Updates to IBS Impact.com Main Website, July 2019

IBS Impact has recently completed the latest round of updates to many pages of our main website,  IBS Impact.com,

The advocacy page,  IBS page, research page, IBS studies page, resources page ,and links page, plus the news updates in the blue and white footers of every page all have additions or updates of content or links, or deletions of outdated links in the last couple of months.

Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or Twitter feeds (links found on the lower right sidebar of this blog and in the light blue footer sections below each page of the main site).  Each has slightly different information on an ongoing basis. Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material and links. The current site reflects resources in six English-speaking countries which are among the top sources of hits to the site and this blog: the United States, Canada, the United Kingdom, Ireland, Australia and New Zealand. Several additional countries are occasionally represented on various pages.

Because of the redesign and transfer of the site to new hosting twice in 2015 and 2016, some links embedded in older posts on this blog or search engine results relating to IBS Impact.com may result in error messages, but you should still reach the site itself. If so, please use the navigation links at the top of the site to reach the desired subpage.  No information that is still currently useful has been removed from the site, although in some cases, the location has changed. Only outdated details and occasional defunct links for which there is no replacement available at this time have been deleted. The date of last update is indicated at the bottom of subpages that change periodically.

Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and worldwide public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.

IBS Impact as an entity, is not directly affiliated with any other organization, site, or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations,  and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide.

Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable evidence-based organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered. A contact form  can be found on the main site, or comments can be left on this blog.  Thank you to all of our readers and social media followers for your interest and participation.

U.S. FDA Approves IB-Stim, First Medical Device for Irritable Bowel Syndrome (IBS) Pain in Adolescents, June 2019

About two weeks ago, the U.S Food and Drug Administration (FDA) approved marketing of the IB-Stim device, for use in adolescents, ages 11-18, with functional gastrointestinal pain related to irritable bowel syndrome (IBS).

IB-Stim, developed by Innovative Health Solutions in Indiana, is a small nerve stimulator device powered by a battery and intended to be worn behind the ear. The FDA approval was based on a randomized, double-blind clinical trial of 50 youth in the approved age range. According to Innovative Health Solution’s results, 81% of the study participants in the IB-Stim group experienced a reduction in symptoms with minimal or no side effects. Reportedly,70% had previously not obtained adequate relief with an average of four medications.

Each IB-Stim device will be available by prescription only, and is to be used for five days at a time and then replaced. The FDA approval clears the device to be worn safely for up to 120 hours over three consecutive weeks. IB-Stim was used in clinical trial as an addition to medication, not as the only intervention. It is considered medically inappropriate for children with hemophilia, cardiac pacemakers or psoriasis vulgaris. Several functional gastrointestinal/gut-brain disorder professionals have expressed publicly on social media cautious optimism about this development, although a few have noted that it remains to be seen if insurance companies will cover the device.

Below is a selection of the most useful sources of information available online at this time regarding the IB-Stim approval. IBS Impact   encourages adolescents with IBS and their parents or guardians to educate themselves fully from reputable, evidence-based sources on this new option. As individuals’ medical history and response to any treatment will vary, informed decisions as to if the IB-Stim is safe and appropriate for a specific youth should be made in consultation with the child’s own physician.

Stimulation Device for Pediatric IBS Pain Wins FDA Nod  (MedPage Today)

FDA permits marketing of first IBS device for patients 11-18 years old (Healio Primary Care)

FDA clears device to treat pain in youth with IBS (New England Journal of Medicine, Journal Watch)

Many adults and children with IBS experience pain as one of their most disabling IBS symptoms.  Also, historically, evidence-based IBS treatment options for children and teenagers have been even more limited than for adults because of various factors related to their age group. Thus, IBS Impact welcomes this ground-breaking new development and will be watching further news of this treatment option closely as it becomes publicly available for prescription. We hope that in wider use, it will continue to fulfill its apparent promise in providing safe, effective pain relief to many adolescents with IBS.

