Guest Post for IBS Awareness Month: Navigating IBS and a Hypersensitive Body
by Lindsey Wondolleck
IBS Impact welcomes a guest poster this week. Lindsey Wondolleck lives in the Pacific Northwest with her husband, two young children, and their German Shepherd and cat. She has a degree in nutrition but is currently working in the insurance industry because it is a more flexible job that’s remote and can accommodate her IBS and chronic migraines. When she’s not running back and forth between soccer games and gymnastics, she’s outside gardening and making beeswax candles, or in the colder months, she’s needle felting and rewatching “Lord of the Rings” while sitting by the cozy wood-burning stove. We thank her for her time and willingness to share her experiences and insights to help others in the IBS community.
IBS was something I never really knew about, even though I probably had a mild form of it growing up. I didn’t think much of it when I was younger or a college student. It wasn’t until after I had my first child that two things had become worse around the same time: anxiety and stomach issues. Thinking back on my life, I now see the signs that I had general anxiety as a child, and I remember suffering now and then from stomach pains. It never was a concern for me then and it seemed manageable until I fell into a deep depression and anxiety loop about a year after my son was born. (Another health issue showed up around that time as well that went misdiagnosed for three years but now has been properly diagnosed with chronic migraines.) During that time of misdiagnosis, anxiety, and stomach issues, I felt like my body was attacking itself and I couldn’t figure out what was happening. My mental and physical health slowly got worse and by the time the pandemic showed up, suffering silently for months in my home, I hit a very low point. I would be running to the bathroom 4 times a day with urgent diarrhea and sometimes just fluids because I didn’t have any food to digest from the lack of eating. I had forced my GI and general practitioner to run every test they could to try and figure out what was going on with my GI system. I weighed 89 pounds (40 kg) and I had put myself into a major calorie deficit thinking that I had cancer somewhere in my GI system that the doctors could not see, even though all tests and all bloodwork came back normal. At this point, my doctor politely but sternly let me know that she could see my anxiety was not normal anymore and it was time to start anxiety medication. Of course, I put this off for years because my anxiety made me afraid of the side effects, but I gave in and said I would do it as it felt like my anxiety was harming my body more than the side effects would.
The rest is history. The anxiety medication gave me my life back and put me in the driver’s seat rather than the passenger seat. While my anxiety was a large contributing factor in triggering my IBS, it was, however, not the only one and because I no longer experienced unhealthy amounts of anxiety, I now had the brain space to be able to tackle my IBS and find ways to manage it. In the last two years, I have worked with a registered dietitian who was trained in the low FODMAP diet from Monash University, attended therapy sessions, listened to gut hypnotherapy on my phone, started exercising, prioritized a full night’s rest, joined the IBS Support (Official group – a science-based support group on Facebook run by a wonderful group of admins and made sure my stress and anxiety levels are at a manageable level. I can happily say that five years later I am mentally and physically in a much better space than I was. It was very discouraging to find out I have IBS at 26 years old when seeing friends around my age not having IBS dictate their lives. At 31 years old, I have learned to not let that bring me down anymore. I had finally accepted that I do have IBS and there is no cure for it, but I can manage and reduce my symptoms by avoiding my lifestyle triggers and food triggers. I still have bad days now and then, however I have more good days than bad days now. On the days I have an upset stomach, I go back to my IBS toolkit I’ve curated for myself and take the time to rest and recover. IBS is a gut-brain miscommunication disorder, and for anyone reading this, I want you to know that it’s okay that you have IBS. Please don’t feel hopeless. There are treatments and ways to manage your symptoms. I encourage you to find doctors who are sympathetic and willing to help you. Working with a registered dietitian was one of the most worthwhile investments I made for myself and I cannot recommend enough finding one that specializes in IBS. You got this! I hope my IBS journey gives you hope and confidence to accept your IBS diagnosis without fear and begin working on managing your symptoms!
April is Irritable Bowel Syndrome (IBS) Awareness Month 2024
April is Irritable Bowel Syndrome Awareness Month. IBS affects, depending on the source, anywhere from 5-15% of the population in different countries on every continent of the world. In the U.S, this prevalence exceeds that of diabetes, chronic kidney disease, asthma, adults with chronic heart disease, and, by far, inflammatory bowel disease (IBD), with which IBS is often confused. IBS Impact stands in solidarity with what Olafur Palsson, PsyD, full professor and leading researcher at the University of North Carolina Center for Functional GI and Motility Disorders once estimated as half a billion people with IBS around the globe. As noted in the January 10, 2012 post on this blog, in 2011, a Rome Foundation working team estimated that 40% of us are mildly affected, 35% moderately affected and 25% severely affected, with the last two groups significantly larger than that same group of professionals had previously thought.
Unlike awareness weeks and months for these and other common health conditions, it is often difficult to know this unless one follows certain IBS sites, but as time goes on, awareness gradually increases. In 2012, this blog first published a version of this post as “10 Things We Can Do for IBS Awareness This Month and Every Month,” which remains one of the most popular single posts in the history of this blog. That post has been revised and updated as needed every year since. Here are 10 possible strategies for how people with IBS in any country can increase awareness of IBS. Readers of this blog who are relatives and friends, with the permission of the person with IBS, feel free to help the cause too.
