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Do you experience undiagnosed gut issues? Are you engaging with alternative forms of information or treatment, including online forums, independent research or consulting a naturopath? Doctors can find it challenging to treat undiagnosed gut issues. As a result, people may take a more active role in managing their own condition. Researchers from University of Melbourne are interviewing people living with complex, difficult to diagnose gut issues about the creative and experimental ways they manage their symptoms. Please read our website to learn more https://stomachacheproject.com/get-involved/ .

October 23, 2020 Utilization of Dietitians in the Management of Irritable Bowel Syndrome by Members of the American College of Gastroenterology Kate Scarlata, MPH, RD, William D. Chey, MD, FACG, Shanti Eswaran, MD; This survey of the ACG membership identified a number of gaps in the care of IBS patients. A significant minority of GI providers do not have adequate training, education materials, or time to optimally administer the LFD in IBS patients.Though GI providers strongly feel that a GI dietitian can improve IBS outcomes, increase patient satisfaction, and save time, more than 40% don’t have access to a local GI dietitian. Efforts to provide high quality nutrition training for gastroenterologists and dietitians are needed. High quality education materials on the LFD for IBS patients appear to be another unmet need. https://www.eventscribe.com/2020/ACG/fsPopup.asp?Mode=posterinfo&PosterID=298900

Worldwide Prevalence and Burden of Functional Gastrointestinal Disorders, Results of Rome Foundation Global Study Ami D. Sperber, MD, Shrikant I. Bangdiwala, PhD, Douglas A. Drossman, MD, Uday C. Ghoshal, MD, Magnus Simren, MD, Jan Tack, MD, William E. Whitehead, PhD, Dan L. Dumitrascu, MD, Xuicai Fang, MD, Shin Fukudo, MD, John Kellow, MBBS, Edith Okeke, BMBCH, Eamonn MM. Quigley, MD, Max Schmulson, MD, Peter Whorwell, MD, Timothy Archampong, MBChB, Payman Adibi, MD, Viola Andresen, MD, Marc A. Benninga, MD, Bruno Bonaz, MD, Serhat Bor, MD, Luis Bustos Fernandez, MD, Suck Chei Choi, MD, Enrico S. Corazziari, MD, Carlos Francisconi, MD, Albis Hani, MD, Leonid Lazebnik, MD, Yeong Yeh Lee, MD, Agata Mulak, MD, M. Masudur Rahman, MD, Javier Santos, MD, Mashiko Setshedi, MBChB, Ari Fahrial Syam, MD, Stephen Vanner, MD, Reuben K. Wong, MD, Aurelio Lopez-Colombo, MD, Valeria Costa, MD, Ram Dickman, MD, Motoyori Kanazawa, MD, Ammar Hassanzadeh Keshteli, MD, Rutaba Khatun, MSc, Iradj Maleki, MD, Pierre Poitras, MD, Nitesh Pratap, MBBS, Oksana Stefanyuk, MD, Sandie Thomson, MBChB, Judith Zeevenhooven, BSc, Olafur S. Palsson, PsyD Abstract Background & Aims Although functional gastrointestinal disorders (FGIDs), now called disorders of gut–brain interaction, have major economic effects on healthcare systems and adversely affect quality of life, little is known about their global prevalence and distribution. We investigated the prevalence of and factors associated with 22 FGIDs, in 33 countries on 6 continents. Methods Data were collected via the internet in 24 countries, personal interviews in 7 countries, and both in 2 countries, using the Rome IV diagnostic questionnaire, Rome III irritable bowel syndrome questions, and 80 items to identify variables associated with FGIDs. Data collection methods differed for internet and household groups, so data analyses were conducted and reported separately. Results Among the 73,076 adult respondents (49.5% women), diagnostic criteria were met for at least 1 FGID by 40.7% persons who completed the internet surveys (95% CI, 40.2–41.1) and 20.9% of persons who completed the household surveys. FGIDs were more prevalent among women than men, based on responses to the internet survey (odds ratio, 1.7; 95% CI, 1.6–1.7) and household survey (odds ratio, 1.4; 95% CI, 1.3–1.5). FGIDs were associated with lower quality of life and more frequent doctor visits. Proportions of subjects with irritable bowel syndrome were lower when the Rome IV criteria were used, compared with the Rome III criteria, in the internet survey (4.1% vs 10.1%) and household survey (1.5% vs 3.5%). Conclusions In a large-scale multi-national study, we found that more than 40% of persons worldwide have FGIDs, which affect quality of life and healthcare use. Although the absolute prevalence was higher among internet respondents, similar trends and relative distributions were found in people who completed internet vs personal interviews. Full text article: https://www.gastrojournal.org/article/S0016-5085(20)30487-X/fulltext DOI: https://doi.org/10.1053/j.gastro.2020.04.014

