Guest Post From a Teen for IBS Awareness Month: I Am No Longer the Lost Boy

  IBS Impact is pleased to welcome a new guest poster this week for IBS Awareness Month. Brayden A., a 17-year old male, was diagnosed with IBS 3 years ago. He lives in the eastern United States with his parents, brother, and golden retriever, who all hate to see him suffer. He is working to manage his IBS so he is prepared for a full college experience and bright future. He wrote this essay especially for IBS Impact. We thank him for his time and his honest, brave, thoughtful and hopeful insights.

Being diagnosed with IBS should have been a defining moment in my life. It sure became a dictating factor in the days, weeks, and months to come. But, at the time, I had no idea what to make of it. I had never even heard of it. Every test I did came back negative, and I did a lot of tests. My family and I just wanted to know what was wrong. All we knew was I had been severely nauseous for months with some pain. The news of IBS did little to soothe our concern. Conditions like lactose intolerance and celiac disease had simple solutions, just cut out the food that causes the problem. Not to subtract from the inconvenience and unique problems those conditions cause, but at least they are understood. IBS, however, is not. No one knows why it happens. There is no definitive treatment because different cases respond differently. There is not even a test for it. I was given medicine that didn’t seem to work. I felt lost.

It took over three years of trial and error to get me where I am today. Even after all that time, I am not cured, nor do I expect to be any time soon. I have learned how to somewhat manage my symptoms, but it is still very much a question of when is the next time I will have a flare up, not if. However, instead of week after week of barely functioning, I’m usually just nauseous for a few hours, most of the time starting shortly before a bowel movement, sometimes during or right after. On occasion, I have flare ups that last days at a time, but these tend to be fewer and farther in between. But, like I previously mentioned, it took three years to get to this point. The road was by no means easy. It drained me both physically and mentally to lengths I had never experienced before.

IBS is not a life-threatening disease. Severe conditions, such as cancer, are. Huge sums of money and time have been devoted to searching for a cure and raising awareness for such conditions and rightfully so. They are worse than IBS could ever be. And although I’m told that there is research into IBS, it seems like its not enough or at least not widely shared with those of us that have it. For the foreseeable future, I, and everyone else who suffers from IBS, are left to make the best with the cards we’ve been dealt. Hopefully, this paper can help those who have IBS expedite their symptom management and learn from my experience.

The best advice I can give is to take it one day at a time. Don’t worry about how you’ll feel a week from now, just focus on today. If you feel good, even if it is just relatively speaking, then take advantage of it. Do things you enjoy doing. Live your life like it has some sense of normalcy. One of the most important things you could do is to blow off some steam and find a way to vent your frustration. For me, this usually entails hanging out with my friends when I feel well or listening to music way too loudly when I don’t. You have little control over whether a new drug or a diet change will help ease your symptoms. Having a positive attitude may not make you any less nauseous, the form my flare ups usually take, but at least you will be less miserable. And that is ultimately the goal. Managing IBS is not solely about symptom management. Any quality-of-life improvement is important. And for me at least, the mental toll IBS took was worse than the physical symptoms.

My symptoms first started in the winter of my eighth grade year. I was a year-round competitive swimmer, played soccer every fall, and was working toward my Eagle Scout rank with Boy Scouts of America. Then suddenly I was too sick to do any of it. My first pediatric GI put me on what she called the the “holy trinity” of IBS: periactin, dicyclomine, omeprazole. The side effects interfered as much as the IBS symptoms, but by that summer, I was largely symptom free, even for months after I was weaned off the medicine. I thought the whole thing was behind me. I went to my first of four planned Boy Scout High Adventure Bases, started a new high school, played soccer for my school team, and I scored points in the 500 meter free style event for my high school varsity swim team, beating several upper classmen. Then I felt nauseous again. I went to the doctor and was put on the same drugs that had seemingly cured me during my first bout, but they had no effect. Everything that worked the first time did not provide any relief. I had an endosocopy to see if the constant nausea was an upper GI issue, it wasn’t. Omeprazole was dropped, dicyclomine was increased, and symptoms only got worse. It was all too much to handle. The feeling of hopelessness that is so intertwined with suffering something over which you have no control, which you do not even understand, threatened to overwhelm me. During my first bout, I was optimistic. I was nauseous but I couldn’t be nauseous forever, right? Eventually I would get better, right? So even on my worst days, I could get through it because I knew that eventually those days would be a thing of the past. And then for a few months they were a thing of the past. I got to be a normal kid again. Until I didn’t.