Online Research Survey on Chronic Abdominal Pain, Stanford University and IFFGD, June 2019

The following anonymous and confidential research survey is open to adults 18 years old or older from any country who have had a chronic abdominal pain condition (IBS and/or many others) for at least 6 months. The survey will ask demographic information, symptom information, and treatment information for current or past interventions and their level of effectiveness. This study has Stanford institutional review board approval. Estimated completion time is 15 minutes.

https://stanfordmedicine.qualtrics.com/jfe/form/SV_d5VxAffSZ908rHf

IBS Impact welcomes researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies or surveys they wish to be considered for posting. A contact form is available on the main IBS Impact website.

IBS Impact makes these announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation. Additional studies can be found by clicking on the Research– Clinical Trials sub-category in the right sidebar of this blog on our main website IBS studies page. Please be sure to check the date at the top or bottom of a given post, as many posts from this blog remain visible in search engines for several years, and studies stop accepting volunteers or conclude the trials after a period of time. IBS Impact, as an entity, is not directly affiliated with any research sponsor or organization and receives no funding from any source for studies, surveys or links we feature on this blog, the main site or social media.

New Canadian Association of Gastroenterology Clinical Practice Guidelines for the Management of IBS, 2019.

The Journal of the Canadian Association of Gastroenterology has newly published guidelines for the management of irritable bowel syndrome (IBS) in adults in its April 2019 issue.

Twelve named authors from the fields of gastroenterology,  health psychology and primary care, represent six Canadian universities with one author currently unaffiliated. These are McMaster University, the University of Calgary, the University of Alberta, the University of Manitoba, the University of Toronto and Queen’s University. The development of these guidelines first began in January 2017, culminating in its first release in January 2019 and print publication last month. While a few Canadian researchers have previously collaborated with United States colleagues on American guidelines, which differ from these Canadian guidelines in a couple of aspects, as far as IBS Impact is aware, this is the first time any national professional organization in Canada has issued a comprehensive document of this nature.

The published article, which includes the consensus statement and recommendations on existing IBS treatment options can be accessed online here.

https://academic.oup.com/jcag/article/2/1/6/5290372

IBS Impact hopes that the existence of these guidelines improves health care provider awareness of IBS, as well as effective treatment for Canadians with IBS.

U.S. FDA Approves Reintroduction of Tegaserod (Zelnorm) for Some Women with IBS with Constipation (IBS-C)

Over a month ago, the U.S Food and Drug Administration (FDA) approved the reintroduction of tegaserod (brand name Zelnorm), an oral medication for irritable bowel syndrome with constipation (IBS-C) to the U.S., only for women without risk factors for or history of cardiovascular conditions.

Tegaserod, a selective serotonin type 4 receptor partial agonist was available  in the United States and Canada from 2002-2007, when the FDA and  Health Canada, each asked for its withdrawal due to many reports of serious side effects, including unstable angina and strokes. Since then, the FDA has only made Zelnorm available on a rare emergency basis after a physician application for specific individual patients. The current FDA approval is based on an extensive review of 29 clinical trials plus additional outcome data for tegaserod, which found it effective for symptom reduction and safe for a large proportion of potential users.  The medication should be available for doctors to prescribe within a few months.

https://www.accessdata.fda.gov/scripts/cder/daf/index.cfm?event=overview.process&ApplNo=021200

https://www.mdmag.com/medical-news/fda-approves-tegaserod-reintroduction-ibs-constipation

https://www.healio.com/gastroenterology/motility/news/online/%7B204dd12e-4246-4b90-9e2a-40c146cc5d75%7D/fda-approves-reintroduction-of-zelnorm-for-ibs-c-in-certain-women

IBS Impact hopes that this medication will provide an effective new option to some women with IBS and urges readers to educate themselves thoroughly on the benefits and risks and to discuss with their physicians as to if it is appropriate for their own medical history and needs.

Online Study: Gastrointestinal Unhelpful Thinking Scale (GUTS) Development Study, Swinburne University, Australia, May 2019

The following study currently seeking men and women at least 18 years old in any country with chronic gastrointestinal conditions is a followup to online studies posted here on August 12, 2017  and June 9, 2018. The 2017 and 2018 studies are now closed to new volunteers.