Today, I was informed that I was chosen by Digestive Disease Week, the annual scientific and medical research conference with 20,000 attendees, to receive the honor of the inaugural DDW 2019 Patient Influencer Travel Award. I'm thrilled to represent IBS Patients and share the important medical and scientific work presented by the attendees. This year the conference will be in San Diego from May 18-22.

Hi everyone! I'm Lin. I am a researcher in chronic abdominal pain, based in London. My research team is working on a project on chronic abdominal pain in collaboration with King's College London and Guy's and St Thomas NHS Trust in London. We understand that abdominal pain is complex, and can have significant physical, emotional, and social impact on your life. We are investigating the utility of a form of cognitive and behavioural therapy (CBT) for improving the wellbeing and quality of life for people with chronic abdominal pain. As part of the project, we would like to survey some abdominal pain sufferers to inform the development of such a treatment. If you have chronic abdominal pain and willing to support our research, please clink on the weblink below to participate in the survey. We truly appreciate your kind help. https://kcliop.eu.qualtrics.com/jfe/form/SV_9RyIRIWgggFzeVT

Hi everyone! I'm Lin. I am a researcher in chronic abdominal pain, based in London. My research team is working on a project on chronic abdominal pain in collaboration with King's College London and Guy's and St Thomas NHS Trust in London. We understand that abdominal pain is complex, and can have significant physical, emotional, and social impact on your life. We are investigating the utility of a form of cognitive and behavioural therapy (CBT) for improving the wellbeing and quality of life for people with chronic abdominal pain. As part of the project, we would like to survey some abdominal pain sufferers to inform the development of such a treatment. If you have chronic abdominal pain and willing to support our research, please clink on the weblink below to participate in the survey. We truly appreciate your kind help. You participation will be completely anonymous. https://kcliop.eu.qualtrics.com/jfe/form/SV_9RyIRIWgggFzeVT

Xpert Perspectives on IBS from DDW 2018 in Washington, DC Medically orientated talk from Dr Mark Pimentel and Dr. William Chey about several research abstracts. Goal Statement:The primary goal of the educational activities is to encourage the application of the latest advances in evidence-based medicine to achieve improved outcomes for the patients affected by IBS. Educational Objectives: Upon completion of this activity, participants should be better able to: Apply evidence-based diagnostic criteria to evaluate patients presenting with symptoms of suggestive of IBS/CIC Discuss the latest data regarding treatment of patients with IBS-D Summarize recent evidence regarding treatment of patients with IBS-C/CIC http://www.gihealthfoundation.org/webcasts/IBS/2018/Xpert_Perspectives_DDW/ This material is protected by copyright and other intellectual property laws. It may not be otherwise copied, printed, transmitted, or published unless explicit permission is obtained. To request permission please contact info@GiHealthFoundation.org

The Mind-Gut Connection: What Is It and How Did It Evolve? Also, IBS and the Developing Microbiome. 3 part audio interview and transcript with Emeran Mayer, MD, PhD, a pioneer of medical research into brain-gut interactions and a leading IBS researcher at UCLA. Part 1: http://www.psychiatrictimes.com/neuropsychiatry/mind-gut-connection-what-it-and-how-did-it-evolve Part 2: http://www.psychiatrictimes.com/neuropsychiatry/ibs-and-developing-microbiome Part 3: http://www.psychiatrictimes.com/neuropsychiatry/there-relationship-between-mood-and-diet

