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.

 


Online Clinic for Bladder, Bowel and Digestive Health Available July 6-10, 2015

July 6, 2015

TalkHealth, a social media community in the United Kingdom that provides health information and online forums, and monthly “online clinics” where participants can ask questions of health experts and organizations for a given category of conditions, is currently conducting its annual Bladder, Bowel and Digestive Health Clinic.

TalkHealth is presenting this month’s clinic in cooperation with NHS Choices, the Bladder and Bowel Foundation, The IBS Network, which is the U.K. national charity specifically for irritable bowel syndrome, and PromoCon, a national service of Disabled Living for adults and children facing continence issues. The 2015 Bladder, Bowel and Digestive Health Clinic, which is an online forum, is currently open and accepting questions for the above dates only. Readers can access it by clicking the above link.

Some past clinic topics for various health conditions, including the 2013 and 2014  bladder, bowel and IBS clinics, and the August 2013 clinic for chronic fatigue syndrome (also known as myalgic encephalomyelitis) or fibromyalgia, both of which commonly overlap with IBS, are archived on the TalkHealth website, although they no longer accept questions

IBS Impact hopes TalkHealth provides another source of reputable information and support to our U.K. readers. In addition to the clinic this month, please browse the rest of the TalkHealth website, including the online forums for IBS, and feel free to leave comments on this post for the benefit of other IBS Impact readers as to if you find the resources useful.


Guest Post from New Zealand for IBS Awareness Month: We Should Be Able to Talk About This

April 22, 2015

IBS Impact is pleased to welcome a guest blogger this week. Jay Thompson-Munn is now self-employed as a graphic designer and virtual assistant, after transitioning from high-level administrative employment in order to accommodate her IBS and other health conditions which commonly overlap with IBS. She also has several family members with IBS and/or other GI conditions. Jay blogs on various interests at A Jay in the Life and is the administrator of a new New Zealand-specific IBS group on Facebook, IBS Support NZ, to which she welcomes members. She wrote this post specifically for IBS Impact for IBS Awareness Month 2015. We thank her for sharing her perspectives with readers.

I’ve had digestive issues for as long as I can remember. My Mum and her sisters have some form of IBS or gluten and/or wheat intolerance. Yet, oddly it seems to only affect the women in my family. They all experience fairly similar symptoms to me: cramping, chronic constipation or diarrhea, and an aversion to fatty foods, but issues with dairy and/or gluten are the most common for us. Yet none of us have coeliac disease or an actual gluten/dairy allergy, just intolerances. No one on Mum’s side of the family would ever eat “white bread”, (including things like croissants, scones etc.) unless it was a special occasion. We always had grainy breads, or if we were skint, wholemeal – as it’s a bit less tough on the intestines.

I think it helps a lot, having family members who suffer from the same issues. But I guess I always thought it was “normal” to have this happen. Awful as it is, that it happens to so many of us. It’s great to be able to talk to relatives about it knowing they have been through a similar experience and really understand. I think it’s like that with any illness though. But of course it really is very different for every individual.

I’m always the person that gets an “upset stomach” while travelling. People often say I have a “sensitive stomach”. It seems to get off-kilter bacteria-wise very easily and I rely on bottled water even when just visiting Australia! Yet tap water is fine in New Zealand. Over the years, I’ve picked up a couple of different types of bacterial food poisoning (in 2009 I managed to contract campylobacter and was sick for over a month) I understand this can exacerbate gut issues.

I have had to rearrange my life around IBS. One of the reasons I now work from home is that IBS can be a particularly big issue for me in the morning. I often need to be very near a toilet when I’m having a bad-gut day/week. Another reason is that it’s actually hard for me to get up early enough to allow for time for breakfast and to use the toilet before leaving for work – I get a sense of urgency with bowel motions (particularly if I drink coffee, which I no longer do) and it’s a very real concern. It can be incredibly uncomfortable/painful/stressful if I can’t get to a toilet fast enough. That has improved now that I’ve mostly cut gluten out of my diet. But it was pretty hard to dash off to the loo while at work in the morning, from a meeting etc.

I started to feel guilty about spending so much of my salaried time in the bathroom. That is not a nice feeling. Even now, the first thing I do when in a new place is figure out where the bathroom is. I was recently diagnosed with Generalised Anxiety Disorder (GAD) and a big part of this was the stress around finding or being near a toilet when I needed to be, or having to ask strangers where the bathrooms are, or wondering if I was “breaking the rules” using a disabled toilet.