1) If they do not already know, talk to your family, friends, coworkers, classmates and medical providers about IBS. Having IBS is often an isolating experience, and some people with IBS who have “come out of the closet” have found that the stress of hiding and worrying about who knew and how much they knew actually triggered worse symptoms. No, not everyone will “get it” and that can be hurtful or tiring, but people without IBS will never learn to understand unless we are willing to tell them. Some of them will help you and it may be the people you least expect. Given that IBS is the most common functional gastrointestinal disorder FGID, more recently known as disorder of gut-brain interaction or DGBI, 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 X (formerly Twitter) and Facebook pages 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. On social media, #IBSAwarenessMonth has become an established hashtag over the years among people with IBS, families, GI organizations and leading IBS researchers. The IBS Impact main website has just been updated in late March 2024 replacing old links and/or adding new material on most pages in time for IBS Awareness Month.
3) If you prefer traditional means of distributing information, the IFFGD in the U.S., has a downloadable media release and media kits. The Gastrointestinal Society in Canada has its own downloadable IBS Awareness infograph and resources. The IBS Network in the United Kingdom also offers a variety of IBS fact sheets to its paid members.
4) Volunteer to share your story on the IBS Impact sites by using the contact links on the main website. We welcome diverse perspectives from people with IBS and their families and friends, and will be welcoming a guest blogger later this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name and country of residence, more details if you are willing. 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. Occasionally, IBS Impact does as well. For a past discussion of the media and IBS, see the November 6, 2011 post. Read about an advocacy success with a major U.S. media outlet in the January 20, 2014 blog post, and IBS Impact’s response to widespread, grossly inaccurate reporting involving IBS on October 23, 2017.
6) Participate in a research study or register for a database of potential volunteers so that scientists become more aware of our needs. Some studies are online or through the mail or phone. We regularly list some open studies and databases on this blog, and on the main website, and/or share them on social media, and many of the resources we link do as well. Currently, as of April 2024, there are listed opportunities in the United States, the United Kingdom, and Australia. We always welcome additional studies from reputable organizations, academic medical centers or clinics and pharmaceutical companies for listing consideration and encourage them to contact us.
7) IBS Impact is not a charity, but consider donating to one of the GI-related organizations or research facilities in your country. Many are listed on our links and research pages of the main site. It is very important for all non-profits to show that they are supported by their own constituency (the people whom they represent) when they approach other funding sources. It is true that many IBSers don’t have a lot of money to spare, but even small amounts help. Several years ago, one person with IBS stated that if every person with IBS in just the U.S, the U.K. and Australia alone committed a dollar or pound a month, we’d have over a billion a year. If you’d like, have a fundraiser. IFFGD and other charitable organizations are generally glad to assist their supporters in these efforts. For more on why financial support to IBS entities is important, see this July 22, 2011 post and its August 25, 2014 followup.
8) If you absolutely cannot donate directly, use Microsoft Rewards (in the U.S.) or iGive (in the U.S. or Canada) or Give as You Live (in the U.K.) as your search engines or online shopping portals on behalf of the gastrointestinal charity of your choice. These sites all work slightly differently, but participating merchants designate percentages of each transaction to specific organizations you indicate. It doesn’t look like much each time, but the amount adds up if you use them consistently. Nothing extra comes out of your own pocket, and the charities do get the money.
9) Write to legislators or policy makers to support issues of importance to the IBS community. IFFGD can help U.S. citizens with current U.S. legislation of concern to functional GI and motility disorders. If you prefer not to go through an organization, you can do so yourself. Often there are separate state issues as well, which, when possible, we attempt to publicize on this blog. The IBS Network occasionally posts U.K. specific advocacy on its website and social media.
10) If you’re ambitious, organize an in-person or virtual awareness event, especially those of you who are students or health professionals. Talk to a health professions class or study group. 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.
IBS Impact’s Top Countries and Top Posts of 2023
For the New Year, IBS Impact is once again participating in the common December-January blogger tradition of highlighting popular posts and interesting blog statistics from the year just past.
This blog reached readers in 63 countries and territories during 2023. The cumulative total is169 for the 12 years WordPress has made country statistics available to individual blog owners. While, predictably for an English-language site, most of the top 10 countries/territories this year are ones where English is one of the official languages, total blog hits span every continent, underscoring that IBS is a global problem, not the common, inaccurate stereotype of it as a nuisance disorder caused by overindulgent North American diets and lifestyles. A list of the top 15 countries, which is actually 23 this year, because of several ties of multiple countries each– better reflects the diversity of countries of origin represented, which appears to change somewhat every year. It is hoped that the vast majority are legitimate visits, even from those who might not have been searching specifically for information about IBS, and not simply potential spammers. In order, the countries are:
1. United States
2. United Kingdom
3. Australia
4. Singapore
5. Canada
6. Ireland
7. India
8. New Zealand
9. Spain and Romania (tie)
10. The Philippines and South Africa (tie)
11.Brazil and Belgium (tie)
12. Japan
13. France and Mexico and Vietnam (tie)
14. Finland
15. Germany and Portugal and Saudi Arabia and Austria (tie)
Below are the top 15 individual posts that received the most hits during 2023.
Most of the posts in 2023’s top 15 list were first published in 2011 through 2022. However, they continue to attract attention because most address topics that are of ongoing interest to people with IBS. Perhaps longtime readers can refresh their memories and newer readers will discover something interesting and useful.