Based solely on symptoms, my second bout was less severe than my first. But, my optimistic spirit was crushed. I was suspicious of every good day where my nausea was manageable because I refused to get my hopes up. Every bad day only reaffirmed my belief that this was the way my life would be from here on out. I do not know whether I could, or even would, call what I had depression; I am certainly not qualified to diagnose myself, but there were similarities. A common thought associated with depression is that life would never get better. I wholeheartedly believed that. It was hard to have a good quality of life with that mindset.

This mental slump also negatively influenced other aspects of my life too. Normally, I’m a pretty easy going kid. However, I found myself lashing out over the smallest things, particularly with my brother. Even when I felt good enough to do things, I did it with a fear that my symptoms would flare up because of my actions. I spent less time with friends because going out put stress on my body. However, since my mental health was not so great at the time, I convinced myself that I saw my friends less because they did not want to see me. I felt obligated to try to be as fun and as happy as possible around my friends. If I wasn’t, they would finally work up the nerve to say what I convinced myself was inevitable, that they only tolerated me because they were too nice not to.

Of course, none of this was true. My friends were my friends. It took a long time to finally open up about all this, but with the help of some of the best friends I could ever ask for, I sorted most of it out. Being able to talk to them about it helped me realize why I felt the way I did and helped them understand what was happening to me. With that out of the way, I didn’t feel as isolated. Knowing that my physical symptoms weren’t causing problems with my friends helped my mental health. At the same time, I started seeing a new pediatric GI who was more helpful at discussing ways to manage my symptoms. I had my medication adjusted, which was good because some of it was actually making me feel worse. She prescribed low dose amitriptyline which is commonly used for pain disorders and also seems to reduce the nausea, and she taught me ways to manage the side effects of that. She also helped me find a therapist that specializes in functional GI disorders who helped me better understand the brain-gut axis and how it impacts IBS. My parents helped me learn about foods that can worsen IBS, and we have found that too much wheat can be a problem for me. When symptoms wear me down, strong ginger tea and enteric coated peppermint oil capsules are sometimes helpful, and then I find a computer game or music and ride it out, knowing it it will ease soon. My parents and I are always looking for new proven treatments to try, and this week I started gut directed hypnotherapy with a recorded program I can do at home.

With these interventions, I have had more normal days, or rather normal given the pandemic. I worked as a lifeguard at my community pool last summer and made it to the limited swim practices that my team had this season. My school has moved back to full time classes but kept the remote learning so I am now able to tune into classes on my sick days, helping me to keep up. My school has been great, and sometimes I make it in for a class or two and then need to go home. I talk to any new teachers at the beginning of a semester, so they know that even though I may be present in class, it doesn’t mean I’m 100 percent and may not be keeping up. I just ask that they be patient with me and all they have asked of me so far is that I keep them up to date with what I need if I’m falling behind. I’ve learned how important it is to tell the people around you what’s happening and what you need. You have to be your own advocate, that’s one of the few things you can actually do to take some control.