The current study has received institutional ethical approval. All information available to IBS Impact is below and at the study link. Please address any further questions or concerns directly to the research team at the phone number or email address given below. This description is adapted from excerpts of the one on the study page.

In 2017 and 2018 we conducted a study which developed a new scale (Gastrointestinal Unhelpful Thinking Scale [GUTS]) to assess cognitive processes associated with bowel discomfort. We are now conducting a new study and looking for both male and female participants who are at least 18 years of age. The current project is exploring how responses to the GUTS relate to other similar scales. 

Your responses will help us better understand how thinking patterns impact upon gastrointestinal discomfort. Further your participation will also help us to evaluate our new scale against other similar scales. We hope that the validation of our new scale will lead to better way to measure and assess common cognitive factors associated with bowel discomfort.

Estimated time commitment is 30 minutes. All information provided is anonymous. At the completion of the study, participants may opt in to providing an email address for a random drawing to receive one of four AUS $100 gift cards to Amazon or Coles Meyer or JB HIFI, but this is not required. The drawing is scheduled to take place on October 31, 2019.

https://swinuw.au1.qualtrics.com/jfe/form/SV_7OrLM1M0xCCh9SR

For more information, please contact the research team: Principal Investigator: Dr Simon Knowles, (Senior Lecturer and Clinical Psychologist ) 61 (03) 9214 8206, email: sknowles@swin.edu.au 

Other investigators involved: Dr Pragalathan Apputhurai (Lecturer in Statistics), Dr Rebecca Burgell (Consultant Gastroenterologist, The Alfred Hospital), Mr. Stephan Moller (Research Assistant) & Professor Laurie Keefer (Health Psychologist, Susan and Leonard Feinstein IBD Clinical Center, New York).

IBS Impact welcomes researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies or surveys they wish to be considered for posting. A contact form is available on the main IBS Impact website.

IBS Impact makes these announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation. Additional studies can be found by clicking on the Research– Clinical Trials sub-category in the right sidebar of this blog on our main website IBS studies page. Please be sure to check the date at the top or bottom of a given post, as many posts from this blog remain visible in search engines for several years, and studies stop accepting volunteers or conclude the trials after a period of time. IBS Impact, as an entity, is not directly affiliated with any research sponsor or organization and receives no funding from any source for studies, surveys or links we feature on this blog, the main site or social media.

IFFGD 2019 National Advocacy Event in Washington DC Scheduled for June 24-25, 2019

The International Foundation for Gastrointestinal Disorders (IFFGD), a U.S.-based not-for-profit organization for IBS and other gastrointestinal disorders has announced its annual event in Washington, DC for June 24-25, 2019. Traditionally, during this event delegation of IFFGD staff, gastroenterology professionals and affected people and their families meets with members of Congres to raise awareness and advocate for legislation to meet the needs of our community. If you would like to participate or learn more about the issues and what is being done, please see the link below. More information will be shared as it becomes available. The registration deadline for those who wish to join advocates in Washington, DC is May 31, 2019.

https://iffgd.org/advocate-for-digestive-health/taking-action-in-washington/capitol-hill-advocacy-day/advocacy-day-2019.html

 

11 Years and 12 IBS Awareness Months: More Forward Momentum for the IBS Community 2018-2019

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

Six 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,  and April  30, 2017, and May 8, 2018, I reported in a similar vein, on progress for the IBS community in each respective years, Now, continuing the tradition during my own tenth year with IBS, just a week after my eleventh IBS Awareness Month, once again, I can observe many  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. These include, but are by no means limited to telephone and web based cognitive behavioral therapy for IBS, food related quality of life in inflammatory bowel disease (IBD) and IBS, a new Rome Foundation Working Team Report on post-infectious IBS, the effects of gut-directed hypnotherapy on the intestinal microbiome, and a comprehensive literature review for pediatric functional abdominal pain disorders, the first such update in many years.

In addition, the Rome Foundation, a not-for-profit organization founded decades ago by thought leaders from many countries in the field functional gastrointestinal disorders/disorders of gut-brain interaction that includes IBS, has established a new initiative known as the Research Institute of the Rome Foundation. The hope is to be a centralized, international resource for scientists in the field in ways that will continue to encourage and expand research over time.