There are also three posts from 2023 on this top 15 list that readers may have missed when they were first published in recent months. If so, take a look.
Please note that since this blog has been in continuous existence for 12 1/2 years, some links embedded in posts that are several years old, while valid at the time of publication, have inevitably become out of date and may lead to a dead link or completely different site. You may find the updated or a similar current resource on our main website. If not, feel free to leave a comment, and IBS Impact or other readers may be able to assist. In order, the posts are:
1.Designer Mychael Knight Could NOT Have Died from Irritable Bowel Syndrome (IBS), October 23, 2017
2. Education Laws and Resources for Students with Irritable Bowel Syndrome (IBS), August 27, 2013
3. Guest Post from a Teen for IBS Awareness Month: I Am No Longer A Lost Boy April 9, 2021
4. The Americans with Disabilities Act (ADA) and Irritable Bowel Syndrome (IBS), July 30, 2012
5. Guest Post for IBS Awareness Month: Making Sense of Unsupportive Family and Friends and Finding Supportive Others April 14, 2022
6. Guest Post From Australia for IBS Awareness Month: A Personal and Professional Journey April 13, 2019
7. Public Restroom Access and Irritable Bowel Syndrome (IBS), February 21, 2011
8: Guest Post for IBS Awareness Month: A Bit of Hope April 11, 2023
9. New Rome IV Diagnostic Criteria for Irritable Bowel Syndrome (IBS) Unveiled May 2016, June 9, 2016
10. Guest Post From a Parent for IBS Awareness Month: An Emotional Journey, April 26, 2021
11. April is Irritable Bowel Syndrome (IBS) Awareness Month 2023 April 1, 2023
12. Irritable Bowel Syndrome (IBS) and a Debate on “Can’t Wait” Cards, November 25, 2012 Please note that the blog originally linked in the above post as a basis for discussion no longer exists on WordPress.com. However, the ideas raised and the invitation by IBS Impact for readers and the IBS community to continue to discuss related concerns are still valid.
13. Restroom Access Act (Ally’s Law) Updates in Maryland and Maine, May 10, 2013
14. Guest Post for IBS Awareness Month: My Perceptions and Tips on Being a Supportive Spouse April 22, 2022
15. 15 Years and 16 IBS Awareness Months: Step by Step April 29, 2023
This blog was begun in July 2011, a few months after the launch of the main IBS Impact website, and a bit over a year after the inception of IBS Impact itself. It is intended as a supplement to the many resources on our main site, one that can be updated relatively quickly with time-sensitive news, advocacy and clinical trial opportunities, as well as providing well-researched, scientifically reputable information on IBS and commentary on broader issues affecting the IBS community that may not be widely discussed on other sites. It is meant to be useful to a broad readership: people with IBS and related conditions, both those who may have lived with IBS for some time and those with recent onset or who are new to IBS sites online, family members and friends, health care and human service professionals who may interact with us, and the general public. We are pleased that it continues to fulfill this role.
IBS Impact wishes everyone a happy, healthy, prosperous and productive New Year and looks forward in 2024 to advances in awareness, advocacy, research, treatment and community support systems that benefit the worldwide IBS community.
Updates to IBS Impact.com Main Website, December 2023
IBS Impact has recently completed the latest round of updates to many pages of our main website, IBS Impact.com,
The home page linked above and the advocacy page, IBS page, research page, IBS studies page, resources page, family and friends page, IBS and children page, and links page, all have additions or updates of content or links, or deletions of outdated links as of this month.
Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or X (formerly Twitter) in the light blue and white footer sections below each page of the main site). Each has slightly different information on an ongoing basis. Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material and links. The current site reflects resources in six English-speaking countries which are among the top sources of hits to the site and this blog: the United States, Canada, the United Kingdom, Ireland, Australia and New Zealand. Several additional countries are occasionally represented on various pages.
This blog has been in existence since 2011.Because of the redesign and transfer of the site to new hosting twice in 2015 and 2016, some links embedded in older posts on this blog or search engine results relating to IBS Impact.com may result in error messages, but you should still reach the site itself. If so, please use the navigation links at the top of the site to reach the desired subpage. No information that is still currently useful has been removed from the site, although in some cases, the location has changed. Only outdated details and occasional defunct links for which there is no replacement available at this time have been deleted. The date of last update is indicated at the bottom of subpages that change periodically.
Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and worldwide public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.
IBS Impact as an entity, is not directly affiliated with any other organization, site, or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations, and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide.
Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable evidence-based organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered. A contact form can be found on the main site, or comments can be left on this blog. Thank you to all of our readers and social media followers for your interest and participation.
15 Years and 16 IBS Awareness Months: Step By Step 2022-2023
by Nina Pan, IBS Impact founder and primary blogger for IBS Impact.
Ten years ago, on April 24, 2013, I wrote a post for IBS Awareness Month that began with some reflections on my personal experiences with IBS, as well as my motivations for IBS Impact. At that time, I had been living with IBS for over five years, and 2013 marked my sixth April with IBS. I observed how for many of us, dealing with the numerous actual or potential effects on a day to day basis often makes it difficult to recognize when progress is being made, either for us as individuals, or for the IBS community as a whole. I stated that it is only with the passage of time that I had begun to realize how some things are indeed changing, albeit slowly, for the better. In the rest of the post, I pointed out numerous areas in IBS research, IBS treatment, understanding of the impact of IBS on quality of life, increased societal support and advocacy that had seen concrete, positive change in just the five years and six IBS Awareness Months I had personally experienced.