When I was asked to write this essay, it took me a long time to decide what to write about. Obviously something IBS related, but that could be any number of things. Then I started thinking about what I would have wanted to see three years ago when I was first diagnosed. I kept being told that I would get better, but no matter how many times I heard this, it was never from someone who had lived with it. Even the doctors did little to relieve my worries because every other sentence they said was about how little they understood IBS, and how far away the miracle drug that cures everyone is. The more I started thinking about it, the more compelled I was to write. Because I’ve experienced the worst IBS has to offer, and I lived to tell the tale. I am living proof that it does get better. I suppose that is all I really have to offer besides the few tips and tricks I’ve thrown in, but perhaps if I had seen this paper before, I would not have felt so alone. I am no longer the lost boy I was three years ago, so maybe, just maybe, I can make the journey easier for others too.

April is Irritable Bowel Syndrome (IBS) Awareness Month 2021

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

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

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

2) If you find the IBS Impact website or blog or any other reputable IBS site useful and interesting, share it with your family and friends, other people with IBS and your health care providers, especially those not currently active in the IBS community.  Knowledge is power. The more people who have good information and resources rather than outdated misconceptions and quacks, the better off we will be as individuals and as a group. IBS Impact also posts to its Twitter and Facebook pages 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 2021, 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, IBS Impact has business cards with our logo available free for the asking. IFFGD, in the U.S.,has a free downloadale media tool kit and press release.  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  guest bloggers later this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name and country of residence. IFFGD also accepts personal stories for its websites, anonymously or with names. IFFGD also occasionally quotes people with IBS in its publications.

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 2021, 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 Goodshop and/or Amazon Smile (both in the U.S.)  or iGive  (in the U.S. or Canada) or Everyclick (in the U.K.) as your search engines or online shopping portals on behalf of the gastrointestinal charity of your choice. These sites all work slightly differently, but participating merchants designate percentages of each transaction to specific organizations you indicate. It doesn’t look like much each time, but the amount adds up if you use them consistently. Nothing extra comes out of your own pocket, and the charities do get the money.

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

10) If you’re ambitious, organize an awareness event, especially those of you who are students or health professionals. Although this April, much of the world is still social distancing and avoiding public gatherings amid the COVID-19 pandemic, virtual events are possible now or in the future. 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 20 (or 38!) Countries and Top 20 Posts of 2020

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 79 countries and territories during 2020. The cumulative total is 167 for the nine years WordPress has made country statistics available to individual blog owners. While, predictably for an English-language site, 8 of the top 10 countries 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 20 countries, which is actually 38 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. Australia

3. United Kingdom

4. Canada

5. India

6. Greece

7. Japan

8. New Zealand

9. Philippines

10. Ireland

11. Switzerland

12. Germany

13. Poland

14. Argentina and Spain (tie)

15. Romania and Belgium (tie)

16.  Fiji and Italy (tie)

17. Portugal, Pakistan, Saudi Arabia, Nigeria, Russia and Hong Kong (tie)

18. China, Malaysia, Netherlands, and Egypt. (tie)

19. Norway, Turkey, Sweden, South Africa, and Brazil (tie)

20. France, Algeria, Colombia and Suriname (tie)

Below are the top 20 individual posts that received the most hits during 2020.

Most of the posts in 2020’s top 20 list were first published in 2011 through 2019. 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 two posts from 2020 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 9 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.The Americans with Disabilities Act (ADA) and Irritable Bowel Syndrome (IBS), July 30, 2012

2. Designer Mychael Knight Could NOT Have Died from Irritable Bowel Syndrome (IBS), October 23, 2017

3. Education Laws and Resources for Students with Irritable Bowel Syndrome (IBS), August 27, 2013

4. Guest Post From Australia: A Personal and Professional Journey, April 13, 2019

5. 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.

