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.


IBS Awareness Month 2016: How Far We Have Come and Have Left to Go

April 29, 2016

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

Three 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  for how 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  and April  14, 2015, I reported in a similar vein on progress for the IBS community in each respective year. Now, continuing the tradition during my own eighth year and ninth 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, this blog often noted open clinical trials in diverse areas of IBS,  such as diagnosis,  brain gut interactions, hormones, fecal microbiota transplants, and enzymes. 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.

Progress in the diagnosis and treatment of IBS:

 Over the past 16 months, 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. 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 25 years although research shows that many people with IBS and medical professionals who do not specialize in IBS remain unaware of this. As this blog reported on October 11, 2015,  Rome IV is expected to include a new Multidimensional Clinical Profile which, for the first time, will take into account common extraintestinal (non-GI) symptoms and other psychological and social factors that may influence care for particular individuals with IBS.  Rome IV will be officially published and presented to the international gastroenterology community at the annual Digestive Disease Week professional conference taking place about 3 weeks from now. It is hoped that it will provide better diagnosis and treatment for people with IBS worldwide, and new opportunities for education of medical professionals in functional GI disorders.

Several investigational medications and other non-pharmaceutical treatment options are always in the research pipeline in various parts of the world. In the U.S., prescription medications. Rifaximin (brand name Xifaxan) and Eluxadoline (brand name Virberzi) both received FDA approval for IBS-D in late May 2015 and are now in use by some people with IBS.

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

As this blog reported on January 26, 2016, the Gastrointestinal Society in Canada launched an online survey seeking 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. Originally, the survey was scheduled to close on April 30, but has now been extended through June 6, 2016.

In December 2015, the American Gastroenterological Association released the results of a survey it commissioned called “IBS in America” Over 3000 people with IBS and over 300 physicians, both gastroenterologists and primary care providers, were interviewed by marketing research company Gfk on behalf of AGA. The survey, which was financially supported by the pharmaceutical companies Ironwood Pharmaceuticals and Allergan plc, has since received considerable media attention and opportunities for IBS to be discussed among health care professionals.

Progress in societal supports for people with IBS:

Our peers, primarily from the inflammatory bowel disease (IBD) community, are continuing decentralized but ongoing efforts to pass Restroom Access Acts, popularly known as Ally’s Law, in additional states.  These individual state laws, which to the best of my knowledge now number sixteen, have the common goal of allowing people with medical conditions, including irritable bowel syndrome, that may cause urgent restroom needs, to use employee-only facilities in retail stores if no public restrooms are immediately available. As far as I am aware, no new state has been successful this past year in enacting a law, but publicity and advocacy continue to make more legislators and the public aware of the need. Search the Ally’s Law tag in the right sidebar to see previous posts and states where similar laws apply.

The IBS Network continues its ongoing efforts to prevent widespread closures of public toilets in various areas of the United Kingdom, and it continues to support and expand the availability of  local, in-person self-help/support groups for people with IBS throughout the country.

Last spring, Monash University in Australia, developers of the low-FODMAP diet that is effective for reducing symptoms for many people with IBS, launched 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 is of promising help to those in Australia and New Zealand who follow the low-FODMAP diet.

Progress in advocacy and awareness:

The International Foundation for Functional Gastrointestinal Disorders and its grassroots arm, the Digestive Health Alliance  (IFFGD/DHA),  continued in the past year to shepherd the Functional GI and Motility Disorders Research Enhancement Act through its third attempt at passage by the U.S. House of Representatives, with the support of IBS Impact and other groups and individuals. After two previous attempts in the two previous Congresses,  it  was reintroduced in the the current 114th Congress under a different Act number, HR 2311, in June 2015 and has received bipartisan support from Representatives in several states.  See the Legislation category,  HR 231,1 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.

In the past year, the IBS Network in the United Kingdom launched its “Not Just IBS” awareness campaign and Change.org petition addressed to all U.K. political parties and the National Medical Director advocating for specific changes to improve the lives of all those in the U.K. who have IBS.

IBS Impact launched a newly designed and updated main website in the fall of 2015 and the number of followers of this blog and our social media accounts continues to increase. Cumulatively, IBS Impact continues to reach readers in over 100 countries 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 IBS Network Conference, “The Patient’s Perspective,” To Be Held April 16, 2016

March 28, 2016

Some of our readers in the vicinity of Sheffield in the United Kingdom may be interested in a conference entitled, “The Patient’s Perspective” being offered by the IBS Network at the Holiday Inn Royal Victoria Hotel in Sheffield on Saturday, April 16, 2016.

This event is in commemoration of the IBS Network’s 25th anniversary as the United Kingdom’s national charity for IBS and will include several sessions with leading U.K. professionals in the IBS/functional GI field as well as people affected by IBS. Diagnosis, working with health professionals, research, diet, cooking, and living with and managing IBS are among the expected topics. The program is free of charge to those affected by IBS and IBS professionals but 25 pounds for those representing or employed by commercial entities. An IBS-friendly buffet lunch will be provided.

The original listing with more details is available on the IBS Network website at the following link:

http://www.theibsnetwork.org/upcoming-event/free-ibs-conference-patients-perspective/

Thanks to a friend of IBS Impact in the U.K. for passing along the information.

Please address any questions about the above event directly to the IBS Network. IBS Impact hopes that this conference is helpful to our readers in the United Kingdom.

 


Upcoming GI Society, Canada, IBS Education and Support Events for April and May 2016.

March 20, 2016

The Gastrointestinal (GI) Society, also known as the Canadian Society of Intestinal Research, is offering four “Bad Gut Lectures” on various aspects of irritable bowel syndrome in different locations within British Columbia during April and May 2016. These are appropriate both for people with IBS and their “support circles,” such as family and friends, and health professionals.  These are free of charge, but advance registration is required.

Tuesday, April 5, 2016 at the Studio Theatre in Maple Grove,  7:00-8:30 PM :

Overview of IBS and treatments by Dr. James R. Gray, a gastroenterologist

Wednesday, April 27m 2016 at the Surrey Memorial Hospital in Surrey, 7:00-8:30 PM:

Overview of IBS and treatments by Dr. James R. Gray, a gastroenterologist

Wednesday, May 4, 2016 at the Executive Suites and Conference Centre in Burnaby, 7:00-8:30 PM

Overview of IBS and focus on stress management by Dr. James R. Gray, a gastroenterologist and Claire Maisonneuve, a registered clinical counsellor

Tuesday, May 31, 2016 at the Poco Inn and Suites Hotel in Port Coquitlam, 7:00-8:30 PM

Overview of IBS and focus on the low-FODMAP diet  by Dr. James R. Gray, a gastroenterologist and Anne-Marie Stelluti, a registered dietitian

Those interested in attending any of the above lectures may register on the GI Society website at http://www.badgut.org/events/lectures/

For people with IBS in the Toronto and Montreal areas, the GI Society also offers ongoing monthly in-person support groups. Please see the GI Society support group page for exact times and locations and the GI Society’s guidelines for members. http://www.badgut.org/events/support-groups/  The GI Society advises that prospective attendees call its office in advance to confirm that the meeting for a given month is occurring as scheduled.

Please address any questions about the above programs directly to the GI Society. IBS Impact hopes that these resources are helpful to our Canadian readers in British Columbia, Ontario and Quebec.