from the main text in shaded boxes to catch the reader’s attention. The table of contents and index are clearly laid out to make it easy to find specific topics quickly, and the fonts are relatively readable, with the section headings throughout the book in a larger, bolder typeface than the rest of the text.
The first chapter includes a brief overview of the digestion process and the nature of IBS and a fuller discussion of the meaning of the acronym FODMAP, what foods fall into each of the categories, how some or all of them, according to research, may cause increased symptoms for many people with IBS, and the theory behind removing or reducing them in one’s diet. The authors mention hydrogen breath testing, for which some researchers have disputed the level of accuracy, SIBO (small intestine bacterial overgrowth), which appears to coexist with some cases of IBS, but is still controversial as to how it relates to IBS, “leaky gut,” which is similarly still debated, and fiber, which, for many years, doctors considered a first recommendation for IBS, but many people with IBS report actually exacerbates their symptoms.
The second chapter of the book briefly covers the differences between IBS and food allergies or genetic food intolerances, celiac disease, and non-celiac gluten sensitivity, other common types of treatment and management strategies commonly recommended for IBS, low-FODMAP for other types of digestive disorders, the pros and cons of partially following the diet if one feels one cannot stick to the full elimination of high-FODMAPs, and advice for using low-FODMAPs with children. Here, the authors caution that it is especially important to have medical supervision to ensure the child’s proper growth and development. Further discussion of youth-related issues can be found later in the book, including how to involve the child in the diet and alert other adults who may interact with the child. such as relatives, or staff at school or other activities. The authors add another caution that low-FODMAP research specifically on children and youth is less plentiful and established than with adults.
The third and fourth chapters cover preparation for and the actual phases of the diet, including shopping, accommodating the dietary preferences of others in the same household who may not need or wish to join in following a low-FODMAP diet, lists of low-FODMAP and high FODMAP foods in each category, elimination of foods, tips to increase success, step by step suggestions for the challenge phase in which one reintroduces individual foods gradually to test level of tolerance, and other possibilities and suggestions if the diet does not help.
Unsurprisingly, given Dr. Bolen’s background as a psychologist, the authors helpfully address possible emotional frustrations about IBS symptoms or restrictions on perhaps enjoyable foods, or possible slip-ups with the diet. They devote the entire fifth chapter to common sense practicalities of living on a low-FODMAP diet, such as eating out in restaurants or others’ homes, traveling, discussing the diet and/or IBS with others, minimizing extra impact of the diet on one’s food budget, the additional challenges of being a vegetarian on a low-FODMAP diet, which may restrict many traditional vegetarian staples, and as previously mentioned, children and low-FODMAPs.
Chapters 6-16 contain 150 low-FODMAP recipes in the categories of Breakfast, Lunch, Soups, Sauces, dressings and rubs, Pasta, Beef, pork and poultry, Fish and shellfish, Vegetarian sides, salads and mains, Desserts, Snacks and Drinks. They appear to be relatively simple to prepare, and the authors state that they attempted to use easily available low-FODMAP ingredients. When appropriate, the recipes include basic nutritional information, definitions, or FODMAP-specific details. The book’s appendices include a sample menu plan, the authors’ sources, a standard U.S.-metric conversion chart for international readers to use when trying the recipes in the book, as well as a page of selected other resources for IBS and low-FODMAPs.
Overall, the information in The Everything Guide to the Low-FODMAP Diet appears to be scientifically accurate, balanced and up-to-date as of its publication date of 2014. The advice is generally consistent with the multidisciplinary, biopsychosocial approach advocated by functional GI experts. The authors are careful to emphasize that, as always, readers with IBS, or those shopping and cooking for family members with IBS, should consult their own physicians and/or dietitians experienced in the low-FODMAP approach to ensure proper diagnosis of IBS and/or another GI disorder, and that the diet is an appropriate and nutritionally balanced option for a given individual’s situation and any other medical needs. The authors also state correctly that, like every other existing IBS intervention, individual responses to the diet, if any, will vary, as will the particular foods or amounts to which specific people with IBS are or are not apparently sensitive. While this approach has been helpful to many, it is a management strategy, not a cure, and it is impossible for Monash University or any other research lab to analyze every food or every product brand available in every country and circumstance at any given time. Research and information on this topic will continue to evolve in the future. The Monash researchers themselves emphasize, and Dr. Bolen and Ms. Bradley repeat, that total elimination of all high-FODMAP foods is not recommended as a lifetime diet, as many are nutritious foods. The elimination phase is simply meant to assist people in identifying scientifically what their individual sensitivities and tolerances might be to various FODMAP components, so that they can design personal eating patterns that have a high chance of reducing their own IBS symptoms.