6. Resources for People with Irritable Bowel Syndrome (IBS) in Australia 2017, February 16, 2017

7.Massachusetts Enacts Restroom Access Act,  August 20, 2012

8. Restroom Access Act (Ally’s Law) Updates in Maryland and Maine, May 10, 2013

9. Public Restroom Access and Irritable Bowel Syndrome (IBS),  February 21, 2011

10. More Things to Say and Not to Say to People with IBS, February 27, 2013

11. Functional Gastrointestinal Disorders/IBS Considered Presumptive Service-Connected Disabilities for U.S. Gulf War Veterans,August 12, 2011

12.New Rome IV Diagnostic Criteria for Irritable Bowel Syndrome (IBS) Unveiled May 2016, June 9, 2016

13. IBS and Extraintestinal (non-GI) Symptoms,  September 6, 2011

14. Irritable Bowel Syndrome (IBS) is Not a Diagnosis of Exclusion, October 9, 2011

15.April is Irritable Bowel Syndrome (IBS) Awareness Month 2020, April 1, 2020

16.  Online Study: Thought Impact Scale, University of North Carolina, May 2017 May 30, 2017

17.Guest Post for IBS Awareness Month: Living with IBS, April 7, 2020

18. Join Restroom Access Act (Ally’s Law) Advocacy in Virginia, New York, and Maine, December 23, 2012

19. Book Review: The Gut Solution for Parents with Children Who Have Recurrent Abdominal Pain and Irritable Bowel Syndrome, June 27, 2014

20. 15 Common Misconceptions That Shouldn’t Exist About Irritable Bowel Syndrome (IBS), November 8, 2013

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 2021 to advances in awareness, advocacy, research, treatment and community support systems that benefit the worldwide IBS community.

American College of Gastroenterology Publishes 2020 Guidelines for Management of Irritable Bowel Syndrome (IBS), December 2020

The American Journal of Gastroenterology has published the American College of Gastroenterology’s  newly updated guidelines for the management of irritable bowel syndrome (IBS) in its December 2020 issue.

Seven named authors from the fields of gastroenterology  and gastrointestinal health psychology, represent five United States universities or academic medical centers that are leaders in IBS research. These are the Mayo Clinic, Cedars Sinai, Northwestern University, the University of Michigan, the Icahn School of Medicine at Mount Sinai, and  the University of  North Carolina at Chapel Hill. The previous ACG guidelines were published in July 2018.

The abstract, downloadable PDF of the full article, and the link to the supplementary material can be accessed online here.

https://journals.lww.com/ajg/Abstract/9000/ACG_Clinical_Guideline__Management_of_Irritable.98972.aspx

IBS Impact hopes that the updated guidelines improve health care provider awareness of IBS, as well as effective treatment for Americans with IBS.

Online Study: Transition Experiences of Patients with Functional GI Disorders

The following research study is being conducted through a collaboration of Baylor College of Medicine, Texas Children’s Hospital, the University of Miami and the International Foundation for Gastrointestinal Disorders. Please address any questions directly to Dr. Shapiro at the email address below.

“The transition from pediatric to adult care can be challenging for a number of reasons. We are conducting a survey to better understand the experiences of patients with functional gastrointestinal disorders (e.g., irritable bowel syndrome (IBS)) who have transitioned from pediatric to adult care.

If you meet the following eligibility criteria, please consider participating in our anonymous survey.

1. Currently 18 years of age or older

2. Diagnosed with one of the following conditions in pediatric care:

      • Irritable bowel syndrome with diarrhea (IBS-D)
      • Irritable bowel syndrome with constipation (IBS-C)
      • Irritable bowel syndrome with mixed diarrhea/constipation (IBS-M)
      • Functional dyspepsia
      • Cyclical vomiting syndrome
      • Functional abdominal pain syndrome
      • Other

3. Transitioned to adult care for your gastroenterology care

 

If you have any questions, please e-mail Jordan Shapiro, MD (jmshapir@bcm.edu)

Thank you!

https://redcap.research.bcm.edu/redcap/surveys/?s=4H4DFDLF4K

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.

