Paying It Forward for Irritable Bowel Syndrome (IBS)

February 28, 2017

With various economic and political changes in some of the countries that frequent this blog and our main website, many citizens have started to wonder about the mid-range and long-term future for government and public support for their various interests and causes. This has included concern from some scientific researchers in various fields about their ability to continue their work. While the future remains to be seen, for many people from diverse parts of society, this has sparked increases in private giving to a wide variety of causes. This is a positive development and something IBS Impact hopes more people with IBS and family members will consider for our community the next time they think or say, “Why doesn’t anybody research better treatments… do more awareness… provide services … recognize this need or that need?”

Well, the answer is that some organizations and many researchers and other professionals in the functional GI disorders community indeed do many of those things and have been doing them for quite a while. That their consistent efforts and progress are not generally publicized as well as resources and breakthroughs for other common health conditions,  and these organizations and individuals are not household names all over the world. or even in their own countries, recognizable instantly to any IBS-affected family, let alone the general public, is definitely a problem. Recognition of the IBS community’s existing resources and accumulated medical evidence is something that other sites and groups, both grassroots IBSer-led like IBS Impact and others, and established professionals, have endeavored to address. Just as with IBS itself, advocacy, awareness, education and research are slow. They are unpredictable. They take effort, perseverance, some degree of luck, and more than a little courage when the going gets rough, and many other things.  The still-unmet needs that one could theoretically expand to meet appear endless. But one of the most practical needs for any of this to happen is money. Staff members need to be paid, offices and labs need to be kept open with utilities, phones, computer hardware, software, Internet service, websites, other equipment and supplies, printing and postage for print publications and brochures, travel and fees for conferences and other public speaking or advocacy opportunities, to name just some of the typical organizational or research expenses.

Irritable bowel syndrome is extremely common. It is found in almost all countries on every continent of the globe, in every age group from young children to senior adults, in all genders, ethnic groups, socioeconomic groups, religious or political affiliations or lack thereof. It is not talked about in public as much as many other conditions because for many people in our community, it is deeply embarrassing to discuss problems with related to how we excrete bodily waste.  Many people with IBS who do talk about it find that some people they interact with are uninterested or dismissive. While the occasional minor celebrity has come out in public as having IBS, none of them has sustained interest in publicly supporting the cause, and people who are not directly affected are not going to understand the challenges and take up the cause unless people who are affected– people with IBS and families– make their presence known and show that our cause is worthwhile. Standing around and waiting for hypothetical wealthy people to come along spontaneously, hand over inexhaustible sums for IBS, and bring millions of the general public to our side to fight our own battles is not realistic.

It is up to us, to the extent we are each financially able, to support our own needs and the organizations and research facilities in several countries that already exist to help us. This is true of any health community or other constituency, such as a university alumni association, at least in the way traditional fundraising works in the United States. Historically, support from people with IBS for our own cause has not happened much at all. It is understandable that severe IBS often brings with it greater expenses of various sources and perhaps unemployment or underemployment compared to pre-IBS productivity.  But eight years ago, when IBS Impact was still in the planning stages, one person with IBS stated that if every person estimated to have IBS  in the United States, the United Kingdom and Australia alone donated one of his or her local unit of currency (dollar or pound) per year, we would have over one billion of them.

Almost six years ago on July 22, 2011, very soon after starting this blog, we published a post entitled “Putting Our Money Where Our Mouths Are for IBS,” in which this issue was first discussed in detail, with comparisons to another related health community and explanations of the funding process in the United States. Three years after that, on August 25, 2014, then-current events prompted this blog to revisit and expand upon the topic. Some grassroots crowdfunding efforts like Facebook Causes and the IBSGroup.org donation fund are no longer in existence. But most established not-for-profit organizations and research centers do remain, and the general issues raised in the posts years ago are still the same and will remain that way for years to come.

IBS Impact itself is neither a business nor charity.  From inception, expenses of keeping the main website running and randomly- generated ads off this free blog have been donated by the IBS Impact founder and a succession of webmasters, all people with IBS of relatively modest means. This is a conscious decision in order to discourage miracle cure spammers and maintain our credibility within the IBS community. Philosophically, we do encourage IBSers to support financially the organizations or research centers of your choice. Many, in several countries from which we receive many hits, are linked on various pages of the IBS Impact main site, including the links and research pages. For those who really cannot give directly, there are several sites that direct corporate money from online merchants to charities of your choice at no extra cost, such as Good Search /GoodShop  and Amazon Smile in the U.S., iGive for U.S. and Canadian residents, and Everyclick for those in the U.K. Even small amounts can add up if there are many individuals with a consistent commitment to change.

IBS Impact challenges people with IBS and family members– if an IBS organization or medical professional associated with an research entity has ever been helpful to you, or even if you hope they may be able to in the future, think about giving back. Many of us have not have unalloyed positive experiences over the years, but keep the faith. If even one site, one group, one individual in the IBS community has given you hope, information, comfort, direction, remember this. Then find an IBS or GI organization or research center that speaks to your interest, hope, or memory, and consider literally paying it forward to whatever extent you can to improve the future for all of us.


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.