These varied advancements in IBS research are taking place in or with the involvement of many scientists from many countries, and very often, volunteers with IBS from multiple countries per study as well.  See other posts in the Research category of the blog sidebar, the IBS studies page of our main website  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 mid-May traditionally provides even more state of the science research news each year.

Progress in the diagnosis and treatment of IBS:

The Journal of the Canadian Association of Gastroenterology has just published guidelines for the management of irritable bowel syndrome (IBS) in its April 2019 issue. Twelve named authors from the fields of gastroenterology, health psychology and primary care, represent six Canadian universities in several provinces, with one author currently unaffiliated. While a few Canadian researchers have previously collaborated with United States colleagues on American guidelines, which differ from these Canadian guidelines in a couple of aspects, as far as IBS Impact is aware, this is the first time any national professional organization in Canada has issued a comprehensive document of this nature.

Meanwhile, in July 2018, the American College of Gastroenterology published its own updated recommendations for IBS treatment options. The previous guidelines dated back to 2014.

 Over the past four 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.  Rome IV development 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 29 years, although research shows that many people with IBS and medical professionals who do not specialize in IBS remain unaware of this. Since the launch of Rome IV and continuing in the past year, the Rome Foundation members have made Rome IV print and online materials and webinars available to educate fellow health care professionals, including new outreach to primary care physicians and those from regions of the world historically underrepresented in the field. The Foundation also continues a program to mentor promising young functional GI researchers, an initiative begun over a year ago.

Several investigational medications and other non-pharmaceutical treatment options are always in various stages of the research pipeline in various parts of the world.  Earlier this year, Rifaximin, known in Canada by the brand name Zaxine, received Health Canada approval for use in IBS-D.   In the United States, at the end of March 2019, the Food and Drug Administration approved the return of tegaserod, brand name Zelnorm, to the U.S. market for women with IBS-C with no cardiovascular history or risk factors. This medication was previously taken off the market several years ago because of reports of serious cardiovascular complications in some users.

The website of the Rome Foundation Psychogastroenterology Group went live in the fall of 2018. Founded and maintained by Laurie Keefer, PhD of Icahn Mount Sinai in New York and Sarah Kinsinger, PhD of Loyola University in Chicago, both leading GI health psychology clinicians and researchers, to encourage the use of highly effective psychological treatments for IBS like gut directed hypnotherapy and cognitive behavioral therapy. The website includes a private listserve for psychogastroenterology professionals, public links to media coverage on these interventions, and most importantly, a public online directory of GI health psychology professionals that can be accessed by people with IBS, concerned family members, and health care professionals searching for providers.

In the past several months, IFFGD has also initiated its dietitian care locator.

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

The International Foundation for Gastrointestinal Disorders (IFFGD), in the U.S., formerly the International Foundation for Functional Gastrointestinal Disorders, began recruiting its first invitation-only, volunteer Patient Advisory Council for people with GI disorders, including IBS and family members known to IFFGD as among the most active and interested advocates, and larger volunteer Patient Panel, open to any interested individual, early in 2018 as reported on this blog in June 2018. Since then, IFFGD and members of these groups have communicated, as individuals and groups, to share information and feedback on IFFGD materials, programs, and advocacy priorities, and to develop the means to address suggestions of members and the concerns of those affected by GI disorders in the wider community.  IBS Impact appreciates the effort to encourage more formal patient-organization collaboration.

Progress in societal supports for people with IBS:

The IBS Network in the United Kingdom continued its efforts this past year to expand the availability of local, in-person self-help/support groups for people with IBS in the UK. as originally reported by this blog on October 23, 2016 and January 13, 2017. As of this writing, there are 16 such groups which meet monthly in various locations in England and Scotland. The current list can be accessed at this link.

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. 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. Over the last year, Monash launched a significant redesign of its app based on user feedback, also revamped its online training course for dietitians, and is cooperating with a major Australian bakery franchise that supplies bread throughout Australia as well as to Canada, and a few in New Zealand and the United States.