 

Updates to IBS Impact.com Main Website, October 2020

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

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

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

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

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

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

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

Reps. Butterfield of North Carolina and McGovern of Massachusetts Co-Sponsor Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 3396)

According to IFFGD and the official Congressional legislative database Congress.gov, earlier this month,Representative G.K. Butterfield (D-NC-1) and Representative James McGovern (D-MA-2)  officially became co-sponsors for HR 3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019. Each of them is co-sponsoring for the first time. IBS Impact thanks them for taking the time to learn about and support of the functional GI/IBS community.

Representative Butterfield has served in Congress since he won a special election to fill a vacancy in 2004, and has since been re-elected to seven full terms thus far. His district, the 1st Congressional District of North Carolina, encompasses all or part of 14 counties in the northeastern region of the state and stretches west to the city of Durham.  According to his official House website, Representative Butterfield is currently a member of the House Subcommittee on Health and serves on several caucuses and task forces for other health conditions and disabilities. In previous terms, he was also a member of the House Armed Services Committee.  As discussed previously on this blog, veterans and service members deployed in the Persian Gulf region have been shown to be disproportionately affected by functional gastrointestinal disorders, including IBS.

Representative McGovern is serving his twelfth term as a member of the House of Representatives. His district, the 2nd Congressional District of Massachusetts  covers central Massachusetts, including Worcester and Northhampton. According to his official House website, Representative McGovern also serves on several caucuses and task forces for various health conditions and disabilities, as well as one for veterans and the National Guard.

In officially supporting HR 3396, Representatives Butterfield and McGovern join Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, as well as co-sponsors, Representative Gwen Moore (D-WI-4), Representative Brian Fitzpatrick (R-PA-8), Representative David Price (D-NC-4), Representative Mark Pocan (D-WI-2), Representative Ed Perlmutter (D-CO-7), Representative Ron Kind (D-WI-3), Representative Joe Neguse (D-CO-2), Representative Katie Porter (D-CA-45), Representative Thomas Massie (R-KY-4), Representative Max Rose (D-NY-11), Representative Paul Gosar (D-AZ-4), Representative Dave Loebsack (D-IA-2), Representative Filemon Vela (D-TX-34), Representative Susie Lee, (D-NV-3), Representative Lisa Blunt Rochester, (D-DE-at large),Representative Tom O’Halleran (D-AZ-1),  Representative Bobby Rush (D-IL-1), Representative Jeff Van Drew (R-NJ-2), Representative Julia Brownley (D-CA-26), Representative Thomas Suozzi (D-NY-3) and Representative Eleanor Holmes Norton (D-DC-at large) IBS Impact appreciates the support of all these Members of Congress. If you are a constituent of any of these legislators, please take a few minutes to call, write, or contact him or her on social media to thank him or her for his support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of  HR 3396, please see the previous post from July 18, 2019 for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2018 elections, district boundaries that may have been re-drawn, or if you have moved.

Your personal experiences as a person with IBS and/or other functional GI/motility disorders, or as a concerned family member, friend or colleague, are most effective in communicating to legislators and their staff that there are real human beings behind the statistics. However, even general expressions of support are helpful.

HR 3396 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 3396.

NIH grants funding to researchers throughout the world, not just in the U.S., so in the long run, enactment of this Act may also benefit readers with IBS in other countries. Medical research also sometimes involves multinational teams of scientists, and in any case, study results are usually published globally, adding to the cumulative knowledge worldwide.

It is IBS Impact’s understanding that HR 3396 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 116th, the necessary number of sponsor/cosponsors must be reached by December 2020. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 3396 has not passed by that time, a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012, HR 842 in 2014, HR 2311 in 2016, and HR 1187 in 2018. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Online Research Survey on Psychological Health of People with IBS During the COVID-19 Emergency, University of Chieti, May 2020

Posted at the request of one of the researchers involved in the Department of Psychological Health and Territorial Sciences, University of Chieti, Pescara, Italy. This is an anonymous online survey on “factors affecting health outcomes in people with IBS during the COVID-19 emergency.” The research team is seeking adults aged 18-74 with a physician diagnosis of IBS and experiencing symptoms within the last two years. Estimated time commitment is 15 minutes. The survey is in Italian, but can be changed to English by using the drop down menu on the upper right.  Please address any questions or concerns directly to the researchers at the contact information given at the link.

