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.


Clinical Trial: IBS and Relationships, University of Adelaide, Australia

May 16, 2012

The following study is re-posted from the most recent newsletter of Sophie Lee, owner of the IBS Tales website in the United Kingdom. IBS Impact thanks Sophie for this information. Sophie writes:

“Dear All,

This is a special message for Australian IBS sufferers. An academic researcher is looking for IBS patients for her study – can you help? Please contact the researcher directly to volunteer, and many thanks to anyone who participates.”

IBS and Relationships Study

IBS affects people’s lives in so many different ways, yet medical and health professionals often remain unaware of the extent of impact. I’m interested in hearing about your IBS and how it may affect your most important relationships – whether they be with your partner, your friends, family, work colleagues or anyone else.

There is no pressure or expectation to discuss anything you do not wish to discuss. Personal details are completely confidential and you are free to withdraw at any time.

Interviews can be conducted via telephone, Skype or face-to-face. I have almost finished interviewing but still need to hear from:

– men under 50 years of age
– men and women of any age in new relationships
– same-sex attracted men and women of any age

or any combination of the above!

For more information, please visit my study information website: http://ibsrelationships.wordpress.com/

You can also check out my research page here: http://www.adelaide.edu.au/directory/katie.crocker
 
If you would like to be interviewed, and you live in Australia (to avoid the influence of other medical systems), or you have any questions about the study, please feel free to email: katie.crocker@adelaide.edu.au or call me on (08) 8222 5141.

Warm regards,

Katie Crocker
PhD Candidate
The University of Adelaide

IBS Impact  encourages readers in Australia to participate. For readers in any country who are interested in the topic of relationships with partners, please see the family and friends page on the IBS Impact main website, which includes several articles for loved ones of people with IBS, and a recently added link to the video portion of the April 2011 UNC Evening With the Experts chat, in which Reuben Wong, MD of the National University Hospital in Singapore discussed partner burden and IBS.