Progress in awareness and advocacy:

Over the past years or so,  the American Neurogastroenterology and Motility Society,  the Rome Foundation, and IFFGD, in cooperation with the University of Michigan, a major functional GI research center, have each sponsored various Twitter chats, Facebook Live events and/or other social media events on IBS and functional GI disorders that are increasing awareness and education among patients, families, and other professionals.

IFFGD has announced this year’s dates for its annual national advocacy event in Washington, DC to meet with federal legislators on several issues of concern to the GI disorder community. This will take place on June 24-25, 2019. Those who wish to participate should register by the deadline of May 31.

IBS Impact continues to make incremental updates to this blog and social media several times a month and to its main website several times a year,amassing archives that thus far cover almost eight years of quality, evidence-based material, resources and personal experiences of those who blog for us. The number of followers of this blog and our social media accounts continues to increase. Cumulatively, IBS Impact now reaches readers in over 150 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.

Guest Post From Australia For IBS Awareness Month: IBS- A Personal and Professional Journey

IBS Impact is pleased this week to welcome guest blogger Joanna Baker, APD, RN from Melbourne, Australia to share her personal and professional experiences as a person with IBS and a professional in the field for IBS Awareness Month 2019. We thank her for her time and insights.

Joanna is a foodie, a dietitian and a registered nurse. She works exclusively in IBS and food intolerance at Everyday Nutrition. Joanna says the biggest compliment a patient can give her is that she helped them not be scared of food.

 

I’m guessing, whoever said “trust your gut” didn’t have Irritable Bowel Syndrome (IBS). If, like me, you’ve experienced the unpredictable and embarrassing gut upsets that are classic of IBS you’ll know that your gut is far from trustworthy.

My experience with IBS spans both the professional realm and personal “participation”, so it’s a condition that is very close to my heart. I’m honoured to share my story of an existence with IBS here in the South Pacific and a huge thank you Nina Pan for including me in #IBSawareness2019.

Firstly some background, I’m an Accredited Practising Dietitian (the Australian title for a Registered Dietitian) and a Registered Nurse, based in Melbourne Australia, the birthplace of the low FODMAP diet. I’ve been working in healthcare for over 20 years but I have also suffered with IBS for long enough that I don’t remember a life without “gut issues”. My IBS has affected my work, my social life, my intimate life and my mood. It sucks. It wasn’t until I was in my mid-thirties (way too late) that I discovered I didn’t have to “just put up with it”. It’s been a process, but I am now at the point where I feel like I am charge of my gut, instead of my gut being in charge of me. In a nutshell, I know how bad it can be. But, I also know it doesn’t have to be that way.

My IBS story really starts back in the 1970s when my mother first took me to the doctor about my gut issues. I was only about 12 months old and she already knew that cow’s milk just didn’t agree with me. Back then there was no low FODMAP diet. The doctor said “stop giving her cow’s milk, she’s just a gutty baby and will grow out of it”. Well, I didn’t grow out of it, I just grew into a “gutty” teenager and eventually a “gutty” adult. I had never known any different. This was what I thought was normal.

Growing up I was aware that my gut was more sensitive than my friends’ or family’s guts, but I thought it was just me and I had to learn to live with it. I remember as a pre-schooler my aunts and uncles making jokes about how efficient I was at expelling gas, and I remember as a young teenager going home sick a number of times as well as a particularly embarrassing event at Girl Guide camp. All along watching my dad suffer with IBS and thinking, I really hope I don’t get IBS when I grow up.

I started my adult life as an anaesthetic nurse, I loved the complexity and technical side of this but always felt something was missing. It wasn’t until after my son was born when I was in my early 30s that I decided my future was in the prevention of disease. So back to university for a Master of Dietetics.

As a “dietitian to be” I knew part of my job would be supporting people to make changes to their diet, even removing foods they love. Being super conscientious I decided that I should know what it’s actually like to do this, so I began to plan my one week gluten free diet. What did I have to lose besides? It would only be for a week. I could survive.