Are you suffering from irritable bowel syndrome (IBS)?
The University of Chieti-Pescara (Italy) is conducting research on the psychological health of people with irritable bowel syndrome during the emergency from Covid-19.

Fill in the questionnaire on the psychological aspects during the pandemic. It is available in English version.

https://disputer.eu.qualtrics.com/j…/form/SV_3EnI0rBM6jNsNEx

 

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.

A Dozen Years and 13 IBS Awareness Months: Advances for the IBS Community 2019-2020

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

Seven 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, and April 30, 2019, I reported in a similar vein, on progress for the IBS community in each respective years, Now, continuing the tradition during my own twelfth year with IBS, as my thirteenth IBS Awareness Month draws to a close, 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 differences in pain among IBS subtypes,differences in Xifaxan response for IBS-D,  a possible enzyme deficiency that may account for some individuals in the subset who do not respond to the low FODMAP diet, a U.S. study on fecal microbiota transplant for IBS which was terminated early because it was found to be no better than placebo, as well as several studies confirming previous research correlating IBS to various known commonly overlapping conditions or showing the effectiveness of certain existing IBS medications for some patients. [Thank you to IFFGD staff for providing assistance in compiling many of the studies mentioned here.]

In addition, the Rome Foundation, a not-for-profit organization of thought leaders from many countries in the field of functional gastrointestinal disorders/disorders of gut-brain interaction and who developed the Rome international diagnostic criteria 30 years ago, last updated to Rome IV in May 2016, undertook a multi-year Global Epidemiology Study that has begun to bear fruit in the form of multiple major journal publications this year for this or narrower aspects of the overall work.  Epidemiology is the study of the incidence, distribution and factors controlling the development of certain medical conditions. In this research, scientists surveyed approximately 73,000 adults from a wide range of cultural and socioeconomic backgrounds in 33 countries on 6 continents of the world. This work has already given researchers new insights into how many people in various parts of the globe have IBS and/or related FGIDs/DGBIs and their circumstances, and will undoubtedly be a major milestone paving future directions for research.

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.  In the past few years, including 2019-2020, as some long-established senior committee, board and administrative members or editors at the Rome Foundation and other gastroenterology organizations, research centers or professional journals have retired or moved on to other professional endeavors, different researchers have taken on the roles, in some cases diversifying countries, areas of expertise, or perspectives represented in influential positions in the field. IBS Impact hopes that this factor also contributes to moving the field further forward in the years to come. See other posts in the Research category of the blog sidebar, the IBS studies page of our main website or our Facebook or Twitter feeds to see the range of research news and clinical trial opportunities publicized over the most recent several months.

Progress in the diagnosis and treatment of IBS:

In September 2019, the American Gastroenterological Association published Clinical Guidelines on the Laboratory Evaluation of Functional Diarrhea and Diarrhea -Predominant Irritable Bowel Syndrome in Adults.   Some tests are recommended by the AGA while the AGA also makes no recommendation or recommends against others and discusses the quality of evidence for each. The guidelines state that this is meant to reduce variations in medical practices of different health care providers, and that the document will expire in 5 years. At that time, presumably, the AGA will update the guidelines as needed depending on future evidence and medical practices.

During 2019-2020, the Rome Foundation has offered several symposia in different cities as part of continuing medical education opportunities for fellow health care professionals in both gastroenterology and primary care on diagnosis and treatment. The next one is scheduled for autumn of this year.  The Foundation also continues a program to mentor promising young functional GI researchers, an initiative started after Rome IV.