The Everything Guide to the Low-FODMAP Diet covers a great deal of varied information on this particular management option and its practical and social aspects in a very readable and understandable format. IBS Impact encourages blog readers who are considering the low-FODMAP diet to obtain a copy, which appears to be readily available in both paperback and Kindle e-book formats. We agree with the authors that if one chooses to try the diet, it should be in consultation with one’s own health care providers. This book is not intended as a comprehensive resource on IBS in general, so the explanations of what IBS is and the range of current treatments and areas of research are very brief. Readers who are relatively new to IBS should be aware of this, and not consider the book their only source of information. We encourage people with IBS and their families to continue to read and learn widely from reputable, scientifically accurate sources, such as the ones listed in the “Additional Resources” section of the book, Dr. Bolen’s About.com blog, the authors’ Everything Low-FODMAP website, Monash University’s own low-FODMAP pages and links, and the many IBS-related links on this blog, the various pages of IBS Impact’s main website, and IBS Impact’s social media
Although IBS Impact received a copy of this book from Dr Bolen for our reference, we receive no funding for this review or for any sales of the book. The observations and phrasing expressed here are original, independent, and not dictated in any way by either of the authors or any publicist. 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 advocacy, and assisting blog readers dealing with IBS to make informed choices for themselves or their families.
Today, November 11, is Veterans Day in the U.S., and a good time to highlight veterans’ issues. U.S. veterans and current military service members who have been deployed in the Persian Gulf/Southwest Asia region at any time since 1990 have been shown by multiple studies to be at even higher risk of IBS and other functional GI disorders than the general population. Conservative estimates put the incidence of functional GI disorders in the general population as 25%, most commonly irritable bowel syndrome. For veterans and military service members of the Persian Gulf era, the estimate may reach as high as 40%. This appears to be in part because of the high incidence of known functional GI risk factors during active duty, such as severe stress or trauma and/or food or water contamination that results in post-infectious IBS (IBS-PI) or other post-infectious functional GI and motility disorders.
Here is IBS Impact’s August 12, 2011 post on the recognition three years ago by the U.S. Department of Veterans Affairs of irritable bowel syndrome and functional gastrointestinal disorders as presumptive service connected disabilities for Gulf War veterans.
IFFGD and its grassroots arm, the Digestive Health Alliance, have done considerable work in the past few years in advocating for federal funding and other legislative needs specific to veterans, conducting outreach to service members and veterans and encouraging those affected by functional GI and motility disorders to participate in veteran-specific self-advocacy efforts. Since fiscal year 2012, functional GI disorders have been included in the Department of Defense Gulf War Illness Research Program, which is part of the Congressionally Directed Medical Research Program. However, advocacy from the veteran community and supporters must occur on an ongoing basis for funding to be continued each fiscal year. As of July 2014, the Senate Appropriations Committee had approved funding for fiscal year 2015 as part of a Department of Defense appropriations bill that then was to move to consideration by the full Senate.
As this blog reported on January 20, 2014, the depth of need for further awareness, services, support, and research in the veteran community is not necessarily well known even within the Department of Defense or other military entities, the media or the general public. The post linked in the second paragraph of this post about the recognition of IBS and other functional GI disorders as presumptive service-connected disabilities, more than three years after original publication, has continued to receive consistent hits from readers nearly every day. By an extremely wide margin, it has been the #1 most read individual post, of over 180 posts covering nearly four calendar years since the inception of this blog. It has also been the #1 most read post for each individual year. Clearly, a very strong need exists for information and resources on this topic. It is hoped that given the relatively higher impact of functional GI disorders among veterans and service members, and their relatively higher profile as a constituent group, any advances on behalf of the affected veterans and service members will eventually carry over to people with functional GI disorders in general.