On April 10, 2014 , April 14, 2015, and April 29, 2016, and April 30, 2017, May 8, 2018, April 30, 2019, April 30, 2020, May 3, 2021, and April 30, 2022. I reported in a similar vein, on progress for the IBS community in each respective year. Now, continuing the tradition during my own fifteenth year with IBS, with my sixteenth IBS Awareness Month now ending, once again, I can observe many small steps forward in just a single year.
Progress in the science of IBS:
In the past year, the science of IBS has continued to expand in many areas. These include, but are by no means limited to the impact of diet on the colonic microbiome, long term GI outcomes of COVID-19, the neurobiology of IBS, hypnotherapy and long term stress memory in the enteric nervous system, gut microbiome signatures for different IBS subtypes, mechanisms of abdominal pain and food intake, quality of life in IBS, addressing the unmet needs of patients with IBS, the FODMAP diet in a paediatric setting, IBS in men, histamine production and the gut microbiota, fecal microbiota transplants for IBS, and medical students’ perceptions of IBS versus inflammatory bowel disease.
These varied advancements in IBS research are taking place in or with the involvement of many scientists from many countries, and very often, volunteers with IBS from multiple countries per study as well. See other posts in the Research category of the blog sidebar, the IBS studies page of our main website or our Facebook or Twitter feeds to see the range of research news and clinical trial opportunities.
Progress in the diagnosis and treatment of IBS:
Several national or multinational guidelines for the diagnosis and/or treatment of IBS have been newly published or updated this past year.
The American Gastroenterological Association guidelines for IBS-D and IBS-C were released in June 2022.
Also in June 2022, the United European Gastroenterology Journal published European guidelines for the treatment of functional bowel disorders with diarrhoea based on the work of United European Gastroenterology and the European Society of Neurogastroenterology and Motility. IBS is the most common of many disorders in the functional bowel disorder/disorder of gut-brain interaction category.
In September 2022, the updated results of a consensus meeting in the United Kingdom on diet and IBS were published.
March 2023 saw the publication of the Indian consensus statement on irritable bowel syndrome in adults. This was a collaboration between the Indian Neurogastroenterology and Motility Society and the Indian Society of Gastroenterology.
During 2022-2023, the Rome Foundation has offered continuing medical education opportunities for fellow health care professionals in both gastroenterology and primary care on diagnosis and treatment. The Foundation also continues a program to mentor promising young functional GI researchers and expand collaborations with research centers and industry through the Rome Foundation Research Institute and has initiated several research grants as well as an award for effective doctor-patient communication. The Rome Foundation is also making efforts to formally bring dietitian professionals into roles in the Rome Foundation, in recognition of their importance in the health care of many people with disorders of gut-brain interaction including IBS. Finally, the Rome V updates to the Rome international diagnostic criteria, begun in 2021, continue to be developed with the participation of 144 experts from 27 countries, and are currently scheduled to be completed and released in 2026.
Several investigational medications or novel uses of existing medications, and other non-pharmaceutical treatment options are always in various stages of the research pipeline in various parts of the world.
Progress in understanding the impact of IBS and the barriers that remain:
The International Foundation for Gastrointestinal Disorders (IFFGD), in the U.S., formerly the International Foundation for Functional Gastrointestinal Disorders continues a comprehensive survey online survey of people with IBS, their experiences and unmet needs. This is a follow-up to a similar comprehensive multi-year survey by IFFGD and the University of North Carolina first begun in 2007. This previous study attracted a large number of responses internationally and its insights have been important contributions to IBS research, medical care and support systems since then. It is hoped that the current survey will also yield significant responses and long term positive impact for our community.
IFFGD and WebMD are also collaborating on another online survey to improve patient care for IBS.
Progress in societal supports for people with IBS:
IBS Support (Official), a science-based Facebook support group for which I am one of 14 administrators/moderators from 6 countries, currently has over 98,000 members, an increase of approximately 11.5% over this time last year. This group serves people with IBS of all ages and walks of life, spouses/partners/significant others, parents and other concerned individuals from more than 100 countries. 13 members of the admin team are adults with longtime IBS. One is the parent of a young adult with IBS. Several admins have relevant professional background in scientific research or health care, education, health or disability advocacy, dietetics or food service, and/or contacts with leading professionals and organizations in the IBS community. We are pleased to fill an ever-growing need for reputable IBS support.
The Canadian Digestive Health Foundation provides several recent articles and resources for those with IBS.
IBS Network location-specific support groups in a few areas of the United Kingdom have resumed online or in-person. Many had been temporarily suspended due to the COVID pandemic. The IBS Network provides training and support to volunteer group leaders.
Monash University in Australia, developers of the low-FODMAP diet that is effective for reducing symptoms for many people with IBS, continues to test specific foods and product brands in several countries, in some cases, leading to revision of its previous recommendations, including this past year. It also adds new countries as research and resources permit. Monash also has a low-FODMAP certification program, whereby food product manufacturers whose products have been tested by Monash as appropriate for the diet, may display an official certification symbol to alert consumers. The availability of certified products has expanded over time and currently includes major and specialty brands in at least 8 countries. It appears that some low FODMAP meal subscription services have been added in the past year as well. Monash continues online training courses, both for dietitians and for people with IBS using the diet.