Several investigational medications and other non-pharmaceutical treatment options are always in various stages of the research pipeline in various parts of the world. As reported on this blog on June 17, 2019, the groundbreaking IB-Stim device had just then been approved by the U.S. FDA for use in treating IBS pain in adolescents. In September 2019, the FDA approved tenapanor (Ibsrela) for use by adults who have IBS with constipation (IBS-C)

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

As reported on this blog in June 2018,  about two years ago, the International Foundation for Gastrointestinal Disorders (IFFGD), in the U.S., formerly the International Foundation for Functional Gastrointestinal Disorders, began recruiting its first invitation-only, volunteer Patient Advisory Committee for people with GI disorders, including IBS and family members known to IFFGD as among the most active and interested advocates, and larger volunteer Patient Panel, open to any interested individual. In 2019-2020, this mechanism became more established, and IFFGD and members of these groups have continued to communicate, as individuals and groups, to share information and feedback on IFFGD materials, programs, and advocacy priorities and to address suggestions of members and the concerns of those affected by GI disorders in the wider community.  IBS Impact appreciates the effort to encourage more formal patient-organization collaboration.

Recently, IFFGD also began conducting 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.

Progress in societal supports for people with IBS:

The IBS Network in the United Kingdom continued its support to and/or development of, as of this writing, a total of 13 local self-help/support groups in various locations in England and Scotland for people with IBS as originally reported by this blog on October 23, 2016 and January 13, 2017. The current list can be accessed at this link. While social distancing necessitated by the COVID-19 pandemic does not allow these groups to currently meet in person, some are continuing to meet by Skype and similar technologies.

Among other recent activities, the IBS Network also reports that in March 2020, it was raising awareness with employers regarding accommodating employees with IBS in the workplace.

Monash University in Australia, developers of the low-FODMAP diet that is effective for reducing symptoms for many people with IBS, continues to test specific foods and product brands in several countries, in some cases, leading to revision of its previous recommendations.  It also adds new countries as research and resources permit. Monash also has a low-FODMAP certification program, whereby food product manufacturers whose products have been tested by Monash as appropriate for the diet, may display an official certification symbol to alert consumers. The availability of certified products and food-related services has expanded over time and currently includes major and specialty brands in Australia, New Zealand, the United Kingdom, Germany, Poland, the United States, Canada,and several multi-national brands. Aside from continuing online courses for dietitians, in the past year, Monash has launched an online course for those with IBS on using the diet. For a modest fee, which varies by each country’s currency and exchange rate at any given time, one can complete the course at one’s own pace within one year of purchase. This is a positive step forward in making the complex dietary approach more understandable to those who, for various reasons, may not wish to or may not be able to consult a low-FODMAP trained dietitian.

Michael Mahoney, clinical hypnotherapist in Cheshire, England, founder of Healthy Audio and the developer of the IBS Audio 100 program for adults, (and later the IBS Audio 60 for children with IBS)  the gut-directed hypnotherapy home course used by people with IBS internationally for over 20 years, recently contacted IBS Impact to share the news that he has significantly discounted the MP3 version of IBS Audio 100, for as long as sustainable, and has also recently developed a new streaming version for 2020. IBS Impact commends Mike’s long commitment to making his programs as financially and logistically accessible to as many people as possible, which is motivated by his genuine concern for quality of life for people with IBS.

[Please note that IBS Impact does not receive funding from Monash or Healthy Audio or any other 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.]

Progress in awareness and advocacy:

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 their people with IBS and families.

