IBS Awareness Month 2017: Approaching a Decade of IBS.

April 30, 2017

by Nina Pan, IBS Impact founder and primary blogger for IBS Impact.

Four years ago, on April 24, 2013, I wrote a post for IBS Awareness Month that began with some reflections on my personal experiences with IBS, as well as my motivations for IBS Impact. At that time, I had been living with IBS for over five years, and 2013 marked my sixth April with IBS. I observed how for many of us, dealing with the numerous actual or potential effects on a day to day basis often makes it difficult to recognize when progress is being made, either for us as individuals, or for the IBS community as a whole. I stated that it is only with the passage of time that I had begun to realize how some things are indeed changing, albeit slowly, for the better. In the rest of the post, I pointed out numerous areas in IBS research, IBS treatment, understanding of the impact of IBS on quality of life, increased societal support and advocacy that had seen concrete, positive change in just the five years and six IBS Awareness Months I had personally experienced.

 On April 10, 2014 ,  April  14, 2015, and April 29, 2016, I reported in a similar vein on progress for the IBS community in each respective year. Now, continuing the tradition during my own ninth year and tenth IBS Awareness Month, once again, I can observe small steps forward in just a single year.

Progress in the science of IBS:

In the past year, the science of IBS has continued to expand in many areas, from diet, to gut microbiota, to understanding of the visceral hypersensitivity responsible for pain, to stigma, and the effect of parental response on children with functional abdominal pain  and many other topics. These varied endeavors are taking place in or with the involvement of many scientists from many countries. See other posts in the Research category of the blog sidebar or our Facebook or Twitter feeds to see the range of research news and clinical trial opportunities publicized over the most recent several months. The annual Digestive Disease Week international gastroenterology conference taking place shortly in May traditionally provides even more state of the science research news each year.

Progress in the diagnosis and treatment of IBS:

 Over the past two and a half years, this blog has often reported on the development of Rome IV criteria, the latest update to the international symptom-based diagnostic criteria for functional gastrointestinal disorders like IBS, which was officially published and presented to the international gastroenterology community in May 2016.  This latest update reportedly involved over 100 experts from numerous countries. The Rome criteria, which are said by leading IBS researchers to be 98% accurate for most people with IBS symptoms, have been in existence in some form for 26 years, although research shows that many people with IBS and medical professionals who do not specialize in IBS remain unaware of this.

In addition to some changes in symptom criteria, Update on Rome Criteria for Colorectal Disorders: Implications for Clinical Practice,” by Magnus Simren, MD of the University of Gothenburg in Sweden, Olafur Palsson, PsyD and William Whitehead, PhD of the University of North Carolina Center for Functional GI and Motility Disorders in the U.S., published this month in Current Gastroenterology Reports, notes that the Rome IV is attempting to encourage a transition from the more stigmatizing “functional GI disorders” to a “disorders of gut-brain interaction,” which is more reflective of current understanding of IBS and related disorders, some of which include functional diarrhea, functional constipation and  centrally mediated abdominal pain (functional/recurrent abdominal pain) among others affecting the lower or upper GI tract.  In addition, the authors state that, “Therefore, in Rome IV it is emphasized that functional bowel disorders constitute a spectrum of GI disorders rather than isolated entities. It is acknowledged that, even though they are characterized as distinct disorders based on diagnostic criteria, significant overlap exists, and occasionally, it may be difficult to distinguish them as distinct entities. Furthermore, it is also highlighted that transition from one functional bowel disorder to another, or from one predominant symptom to another, is frequently seen, and this may occur as part of the natural course of the disorder, as a response to therapy, or both.”

As this blog reported on October 11, 2015,  Rome IV guidance also includes a new Multidimensional Clinical Profile which, for the first time, takes into account common extraintestinal (non-GI) symptoms and other psychological and social factors that may influence care. It is hoped that all of these changes will provide better diagnosis and treatment for people with IBS worldwide, and new opportunities for education of medical professionals in disorders of gut-brain interaction.

Several investigational medications and other non-pharmaceutical treatment options are always in the research pipeline in various parts of the world. Eluxadoline (brand name Viberzi), already in use in the United States, was approved by Health Canada in March 2017. According to Canadian contacts, the timeline for availability depends on provincial decisions.