Progress in awareness and advocacy:
Earlier this month, IFFGD returned to Washington, DC for the first time since the pandemic, with a delegation of staff, GI professionals and GI affected people to advocate for the needs of the GI disorder community. Details of the IFFGD 2023 Advocacy Event can be found at the link.
The IBS Network recently launched a Positive Steps campaign aimed at awareness of the connection between IBS and mental health. Several webinars have been conducted on related mental health topics. Individual recordings of past events are available at modest cost from the IBS Network, which is the UK national charity for IBS and is entirely supported by donations.
Over the past year or so, the American Neurogastroenterology and Motility Society, the Rome Foundation, and the Drossman Center, among others, have continued to conduct various social media events such as Twitter Chats and Facebook Live to engage and educate people with IBS and families.
By popular demand from readers affected by GI disorders after publication of their 2021 book, Gut Feelings: Disorders of Gut-Brain Interaction and the Patient-Doctor Relationship, A Guide for Patients and Doctors, Douglas A. Drossman M.D, President Emeritus and Chief Operating Officer of the Rome Foundation and Johannah Ruddy, M.Ed, Rome Foundation Executive Director and patient advocate who lives with IBS herself published, Gut Feelings: The Patient’s Story. Personal Accounts of the Illness Journey in July 2022. Along with the contributions of Dr. Drossman and Ms. Ruddy, this book features eight of Dr. Drossman’s own patients with disorders of gut-brain interaction such as IBS who agreed to share their experiences and insights and how, after appropriate care, they are living productively with their conditions. Dr. Drossman and Ms. Ruddy are currently working on a third book in the series from the perspectives of major thought leaders in the disorder of gut-brain interaction (DGBI) field.
IBS Impact continues to make incremental updates to this blog, social media, and its main website several times a year,amassing archives that thus far cover almost twelve years of quality, evidence-based material, resources and personal experiences of those who blog for us. Cumulatively, IBS Impact now reaches readers in over 170 different countries and territories on every continent of the globe.
These are just a handful of examples of progress for the IBS community in the past year. Cumulatively, there are many more. Obviously, we still have very far to go before all people with IBS have all the medical and social supports that we need for fully productive lives, with or without IBS, but we have come far as well. There are reasons for hope, especially if more of us do our part for self-advocacy and awareness in the years and IBS Awareness Months to come.
Please note that IBS Impact does not receive funding any linked source, nor was any link solicited. As always, any resources mentioned on our sites and social media are independently chosen and shared in the interest of scientifically accurate awareness, advocacy, and high quality, useful resources for the IBS community.
Guest Post for IBS Awareness Month: A Bit of Hope
IBS Impact welcomes a new guest blogger this week. Billy Robinson lives in the UK and has suffered with IBS since he was a teenager. Now in his 30s, Billy has received treatment for IBS in the UK, Europe & Australia. Billy has learned to embrace being stuck a home with IBS, by enjoying hobbies which can be done from home, such as playing the guitar and learning Spanish. When he is well, he enjoys playing football (soccer), music festivals and visiting friends. He wrote this article especially for IBS Impact. We thank him for his prompt, articulate and forthright willingness to share part of his IBS story with others in order to raise awareness and hope.
For over 15 years, I have suffered from IBS. I was diagnosed within weeks of symptoms, whilst I was still a teenager. At the time of diagnosis, I wasn’t offered treatment. After several appointments, I was told to adjust my fibre intake.
For the years that followed, my IBS symptoms continued to get worse and peaked at around year 5. I was now in my early years of adulthood, working full time, paying a mortgage, and commuting to work. I was suffering from severe symptoms every day. I had no support system. My friends didn’t understand, and my family were not supportive.
For many years, I felt utterly hopeless, and the symptoms had put me in a very dark place. I knew I would spend my life in pain with uncontrollable IBS symptoms.
Around 2015 I decided to go to Australia. I also suffer from psoriasis which is improved by the sunlight. My hope was that my psoriasis and IBS would improve from extended sunlight. My psoriasis improved a lot from the sunlight. My IBS did not.
I started working in Australia. After a chat with a colleague about IBS, the colleague suggested I visit a gastroenterologist. I had some savings so paid for an appointment with a gastroenterologist– My very first gastroenterology appointment, years after diagnosis.
The gastroenterologist suggested a low dosage medication called amitriptyline. I didn’t want to try medication, but the gastroenterologist was confident. The low dosage didn’t really work. The dosage was then increased. Within days, I noticed a real reduction of my IBS symptoms. Over the weeks, my symptoms were reduced more and more.
I don’t really have the words to describe how it felt to find a treatment that reduced my symptoms. I felt like I had survived a war or had been resuscitated from a cardiac event. I felt like I was a prisoner who had been granted parole. I had hope for the first time.
I still had symptoms whilst taking the medication, but less severe. I decided to dedicate my life to two things. Firstly, trying to enjoy life and secondly, finding more treatment.
As I write this, I now have several treatments. Amitriptyline is still my ‘main’ treatment, but I use several medications, therapies, diet changes and lifestyle changes which improve things further. I now have something of a life.
My overall IBS symptoms are now reduced by about 50%. Some days I’m ok, other days I am not ok. I still have challenges, flare-ups, and daily symptoms. The flare-ups which tend to last several weeks do still put me in a dark place.
