Written by: Bonnie Feldman, DDS, MBA, Anna Simon, Ellen M. Martin
Obtaining timely and appropriate diagnoses, finding effective treatment and receiving quality care for autoimmune and other chronic conditions is often far too difficult, especially when you are feeling ill. If you have experienced such struggles, know you are not alone. Statistics show that more than 50 million adults in the US suffer from autoimmune diseases. However, clear diagnoses may take multiple practitioners, many tests and years of confusion, treatments are often determined by lowest-cost trial and error, and patients must work with multiple specialists with no central coordination…why does it remain so difficult to find the right resources and management options for these conditions?
As Your Autoimmunity Connection, our mission is to shed light upon the current state of autoimmune diseases – from patient stories to updated statistics and emerging research – and move towards tackling this “invisible epidemic.”
This month, we shine our spotlight on a non-autoimmune chronic condition: irritable bowel syndrome (IBS). Read on to find available statistics, research initiatives, supportive patient communities, and more resources. And check out our Facebook page and forum for more autoimmune-related updates!
What is IBS?
IBS is not technically an autoimmune disease, but rather a functional bowel disorder characterized by symptoms that overlap with autoimmune disorders (one barrier to fast and clear diagnosis). A functional disorder impairs normal functioning; in IBS, functions such as bowel processes and comfort are impaired. Unlike inflammatory bowel disease (IBD), no damage is apparent under physical examination or other tests, such as blood tests or biopsies. Differentiating between IBD and IBS is challenging because the symptoms are very similar. In IBD, however, clear signs of autoimmune tissue damage are seen, as well as blood test showing elevated immunological markers. Because no tissue damage is evident and there is no evidence of autoimmune attack, IBS is not considered an autoimmune disease. This does not make the symptoms any more tolerable, but it does affect treatment decisions and disease management. Nevertheless, up to 15% of adults in America suffer from IBS, more than 48 million people. About 70% of people suffering from IBS are women, with peak incidence in the 25-54 age range.
IBS affects the large intestine; symptoms include bloating, abdominal cramping, gas, diarrhea and/or constipation. IBS can cause extreme discomfort but does not appear to harm the intestines. Causes are still unknown, but theories point to hormonal changes, colon sensitivity, and a heightened response to stimuli such as stress and infection. Potential causes of symptoms include altered gastrointestinal motility and sensation, and poor stress and coping strategies. Many physical, environmental, and genetic factors interact to exacerbate and induce symptoms. Although there is no cure, symptoms can be managed through diet, probiotics, stress management, and relaxation exercises.
How is IBS Diagnosed?
The main factors a healthcare provider considers during diagnosis are recognizing characteristic symptoms, performing a physical examination, and doing diagnostic testing. The primary symptom of IBS is abdominal pain, in conjunction with changes in bowel habits. The Rome IV diagnostic states that symptoms must occur at least one day per week for at least three months. Gas and bloating are common symptoms, as well as chronic headaches, chest pain, insomnia, anxiety, and depression. Diagnostic testing can include blood tests, stool tests, and sigmoidoscopy or colonoscopy. Reflecting the functional nature of the disease, and in contrast to IBD, these latter tests are negative in IBS. That is, despite the distressing symptoms, there are no signs of intestinal damage or abnormal immune activity.
How is IBS Treated and Managed?
If you have or think you have IBS, fear not: there are many ways to ease your symptoms. Doctors commonly recommend the low-FODMAP diet, where you eliminate potential problem foods and then reintroduce them one at a time to help determine which trigger your symptoms. There are medications to help with diarrhea or constipation and prescription drugs that reduce pain or relax muscles. Since stress exacerbates symptoms, regular sleep and eating habits, exercise, therapy, and meditation can help. Alternative therapies include acupuncture, probiotics, and herbal supplements. As an IBS patient myself, I have found that the best ways to avoid painful stomach cramping and gas are avoiding my identified trigger foods and reducing stress (meditation works well for me).
What do the numbers show?
We strongly believe that there is strength in numbers, and strength in raising awareness as an initial step towards action. Read on to become connected with available statistics, research initiatives, supportive patient communities, and still more resources. And check out our Facebook page and forum for more updates!
Current available statistics on IBS estimate that…
- Prevalence ranges from 10%-25%,
- Only 30% of people with symptoms consult a physician,
- IBS is more common in women,
- The peak age of onset is between 25-54 years old,
- The risk is twice as high if you have a relative with IBS.
An estimate done in 2002 found that IBS adds over $1.3 billion/year in healthcare costs, and this number has most likely increased.