I also have a few other chronic illnesses, one of which is Endometriosis – which often brings its friend IBS along with it. I’ve had to deal with a combination of chronic constipation or chronic diarrhea for a long time. While I have experienced dreadful pains from either or both of these conditions, I’ve had such violent diarrhea and cramps that my body gets so exhausted from the physical stress it’s under, that in the midst of this, I passed out on the bathroom floor. Just what I want my husband to come home to! It’s horrible.

Luckily I have health insurance (these medical woes are so expensive to deal with!), so I was able to see a gastroenterologist through a referral. He recommended seeing a nutritionist, and mentioned the low FODMAP eating plan – where you eliminate all FODMAPs for 6-8 weeks and slowly reintroduce them to see which are causing you issues. I have been following the low FODMAP lifestyle for nearly 2 years now, it has been very successful for me. There is still not a heap of personal experiences with FODMAPs online and still a lot of foods untested for FODMAP levels etc. But it’s certainly making itself known around the health communities. A lot of people are asking questions about it. And I talk about it, a lot! I will happily explain it to anyone who is willing to listen.

On that note, I feel IBS and the treatment methods are not talked about enough. I recently came across a brilliant hash tag on Twitter (started by inflammatory bowel disease (IBD) blogger Sam Cleasby of “So Bad Ass”) #StopPooBeingTaboo – I genuinely think that if we discussed this more often and more openly, people would have relief from their symptoms faster. They would realise it’s VERY common and they absolutely do not need to suffer alone. For example, I have only just recently learned, after 27 years on this planet, that there isn’t really such a thing as a “bowel”! It’s a term used to describe the digestive tract, usually incorporating the small and large intestines. The large intestine is also the colon. These things make up your bowel. I did NOT know this. My research led me to believe the small bowel was the large intestine. No gastroenterologist, GP, or doctor of any form has EVER bothered to show me a diagram (except the Bristol stool chart… but that’s another story) or model of the organs and explain how they work and what actually happens physiologically with IBS.

In terms of treating my IBS, I tend to prefer the natural approach (I was on a lot of heavy painkillers for a long time for Endo and I just don’t want to take pills if I don’t need to) – things that have worked best for me are: regular exercise (yoga is particularly good at massaging the digestive organs), limiting my gluten intake and adhering to the low FODMAP diet, peppermint oil, loads of peppermint tea, ginger tea, cutting back on caffeine and working from home. I have also very recently started drinking Kombucha tea, though there isn’t any conclusive proof this works, it has been used as a digestive aid in many countries for hundreds of years. And I’m currently experimenting with eating more probiotic-fermented foods to increase the positive gut flora.

As for where I go to find information about IBS, how to treat it, what it is etc. I generally take to the Internet for info. I was never really pointed in the direction of resources, to be honest. I have done a lot of sleuthing on my own to find out. I ask doctors very specific questions, often. I look at forums, chat to others, read blogs etc. and a lot of sufferers who talk about their IBS experience online are still too scared/ashamed to use their real name. I think that’s sad. We should be able to talk about this. It’s a bodily function we have very little control over. I have listed some hopefully useful resources below:

Support group:
I was told there isn’t an active NZ wide support network, so I made one! I have created this group on Facebook – I hope to start a website soon!

Monash University FODMAP app:
This is a little on the expensive side for an app, but I have found it endlessly useful while adhering to the low FODMAP diet. It has filters for your specific sensitivities and recipes. I use it at least once a day! It was well worth spending money on.

(Note from IBS Impact. The price of the Monash University app varies by country and currency. IBS Impact receives no funding for the link to Monash’s materials or their sale, but regards them as highly reputable and scientifically accurate, as the original academic research center to develop the low-FODMAP approach. It is our understanding that proceeds are used to continue low-FODMAP research and testing of foods.  As with all of the information on this blog, our main website and social media, it is provided in the interest of reputable public awareness and advocacy, and assisting blog readers dealing with IBS to make informed choices for themselves or their families.)