I had the feeling of freedom from treatment, but I still have battle scars. Despite surviving, I’m still dealing with the issues that come with having a metaphorical ‘cardiac event’. I’ve been granted ‘parole,’ but I still visit a ‘parole officer,’ The analogies I give are to explain that although things are better, I still face physical and mental challenges, due to IBS.
I live in hope that one day, things will get better.
Some tips / suggestions
I’ve had IBS for most of my life in fact. I don’t try to give ‘advice’ as I think everyone’s situation is different, but I can make some suggestions / tips that have worked for me.
Many people with IBS find work difficult. For me, I have accepted that the most appropriate job is a low paid, low stress, data entry job, where I can start late and work from home. It’s not what I want to do, but it’s a job and I try to enjoy my hobbies in my free time.
I had to ask myself a question, what can I do and more importantly, what can’t I do. IBS sufferers may need to go through the same process to find the right job.
In terms of coping, I didn’t for a long time. Treatment has helped and has giving me hope. I now ‘cope’ with flare-ups and daily symptoms by being good to myself, getting rest and trying to enjoy my day. That may be playing sports, or it may be laying in bed watching TV (The latter more often than not). Don’t get me wrong, having IBS is horrible and nobody deserves it, but with some adjustment, there can be some happiness.
I’d like to add a point about mental health as well. Over the years, I have researched mental health (and by research, I mean hopelessly googling). I have found that general mental health advice isn’t compatible with IBS.
‘Go for a walk’, this only left me with worse IBS symptoms and a reminder of how much I’m suffering ‘Eat a healthy diet’, this is difficult when IBS symptoms are caused by so many foods. ‘Talk to someone’, I’ve tried, nobody understands. This mental health advice left me feeling more hopeless, sad and alone.
Treatment of IBS has helped my mental health, but talking therapy has helped as well. Talking therapy helped me learn that people in worse situations have been happy. People on their death bed, people with terminal illness, people with other gastrointestinal conditions such as crohn’s, colitis and celiac.
These people have all found ways to enjoy life to a degree and be happy at times, just by being happy. A combination of treatment for IBS, talking and knowing that being happy can be a choice has helped me. Sometimes my symptoms are too bad to be happy, but other times the symptoms are not so bad, and I am just, well, happy.
I can’t give much in terms of tips for friendships and relationships. I have been able to and change things for myself, but when others are involved, it’s challenging.
Nobody will understand IBS. I think back to when I didn’t have IBS and I never would have ‘got it’. All I can say is, if you have someone in your life who is happy to go out, or happy to stay home at a moment’s notice, that is a person worth keeping in your life.
If you’re reading this and you’re feeling hopeless, scared and not sure how to carry on, just know there is treatment available. Since I was diagnosed nearly 2 decades ago, treatment has gotten better. My medical appointments have been from professionals who are much more sympathetic. There is also research into further treatment, some of which I have been a part of.
It may take a few years, or longer, but there will be more treatment for IBS one day. So for now, just hang in there.
April is Irritable Bowel Syndrome (IBS) Awareness Month 2023
April is Irritable Bowel Syndrome Awareness Month. IBS affects, depending on the source, anywhere from 5-15% of the population in different countries on every continent of the world. In the U.S, this prevalence exceeds that of diabetes, chronic kidney disease, asthma, adults with chronic heart disease, and, by far, inflammatory bowel disease (IBD), with which IBS is often confused. IBS Impact stands in solidarity with what Olafur Palsson, PsyD, full professor and leading researcher at the University of North Carolina Center for Functional GI and Motility Disorders once estimated as half a billion people with IBS around the globe. As noted in the January 10, 2012 post on this blog, in 2011, a Rome Foundation working team estimated that 40% of us are mildly affected, 35% moderately affected and 25% severely affected, with the last two groups significantly larger than that same group of professionals had previously thought.
Unlike awareness weeks and months for these and other common health conditions, it is often difficult to know this unless one follows certain IBS sites, but as time goes on, awareness gradually increases. In 2012, this blog first published a version of this post as “10 Things We Can Do for IBS Awareness This Month and Every Month,” which remains one of the most popular single posts in the history of this blog. That post has been revised and updated as needed every year since. Here are 10 possible strategies for how people with IBS in any country can increase awareness of IBS. Readers of this blog who are relatives and friends, with the permission of the person with IBS, feel free to help the cause too.
1) If they do not already know, talk to your family, friends, coworkers, classmates and medical providers about IBS. Having IBS is often an isolating experience, and some people with IBS who have “come out of the closet” have found that the stress of hiding and worrying about who knew and how much they knew actually triggered worse symptoms. No, not everyone will “get it” and that can be hurtful or tiring, but people without IBS will never learn to understand unless we are willing to tell them. Some of them will help you and it may be the people you least expect. Given that IBS is the most common functional gastrointestinal disorder FGID, more recently known as disorder of gut-brain interaction or DGBI, 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 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. On social media, #IBSAwarenessMonth has become an established hashtag over the years among people with IBS, families, GI organizations and leading IBS researchers. The IBS Impact main website has just been updated in late March 2023 replacing old links and/or adding new material on all pages in time for IBS Awareness Month.
3) If you prefer traditional means of distributing information, the IFFGD in the U.S., has a downloadable media release and media kit updated for 2023. The Gastrointestinal Society in Canada has its own downloadable IBS Awareness infograph and resources. The IBS Network in the United Kingdom also offers a variety of IBS fact sheets to its paid members.