 Progress in understanding the impact of IBS and the barriers that remain:

As this blog reported on January 29, 2017, in December 2016, the Gastrointestinal Society released its report on a year-long survey on experiences and opinions and needs of adults with IBS and parents of children with IBS across Canada. The results are intended to shape future GI Society programs and to advocate and educate health care providers, policymakers and community members about IBS. A five-question followup survey, open to previous and new participants, is still accepting responses at this time. The link to both the report and the follow-up are in the linked January post.

Progress in societal supports for people with IBS:

The IBS Network in the United Kingdom made great progress this past year in its ongoing efforts to support and expand the availability of local, in-person self-help/support groups for people with IBS in the UK. as reported by this blog on October 23, 2016 and January 13, 2017.

Although the Irritable Bowel Information and Support Association (IBIS) in Australia closed this year, the administrators of the IBS Support Facebook group, of which I am one, were pleased to be recognized as one of the two alternative resources IBIS suggested on its remaining web page. This international, evidence-based educational group is currently administered by 9 individuals from 4 countries, all of whom have had IBS for many years, and are highly knowledgeable from formal professional education and experience and/or many years active in the IBS community. At this time, membership is over 27,000 and grows by about 1000 members each month.

Monash University in Australia, developers of the low-FODMAP diet that is effective for reducing symptoms for many people with IBS, continues to test specific foods and product brands in several countries, in some cases, leading to revision of its previous recommendations.  It also adds new countries as research and resources permit. In late March of this year, Dutch foods were added to the app, allowing those in the Netherlands to use it more easily. Monash also has a low-FODMAP certification program, whereby food product manufacturers whose products have been tested by Monash as appropriate for the diet, may display an official certification symbol to alert consumers. The number of products currently certified is small, but growing Previously, the only manufacturers listed were in Australia or New Zealand, but there have been recent additions in the U.S. and Canada as well.

Progress in advocacy and awareness:

The International Foundation for Functional Gastrointestinal Disorders has  continued to shepherd the Functional GI and Motility Disorders Research Enhancement Act through its fourth attempt at passage by the U.S. House of Representatives, with the support of IBS Impact and other groups and individuals. After three previous attempts in the three previous Congresses,  it  was reintroduced in the the current 115th Congress under a different Act number, HR 1187, in March 2017 and has received bipartisan support from Representative.  See the Legislation category, HR 1187,   HR 2311 HR 842 and HR 2239 subcategories in the right sidebar of this blog for more on this history of this important Act.  IFFGD has also been an ongoing advocate for veterans, who are disproportionately at risk for functional gastrointestinal disorders like IBS.

IBS Impact once again completely redesigned and updated its main website in December 2016 and continues to make incremental updates and improvements several times a year.  The number of followers of this blog and our social media accounts continues to increase. Largely due to the release of the Rome IV criteria in May 2016, overall hit counts average 300-400% higher than prior to Rome IV and have remained in the new range almost one year later. A Rome IV post has now displaced the August 12, 2011 post on IBS being added to service-connected disabilities for Gulf-era U.S. veterans as the most popular post in the history of this blog, a status the previous post held from 2011-2015. Cumulatively, IBS Impact now reaches readers in over 130 different countries and territories on every continent of the globe.

These are just a handful of examples of progress for the IBS community in the past year. Cumulatively, there are many more. Obviously, we still have very far to go before all people with IBS have all the medical and social supports that we need for fully productive lives, with or without IBS,  but we have come far as well. There are reasons for hope, especially if more of us do our part for self-advocacy and awareness in the years and IBS Awareness Months to come.


Free Online Webinar for IBS, Functional GI Disorders with Dr. Drossman, “Achieving Effective Patient-Provider Communication” on April 24, 2017

April 17, 2017

The American College of Gastroenterology has announced that for IBS Awareness Month, it will be sponsoring a free online webinar presented by Douglas Drossman, MD, MACG  and one of his patients, Katie Errico on “Achieving Effective Patient-Provider Communication.” The webinar will take place on Monday, April 24, 2017 from 8:00-9:00 p.m. Eastern time. The webinar is designed specifically for people with irritable bowel syndrome and/or other functional gastrointestinal disorders.

