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

February 16, 2017

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

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

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

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

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

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

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


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

January 29, 2017

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

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

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

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

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

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

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

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

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

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

 


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

January 13, 2017

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

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

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

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

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

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


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

October 23, 2016

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

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

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

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

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

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

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


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

August 30, 2016

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

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

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

 


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.


Guest Post: Let’s Work Together to Manage IBS

April 10, 2016

IBS Impact is pleased to welcome a guest blogger this week for IBS Awareness Month. We thank him for his time and important insights.

Jon S. has IBS and lives in the United Kingdom. He has a degree in biochemistry and now works as an analyst in the tech sector. In his spare time, Jon follows developments in the science behind, and treatments for, IBS. He shares this knowledge via his blog (patientj.wordpress.com) and via support to IBS sufferers on Health Unlocked.

For many sufferers, despite the international Rome diagnostic criteria in existence since 1991, (see page 889, section C1 at link) IBS still feels like a diagnosis of exclusion: we have a series of digestive problems but blood or other tests rule out anything more ‘serious’. Many of us initially don’t understand the concept of functional disorders like IBS or how they are real but do not show up on currently available tests. As a result, we find ourselves placed in what appears to be a catch-all umbrella term for unexplained bowel symptoms: irritable bowel syndrome. This situation is far from ideal: it can make patients feel their condition isn’t being taken seriously, and frustrated when alternative diagnoses aren’t considered, or even known about.

The good news is that more is being understood about IBS every year, and the Internet and social media are useful ways for sufferers to learn more about their illness and discover alternative treatments or problems their own doctors might not know about. But we’re still a long way off fully applying this learning in the clinical environment. Although the updated Rome IV is due out next month, many other diagnostic tools aren’t available in the clinical setting yet, we still don’t know what some of the causes are, and because of the way medicines are licensed and approved, it may take time for some experimental treatments to be available for use. It’s also clear that not all frontline doctors are fully abreast of even the more recent treatments for IBS.

So, in the meantime, what can be done to help improve the treatment and management of IBS? I believe there are changes we can make as patients, clinicians and institutionally that will benefit everyone. However, these changes require humility and the willingness to want to improve to have the best chances of success.

Patients

First of all, we as patients need to understand and accept that there isn’t a silver bullet for IBS. Medical and scientific professions don’t understand all the causes for IBS, and even when we do have evidence of a trigger, we don’t necessarily understand the underlying biochemical and physiological reasons for how the triggers give rise to symptoms, or even how to treat it.

For this reason, treatment of IBS is a process of trial and error. And often error. It can take several months or years to discover the right treatment, or combination of treatments, to combat an individual’s symptoms. And as there is no magic pill, we also need to look at our own lifestyles and accept that these, too, could be contributing to our problems. Some patients find that poor diet and/or endemic stress and anxiety in general or triggered by life events can exacerbate IBS. This isn’t always the case, and isn’t necessarily easy to change, but in my experience it is one of the things sufferers are reluctant to address.

We should also be alive to the fact that we might not be able to treat IBS at all. A significant proportion of patients (20-25 percent) will find no improvement through managing their stress and altering their diet. And even if this is possible, for many it will still require the long-term management of our symptoms, making life as tolerable as possible, but not necessarily clearing it up altogether. In this way, IBS is a silent disability, but something we can hope to change over time through things like IBS Awareness Month and political campaigning.

And we can also do lots to understand our symptoms, too. In the UK, pages like the NHS Choices’ website, the IBS Network and NICE Clinical Guidelines provide good starting points on IBS management and clinical best practice, the majority of which will be applicable regardless of which country you live in. This doesn’t mean we shouldn’t trust our doctors. Believe it or not, the majority of the time the doctor is probably right: it is IBS as opposed to anything more serious. However, I feel that sometimes we feel let down by the medical profession when they don’t seem to support us, or when the treatments don’t work. We can only overcome this by understanding more about our condition and working with our doctors to explore our symptoms more.

 

Doctors

As in any profession there are excellent doctors and some pretty bad ones and then the whole range of skills and competencies in between. Indeed, partly because I have several friends who are doctors, I have a considerable amount of appreciation for the profession. And I think that anyone who has worked in a high-pressure environment where the policies, procedures and technologies are constantly changing can appreciate how difficult it must be for the average family doctor to amass and apply a growing and shifting body of knowledge and best practice.