With both genetic and environmental influences contributing to onset, pinpointing precise causes of this condition can be challenging. While the International Foundation for Functional Gastrointestinal Disorders, along with other leading organizations, work towards reevaluating the current state of IBS, our team at Your Autoimmunity Connection is connecting patients with one another and with currently available resources.
The good news for those of you reading this – whether you are affected by IBS, have a loved one who is affected, or are simply generally interested – is that the recent increase in understanding from experiments with alternative approaches suggests that lifestyle changes, including diet, supplements, and exercise, may help moderate symptoms, reduce flares, and complement or replace the need for pharmaceutical treatments. For example, an elimination and diet and careful observation of what foods, FODMAPS, etc. are associated with flares may give patients considerable relief by avoiding foods and beverages that trigger sensitivity reactions.
Connecting you with available resources
Brush up on the basics of IBS
If you’ve reached this page and read this far along, chances are high that you already have at least some background knowledge about IBS, but it can’t hurt to brush up on the basics. Since IBS is a gastrointestinal disorder, it may seem similar to diseases such as an inflammatory bowel disease, or IBD (Crohn’s and ulcerative colitis). However, although IBS has overlapping symptoms with some autoimmune diseases, it is not an autoimmune disease because the immune system is not attacking the tissues of the body. The following pages each provide a comprehensive overview of IBS:
- Mayo Clinic: Irritable Bowel Syndrome
- Delve beyond a general overview to learn about root causes, risk factors, potential complications, and more.
- International Foundation for Functional Gastrointestinal Disorders: What is IBS?
- Recognize the most common signs & symptoms, discover potential treatments, and understand what life is like with IBS.
- Medicine Health: Test, Symptoms, Diet, and Treatments
- Explore this comprehensive website, including a differentiation between IBD and IBS (irritable bowel disease versus syndrome).
- National Library of Medicine: Irritable Bowel Syndrome
- This manuscript goes over epidemiology, physiological mechanisms, and more.
Beyond the basics – diving in deeper
- National Center for Complementary and Integrative Health: Complementary Health Approaches for Irritable Bowel Syndrome
- Dig into the research and evidence underlying potential treatments.
- International Foundation for Functional Gastrointestinal Disorders: Psychological Treatments
- Learn about the potential role of the gut-brain connection in reducing symptoms.
- American College of Gastroenterology: IBS Resources
- Peruse articles focusing on specific symptoms, gastroenterology, physician resources, and more.
For anyone affected – find your patient community
- IBS Patient Group: Support for IBS Sufferers
- The IBS Patient community is a place for discussion and support, as well as evidence-based medical information.
- Facebook Support Groups
- IBS Patient Group: Support for IBS Sufferers
What’s happening in research?
We’ve picked out a few of our favorite research resources – get caught up on recent findings, informed of future directions, and tap into your potential for involvement as a patient:
- US National Library of Medicine: Irritable Bowel Syndrome Research
- Explore the latest IBS-related headlines & research news.
- Science Daily: Irritable Bowel Syndrome News
- Browse the latest advances in Crohn’s and ulcerative colitis.
- Nature: News and Commentaries
- Check out another source for IBS research.
What is one thing everyone should know about irritable bowel syndrome?
We hope that shining the spotlight on irritable bowel syndrome this month connects you with beneficial resources and information, but we would like to emphasize the need to take a holistic approach in tackling the autoimmune disease epidemic. By looking at all autoimmune diseases together, we can move away from the fragmented view that hides the magnitude of the problem and towards concerted action in reshaping research, diagnosis, and treatment. Our model is the revolution in cancer research and treatment that has come from viewing cancer as a group of diseases with common etiologies, thus garnering more resources than individual types of cancer.
Where did we get this data, and where can you find more?
The following pages present statistics surrounding IBS incidence, prevalence, and more. Some of these “fast facts” you may be familiar with, but others may surprise you.
- International Foundation for Functional Gastrointestinal Disorders: Statistics
- National Institute of Health: Epidemiology of IBS
- National Institute of Diabetes and Digestive and Kidney Diseases: Digestive Diseases Statistics for the US
Get acquainted with Your Autoimmunity Connection
- Check out our blog at www.drbonnie360.com for all things autoimmune – from updates in research to possible lifestyle modifications, patient stories, and more.
- Find us on Facebook here, or join our Facebook Forum to connect with patients across all autoimmune diseases.
- Read our patient guide on How to Achieve Your Optimal Wellbeing
- Read our Guide to Movement Therapy