Research study: A Pilot Study to Evaluate Fecal Microbiota Transplantation in Irritable Bowel Syndrome Location: Boston, Massachusetts Inclusion Criteria: IBS with diarrhea The study is to evaluate whether we can change the microbiome of individuals with IBS using a healthy donor. We then would like to see whether if we are able to change the microbiome, if there's a resulting improvement in symptoms. We randomize people to receive either a fecal transplant or a placebo fecal transplant. People are also receiving an antibiotic either rifaximin, a combination of Cipro/flagyl or no antibiotic as a pre-treatment. The capsule form of fecal matter transplant (FMT) is being used. Contact: Vivian Cheng 617.667.0682 vcheng2@bidmc.harvard.edu Principal Investigator: Anthony Lembo, MD, Beth Israel Deaconess Medical Center More clinical trials listed here: https://www.ibspatient.org/clinical-trials

IBS Research Study: Free Self-Help Book, Participants Needed A research study with Dr. Melissa Hunt comparing the effectiveness of two different IBS self-help books. One is a low FODMAP diet book and the other is a cognitive behavioral therapy book. Both have been proven effective. We would send you one of them for free to your home and all you need to do is read and fill out some questionnaires over the course of the study. More information here >> https://www.ibspatient.org/node/165

Stephen Collins: Faecal microbiota from IBS-D patients produces intestinal functional and behaviour changes in germ-free mice Fructans worsen abdominal pain, bloating, gas in children with IBS. A subset are fructan sensitive which requires a personalize nutrition plan for those children. Gas production along does not distinguish those who are fructan sensitive vs. insensitive. Baseline clinical factors do not distinguish those who are fructan sensitive vs. insensitive. Jeffrey Lackner: IBS Patient satisfaction is important because it correlates with treatment adherence and outcome. Many variables are involved in patient satisfaction of FGIDs are considered including sociodemographic, psychological, and health coverage status. Neither the severity of IBS symptoms nor quality of life impairment due to IBS symptoms predicted patient satisfaction. Fogel: Trulance (plecanatide) had sustained efficacy in phase 3 studies in IBS-C and met endpoints for the studies; diarrhea the main side-effect at 4% with 1.3% discontinuing treatment. Trulance is currently marketed for chronic constipation (CC). Calcaterra- GABA-A neurotransmitter (benzodiazepines) and IBS-D is a new novel treatment substance. HBP-02 is a selective potent and peripherally restricted GABA PAM. HBP-02 decreases whole gut transit, distal colon transit and reduces sensitivity to visceral pain. HBP-02 is not optimal. New compound is needed. HBP-03 is a candidate as it has similar results as HBP-02. Suggestion that a peripherally restricted GABA-A receptor modulation is a viable strategy for the treatment of IBS-D. Canadian Society of Intestinal Research: Irritable Bowel Syndrome Patient Experience in Canada. 79% have symptoms not under control. The real world experience of IBS patients is still poorly understood. In IBS, gut mucosal barrier dysfunction is linked to mucosal inflammation. The enteric nervous system regulates bowel movements through the gastrocolic reflex, and this reflex can promote diarrhea or constipation when intestinal homeostasis is disturbed. This provides a biologically plausible basis to test the efficacy of anti-inflammatory compounds targeted to the intestines in patients with IBS. Compounds with anti-inflammatory activity, such as the l-menthol component of peppermint oil, may help restore homeostasis, resulting in IBS symptom improvement, including both constipation and diarrhea. IBSgard consists of ultra-purified, solid-state PO microspheres that are triple-coated to facilitate delivery to the small intestine. IBSgard demonstrated reduction versus placebo in both constipation and diarrhea in IBS-Mixed, as well as numerous other core IBS symptoms. Rifaximin is a nonsystemic antibiotic approved for the treatment of adults with diarrhea-predominant irritable bowel syndrome (IBS-D). Retreatment with rifaximin was significantly more likely than placebo to provide sustained response in adults with IBS-D who initially responded to rifaximin and had experienced symptom relapse. Only duration since IBS symptom onset was identified as a baseline predictor of sustained response. YouTube is one of the top 5 most accessed online resources for medical information. YouTube videos on IBS were found to be mostly produced by alternative treatment sources with often controversial treatments that did not align with current evidence based guidelines. Furthermore, videos from healthcare professionals provided better and more accurate quality of information compared to other sources. IBS patients report poorer Food quality of life than IBD. Differences may be partially explained by IBS patients using more dietary treatments, whereas IBD is treated by medication. Lactose containing foods only need to be limited by those with lactose intolerance when following a Low FODMAP diet.

