Welcome to the first official post on Emily's Gut Check! In case you missed the blog announcement on the IBD Connect main website page, I wanted to start this post by giving you some background information about myself. My name is Emily, and I am a wife, mom, and registered nurse with a background in intensive care and community health nursing. Throughout my nursing career, I have had several opportunities to care for both children and adults diagnosed with IBD. These patient and family interactions have allowed me to gain a thorough understanding of IBD from a medical perspective. However, through my friendship with Lisa’s daughter Randi, I have also been able to observe the effects of IBD from a more personal, holistic viewpoint. Randi was diagnosed with Crohn’s disease as a young child, and my friendship with her has allowed me to understand that IBD can really impact every area of a child’s life, whether it be physically, mentally, socially, or emotionally . With Emily's Gut Check, I hope to combine my medical expertise and education with my desire to holistically support parents of children with IBD. Here you will find current evidence-based IBD research, tips for certain diagnostic tests and procedures, interviews with IBD patients and family members, nutrition information, and hopefully support and encouragement for you and your child’s IBD journey!
Without further ado, I want to dive into our first topic, a topic I believe is a great starting ground for this blog: What is IBD? For some, this topic may be a bit dry. You have had several years of experience parenting a child with IBD; you certainly know what it is! However, for others, this topic is exactly what you need. Your child was just diagnosed with IBD, and you are looking for a starting ground to conduct your research. Maybe others just need a reminder of how IBD is diagnosed or what treatment options are available. No matter where you and your child are in your IBD journey, I hope you gain something out of this post! About 7 million people worldwide have been diagnosed with inflammatory bowel disease, or IBD.[1] Although IBD is not necessarily a common disease, the Center for Disease Control and Prevention (2020) notes that over the last twenty years, there has been an increase in the number of individuals with the diagnosis.[2] Perhaps your child is one of these individuals. As a parent, a diagnosis of IBD for your child can be incredibly overwhelming and frustrating. Despite the rise in prevalence of IBD, there is still a lot of confusion about the disease. This page is intended to help you demystify some of the many misconceptions about inflammatory bowel disease and provide you with a broad overview of the disease process. What exactly is IBD? What are the symptoms? What causes IBD? How prevalent is it? How is it diagnosed? Are there any complications? How is it treated? Please note that although the information on this page aims to equip you with the fundamental knowledge on the topic of IBD, it is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Please seek the medical advice of your child’s doctor for questions pertaining to your child’s condition or for more detailed information on the topic of IBD. What is IBD? Inflammatory bowel disease (IBD) is defined as a chronic inflammation of the GI tract.[3] In an individual diagnosed with IBD, the body is triggered to produce an exaggerated, inappropriate immune response that results in GI tract inflammation. IBD is therefore considered to be an autoimmune disease. The resulting prolonged inflammation can cause tissue destruction and damage to the GI tract. IBD is characterized by periods of remission and periods of exacerbation.[4] IBD is classified as either Crohn’s disease or ulcerative colitis based on the clinical manifestations of the disease. Crohn’s disease can affect any part of the GI tract, which includes the mouth to the anus. The affected areas of the GI tract are interspersed between areas of healthy tissue. This is why you may hear Crohn’s disease described as “patchy.” The inflammation from Crohn’s disease may affect all layers of bowel wall. In contrast, ulcerative colitis occurs in the rectum and large intestine (colon). UC usually starts in the rectum and spreads in a continuous fashion further into the colon. The area of inflammation does not extend through all layers of the bowel wall. Instead, the inflammation is found only in the innermost layer.[5] Please see the diagram that highlights the differences between Crohn's disease and ulcerative colitis towards the end of the article. What are the Symptoms of IBD? Some of the common symptoms of IBD include:
Please note that this is not a comprehensive list of all IBD symptoms. Additionally, there are some differences in symptoms between the two types of IBD. For example, weight loss is more common in those diagnosed with Crohn’s disease, whereas bloody stools are more prevalent in those diagnosed with ulcerative colitis.[6] What Causes IBD? Unfortunately, the exact cause of IBD is unknown. However, we do know that the disease is a result of a weakened immune system.[7] In a patient with IBD, the individual’s immune system develops an overactive, inappropriate immune response to the body’s own GI tract.[8] The most widely believed theory is that IBD is the result of an environmental trigger that causes an inappropriate, uncontrolled immune response in a genetically prone individual[9]. We know that IBD occurs more frequently in family members of people with IBD.[10] Of note, many people believe that IBD is caused by diet. While it is true that certain foods can exacerbate symptoms of IBD, a person’s diet is not what initially causes IBD to manifest. The same is true regarding stress, air pollution, and smoking. How Prevalent is IBD? As mentioned previously, about 7 million people worldwide have IBD.[11] According to the CDC website (2020), “In 2015, an estimated 1.3% of US adults (3 million) reported being diagnosed with IBD (either Crohn’s disease or ulcerative colitis).”[12] How prevalent is an IBD diagnosis in children? One study found that there are about 70,000 children in the United States diagnosed with IBD.