4) Volunteer to share your story on the IBS Impact sites by using the contact links on the main website. We welcome diverse perspectives from people with IBS and their families and friends, and will be welcoming a guest blogger later this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name and country of residence. IFFGD also accepts personal stories for its websites, anonymously or with names. IFFGD also occasionally quotes people with IBS in its publications.
5) Interact with the media. When there is coverage of IBS-related topics in mainstream print or broadcast stories or blogs, send or post your comments and corrections. This lets the media and other readers, viewers or listeners know we are out here as a community and that we care about how IBS is portrayed. IFFGD occasionally gets requests from the media to interview affected people. If you are interested, let IFFGD know that it can contact you. The IBS Network also sometimes publicizes requests from UK-specific media. Occasionally, IBS Impact does as well. For a past discussion of the media and IBS, see the November 6, 2011 post. Read about an advocacy success with a major U.S. media outlet in the January 20, 2014 blog post, and IBS Impact’s more recent response to widespread, grossly inaccurate reporting involving IBS on October 23, 2017.
6) Participate in a research study or register for a database of potential volunteers so that scientists become more aware of our needs. Some studies are online or through the mail or phone. We regularly list some open studies and databases on this blog, and on the main website, and/or share them on social media, and many of the resources we link do as well. Currently, as of April 2023, there are listed opportunities in the United States, the United Kingdom, Italy, and Australia. We always welcome additional studies from reputable organizations, academic medical centers or clinics and pharmaceutical companies for listing consideration and encourage them to contact us.
7) IBS Impact is not a charity, but consider donating to one of the GI-related organizations or research facilities in your country. Many are listed on our links and research pages of the main site. It is very important for all non-profits to show that they are supported by their own constituency (the people whom they represent) when they approach other funding sources. It is true that many IBSers don’t have a lot of money to spare, but even small amounts help. Several years ago, one person with IBS stated that if every person with IBS in just the U.S, the U.K. and Australia alone committed a dollar or pound a month, we’d have over a billion a year. If you’d like, have a fundraiser. IFFGD and other charitable organizations are generally glad to assist their supporters in these efforts. For more on why financial support to IBS entities is important, see this July 22, 2011 post and its August 25, 2014 followup.
8) If you absolutely cannot donate directly, use Microsoft Rewards (in the U.S.) or iGive (in the U.S. or Canada) or Everyclick (in the U.K.) as your search engines or online shopping portals on behalf of the gastrointestinal charity of your choice. These sites all work slightly differently, but participating merchants designate percentages of each transaction to specific organizations you indicate. It doesn’t look like much each time, but the amount adds up if you use them consistently. Nothing extra comes out of your own pocket, and the charities do get the money.
9) Write to legislators or policy makers to support issues of importance to the IBS community. IFFGD can help U.S. citizens with current U.S. legislation of concern to functional GI and motility disorders. If you prefer not to go through an organization, you can do so yourself. Often there are separate state issues as well, which, when possible, we attempt to publicize on this blog. The IBS Network occasionally posts U.K. specific advocacy on its website and social media.
10) If you’re ambitious, organize an in-person or virtual awareness event, especially those of you who are students or health professionals. Talk to a health professions class or study group. 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.
Clinical Trial: Writing Study for Teens with IBS, Carnegie Mellon University, February 2023
The following paid university-based online/phone research study for adolescents with IBS ages 12-17 has recently come to IBS Impact’s attention. We encourage qualifying youth with IBS to participate and for parents or guardians who may be reading this announcement to alert their children to consider this opportunity. Additional information from the original posting indicates that volunteers must have access to a computer, phone, and be available for a month’s commitment to the study activities. Please address any questions or concerns directly to the research team at the contact information below.
Teen IBS Study
IBS Impact welcomes researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies or surveys they wish to be considered for posting. A contact form is available on the main IBS Impact website.
IBS Impact makes these announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation. Additional studies can be found by clicking on the Research– Clinical Trials sub-category in the right sidebar of this blog on our main website IBS studies page. Please be sure to check the date at the top or bottom of a given post, as many posts from this blog remain visible in search engines for several years, and studies stop accepting volunteers or conclude the trials after a period of time. IBS Impact, as an entity, is not directly affiliated with any research sponsor or organization and receives no funding from any source for studies, surveys or links we feature on this blog, the main site or social media.
IBS Impact’s Top Countries and Top Posts of 2022
For the New Year, IBS Impact is once again participating in the common December-January blogger tradition of highlighting popular posts and interesting blog statistics from the year just past.
This blog reached readers in 59 countries and territories during 2022. The cumulative total is 168 for the eleven years WordPress has made country statistics available to individual blog owners. While, predictably for an English-language site, most of the top 10 countries/territories this year are ones where English is one of the official languages, total blog hits span every continent, underscoring that IBS is a global problem, not the common, inaccurate stereotype of it as a nuisance disorder caused by overindulgent North American diets and lifestyles. A list of the top 15 countries, which is actually 22 this year, because of several ties of multiple countries each– better reflects the diversity of countries of origin represented, which appears to change somewhat every year. It is hoped that the vast majority are legitimate visits, even from those who might not have been searching specifically for information about IBS, and not simply potential spammers. In order, the countries are:
1. United States
2. United Kingdom
3. Australia
4. Canada
5. Netherlands
6. Ireland
7. New Zealand
8. India
9. Spain
10. Singapore and Saudi Arabia and the Philippines (tie)
11.Italy
12. France and Belgium and Mexico (tie)
13. Romania
14. Sweden and Pakistan (tie)
15. Japan and Bangladesh and China (tie)
Below are the top 15 individual posts that received the most hits during 2022.
