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.)


7 Years and 8 Irritable Bowel Syndrome (IBS) Awareness Months of Forward Motion

April 14, 2015

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

Two 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 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.

 On April 10, 2014, I reported in a similar vein on progress for the IBS community from the May 2013 to April 2014. Now, continuing the tradition during my own seventh year and eighth  IBS Awareness Month, once again, reviewing the archives of this blog, I can observe small steps forward in just a single year.

Progress in the science of IBS:

In the past year, this blog often commented on new areas of promising IBS research,  such as genetics, the microbiome, and new insights into symptom patterns of IBS. 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 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:

In August 2014, the American College of Gastroenterology issued its most recent evidence based review on the treatment of IBS. The last such document was published in 2009. In November 2014, the American Gastroenterological Association followed suit with its own updated medication guidelines.  In December 2014, the Rome Foundation, composed of an international group of leading functional gastrointestinal disorder experts met to finalize the Rome IV diagnostic criteria, which are expected to undergo the usual process for journal  publication by 2016. Most recently, in February 2015, the NICE guidelines for the diagnosis and treatment of irritable bowel syndrome in adults in the United Kingdom were also updated from the previous 2008 version.

Several investigational medications and other non-pharmaceutical treatment options are always in the research pipeline in various parts of the world, and at least one, Rifaximin (brand name Xifaxan), previously denied approval in 2011 with a request for further studies for use in IBS with diarrhea, is currently awaiting a U.S. Food and Drug Administration decision on its most recent application. Next month, the FDA will hear directly from people with IBS and three other functional gastrointestinal disorders in a public meeting as part its Patient Focused Drug Development initiative.

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

In the past few months, the International Foundation for Functional Gastrointestinal Disorders, the Drossman Center for the Education and Practice of Biopsychosocial Care, and the University of Michigan have been inviting adults with IBS from the United States and Canada to take part in an online survey on experiences with the physician-patient relationship. It is hoped that the insights gained from this research can be used to improve overall care for people with IBS.

Progress in societal supports for people with IBS:

In August 2014, a Restroom Access Act was signed into law in Delaware. 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. Search the Ally’s Law tag in the right sidebar to see previous posts and other states where similar laws apply.

As noted on this blog on January 21, 2015, the IBS Network is presently making efforts to expand local, in-person self-help/support groups for people with IBS in the United Kingdom.

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 (HR 842) through its second attempt at Congressional passage, with the support of IBS Impact and other groups and individuals. While the Act did not pass by the end of the 113th Congress in December 2014, it picked up bipartisan support of Representatives from several states. It is expected to reintroduced in the current 114th Congress under a different Act number this year. See the Legislation category, 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.

The University of North Carolina Center for Functional GI and Motility Disorders continued its pioneering commitment to easily accessible public education on IBS and other functional gastrointestinal disorders with its June 2014 Patient Symposium, conducted live and online, allowing people all over the world to participate. It also briefly brought back its monthly Expert Updates, also by video.

Douglas Drossman, MD, MACG, the UNC Center’s retired co-founder and co-director has brought this same commitment to his present roles as the founder of Drossman Gastroenterology, the Drossman Center for the Education and Practice of Biopsychosocial Care and the president of the Rome Foundation, with an online webinar for people with IBS and families on the doctor-patient relationship later this week. This webinar is a collaboration among IFFGD, the Drossman Center and the American College of Gastroenterology. The IBS community is fortunate that Dr. Drossman’s work and voice as one of the foremost international experts in the field continue to be influential.

IBS Impact’s site hits for the main site, this blog and social media are holding steady or increasing overall. We have reached over 100 different countries and territories with this blog alone and the number of social media followers has hit previously unprecedented numbers this past year. Soon, we will be launching a redesigned and updated main website better reflecting present interests and needs of our diverse readership.

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.


Free Online Webinar for IBS with Dr. Drossman, “How to Make the Most of Your Doctor Visit” on April 16, 2015

April 4, 2015

The American College of Gastroenterology, the Rome Foundation, and the International Foundation for Functional Gastrointestinal Disorders (IFFGD) have announced that for IBS Awareness Month, they will be sponsoring a free online webinar presented by Douglas Drossman, MD, MACG on “How to Make the Most of Your Doctor Visit.” The webinar will take place on Thursday, April 16, 2015 from 8:00-9:00 p.m. Eastern time. The webinar is designed for people with irritable bowel syndrome and family members, but health care professionals are also welcome to attend.

Dr. Drossman, a leading, internationally-known expert on IBS, functional gastrointestinal disorders, doctor-patient relationships and the biopsychosocial approach to medical care, is President of the Drossman Center for the Education and Practice of Biospsychosocial Care, President of the Rome Foundation, Professor Emeritus of Medicine and Psychiatry at the University of North Carolina at Chapel Hill, and retired co-director of the University of North Carolina Center for Functional GI and Motility Disorders, along with many other pivotal roles in the development of the field of functional gastrointestinal disorders like IBS over his 40+ year career.

Dr. Drossman will take questions of general interest at the end of his presentation, or they can be emailed in advance through the American College of Gastroenterology at jgaulin@gi.org. Further details are available at the link below. To participate in the webinar, please use the link to register. You will need to provide ACG with your full name and email address so that instructions for accessing the webinar on the scheduled date can be sent to you. It is open to anyone in any geographical location who has Internet access fast enough to handle streaming video, audio and chat technology.

“How to Make the Most of Your Doctor Visit” Webinar with Dr. Drossman, April 16, 2015

This is a tremendous and unique opportunity, especially for people with IBS or their loved ones to hear from and communicate directly with one of the world authorities and pioneers in the research, education and treatment of IBS. IBS Impact thanks ACG, the Rome Foundation and IFFGD for making this webinar possible. We also thank Dr. Drossman for taking time out of his busy schedule to make himself available to the general public, and for his long decades of commitment to making functional gastrointestinal disorders like IBS a serious field of medical research and to supporting and treating many who live with these complex conditions.

 

 


Something Traditional and Something New for Irritable Bowel Syndrome (IBS) Awareness Month 2015

April 1, 2015

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.

This blog and IBS Impact social media have been quieter than usual in recent weeks, in part because those of us behind the scenes have been working on a major redesign and update of the main IBS Impact website. While it’s not ready yet, we do hope to launch publicly within several days. So especially if you are encountering this blog for the first time, please stay tuned for the announcement, unveiling and other interesting things shortly. In the meantime, part of this post returns to one of our now traditional “April is IBS Awareness Month” standbys.

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 a week 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.

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/the Digestive Health Alliance has free downloadable awareness posters and other resources. The Irritable Bowel Syndrome Self Help and Support Group online forum based in Canada that draws visitors from many countries worldwide, has a downloadable brochure in English explaining IBS to those who do not have it, with translations in Simplified and Traditional Chinese, Swedish and German on the website. The Gastrointestinal Society, also in Canada, distributes free information packets and pamphlets that can be ordered online and mailed to addresses within Canada.  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 hope to be welcoming some guest bloggers this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name. IFFGD also accepts personal stories for its websites, anonymously or with names. IFFGD also occasionally quotes people with IBS in its publications.

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. For a past discussion of the media and IBS, see the November 6, 2011  post. Read about a recent advocacy success with a major U.S. media outlet in the January 20, 2014 blog post.

6) Participate in a research study 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 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.

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. A few 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.

8) If you absolutely cannot donate directly, use Goodsearch (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 that 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.