Dr. Drossman, a leading, internationally-known expert on IBS, functional gastrointestinal disorders, doctor-patient relationships and the biopsychosocial approach to medical care, is President of the Drossman Center for the Education and Practice of Biospsychosocial Care, President of the Rome Foundation, Professor Emeritus of Medicine and Psychiatry at the University of North Carolina at Chapel Hill, retired co-director of the University of North Carolina Center for Functional GI and Motility Disorders and a longtime board member of the International Foundation for Functional Gastrointestinal Disorders,  along with many other pivotal roles in the development of the field of functional gastrointestinal disorders like IBS over his 40+ year career.

To participate in the webinar, please use the link to register. You will need to provide ACG with your full name and email address so that instructions for accessing the webinar on the scheduled date can be sent to you. It is open to anyone in any geographical location who has Internet access fast enough to handle streaming video, audio and chat technology. You will be able to ask questions after the presentation. Please keep in mind that Dr. Drossman cannot diagnose or treat anyone over the Internet, and depending on the number of participants and questions, he and Ms. Errico may or may not be able to get to every question.

“Achieving Effective Patient-Provider Communication” online webinar with Dr. Drossman, April 24, 2017

This is a tremendous and rare opportunity, especially for people with IBS or their loved ones to hear from and communicate directly with one of the world authorities and pioneers in the research, education and treatment of IBS. IBS Impact thanks ACG for making this webinar possible. We also thank Dr. Drossman for taking time out of his busy schedule to make himself available to the general public, and for his long decades of commitment to making functional gastrointestinal disorders like IBS a serious field of medical research and to supporting and treating many who live with these complex conditions.

 

 


Resources for People with Irritable Bowel Syndrome (IBS) in Australia 2017

February 16, 2017

It has come to the attention of IBS Impact that the Irritable Bowel Information and Support Association (IBIS), a national organization in Australia for many years, apparently ceased operations recently. As IBS Impact sites receive many visitors from Australia each year, some have wondered about other good quality, accessible, evidence based-resources for IBS information, support and research, both within Australia and internationally. Below are several suggestions. This is not meant to be an exhaustive listing, but a place to start.

As many people in the IBS community for some time are aware, the low-FODMAP diet for IBS was developed by Monash University researchers almost two decades ago, and in the past several years, has increasingly caught on internationally as an effective symptom management option for many people with IBS. At this time, it is the only IBS diet with significant academic research evidence for helping 70% or more of those who try it to reduce their symptoms. There are now many low-FODMAP resources and low-FODMAP- trained professionals in various countries available, but their information is derived from Monash, or other sources who derive from Monash, whose department of gastroenterology continues ongoing research and refinement of the diet and related resources.

Monash maintains a blog and active social media, and regularly updates an international app, downloadable for  a modest cost, to assist users of the diet in identifying levels of various FODMAP components in listed foods, as well as acceptable serving sizes. It is IBS Impact’s understanding that the money goes back to funding further FODMAP research.  In Australia and New Zealand, a Monash low-FODMAP certification process is available for some packaged food products. On an ongoing basis, the gastroenterology department recruits local people with IBS to volunteer for clinical trials, and in the past, it has suggested the following online directory from the Dietitians Association of Australia to find an Accredited Practising Dietitian experienced in gastrointestinal disorders or other specific medical concerns. Monash’s information and resources on IBS and the low-FODMAP diet are extensive and state of the science.

Another up-to-date, scientifically reputable IBS site within Australia, IBSClinic.org.au,is supported by the Swinburne University of Technology, Royal Melbourne Hospital and St. Vincent’s Hospital, Melbourne and maintained by Dr. Simon Knowles, Clinical Psychologist and Senior Lecturer at Swinburne, with listed contributions from or references to many IBS professionals associated with the above entities or other leading IBS research centers in Australia and elsewhere. The site includes information on causes, medical examinations, treatments, psychological symptoms, general advice for affected adults, affected teens and family members without IBS, a range of IBS-specific and general links within and outside of Australia (IBS Impact thanks the site for an unsolicited link to our main website!), and finally, a password-protected set of free, downloadable validated programs combining mindfulness and cognitive behavioral therapy techniques. Psychological interventions also have well-established international evidence for helping reduce the symptoms, often long-term, of the majority of people with IBS who try them.