Online Clinic for Bladder, Bowel and Digestive Health Available July 16-22, 2014

July 9, 2014

TalkHealth, a social media community in the United Kingdom that provides health information and online forums, and “online clinics” where participants can ask questions of health experts and organizations for a given category of conditions, has announced that the July 16- 22, 2014 topic will be the bowel, bladder and digestive health. TalkHealth is presenting this month’s clinic in cooperation with NHS Choices, the Bladder and Bowel Foundation, The IBS Network, which is the U.K. national charity specifically for irritable bowel syndrome, Core, which is an organization for all gut and liver diseases, and PromoCon, a national service of Disabled Living for adults and children facing continence issues. The 2014 Bladder, Bowel and Digestive Health Clinic, which takes the form of an online forum, is currently open and accepting questions in advance and through the dates of the clinic.  Readers can access it by clicking the above link.

Some past clinic topics for various health conditions, including the July 2013 bladder, bowel and IBS clinic, and the August 2013 clinic for chronic fatigue syndrome (also known as myalgic encephalomyelitis) or fibromyalgia, both of which commonly overlap with IBS, are archived on the TalkHealth website, although they no longer accept questions

IBS Impact hopes TalkHealth provides another source of reputable information and support to our U.K. readers. In addition to the clinic this month, please browse the rest of the TalkHealth website, including the new online forums for IBS, and feel free to leave comments on this post for the benefit of other IBS Impact readers as to if you find the resources useful.


Another IBS Awareness Month and What the Year Has Brought Us

April 10, 2014

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

Last year, 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 last year marked my sixth April with IBS. I observed how for me and  many other people with IBS 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 have 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.

April 2014 marks my sixth year and seventh April as a person with IBS, and even in the space of a single year, there are steps forward to report.

Progress in the science of IBS:

In the past year, this blog has posted several times on new areas of promising IBS research, including genetics, the microbiome, possible cellular metabolism and the use of magnetic resonance imaging to study gut motility. These varied endeavors are taking place in or with the involvement of many scientists from many countries. See the following posts: October 6, 2013, February 9, 2014 and March 8, 2014, as well as other posts in the Research category of the blog sidebar to see the range of research news and clinical trial opportunities mentioned here over time.

Progress in the treatment of IBS:

Linaclotide, a newer prescription medication already in use in the U.S. for IBS-C, was launched in Europe as Constella beginning in mid-2013. Several other investigational medications and other non-pharmaceutical treatment options such as diet, probiotics and psychological interventions, are always in the research pipeline in various parts of the world. In the spring of 2013, through the advocacy of IFFGD, IBS Impact and others, the U.S. Food and Drug Administration selected IBS, GERD and gastroparesis for the FDA Patient Focused Initiative.

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

Recently, a large, multi-center study led by Jeffrey Lackner, PsyD of the State University of New York at Buffalo, collaborating with colleagues at Buffalo, Northwestern University, Wayne State University and UCLA, was published showing that contrary to the beliefs of many health care professionals, factors other than gut symptoms, such as fatigue, non-gastrointestinal symptoms and negative social interactions have a large correlation to the perceptions that study subjects with IBS had of their own health. See the article in the American Journal of Gastroenterology and podcast with Dr. Lackner here.  This is research that has gotten much attention in recent weeks and months and seems to validate the lived experiences of many of us with IBS.

Progress in societal supports for people with IBS:

Largely through the efforts of our peers in the inflammatory bowel disease community, additional U.S. states have adopted Restroom Access Acts, popularly known as Ally’s Law, or introduced bills to enact one. These individual state laws 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. See the May 10, 2013 and March 14, 2014 posts.

Progress in advocacy and awareness:

The International Foundation for Functional Gastrointestinal Disorders and its grassroots arm, the Digestive Health Alliance  (IFFGD/DHA)  continue to shepherd the Functional GI and Motility Disorders Research Enhancement Act (HR 842) through its second attempt at Congressional passage, with the support of IBS Impact and other groups and individuals. The Act has picked up several new co-sponsors in the U.S House of Representatives since April 2013. See the March 2, 2013 and September 27, 2013  posts for more about HR 842, IFFGD has also been an ongoing advocate for veterans, who are disproportionately at risk for functional gastrointestinal disorders like IBS. In November 2013, the Pediatric Research Network Act, which IFFGD  joined many other health organizations in supporting, was signed into law. While this law is not specific to IBS or functional GI disorders, the law addresses pediatric-specific medical research, and its resources and insights may translate into gains for children and youth who have IBS or related gastrointestinal conditions.

