Online Survey: IFFGD Long COVID 2021 for Those with Gastrointestinal Disorders, August 2021

The following survey on pandemic, COVID and vaccine experiences among adults with any chronic GI disorder, including IBS, is from the International Foundation for Gastrointestinal Disorders, a 30 year old science-based U.S. not for profit organization/charity focused on various gastrointestinal disorders, including IBS and other disorders of gut-brain interaction/functional gastrointestinal disorders. The survey is online, anonymous, and international. Please address any questions or concerns directly to IFFGD as the originator of the survey.

https://survey.alchemer.com/…/Long-COVID-2021-Survey

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 focus groups, 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.

Focus Group: IFFGD Invites Those with GI Disorders to Participate in Ongoing Focus Group for “Disparities and Inequalities in Health Care”, June 2021

The following focus group is a new opportunity being established by the International Foundation for Gastrointestinal Disorders (IFFGD), a 30 year old U.S. not for profit organization focused on various gastrointestinal disorders, including IBS and other disorders of brain-gut interaction/functional gastrointestinal disorders. Below is the text of the announcement exactly as received from IFFGD. IBS Impact encourages interested readers with IBS to consider joining.

        We would like to increase our knowledge of the disparities in healthcare for those living with GI disorders among persons of varied racial and ethnic backgrounds as well as other social determinants of health.   IFFGD hopes to gain a broader perspective on the topics patients feel are most important when receiving equitable healthcare and find ways to address the gap needs.    Our goal is to have a focus group meeting every other month starting in late June.    If you are interested in joining the Disparities and Inequalities in Healthcare focus group, please email us at iffgd@iffgd.org

Please address any questions directly to IFFGD.

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 focus groups, 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, May 2021

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

The advocacy page, IBS 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 light blue and white footers of every page all have additions or updates of content or links, or deletions of outdated links in late March, April and early May.

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.

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.

13 Years and 14 IBS Awareness Months: Moving the IBS Community Forward 2020-2021

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

Eight 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, and April 30, 2020, I reported in a similar vein, on progress for the IBS community in each respective year. Now, continuing the tradition during my own thirteenth year with IBS,  with my fourteenth IBS Awareness Month recently ended , 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 a national 14-year study of those with IBS, their biological siblings, and unrelated control groups in Sweden, showing definitively with scientific evidence that IBS does not cause increased risk of death, currently open studies on the effect of the COVID pandemic on psychological well-being of people with IBS (in Italian, but with an option in the drop-down menu for English) and the experiences of young people with IBS or other functional GI/disorders of gut-brain interaction in the transition from pediatric to adult care, the correlation of psychological comorbidites in symptom severity  and several different studies on existing treatments such as gut-directed hypnotherapy, cognitive behavioral therapy, the low FODMAP diet,  as well as ones still under investigation, such as fecal microbiota transplants and some medications.

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:

As first reported in June 2020, the American Gastroenterological Association conducted a literature review and does not recommend routine use of probiotics for IBS or other chronic GI disorders because of low evidence of effectiveness for a very small subset of people.

In December 2020, the American College of Gastroenterology updated its clinical guidelines for IBS.

In April 2021, the British Society of Gastroenterology updated its own clinical guidelines for IBS.

During 2020-2021 Rome Foundation has offered several online symposia as part of 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. The Rome V updates to the Rome international diagnostic criteria began development this past year 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.

In 2021, 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: Disorders of Gut-Brain Interaction and the Patient-Doctor Relationship, A Guide for Patients and Doctors. Publisher’s Weekly, a major publication in the U.S. publishing industry, has a review of Dr. Drossman and Ms. Ruddy’s work here.

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

As reported on this blog in June 2018, 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 2020-2021, also 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 direct collaboration and transparency between affected individuals and IFFGD. A few members of the Patient Advisory Committee also now serve in more formal roles on IFFGD’s Board of Directors.

IFFGD also 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.

Progress in societal supports for people with IBS:

In March 2021, as part of a session on online support groups for IFFGD’s 2021 Virtual Advocacy Event, I was honored to be invited to present on IBS Support (Official), a 77,000 member and constantly growing science-based Facebook support group for which I am one of 14 administrators/moderators from 6 countries. 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 minor child with IBS. Several admins have relevant professional background in scientific research or health care, education, health or disability advocacy, and/or contacts with leading professionals and organizations in the IBS community. We are pleased to fill a growing need for reputable IBS support and to be recognized by IFFGD as a credible and evidence-based source worthy of being highlighted.

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. This year,several foods common in India were tested and added to the database. 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, Austria, the United States, Canada,and several multi-national brands. Monash continues online training courses, both for dietitians and for people with IBS using the diet.

[Please note that IBS Impact does not receive funding from Monash or  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 people with IBS and families.

This year, for the organization’s 30th anniversary, IFFGD has launched a completely redesigned website and has been busy implementing its new Nancy and Bill Norton Educational Series, named in honor of IFFGD’s founders, who developed and headed the organization from 1991-2017. IFFGD envisions this 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.  Due to the COVID-19 pandemic, all events this year have been only online. However, from the discussion stage, it has always been the plan to stream Norton Educational Series events online in addition to any in-person future events, so that people with chronic GI conditions served by IFFGD can participate regardless of where they are in the world.