[13] This study mentions that the incidence of pediatric IBD in the United States is rising. How is IBD Diagnosed? In order for IBD to be diagnosed, your doctor will need to collect a full history of your child’s symptoms and complete a physical examination. Your child’s blood will be drawn and a stool sample will be needed for evaluation. Other diseases with similar symptoms must be ruled out first. For example, early symptoms of Crohn’s disease can be similar to symptoms of irritable bowel syndrome (IBS). Other conditions that may be causing symptoms of IBD are iron-deficiency anemia, toxic megacolon, bowel perforation, electrolyte imbalances, and infection. This is not a comprehensive list, and an unlisted condition may be the culprit behind IBD symptoms. You should always discuss symptoms, diagnosis, and treatment plans with your child’s doctor. After other conditions are ruled out, IBD is usually diagnosed based on certain tests, such as endoscopy, enteroscopy, sigmoidoscopy, and/or colonoscopy. Imaging studies (X-ray/CT/MRI) are sometimes necessary and can also be useful in diagnosing IBD. Can There be Complications From IBD? Patients with IBD can experience both local and systemic complications. Local complications in IBD patients are defined as complications that are confined to the GI tract, whereas systemic complications are those that occur outside of the GI tract. Local complications can include:
Systemic complications can include:
IBD can also increase the risk of developing colon cancer. Talk with your child’s doctor about when and how often your child should be screened for colon cancer. Additionally, your child may develop medication side effects from the medications needed to treat IBD. How is IBD Treated? There is no cure for IBD, although there are periods of time where the disease is in remission. The right treatment plan can increase the length of remission. The goals of treatment for IBD are to rest the bowel and control the inflammation. Other goals of care include: preventing and/or treating infection, correcting malnutrition if present, alleviating stress, and improving quality of life.[14] There are several methods of IBD treatment, which include:
Conclusion IBD is a disease in which the body produces an exaggerated immune response that results in GI tract inflammation. Prolonged inflammation can cause GI tissue damage. This may cause several symptoms, including: persistent diarrhea, weight loss, fatigue, abdominal pain, and bloody stools. An individual diagnosed with IBD can also have both local and systemic complications, as well as experience side effects from medications used for treatment. There is no cure for IBD, but the right treatment plan can increase the number of remission periods, as well as the length of remission. Treatment includes medication management, nutritional therapy, and surgical intervention. If you are a more visual or auditory learner, there is a video linked at the bottom of this page that Mass General Brigham created on the topic of IBD. This video provides a succinct overview of IBD and highlights several of the key points discussed above. Further Steps With the incidence of IBD diagnosis in the United States rising, IBD awareness is more important than ever. If you have a child who was recently diagnosed with IBD, the information on this page may be overwhelming. If you feel the need to talk to someone, you can always reach out to me or anyone on the IBD Connect team. The main website and my email address are linked and listed at the bottom of this page. Again, please use this post only as a starting ground or a refresher for your IBD knowledge and research, not as a substitute for a professional opinion. For more detailed information about IBD, please seek out professional medical advice, especially if you have questions pertaining to your child’s unique medical situation or IBD diagnosis. There are options for IBD support so please do not feel alone in this journey! If you are willing, please comment below on different strategies that have helped you cope with you or your child’s IBD diagnosis, whether it be connecting with a therapist, joining a support group, journaling your thoughts, or listening to music! If you have questions about IBD Connect or want to connect with a support group, please visit our main website. Links for the main page and the connection group page are linked at the very bottom of this post. We would love to help you! If you have a specific question or a topic you would like discussed in a blog post, feel free to email me at emilyibdconnect@gmail.com. My email is also linked at the very bottom of this page! 
[1] Sudabeh Alatab et al., The Global, Regional, and National Burden of Inflammatory Bowel Disease in 195 Countries and Territories, 1990–2017: A Systematic Analysis for the Global Burden of Disease Study 2017 [2] Centers for Disease Control and Prevention, World IBD Day-May 19, 2022. [3] Lewis, Sharon et al., Medical-Surgical Nursing: Assessment and Management of Clinical Problems (St. Louis, Missouri: Elsevier, 2017), 944. [4] Lewis et al., 944. [5] Centers for Disease Control and Prevention, What is Inflammatory Bowel Disease? [6] Lewis, 946. [7] Centers for Disease Control and Prevention, What is Inflammatory Bowel Disease? [8] Lewis, 944. [9] Alatab et al. [10] Lewis, 944. [11] Alatab et al. [12] Centers for Disease Control and Prevention, Prevalence of IBD. [13] Michael J Rosen., Dhawan Ashish, and Shehzad A. Saeed. Inflammatory Bowel Disease in Children and Adolescents. JAMA Pediatrics 169, no. 11 (2015): 1053 [14] Lewis, 946. Bibliography
Alatab, Sudabeh, Sadaf G Sepanlou, Kevin Ikuta, Homayoon Vahedi, Catherine Bisignano, Saeid Safiri, Anahita Sadeghi, et al. “The Global, Regional, and National Burden of Inflammatory Bowel Disease in 195 Countries and Territories, 1990–2017: A Systematic Analysis for the Global Burden of Disease Study 2017.” The Lancet Gastroenterology & Hepatology 5, no. 1 (2020): 17–30. https://doi.org/10.1016/s2468-1253(19)30333-4.
Lewis, Sharon Mantik, Linda Bucher, Margaret McLean Heitkemper, and Mariann M. Harding. Medical-Surgical Nursing: Assessment and Management of Clinical Problems. St. Louis (Miss.): Elsevier, 2017. “Prevalence of IBD.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, April 14, 2022. https://www.cdc.gov/ibd/data-and-statistics/prevalence.html. Rosen, Michael J., Ashish Dhawan, and Shehzad A. Saeed. “Inflammatory Bowel Disease in Children and Adolescents.” JAMA Pediatrics 169, no. 11 (2015): 1053. https://doi.org/10.1001/jamapediatrics.2015.1982. “What Is Inflammatory Bowel Disease (IBD)?” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, April 13, 2022. https://www.cdc.gov/ibd/what-is-ibd.htm. “World IBD Day– May 19, 2022.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, April 15, 2022. https://www.cdc.gov/ibd/features/world-ibd-day.html.
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