To cut a long story short, within 2-3 days, life as I knew it was upside down. For the first time ever I discovered what it felt like to be full and satisfied after a meal and not bloated and uncomfortable. Literally. The. First. Time. Ever. I actually got home and didn’t change straight into my tracksuit pants. I (wrongly!) assumed that I must be sensitive to gluten, after all I removed it and felt dramatically better, Right? No, I was wrong. But by the time I knew any better, being screened for coeliac disease meant a gluten challenge, and there was no way I was going to do that. Eventually though, it became apparent that going gluten free wasn’t enough. One thing led to another and before long I found myself on a low FODMAP diet as well. My list of safe foods was shrinking unnecessarily smaller and smaller and my anxiety around food in general was getting larger and larger. In hindsight I now know if I had pursued proper guidance and support at the start, I wouldn’t have wasted a good 7–8 years fearful of wheat before attempting (and passing) the dreaded gluten challenge. You can read more about my story of Reuniting with Wheat  here.

Eventually I started my dietetics degree and began to learn more about what these diets were and how they are supposed to be implemented. I knew I had gone about it the wrong way, but life was too busy and living on a restricted diet seemed like the easier option. I finished my degree and qualified as a dietitian, going straight into private practice where I could focus on my passion, helping people like me.

Gut microbiome research was beginning to grow  and the importance of variety to gut health was plaguing me day after day. I knew I had to challenge, but every time I tried the smallest amount of food outside of my safe list, I suffered for days. About this time I attended a fascinating professional development course at the allergy unit Sydney’s Royal Prince Alfred Hospital (RPAH). This workshop made it evident that it was time for me to get advice from someone who could objectively look at my diet and my symptoms and help me find some food freedom. I already had my head right around FODMAPs, so I spoke to the head dietitian at RPAH. I have Anne to thank for identifying a non-FODMAP trigger which was interfering with my results. Once I removed this, I not only gained more consistent symptom relief, I also found that when I dabbled in small amounts of foods that weren’t on my safe list I didn’t suffer for days.

Anne helped me grow my confidence and with it, the variety in my diet. I was actually passing some challenges and finding my thresholds with others. By the end of the process I had identified 2 major triggers (both of them non FODMAP) and 1 minor trigger (Polyols). In hindsight, I can see why I got an improvement on a gluten free and low FODMAP diet, but why missing the other triggers meant my results were inconsistent. I now feel better, I have more variety, and my diet is much less limited. I would almost say that I can live and eat like a normal person again.

What I’ve learned:

  • Never underestimate the input of a specialist dietitian who can be objective. Even if you’re a dietitian yourself.
  • FODMAP is a journey and not a destination.
  • IBS itself is multi-factorial. Treat it like a puzzle that needs to fit together for you in your own unique way. Don’t limit your IBS toolbox to FODMAPs alone.
  • Being sick is scary and debilitating and so is challenging foods that might make you sick.
  • Food is so much more than energy in. Food is emotional, scary, nourishing, social connection, caring, celebrations and commiseration. Food is an integral part of everyday life.

To dietitians, doctors, nurses and other healthcare professionals, please listen empathetically to your patients. Sometimes just listening to and validating their story is the first step in moving forward. The longer I’m in this game the more I realise that there is so much we still have to learn about food intolerances, IBS and gut health. So be curious about what your patients think their symptoms and triggers are. Think outside the box and help them to troubleshoot if needed.

In Australia, and especially in Melbourne, we are super lucky. We have multitudes of dietitians and doctors who know about the low FODMAP diet and how effective it can be. We have foods in the supermarkets that are certified low FODMAP including breads, pasta, pasta sauces, soups, ready meals, muesli bars, cereals, cookies, yoghurts, milks and more. You could probably eat certified foods for a week and not get bored or hungry.

Unfortunately, like other parts of the world, we are still missing public awareness and the understanding of friends, family and colleagues of  what it’s like to live with an invisible and debilitating condition. It would be so wonderful to have meals identified on menus as low FODMAP or easy to modify to low FODMAP. We want more (and cleaner) public toilets! Lastly doctors, please stop telling patients to “manage their stress” or  just “google FODMAP”. This isn’t helpful and more often than not, Google is wrong. Please refer them to a dietitian who is trained and experienced in modifying nutrition guidelines to manage a medical condition like IBS. It’s a specialised dietitian that can help your patients get as few symptoms as possible AND as much variety as possible at the same time.