Muirel Larauche presents on sex-dependent alterations of colonic epithelial permeability in IBS patients VIDEO - Jenna Leser: Contribution of gastrointestinal microbiota in the enteric nervous system of the small intestine in IBS patients. Microbiota contributes to the pathogenesis of IBS. (click image to watch video) Kevin Whelan: low FODMAP diet is superior to placebo. Low FODMAP diet likely works in different ways to probiotics. Low FODMAP diet reduces intestinal water and fuel for microbiota, therefor reduces gas. Fecal volatile organic compounds profiling is a low cost, non-invasive tool that may help predict response to dietary intervention, such as Low FODMAP Diet, in IBS patients as well as shedding light on mechanisms underpinning response. Clinical trials using this algorithm are needed, and if successful, will pave the way for personalised treatment plans in IBS. Post Infectious IBS (PI-IBS) developed in a quarter of survey responders with culture positive Campylobacter enteritis. Fever during enteritis was inversely associated; however, younger age, female gender, vomiting, hospitalization and diarrhea lasting ≥ 7 days were positively associated with PI-IBS. The role of prompt treatment with antibiotics in protecting against PI-IBS should be evaluated. Compared to healthy controls, patients with IBS report increased sleep disturbances. Reported poor sleep is associated with more severe IBS and extraintestinal symptoms and impaired disease-specific health related quality of life. Future studies evaluating the mechanisms by which poor sleep increases viscerosomatic sensory perception and alterations in mood are needed. In patients with IBS, interventions targeted at sleep improvement may potentially lead to improved symptoms and enhanced quality of life. A study found evidence for an increased risk of some disorders of immune dysregulation including Inflammatory Bowel Disease (IBD), rheumatoid arthritis and celiac disease, and the FGIDs IBS and Functional Diarrhea, in the general population. Further research is needed to determine whether these conditions share a similar underlying pathophysiology or may be due to other factors such as side effects of medication. Mebeverine is a musculotropic antispasmodic drug as a new candidate for treating irritable bowel syndrome (IBS). Reviewing the literature found a few trials on its drug efficacy emphasizing the need for systematically reviewing the evidences on its clinical efficacy and complications. Hence, the present study systematically reviewed all the available data to examine the dose level efficacy and tolerability of mebeverine in IBS by a meta-analysis technique. Mebeverine shows its high efficacy and tolerability with minor complications to clinically improve disease symptoms. Mebeverine is marketed under the name Colofac in some countries. A subset of IBS patients has impaired bowel wall barrier function. This subset has a substantially high fecal proteolytic activity which caused increased in vitro paracellular permeability. Inhibition of proteolytic activity reversed the increased paracellular permeability. Luminal proteases likely play an important role in modulation of intestinal permeability and further in vitro and in vivo studies are warranted to examine the mechanisms involved.

Dr. William Chey reported that different FODMAP's exert different effects in different parts of the gastrointestinal tract. He went on to say that the low FODMAP diet should not be viewed as a healthy diet for people without IBS symptoms. Dr. Chey stresses the importance that the low FODMAP diet is a 3 phase not a 1 phase diet. 1 phase implies that it is an elimination diet, which it is not. The 3 stages are Elimination -> Reintroduction -> Maintenance. 63-80% of IBS patients have TRP channel sensitization. TRP channels, in simple terms, modulate ion entry driving forces and Ca2+ and Mg2+ transport machinery in the plasma membrane of cells. The comment was made that this was objective proof that IBS is NOT in patient's minds An IBD work study accommodations by Chhibba looked at accommodating by access to restrooms, time for doctor's appointments, reduced works hours and the ability to take a break. IBS patients are looking for similar accommodations We informed physicians that when someone tells you that they are suffering from fatigue, take it serious. It's more than just being sleepy or having a lack of sleep. (Chey) Data from "My GI Health" study of 72,000 individuals reports 25% of US has pain and abnormal bowel habits Almario reported prevalence of IBS subgroups, 39% IBS-D, 38% IBS-C, 24% IBS-mixed VIDEO - Dr. Lin Chang presents on trauma severity and lack of confiding in others increases the risk of having IBS. (click image to watch video) VIDEO - Dr. Ray Addante presents on predictors of health related Quality of Life (QOL) in IBS patients as compared to healthy individuals (click image to watch video) VIDEO - Dr. Shanti Eswaran presents on the low FODMAP diet in IBS-D patients with and without baseline anxiety. (click image to watch video) VIDEO - Dr. Eric Shah presents patients with IBS-C report more severe, bothersome, frequent and diffuse abdominal pain versus IBS-D patients. (click image to watch video) VIDEO - Morgan Florens presents about food antigen-specific antibodies and mast cell activation (allergic reaction) in post-infectious visceral hypersensitivity. (click image to watch video)