At least twice in the past year, Douglas Drossman, MD, FACG, has spoken out publicly about his concerns regarding high profile media coverage of IBS or functional GI disorders. (See the September 20, 2013 and January 20, 2014 posts.) Dr. Drossman is the founder of Drossman Gastroenterology, the Drossman Center for the Education and Practice of Biopsychosocial Care, the founder and co-director emeritus of the University of North Carolina Center for Functional GI and Motility Disorders, the current president of the Rome Foundation, and one of the foremost international experts in the field. His work and his voice have been and continue to be influential.

IBS Impact’s site hits for the main site and this blog, as well as followers for this blog and social media continue to increase year by year, and we have reached over 100 different countries and territories with this blog alone. Record daily and monthly hits were reached last November with this post on common misconceptions about IBS.

These are just a handful of examples of forward motion 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.


University of North Carolina Study Finds Possible Maternal DNA Link in Small Subset of Irritable Bowel Syndrome (IBS)

March 8, 2014

Many people with irritable bowel syndrome are the only known people with IBS in their families, while others report relatives, sometimes many, who also have or had a diagnosis or symptoms suggestive of IBS and/or one or more of several other chronic conditions that commonly overlap with IBS. This suggests that there are genetic influences in the development of IBS for at least some affected people. Narrowing down precisely what they are has been one of many diverse areas of IBS research in recent years.

A few weeks ago, a team led by principal investigator Miranda van Tilburg, PhD, Associate Professor of Medicine at the University of North Carolina Center for Functional GI and Motility Disorders, published results that show that a small percentage of cases appear, at least in part, to be linked to dysfunction in mitochondrial DNA. Mitochondria are subunits within cells that are involved in generating cellular energy. In human beings, mitochondria are inherited only through a person’s biological mother. Previous medical research has shown that problems with mitochondria also appear to be involved in other functional gastrointestinal disorders, chronic fatigue syndrome, depression and migraines, all of which are commonly overlapping conditions with IBS.

Dr. van Tilburg and her colleagues studied Caucasian adults who included 308 known to have irritable bowel syndrome (IBS), 102 healthy controls and 36 known to have inflammatory bowel disease (IBD). The researchers found probable maternal inheritance in 17.5% of study volunteers with IBS, in contrast to 2% in the control group and 0% of those in the IBD group. The researchers called this a “significant minority” who may have a form of IBS inherited through mitochondrial DNA. Dr. van Tilburg and her colleagues emphasized that the sample size was small, and the results should be replicated with larger groups and further research. There is no single IBS gene per se, that is known at this time.

These are intriguing results that appear to be promising in understanding possible causes of irritable bowel syndrome and, along with other recent genetic and biomarker research as discussed on this blog on February 9, 2014, perhaps collectively leading to usable diagnostic tests and improved treatment options in the long-term future. IBS Impact commends this important scientific work, and looks forward to further progress and answers for our community in the years ahead.


“Online Clinic for Bowel, Bladder and IBS” Available July 10-16, 2013

July 7, 2013

TalkHealth, a social media community in the United Kingdom that provides health information and online forums, and “online clinics” where participants can ask questions of health experts and organizations for a given category of conditions, has announced that the July 10-16, 2013 topic will be the bowel, bladder and IBS. TalkHealth is presenting this month’s clinic in cooperation with NHS Choices, Bowel Cancer U.K., ERIC (Education and Resources for Improving Childhood Continence), the Bladder and Bowel Foundation, The IBS Network, which is the U.K. national charity specifically for irritable bowel syndrome, and Core, which is an organization for all gut and liver diseases. The Bowel, Bladder and IBS Clinic page, which takes the form of an online forum, is currently open and accepting questions in advance and through the dates of the clinic.  Readers can access it by clicking the above link.

Some past clinic topics for other health conditions are archived on the TalkHealth website, although they no longer accept questions. Readers with IBS who also have the commonly overlapping conditions of chronic fatigue syndrome (also known as myalgic encephalomyelitis) or fibromyalgia may also be interested in TalkHealth’s online clinic for those conditions, which begins on August 14, 2013. That forum is currently locked, but should begin accepting questions closer to the clinic date.

IBS Impact is pleased to learn of this resource and hopes it provides another source of reputable information and support to our U.K. readers. In addition to the clinic this month, please browse the rest of the TalkHealth website, including the new online forums for IBS, and feel free to leave comments on this post for the benefit of other IBS Impact readers as to if you find the resources useful.