If, like me, you are one of the millions worldwide who can’t “trust your gut”, you are not alone and you are doing a great job ❤

April is Irritable Bowel Syndrome (IBS) Awareness Month 2019

April is Irritable Bowel Syndrome Awareness Month. IBS affects, depending on the source, at least 25 million and perhaps up to 58 million women, men and children in the United States and anywhere from 9-23% of the population in different countries on every continent of the world.  In the U.S, this prevalence exceeds that of diabetes, chronic kidney disease, asthma, adults with chronic heart disease, and, by far, inflammatory bowel disease (IBD), with which IBS is often confused. IBS Impact stands in solidarity with what Olafur Palsson, PsyD, full professor and leading researcher at the University of North Carolina Center for Functional GI and Motility Disorders once estimated as half a billion people with IBS around the globe. As noted in the January 10, 2012 post on this blog, in 2011, a Rome Foundation working team estimated that 40% of us are mildly affected, 35% moderately affected and 25% severely affected, with the last two groups significantly larger than that same group of professionals had previously thought.

Unlike awareness weeks and months for these and other common health conditions, it is often difficult to know this unless one follows certain IBS sites, but as time goes on, awareness gradually increases. In 2012, this blog  first published a version of this post as  “10 Things We Can Do for IBS Awareness This Month and Every Month,”  which remains one of the most popular single posts in the history of this blog.  That post has been revised and updated as needed every year since. Here are 10 possible strategies for how people with IBS in any country can increase awareness of IBS. Readers of this blog who are relatives and friends, with the permission of the person with IBS, feel free to help the cause too.

1) If they do not already know, talk to your family, friends, coworkers, classmates and medical providers about IBS. Having IBS is often an isolating experience, and some people with IBS who have “come out of the closet” have found that the stress of hiding and worrying about who knew and how much they knew actually triggered worse symptoms.  No, not everyone will “get it” and that can be hurtful or tiring, but people without IBS will never learn to understand unless we are willing to tell them. Some of them will help you and it may be the people you least expect. Given that IBS is the most common functional gastrointestinal disorder with prevalence anywhere from 9-23% in different countries worldwide, it’s very likely that some people  you tell will also have IBS or loved ones with IBS. The IBS Impact main website has an entire page of articles specifically for family and friends. Many past posts on this blog are also tagged for this subject, and can be found by using the search box on the right sidebar.

2) If you find the IBS Impact website or blog or any other reputable IBS site useful and interesting, share it with your family and friends, other people with IBS and your health care providers, especially those not currently active in the IBS community.  Knowledge is power. The more people who have good information and resources rather than outdated misconceptions and quacks, the better off we will be as individuals and as a group. IBS Impact also posts to its Twitter and Facebook pages several times month with scientifically reputable articles, resource links, clinical trial and advocacy opportunities and encouragement from sources all over the globe. If you use these social media platforms, your likes, comments and shares are a quick and low-effort way to participate in IBS awareness and spread the word very quickly. The IBS Impact main website has just been updated in late March 2019, replacing old links and/or adding new material on almost all pages in time for IBS Awareness Month.

3) If you’re not comfortable being public, you can still quietly distribute information in public places. IBS Impact has business cards with our logo available free for the asking. IFFGD, in the U.S., has free downloadable awareness posters and other resources. The Gastrointestinal Society, in Canada, distributes free information packets and pamphlets that can be ordered online and mailed to addresses within Canada, as well as its own downloadable IBS Awareness poster and articles.  The IBS Network in the United Kingdom also offers a variety of IBS fact sheets to its paid members. Leave these materials in public displays or bulletin boards in community centers, libraries, medical offices and hospitals, pharmacies, banks, post offices, college campuses, wherever many people go every day.