The ROME IV diagnostic criteria, developed by the ROME Foundation - an independent organization that provides support for activities designed to create scientific data and educational information to assist in the diagnosis and treatment of IBS, amongst others, was introduced over the last year. It supersedes ROME III as a criteria that doctors use to diagnose IBS. ROME IV so dramatically differs from ROME III that the number of individuals with IBS has gone down because of the new criteria. This has been changed in the symptom frequency, eliminated “discomfort” term and modified the term “improvement” to “related to defecation” which includes patients with pain worsening with defecation.. This has raised some controversy with the ROME IV definition of IBS. - About 40% of IBS patients diagnosed by ROME III criteria were excluded by ROME IV criteria because of unmet frequency definition, absence of abdominal pain or pain unrelated to defecation, although other clinical profiles and their quality of life were similar. This study suggests abdominal discomfort improved with defecation, a symptom which has been eliminated from ROME IV diagnostic criteria for IBS, is common in our patients and affects on the quality of life as same as the patients who met the ROME IV criteria. This substantial amount of patients might loss the opportunities to enroll in upcoming IBS clinical trials and to receive appropriate management from the IBS clinical practice guidelines. Ebastine is a new novel treatment that is being investigated for IBS. It was found to reduce visceral hypersensitivity symptoms (abdominal pain leading to a bowel movement) and abdominal pain in patients with IBS. It is entering Phase 3 studies. Histamine has an impact on the pain receptor TRPV1. In IBS patients, histamine released in the gut makes TRPV1 hypersensitive. The researchers found that histamine interferes with the histamine 1 receptor, which is located on nerves that contain TRPV1. Importantly, they discovered that blocking the histamine 1 receptor prevents the sensitising effect of histamine on TRPV1. Taken together, these findings may identify one mechanism behind IBS patients’ increased pain perception. Synergy Pharmaceuticals, which recently brought Trulance to the market for Chronic Constipation, has created The Poop Troop keyboard emoji's for mobile devices. More info at http://www.confrontconstipation.com Dr. Robin Spiiler described MRI of the intestines in IBS and chronic constipation with a focus on imaging during symptoms ie: after feeding - MRI showed less water in the small bowel and more water in the colon - water was accelerated into the ascending colon for IBS-D - strong evidence that MRI can assist in diagnosis of gastrointestinal abnormalities related to transit time (time stool takes to pass through the colon) for IBS-D, IBS-C and chronic constipation Dr. Emeran Mayer (UCLA) has focused on brain imaging related to IBS. He uses the term "Brain and Gut Connectome" to describe the pathways from the gastrointestinal system to/from the brain. Ellingson (2014) illustrated that white matter differences in basal ganglia existed between IBS and healthy controls. Mayer further illustrated that there is significantly greater functional connectivity of somatosensory hub, and auditory and visual regions in the brain for IBS patients. When trying to determine why some people with IBS symptoms seek medical help vs. others that do not, one factor is that older age people who have more symptoms prompt them to seek care, http://www.healio.com/gastroenterology/irritable-bowel-syndrome/news/online/{7601c1cd-6f8e-41b5-9aaf-666bf33dcb62}/older-age-more-symptoms-prompt-people-with-ibs-to-seek-care The nature of the spectrum of functional gastrointestinal diseases (FGIDs), of which IBS is one, allows the diagnosis to move around depending on the symptoms, i.e.: IBS, IBS-C, IBS-D, bloating, etc... It's not unusual to be IBS-D and then IBS-C or IBS-mixed Fiber is still the first line of therapy for constipation; however, the right type of fiber is essential. A panel of gastroenterologist experts felt that a "squatty potty" is used by some of their patients and some recommend it for IBS-C and chronic constipation Is it IBS-D or bile acid diarrhea? Bile acid diarrhea has been seen more regularly and is being diagnosed more. A stool collection for 48-hours is very onerous for patients in order to make the diagnosis. A new blood test may be coming soon to diagnose bile acid diarrhea. Fecal Microbiota Transplant (FMT), implanting someone else's stool into you, had a very small double-blinded randomized trial performed and reported. There was some indication that it improved symptoms; however, the study was very small in order to draw absolute conclusions from it. Dr. Lin Chang (UCLA) proposed a pathophysiology of IBS