Most of the posts in 2022’s top 15 list were first published in 2011 through 2021. However, they continue to attract attention because most address topics that are of ongoing interest to people with IBS. Perhaps longtime readers can refresh their memories and newer readers will discover something interesting and useful.
There are also four posts from 2022 on this top 20 list that readers may have missed when they were first published in recent months. If so, take a look.
Please note that since this blog has been in continuous existence for 11 1/2 years, some links embedded in posts that are several years old, while valid at the time of publication, have inevitably become out of date and may lead to a dead link or completely different site. You may find the updated or a similar current resource on our main website. If not, feel free to leave a comment, and IBS Impact or other readers may be able to assist. In order, the posts are:
1.Designer Mychael Knight Could NOT Have Died from Irritable Bowel Syndrome (IBS), October 23, 2017
2. Education Laws and Resources for Students with Irritable Bowel Syndrome (IBS), August 27, 2013
3. The Americans with Disabilities Act (ADA) and Irritable Bowel Syndrome (IBS), July 30, 2012
4. Guest Post from a Teen for IBS Awareness Month: I Am No Longer A Lost Boy April 9, 2021
5. Guest Post for IBS Awareness Month: Making Sense of Unsupportive Family and Friends and Finding Supportive Others
6. Guest Post for IBS Awareness Month: My Perceptions and Tips on Being a Supportive Spouse April 22, 2022
7. Public Restroom Access and Irritable Bowel Syndrome (IBS), February 21, 2011
8. New Rome IV Diagnostic Criteria for Irritable Bowel Syndrome (IBS) Unveiled May 2016, June 9, 2016
9. Irritable Bowel Syndrome (IBS) and a Debate on “Can’t Wait” Cards, November 25, 2012 Please note that the blog originally linked in the above post as a basis for discussion no longer exists on WordPress.com. However, the ideas raised and the invitation by IBS Impact for readers and the IBS community to continue to discuss related concerns are still valid.
10. Guest Post From a Parent for IBS Awareness Month: An Emotional Journey, April 26, 2021
11. April is Irritable Bowel Syndrome (IBS) Awareness Month 2022 April 1, 2022
12. Restroom Access Act (Ally’s Law) Updates in Maryland and Maine, May 10, 2013
13. Resources for People with Irritable Bowel Syndrome (IBS) in Australia 2017, February 16, 2017
14. 14 Years and 15 IBS Awareness Months: Holding on to Hope 2021-2022 April 30, 2022
15. Massachusetts Enacts Restroom Access Act, August 20, 2012
This blog was begun in July 2011, a few months after the launch of the main IBS Impact website, and a bit over a year after the inception of IBS Impact itself. It is intended as a supplement to the many resources on our main site, one that can be updated relatively quickly with time-sensitive news, advocacy and clinical trial opportunities, as well as providing well-researched, scientifically reputable information on IBS and commentary on broader issues affecting the IBS community that may not be widely discussed on other sites. It is meant to be useful to a broad readership: people with IBS and related conditions, both those who may have lived with IBS for some time and those with recent onset or who are new to IBS sites online, family members and friends, health care and human service professionals who may interact with us, and the general public. We are pleased that it continues to fulfill this role.
IBS Impact wishes everyone a happy, healthy, prosperous and productive New Year and looks forward in 2023 to advances in awareness, advocacy, research, treatment and community support systems that benefit the worldwide IBS community.
Updates to IBS Impact.com Main Website, December 2022
IBS Impact has recently completed the latest round of updates to many pages of our main website, IBS Impact.com,
The home page linked above and the advocacy page, IBS page, research page, IBS studies page, resources page, family and friends page, IBS and children page, and links page, all have additions or updates of content or links, or deletions of outdated links as of this month.
Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or Twitter feeds (links found on the lower right sidebar of this blog and in the light blue and white footer sections below each page of the main site). Each has slightly different information on an ongoing basis. Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material and links. The current site reflects resources in six English-speaking countries which are among the top sources of hits to the site and this blog: the United States, Canada, the United Kingdom, Ireland, Australia and New Zealand. Several additional countries are occasionally represented on various pages.
This blog has been in existence since 2011.Because of the redesign and transfer of the site to new hosting twice in 2015 and 2016, some links embedded in older posts on this blog or search engine results relating to IBS Impact.com may result in error messages, but you should still reach the site itself. If so, please use the navigation links at the top of the site to reach the desired subpage. No information that is still currently useful has been removed from the site, although in some cases, the location has changed. Only outdated details and occasional defunct links for which there is no replacement available at this time have been deleted. The date of last update is indicated at the bottom of subpages that change periodically.
Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and worldwide public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.
IBS Impact as an entity, is not directly affiliated with any other organization, site, or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations, and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide.
Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable evidence-based organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered. A contact form can be found on the main site, or comments can be left on this blog. Thank you to all of our readers and social media followers for your interest and participation.
IBS IMPACT 