4) Volunteer to share your story on the IBS Impact sites by using the contact links on the main website. We welcome diverse perspectives from people with IBS and their families and friends, and will be welcoming guest bloggers later this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name and country of residence. IFFGD also accepts personal stories for its websites, anonymously or with names. IFFGD also occasionally quotes people with IBS in its publications. The IBS Network in the U.K. has recently made more use of personal stories as well.  For the past few Aprils, registered dietitian and IBS blogger Kate Scarlata, RDN has launched the #IBelieveinyourStory social media campaign and fundraiser for two academic research centers studying IBS. She encourages people with IBS to also share their stories on social media and use the hashtag.  As of this year, 2019, IFFGD is also encouraging affected people to use social media to communicate with friends, family and coworkers with its own hashtag #UnderstandMyIBS

5) Interact with the media. When there is coverage of IBS-related topics in mainstream print or broadcast stories or blogs, send or post your comments and corrections. This lets the media and other readers, viewers or listeners know we are out here as a community and that we care about how IBS is portrayed. IFFGD occasionally gets requests from the media to interview affected people. If you are interested, let IFFGD know that it can contact you. The IBS Network also sometimes publicizes requests from UK-specific media. Occasionally, IBS Impact does as well. For a past discussion of the media and IBS, see the November 6, 2011  post. Read about an advocacy success with a major U.S. media outlet in the January 20, 2014 blog post,  and IBS Impact’s more recent response to widespread, grossly inaccurate reporting involving IBS on October 23, 2017.

6) Participate in a research study or register for a database of potential volunteers so that scientists become more aware of our needs. Some studies are online or through the mail or phone. We regularly list some open studies and databases on this blog, and on the main website, and/or share them on social media,  and many of the resources we link do as well. Currently, as of April 2018, there are listed opportunities in the United States, the United Kingdom, Australia and a European Gastroenterology Foundation worldwide online survey available in 9 languages. We always welcome additional studies from reputable organizations, academic medical centers or clinics and pharmaceutical companies for listing consideration and encourage them to contact us.

7) IBS Impact is not a charity, but consider donating to one of the GI-related organizations or research facilities in your country. Many are listed on our links and research pages of the main site. It is very important for all non-profits to show that they are supported by their own constituency (the people whom they represent) when they approach other funding sources.  It is true that many IBSers don’t have a lot of money to spare, but even small amounts help. Several years ago, one person with IBS stated that if every person with IBS in just the U.S, the U.K. and Australia alone committed a dollar or pound a month, we’d have over a billion a year. If you’d like, have a fundraiser. IFFGD and other charitable organizations are generally glad to assist their supporters in these efforts. For more on why financial support to IBS entities is important, see this July 22, 2011  post and its August 25, 2014 followup.

8) If you absolutely cannot donate directly, use Goodsearch/Goodshop and/or Amazon Smile (both in the U.S.)  or iGive  (in the U.S. or Canada) or Everyclick (in the U.K.) as your search engines or online shopping portals on behalf of the gastrointestinal charity of your choice. These sites all work slightly differently, but participating merchants designate percentages of each transaction to specific organizations you indicate. It doesn’t look like much each time, but the amount adds up if you use them consistently. Nothing extra comes out of your own pocket, and the charities do get the money.

9) Write to legislators or policy makers to support issues of importance to the IBS community. IFFGD can help U.S. citizens with current U.S. legislation of concern to functional GI and motility disorders. If you prefer not to go through an organization, you can do so yourself. Often there are separate state issues as well, which, when possible, we attempt to publicize on this blog. The IBS Network occasionally posts U.K. specific advocacy on its website and social media.

10) If you’re ambitious, organize an awareness event, especially those of you who are students or health professionals. Talk to a health professions class or go to a health fair. For another discussion of why IBS awareness is important, see this July 9, 2011 post. GI organizations, including the ones listed above, are often happy to assist their supporters with grassroots efforts if desired.

There are many more than 10 possible ways to advance the cause of IBS awareness worldwide. IBS Impact was founded on the belief that awareness is an ongoing process that should not just happen one month a year, so don’t just restrict yourself to April. But every action, small or large, multiplied by many people with IBS and our supporters moves us closer to a time when IBS is widely understood by the general public and when the medical and social needs of people with IBS as a community can be more easily met.