The University of Newcastle, Macquarie University, University of Sydney, and the University of Adelaide are other Australian universities known to be active in some aspects of IBS research, either currently or in the recent past.

IBS Impact is not aware at this time of Australia-specific support group options, but many of the online support resources listed on the links page of our main website are international. In its closure notice on its web page, IBIS-Australia suggests IBS Support  on Facebook, a closed, international, evidence-based group of over 25,000 members at this writing. Founded several years ago by a medical student with IBS, it is currently moderated by a team of 9 volunteer administrators from 4 different countries, all of whom have been adults with IBS for many years. In addition, several have educational and/or professional background in science or health care fields and/or education, while others have gained extensive knowledge from reputable sources and contacts over time. Two group administrators, including the IBS Impact founder, initiated and maintain established international, evidence-based IBS sites. The group encourages sharing of experiences and emotional support within group guidelines. Group administrators participate actively to educate members on the science of IBS and proven treatments to the best of current international research on IBS, discourage myths, misconceptions, quack cure scams, and as much as possible, maintain a safe and respectful atmosphere for participants from around the globe, including a substantial Australian contingent.  Thank you to IBIS-Australia for linking the group, unbenown to any group administrator until this week.

If any Australian readers would like to offer other in-country resources for IBS Impact’s consideration in future updates of our sites and social media, please comment here on the blog or contact us through the main IBS Impact website. We hope this information is useful.


Results and Followup to Gastrointestinal Society, Canada 2016 Survey on Irritable Bowel Syndrome (IBS)

January 29, 2017

About one year ago, on January 26, 2016, IBS Impact posted a national online survey invitation by the Gastrointestinal (GI) Society, also known as the Canadian Society of Intestinal Research. The GI Society asked adults with diagnosed irritable bowel syndrome and parents/caregivers of children with diagnosed irritable bowel syndrome from across Canada about experiences, opinions and effects of IBS, with the intention of using the results to shape the organization’s programs, as well as future community awareness and advocacy among health care providers and policy makers and the general public.

Last month, the GI Society posted a report, Gastrointestinal Society 2016 Survey Results: Irritable Bowel Syndrome (IBS), which is available for download in PDF format from the link. Some highlights include the following:

There were a total of 2961 responses from all provinces and territories of Canada, approximately proportional to population. 2505 participants responded in English and 456 in French from the organization’s French-language mirror site. 86% of respondents were female, 14% male. 90% were between the ages of 30-69.

53% had had IBS for more than 10 years. 41% reported IBS-M (mixed subtype, formerly referred to as IBS-A for alternating), 35% IBS-D (diarrhea-predominant subtype), 18% IBS-C (constipation-predominant subtype) and 6% unsure. In a question rating pain in the previous 3 months on a 1-5 scale with 1 as no pain, and 5 as the worst pain, 4% chose 1, 20% chose 2, 39% chose 3, 28% chose 4 and 9% chose 5. Respondents were also asked to rate other common IBS symptom severity as never experience, mild, moderate, and severe.

According to the report, fewer than half of respondents have seen a gastroenterologist. Those who have consulted doctors for IBS mostly see general practitioners. 26% reported not seeing a doctor for IBS at least once a year. Of the remainder, the largest subgroups reported 1-2 visits or 3-5 visits. Small percentages in the single digits each reported 6-10 visits or 11 or more visits. 12% stated they had been hospitalized for IBS. 62% use two or more medications or treatments regularly. 16% stated they cannot afford prescribed treatments and 26% that they can only afford some. Medications commonly used for IBS pain are sufficiently effective for only about one-third. Only 21% of survey participants describe their symptoms as under control, 45% somewhat under control, 34% no symptoms under control. The report notes that these results are similar to a 2015 nationwide survey by the American Gastroenterological Association in the United States, IBS in America.