All the same, I hear too many stories of patients who feel like their doctor doesn’t care or understand, or people who’ve reached their wit’s end because nothing appears to be working. I feel these are both cases where doctors have failed: if doctors have lost their desire to care for people, they have failed their patients; if they have lost their passion to solve medical problems, then they have failed themselves.

That said, I think there are a few things that doctors can do to better support their patients. To start with, how would you adapt your approach if you considered IBS more a symptom than a diagnosis? Would this make you more willing to look at differential diagnoses or change how you give advice?

Moving on, there are a range of treatments available but not every treatment will work for every patient. After I’d seen four different GPs, only the last one explained that they’d like me to try one drug first and then if that didn’t work we could review later and either change dose or drug. But why had it taken four doctors before one said “this drug might not work but I want to start you on the drug with the fewest side effects…”? We’d like you to work with us but it sometimes sounds like we’re being given a cream for a rash that will go away in a couple of weeks.

Work with your patients to try and help us understand the underlying cause(s) of our IBS and the current research understanding of what it is and what can be done to help us. Clinical standards will vary from country to country but I suspect, Rome criteria aside, most will advocate at least some blood tests to rule out other disorders. Some patients would benefit (or just like to know) what any tests looked for and found; it may also help very anxious patients understand why you are ruling out more life-threatening conditions. If tests aren’t indicated or helpful, which criteria or considerations are being used and why?

We appreciate that you’re busy but please be patient with us and take some time to explore our own theories of what might be behind our IBS. One of the most frustrating things for sufferers is to be told that such-and-such a condition is unlikely, but then do no tests to prove or disprove that. I accept that some diagnostic tests are too dangerous or expensive but for an enigmatic illness like IBS, any number of things could be causing the symptoms and we need your help to find out. We need more patient-scientists but that is only possible with the support of more-knowledgeable professionals. We have more time on our hands to explore our symptoms and we want to get to the bottom of them (if you’ll pardon the pun). I’m not saying that every wacky thing out there on the Internet should be given credence but talk us through your reasoning, explore alternative diagnoses, and agree on a strategy with us to help rule other factors in or out and pursue treatment.

Finally, please update yourselves on the latest clinical guidelines as well. I have heard stories about, and experienced, doctors who have not conducted appropriate tests or advised vastly outdated treatments. And if you are still at a loss, please consider sending us to a specialist, especially if together we have tried several treatments and tests and are still none the wiser.

 

Institutions

Ultimately, institutional changes will have the biggest impact on patients and doctors alike.

First of all, we need more cost-effective ways to help patients manage their IBS. Is it sensible to use up a doctor’s time for routine management of an IBS case? In the UK, the IBS Network advocates the training of specialist nurses in the NHS to support IBS sufferers, a suggestion that would no doubt benefit sufferers in other countries as well.

I would go one step further and give pharmacists a greater role in managing IBS, too. Pharmacists will already be aware of the various drugs licensed for treating the condition and their contraindications; they may even spot how a patient’s existing cocktail of drugs might be contributing to or causing IBS symptoms. In other words they seem ideally placed to work with patients to discover the most suitable drug(s) to treat their symptoms. We would also provide them with additional training to know when to recommend a dietician or alternative therapies.

I would also like to see institutions loosen the treatment guidelines for IBS. For instance, in the UK, the NICE advice is a useful starting point for managing and diagnosing IBS in patients but it potentially stops clinicians from using their scientific and medical judgement to request alternative tests or try out certain treatments with their patients (with the patient’s consent of course). We don’t know what causes IBS so provided a drug is safe to give and is being given for a clinical purpose, what is wrong with doctors being able to prescribe something to see if it helps a patient?

In short, there are several ways we can improve the diagnosis, management and treatment of IBS. Things start with small changes in how we as patients approach our discussions with doctors, and doctors’ willingness to engage in a conversation with patients. These will go someway to improving the approach to managing IBS. However, both patients and doctors are likely to be held back unless there are some concomitant institutional changes made as well. Policy changes aren’t always easy, and there can sometimes be reluctance in various quarters to implement change. But, at the end of the day, a condition that affects up to 20 percent of the population needs better solutions to manage limited resources in the best way possible for both patients and practitioners alike.