This year, IFFGD has been busy planning and organizing its new Nancy and Bill Norton Educational Series, named in honor of IFFGD’s  founders, who developed and headed the organization from 1991-2017 and continue to serve on its Board of Directors. IFFGD envisions this new series as half day events a few times a year, each in a different location and focused on a different chronic GI condition or topic of concern common to many conditions that IFFGD serves, including IBS. These will be focused directly on GI disorder-affected individuals in the hope of educating them, providing resources, and empowering them to manage their conditions. This is the first attempt in the IBS community in many years to provide ongoing in-person patient-centered events rather than very occasional ones. The first one will be on Diet, Nutrition and Digestive Health in cooperation with the University of Michigan, a leading functional GI treatment and research center in October 2020. This date was rescheduled from earlier this year due to the COVID-19 pandemic. Plans are to stream Norton Educational Series events online also, so that people with chronic GI conditions served by IFFGD can participate regardless of where they are in the world.

IFFGD has also announced this year’s dates for its annual national advocacy event, which is virtual this year,  to connect with federal legislators on several issues of concern to the GI disorder community. This will take place on July 26-27, 2020. Attendance is free but registration is required. One of the pieces of federal legislation affecting people with IBS is HR 3396, the Functional Gastrointestinal Disorders Research Enhancement Act, which so far this Congressional session, has 22 legislators, the lead sponsor and 21 co-sponsors from both political parties, 14 states and the District of Columbia.

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

These are just a handful of examples of progress for the IBS community in the past year. Cumulatively, there are many more. Obviously, we still have very far to go before all people with IBS have all the medical and social supports that we need for fully productive lives, with or without IBS,  but we have come far as well. There are reasons for hope, especially if more of us do our part for self-advocacy and awareness in the years and IBS Awareness Months to come.

Guest Post for IBS Awareness Month: Living With IBS

IBS Impact is pleased to welcome a guest post for IBS Awareness Month. Feivel Cohen has IBS and intellectual disabilities and lives and works in Maryland (USA). He wrote this article himself especially for IBS Impact. To respect his real voice as a self-advocate, we have intentionally not edited his own choice of words and punctuation if the intended meaning is clear. We thank him for his eagerness to share his story in order to help explain to family, friends, and others what many people with IBS experience.

 Living with IBS by Feivel Cohen

For many years I lived with out IBS and boy do I miss those years a lot. More then you will ever know.  It’s had a huge impact on my life and no, not a good one.

When you have IBS you never know when it’s going to strike you. All you can do is know what your stomach is capable of digesting and eating only those things. I take public transit absolutely everywhere. And sometimes when I’m walking to the bus I get that feeling in my stomach and I know if I don’t get home or to a bathroom In time I’m not gonna be a happy camper at all.

The thing about IBS is there are no cures for it at this time and that’s a major letdown because IBS cause major stomach pain imagine a normal stomach ache times 100 yeah sounds painful? That’s because it is. Sometimes my family has to deal with me letting out sounds of agonizing pain. And I hate that they’ve got to endure that.

Oh and the sad part is a lot of the time when people with IBS are trying to get to a bathroom in time they can’t they do their best believe me we do. But sometimes we can’t hold it in and it’s extremely embarrassing to be walking on the sidewalk after that.

Yes there are medications out there to help people with IBS but the sad thing is they don’t work for everyone and I’m one of those people. People with IBS pray that every day they wake up there will be a cure for it. Sadly that’s not the case at all.

Oh while I’m on this topic I have a quick story. Back when I was in High School senior year was the beginning of my tortuous journey with IBS and one day I was on the school bus sitting next to a kid. I had the window seat. And I got that feeling in my stomach I told you all about. I was freaking out I had no idea what to do sweat was dripping from my face my heart was beating who knows how fast and I told the bus driver. I need to go to the bathroom NOW and it CAN’T WAIT. She let me out at our local middle school I burst through the doors and found the bathroom. And I was so thankful I got there in time. But like I said we aren’t always so lucky.

One thing I’ve noticed people like to do is compare IBS to AIDS or cancer and they’ll tell me well just be thankful you don’t have cancer/AIDS. And I tell them those are all totally different diseases.

So I’ll I ask it that when you know someone with IBS try having a little sympathy for us. Because we’re going through a lot and a lot of underwear too lol. Thanks for reading.