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 ten 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 160 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 From a Parent for IBS Awareness Month: An Emotional Journey

IBS Impact is pleased to welcome another guest poster for IBS Awareness Month. Kathryn lives in the United States with her husband and two sons. She has a bachelor’s of science degree in psychology which included research studies in child development and group therapy. In the years since her son’s IBS diagnosis, she has invested many hours learning about the disorder. When not preparing her sons to “leave the nest,” she volunteers on the IBS Support (official) Facebook page trying to advance IBS understanding. We thank her for her time and for her articulate, frank, and poignant personal story. 

Read Kathryn’s son’s guest post here.

 

Your child has been diagnosed with IBS, and you are probably poring through handouts, internet searches, and support groups trying to figure out what is happening to your baby. This article is meant to be a small time-out to recognize a parent’s experience. This is your child’s disorder, and it’s not about you for sure, but like many parents, you are probably the family nurse, cook, counselor, social director, and problem solver. This winding process is likely to be led by you, and you will be an integral part of the team supporting your child, navigating doctor’s visits, and finding interventions. You will learn a lot in the coming months and years about strategies, medicines, symptoms, triggers, but this article is simply here to say you are not alone, I’ve been there, and I have experienced some of what you are or will be feeling. For me, it’s been an emotional journey!

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My active, optimistic, adventurous son was diagnosed at 14, in the late winter of 8th grade (USA).  He approached me in the middle of swim team practice to tell me he was feeling nauseous and needed to go home. He also had abdominal pain and exhaustion. I was unconcerned and confident he would be fine by that weekend’s swim meet. A week later, I was concerned but admittedly more inconvenienced… about him missing classes, training, Boy Scout merit badge meetings; falling behind in homework; needing me to stop what I was doing to pick him up from school. A month later, I was terrified. How could this nausea, his primary and most debilitating symptom, still be this bad? I allowed my imagination to conjure the worst… either colon cancer or a brain tumor causing this unwavering nausea. I was so worried and scared that I couldn’t eat or sleep. I cried a lot, and of course tried my best to hide all of this from him because I didn’t want him to know how very bad I thought this might be. His pediatrician assured me that his tests were normal and that a brain tumor would present with different symptoms. He recommended some over the counter medications to alleviate symptoms. I felt reassured when talking with the doctor but fearful again when the medications relieved some symptoms, but the nausea remained. I felt desperate and made deals in my mind with God, “please let him be well in the morning and I promise I’ll …” I remember impatiently waiting for a return call from the doctor on a Friday to understand next steps. Near the end of the day, I finally called again but the doctor had left for the weekend and wasn’t expected back. All the emotions I had been trying to contain tumbled out in that phone call in a very angry tear-filled meltdown. What was wrong with my son and why was I the only one concerned that we couldn’t figure it out?!? The nurse must have realized I was completely untethered and tracked down the doctor. He called me that night, assured me he wanted to solve it, and recommended a pediatric gastroenterologist. The appointment was weeks away, but I was feeling validated and there was a glimmer of hope.

The pediatric GI was wonderful. She listened to both my son and me, asked lots of questions, and happily announced that based on symptoms and medical history, she was confident this was irritable bowel syndrome. She reassured that this meant no disease, no inflammation, no damage, no progressive deterioration. I was overjoyed and overcome with relief. We had a diagnosis and a treatment plan with medications that she commonly used to treat IBS. These medications had difficult side effects that continued to cause missed school and social events, but by late spring, my son was symptom-free, and we were joyous. Always the planner, I asked the GI, “What if it comes back?” She seemed taken aback by my lack of optimism and said there was no reason to think the worst. Victory was declared, the medications were weaned, and my outgoing son rejoined his active life, including starting a new high school.

Unfortunately, her answer left me unprepared when, almost exactly a year from that first day of symptoms, it came back. I felt gutted. The pediatric GI believed the solution was clear and, working with her nurse, we implemented the same regimen of medications. The side effects seemed worse this time and, combined with the nausea, discomfort, and disappointment he was experiencing, my son spent a lot of late winter and spring in bed, missing most of the school, athletic, and social activities that he previously loved. Of course I was heartbroken, but worse than that, I felt helpless and even guilty. I am a caregiver and problem solver, and I was stumped. What were we missing? Was I making him sicker with a food I was providing? I read everything I could find on the internet and unfortunately tried many “remedies” that probably exacerbated his nausea. In our few lighter moments, he would find me on my computer and ask if something new had been added to the internet for me to read, because surely I had read the whole thing by now.