IBS Impact encourages veterans, service members and families in the IBS and functional GI community, as well as those who support them, to familiarize themselves with the issues and resources, and to consider participating in self-advocacy activities. We look forward to feedback from readers as to how IBS Impact may be able to support such efforts further.
As many people with irritable bowel syndrome are aware, finding medical and mental health providers who are highly experienced and up to date about IBS and other functional gastrointestinal and motility disorders, as well as sufficiently aware of and empathetic about the various physical, emotional and social aspects of living with such conditions can be a challenge. Many people with mild to moderate and/or sporadic symptoms are adequately served by primary care physicians or general gastroenterologists, and IBS is one of the most common diagnoses seen by these doctors. However, those with moderate to very severe and/or constant symptoms may benefit from providers who specialize in and/or research IBS, or a more comprehensive approach that includes mental health care, professional advice on dietary modifications, or other health services. Some people with IBS are fortunate to live near a major research center for functional gastrointestinal and motility disorders or commonly overlapping, similarly complex chronic pain conditions. Most are not, and find such resources few and far between, or impractical or inaccessible because of distance, finances, insurance, inconvenient office hours, or other factors. This can be true even in major cities with multiple teaching hospitals and plentiful clinics or other resources for other chronic health conditions. Even if an individual finds one or more appropriate physicians, psychologists, dietitians, etc. in his or her area, not every professional is a good fit for every patient or client. Research shows that people with IBS tend to do better with providers whom they trust.
As such, this week, this blog highlights some of the resources offered by or suggested by reputable IBS or gastrointestinal organizations or entities in several countries where we have significant readership. Some are specific to IBS or functional gastrointestinal disorders. Some are more general.
The International Foundation for Functional Gastrointestinal Disorders (United States)
The IFFGD care locator includes separate search functions for the United States, international and specialty, and includes a variety of professionals who have expressed an interest or specialty in functional gastrointestinal and motility disorders. These listings are submitted by the professionals themselves or suggested to IFFGD by satisfied patients. The page also includes a link to an online form to submit new professionals for consideration.
Gastrointestinal Society /Canadian Society of Intestinal Research (Canada)
The links page below includes two sections of relevance to this post. These are not necessarily specific to IBS. One is “Diet and Nutritional Information”, which, among other resources, lists Dietitians of Canada. The latter site is described as including a directory for those seeking a local dietitian. Also “How to Find a Doctor/Gastroenterologist” lists links to physician databases in each province of Canada. Scroll down the linked page below to find these sections.
The IBS Network (United Kingdom)
The links page includes two links for a Counseling Directory and Find A Therapist for U.K. residents to find accredited mental health professionals. Again, listings are not necessarily specific to expertise in psychological interventions to treat IBS, and potential patients or clients should ask the professional or his or her staff about this if it is a specific concern or goal of treatment.
Monash University Low FODMAP Diet for Irritable Bowel Syndrome blog (Australia)
This is the official blog of the researchers at Monash University who originated the low FODMAP diet as a possible management option for IBS. The November 3, 2014 post this week suggests links to dietetic associations and directories in Australia, Canada, New Zealand, South Africa, the United Kingdom and the United States.
The above resources are not meant to be an exhaustive list. Readers are invited to comment on this post and suggest possible additions, which may be added to IBS Impact links or future posts if they appear useful, reputable and evidence-based. Listing in a directory linked on this page does not imply endorsement of specific professionals by any of the IBS or gastrointestinal organizations or entities mentioned above or by IBS Impact. Please use these links only as a starting point. Consider verifying credentials, asking for references from existing medical providers or trusted relatives, colleagues or friends who may have used a local provider, interviewing a provider or his or her staff, and other means to make the most informed decisions for yourself or your family member with IBS.
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.