Most of the GI Society’s respondents also indicate co-existing medical conditions and/or quality of life effects. 83% report the need to limit their diet. 71% report anxiety at least some of the time with 27%  reporting an anxiety disorder diagnosis. 32% have a mood disorder, 27% gastroesophageal reflux disease (GERD), 24% sleep disorders, 15% fibromyalgia. 76% state that IBS interferes with everyday activities at least some of the time. 37% overall state that in an average month they cannot leave their homes at least some of the time, with higher percentages in the IBS-D subset.  46% of respondents who are employed and/or are students report that they miss time from work or school in an average month due to IBS.

The report concludes that there continue to be unmet treatment and quality of life needs for many Canadians with IBS and that in particular, IBS pain needs improved treatment options, as that remains a significant symptom for most people with IBS that is significantly associated with decreased quality of life. The report also states that the time between symptom onset and diagnosis and diagnosis and relief of symptoms needs to be shortened. This may be possible through increased collaboration between patients and physicians.

The GI Society is asking those who responded in the original survey to participate in a five question online followup survey. The original survey is now completed and no longer available for new replies, but the GI Society also invites those who did not have the opportunity to complete the original survey to answer the followup. At this time, January 29, 2017, the followup questions are open at the original survey link. No closing date for responses is indicated. Please address any questions about this survey directly to the GI Society

http://www.badgut.org/ibs-survey/

IBS Impact commends the Gastrointestinal Society for its efforts to gather and publicize the views of its constituency. We encourage  Canadian readers with IBS or IBS-affected minor children to continue to express and advocate for their needs and desires to the organization and their health care and community services providers and national, provincial and local policy makers through the followup survey and other means. We hope that the survey results amplify and catalyze positive changes for the IBS community in Canada, and by extension, worldwide.

 


IBS Network in the United Kingdom Adds New In-Person Support Groups, January 2017

January 13, 2017

As reported by this blog on January 21, 2015 and October 23, 2016, the IBS Network, the United Kingdom’s national charity for irritable bowel syndrome, has been working over the past two years or so to increase local self-help support groups in England. Recently, IBS Impact became aware of three new groups that are scheduled to start this month with IBS Network support.

In addition to existing groups in London and the Leeds/Bradford area,  Alton, Durham and Newcastle Upon Tyne have  joined the list. Each group plans to meet monthly, but schedules and meeting locations vary. The IBS Network support group page gives further details.  IBS Impact suggests that interested people confirm directly with the group leader for the desired community, using the provided contact information, in case of any changes.

At this time, three one-day training dates in 2017 for potential support group leaders remain. The IBS Network welcomes both interested people with IBS and professionals to volunteer. At this time, the trainings will be held in Sheffield, at venues near the IBS Network office, but if there is sufficient interest, other locations will be considered. Based on details previously provided by the IBS Network,  one can anticipate a several hour event with breaks, for which IBS-friendly refreshments and lunch will be provided.

For further information, please see the same link above or contact Sam Yardy directly at sam@theibsnetwork.org

Over the years, including on January 12, 2015,  IBS Impact has written extensively about how in various countries, in-person support and other services for people with IBS and families in their own local communities tend to be hard to find. Either they don’t exist, unless one happens to live near a major functional GI research center, or if they do exist, enough people with IBS and health care or social service providers they may deal with simply do not know they are there. Fortunately, online resources for IBS information and support, some higher quality than others, are well-established means of communication, but even in the social media age, not everyone is comfortable online, and it remains difficult for many newly-diagnosed and veteran IBSers alike to sort through which sites and groups are reputable and useful and those that are not. Individuals differ, and even with the same individual, preferences, needs and logistical concerns may change in different circumstances or phases of life. IBS Impact advocates increasing a range of programs and means of reaching people so that people with IBS and families have choices, and is pleased for our readers in England that the options available to them are expanding.

For our readers elsewhere, please see the main IBS Impact website links page, last updated in December 2016, for some existing IBS organizations and online support groups in several English-speaking countries. Some have a country-specific focus, but many welcome international participation. Readers are also welcome to contact us  with new resources that may become available from time to time. Such suggestions will be given thoughtful consideration.