With the start of spring break, we set the goal to solve this nightmare before classes resumed. There were more tests with more normal results, and I was frustrated and fearful again. I was angry with God for allowing this into his life and with the GI for not having new suggestions. How did I get the doctor to acknowledge that we needed a different game plan? Surely he wasn’t expected to live this way forever? I frequently called the GI nurse with updates that his condition was worsening and requests to adjust the plan, and she instructed me to stay the course or increase the dosages. At the end of the two-week spring break, he was in fact worse. Queue the 2nd emotional meltdown on a phone call with a nurse. But it got her attention! “You did everything you were told and it’s worse?” It finally dawned on her that even though this common combination of medications had helped him a year before, this time the side effects were actually increasing his symptoms. I was fuming that my previous attempts to explain had been rebuffed, and we had wasted precious time. With some quick changes to his treatment plan, he felt great for a couple days, and then the nausea and discomfort were back with no new answers from the GI nurse and no response from the GI. We felt defeated and lonely. Teachers, friends, coaches, family didn’t understand what was happening, and we didn’t know what to tell them.

With the help of his pediatrician, we found a new pediatric GI and eagerly awaited that appointment. My son did his best to push through his symptoms to attend his harder classes. I joined an IBS support group on Facebook and discovered some new ideas to try. Thankfully, this was an evidence-based page, and I began to trust the recommendations. Yes, I had discovered new material to read, including reliable information about what IBS is and isn’t. I learned about the FODMAP diet and other food triggers, and I adapted my meal planning. That summer, he had some good days and some bad days. The good days were always clouded by the dread that the bad days would return. The unpredictability weighed heavily on us both. Swim meets and vacation travel plans were frequently disrupted, often the day before or even half way through. The helplessness was overwhelming. I still wanted to fix this so badly and was struggling to accept that I had no control. The new pediatric GI confirmed his IBS diagnosis and committed to team with us to find ways to alleviate symptoms. Her practice included an online patient portal which allowed easier and more efficient communication so we could make quick adaptations to treatment plans. She offered new recommendations, including cognitive behavioral therapy with someone that specialized in functional GI disorders. As I read through the material on CBT, I felt defiant. I didn’t want to learn to live with IBS or to learn to “manage” symptoms, I wanted this gone. Anything short of a full recovery felt like giving up. This wasn’t fair for him and it wasn’t fair for me. This is not how I wanted him to live, and my own mental and physical health was being impacted by my own stress of not being able to help him and by my worry about his future. My determination to solve this had been revitalized. I laid out the recommendations the doctor had provided, and my son selected the ones he felt ready to try. He committed to being more diligent about diet changes and agreed to try CBT. He identified that wheat seems to worsen symptoms, and he learned about the impact stress has on the nervous system. He discovered that he has a relatively healthy psychological outlook to managing normal life stress, but that his body simply has a low tolerance for its physical impact. He learned some tools to help calm his nervous system, and I stole a few to help with my own, like diaphragmatic breathing!

While he was learning tips to manage symptoms, I finally began my own effort to care for myself. I had to acknowledge and accept that other than helping my son learn about his disorder, there is nothing I can do to change or control it. On a broader spectrum, that is true not just for IBS but for life in general. I was a hands-on mom and needed to let go of many parts of my children’s lives. My son’s IBS forced me to face that we did indeed need to learn to live with this, I needed to empower him to self-manage, and I recognized my role as emotional support but not fixer of all things.  For me, turning to my religious faith helped me to recalibrate my priorities and “place” in the world, to accept there are things out of my control, to be optimistic and grateful on good days, and to be flexible and hopeful on bad days. No one is guaranteed a certain life, and illnesses aren’t dealt out based on good or bad behavior. The goal is to live a good life, but no one gets to choose what that life will look like. When faced with an illness or other unexpected turn of events, all we can do is educate ourselves, make appropriate adaptations, and continue to explore moments that bring joy. This refreshed outlook has helped me not only accept IBS coming into our lives, but other new, unwanted challenges as well. Now instead of managing details of my two sons’ lives, I’m trying to pass along this message of resilience.

Today, my son is much better, physically and emotionally. Rather than months of constant nausea, it’s measured in hours or days. He makes the best of his good days, optimizing his time with school, work, and friends. On his bad days, he stays confident that it will pass and eases symptoms with some reliable remedies. He recently took his SAT (college entrance exam), and we worked together to avoid his food triggers and set aside a calm schedule for several days leading up to it. He completed the test with no problems, but then felt ill the next day, as expected. It’s not always that controllable or predictable, but by better understanding what works for him, he has been able to make it a much smaller part of his life. I continue to follow research in hopes of helping him find new management tools, and I try to raise IBS awareness. I now volunteer as a moderator on that Facebook support group that I stumbled upon two years ago. Sharing what I have learned is a constructive activity that helps to combat my feeling of helplessness, allowing me to feel like I’m making a difference.

____________________________________

Sharing my experience with a focus on emotions wasn’t meant to be self-indulgent. My story is a sidebar article to the feature story that belongs to my son, but it’s the part I know. By highlighting each emotion, I hope you could connect with at least one or two and feel understood. I also hope it sheds light on another layer of this disorder’s impact, one that’s easily overlooked in the scramble toward diagnosis and successful intervention. The impact of IBS is as broad and complicated as its symptoms and treatments, for both the individuals diagnosed and the people who love them. 

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.

Read Brayden’s mother’s guest post here.

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.