Saturday, May 6, 2017 Cognitive Behavioral Therapy (CBT) and Heart Rate and gastrointestinal symptoms in females with IBS-constipation aim is to reduce gastrointestinal symptoms immediately and with follow-up during therapy - data was collected at 8, 16 and 24 weeks. Data showed a change in symptoms of anxiety, depression and stress versus control group as measured by HRV (interval between heartbeats) - supports the use of CBT in IBS patients for helping to control symptoms of anxiety, depression and stress Microbiota DNA markers may have been found which will aid physicians and dietitians to determine which patients may respond to the low FODMAP diet A Gluten free diet has a positive effect on IBS transit times (time it takes for stool to pass through the colon) - this is based on the common blood testing for gluten intolerance (celiac disease) - this might be a new way for a blood test to determine if someone has IBS Monash University, Australia, where the low FODMAP was developed, commented that the low FODMAP diet can be challenging for vegans and vegetarians. There needs to be some additional strategies used to relax the low FODMAP diet for patients in this category, i.e.: allow more foods to be eaten Monash University found that consuming alfa-galactosidase taken with high galacto-oligosaccharides (GOS) foods provides significant reduction in IBS symptoms, naming bloating and abdominal pain - examples of GOS foods are: Lentils, Chickpeas, Green peas, Lima beans, Kidney beans - Beanaid (CVS pharmacies) is a good example of an alfa-galactosidase Dr. Lin Chang showed how IBS can become a vicious circle for some. Distension in the bowel leads to the brain network contributing to the sensation of pain.

IBS Patient attended Digestive Disease Week (DDW) 2017 held in Chicago this year from May 6-May 9. DDW is the foremost gastrointestinal event in the world, http://www.ddw.org. We were the only Irritable Bowel Syndrome patient group that attended DDW specifically for IBS research and on behalf of patients. We have highlighted the reports from each day in the following postings. Saturday May 6, 2017 Sunday May 7, 2017 Monday May 8, 2017 part 1 Monday May 8, 2017 part 2 Tuesday May 9, 2017 We encourage our website visitors to ask questions if you require further explanation.

I spent four days in Chicago at Digestive Disease Week (DDW) over the last week and learned a great deal about recent research related to IBS and other gastrointestinal disorders. I will summarize the highlights of the conference shortly. Stay tuned! P.S. I was the ONLY IBS Patient Advocate at this 14,000+ doctor medical conference.

We will be heading to Chicago in three weeks for Digestive Disease Week (DDW), the first & foremost GI event in the world, http://www.ddw.org. We are the only Irritable Bowel Syndrome patient group that goes to DDW specifically for IBS research. We maintain close ties with researchers and industry so that we learn about recent advances and future activities. We will provide daily updates on our community forum. Stay tuned! Jeff

Catching up on TV today I ran into an old research study that was presented in 2010 about the Placebo Effect and IBS. This was on CBS Sunday morning as their feature story on October 9. While I was disappointed that some viewers might get the wrong idea about IBS that it can be simply managed by fooling a patient into believing that a placebo medicine might work like an evidenced based one, I'm curious to know of anyone who might have been involved in this study. It's been widely stated for many years that IBS Patients have a higher than usual placebo response, yet there has never been any research that I am aware of, to explain why this is the case. Placebos without Deception: A Randomized Controlled Trial in Irritable Bowel Syndrome Ted J. Kaptchuk,1,2,* Elizabeth Friedlander,1 John M. Kelley,3,4 M. Norma Sanchez,1 Efi Kokkotou,1 Joyce P. Singer,2Magda Kowalczykowski,1 Franklin G. Miller,5 Irving Kirsch,6 and Anthony J. Lembo1 Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3008733/