IBS Network in the United Kingdom Offers Free Training for In- Person Support Group Leaders

October 23, 2016

Over the years, including on January 12, 2015, IBS Impact has written extensively about how in various countries, in-person support and other services for people with IBS and families in their own local communities are very hard to find. Either they don’t exist, unless one happens to live near a major functional GI research center, or if they do exist, enough people with IBS and health care or social service providers they may deal with simply do not know they are there. Fortunately, online resources for information and support, some higher quality than others, are well established means of communication, but even in the social media age, not everyone is comfortable online, and it remains difficult for many newly-diagnosed and veteran IBSers alike to sort through which sites and groups are reputable and useful and those that are not. Individuals differ, and even with the same individual, preferences, needs and logistical concerns may vary in different circumstances or phases of life. IBS Impact advocates increasing a range of programs and means of reaching people so that people with IBS and families have choices.

This presents an ongoing challenge for our global IBS community that is likely to continue. However, as this blog also reported on January 21, 2015, the IBS Network, the United Kingdom’s national charity for irritable bowel syndrome, has been working to increase local support groups in England.

Recently, the organization has instituted a series of free one day training programs for those who may be interested in becoming IBS local support group leaders. The IBS Network seeks both health care professionals and people with IBS, and will provide appropriate resources and organizational support for these groups.

The first training date for October 2016 has already passed, but several more are planned through 2017. At this time, the trainings will be held in Sheffield, at venues near the IBS Network office, but if there is sufficient interest, other locations will be considered. Based on a draft schedule for the first session, one can anticipate a several hour event with breaks, for which IBS-friendly refreshments and lunch will be provided.

For further information, please see the following link from the IBS Network website or contact Sam Yardy directly at sam@theibsnetwork.org

https://www.theibsnetwork.org/self-help-groups/

IBS Impact encourages readers within easy traveling distance of Sheffield and time to volunteer for the IBS community to consider this important opportunity.


Are People with IBS in the U.S. Having Difficulty with Access to Certain Medications?

August 30, 2016

The pharmaceutical company Mylan has received intense negative publicity recently over significant price increases for Epipens, epinepherine autoinjectors for use in life-threatening allergic reactions. However, the University of North Carolina Center for Functional GI and Motility Disorders also shared on social media an NBC News article that claims many other Mylan-supplied prescription medications have also experienced significant price increases over time. These include dicyclomine (Bentyl), an antispasmodic used by many people with IBS  and metoclopramide (Reglan), a prokinetic commonly prescribed, among many other uses,  for  gastroesophageal reflux disease (GERD) and other gastrointestinal conditions that may coexist with IBS.  As both are generic drugs, each has several suppliers. Not all individuals using these medications receive them from Mylan, but as one generally has no control over the specific distributor used by a given pharmacy, this issue is a potential concern.

Also, a moderator of a large Internet support group passed along an August 12, 2016 blog post from the website GoodRx.com detailing the removal of numerous prescription drugs from the 2016 formulary lists of Express Scripts and Caremark. Express Scripts and Caremark are both companies that administer pharmacy benefits and mail-order pharmacy services for U.S. health insurance companies, self-insuring employers and in the case of Express Scripts, TRICARE, the insurance system for active, reserve or retired U.S. military personnel, some National Guard members, and military family dependents. The formularies are lists of specific medications approved for coverage. In the U.S.,health insurance is traditionally an employer-based benefit for the largest subset of citizens and residents, and typically,  employees have limited or no choice in the specific insurance plans offered to them and/or their families. Thus, again, one would most likely have no control over which of the two companies with which one’s insurance provider has a contract. From the linked lists, it appears lubiprostone (Amitiza), a chloride channel activator, which is FDA approved in the U.S. for use by women with irritable bowel syndrome with constipation (IBS-C), has been newly excluded from the Caremark formulary. Duloxetine (Cymbalta), a selective serotonin-norepinephine reuptake inhibitor is used by some people with IBS for pain and/or commonly coexisting depression and/or anxiety. It has also newly been dropped by Caremark. This issue would also appear to merit possible concern.

So IBS Impact asks U.S. readers, are these media reports consistent with real world experiences? Are people with IBS having problems getting access to medications they take regularly? If so, is either of these reported issues a widespread, systemic problem for individuals or certain subgroups in the IBS community? Please feel free to leave comments on this post.