Welcome back to Emily’s Gut Check! Today we will be discussing some of the common myths and misconceptions regarding IBD, a topic that I have been looking forward to writing about for quite some time. There were several reasons that I was excited to introduce this topic. First, receiving a diagnosis of Crohn’s disease or ulcerative colitis for your child is in itself overwhelming and frustrating. Sometimes it can be hard to separate the real facts about IBD from the false information that circulates. Sometimes parents of children diagnosed with IBD can receive unsolicited opinions or even a misrepresentation of the facts from well-meaning individuals, especially early in the diagnosis. Second, I hope to spread awareness to those individuals who may believe one of the myths below. It’s always good to learn something new! Third, if you are a parent that is already very familiar with IBD, you may be able to take solace in the fact that there are others who don’t believe these misconceptions and understand how IBD works. Hopefully you can experience some camaraderie with other IBD Warrior parents. Before we begin, I wanted to make it known that I included a video that provides a brief overview of IBD at the bottom of this page for anyone who may benefit from it. So let’s dive into some of the common myths and misconceptions about IBD together!
Myth #1: Diet is the cause of IBD.
What you eat on a day to day basis certainly is not the cause of IBD! Unfortunately, the exact cause of IBD is unknown. We do know, however, that the disease is a result of immune system dysregulation. In a patient with IBD, the individual’s immune system develops an overactive, inappropriate immune response to the body’s own GI tract. The most widely believed theory is that IBD is the result of an environmental trigger that sparks this inappropriate, uncontrolled immune response in a genetically prone individual. We do know that IBD does occur more frequently in family members with IBD. Despite what the research says, many people still tend to believe that diet is the initial spark that can cause IBD to manifest. This may be because certain foods can exacerbate IBD symptoms in an individual that is already diagnosed with IBD.
Myth #2: Stress is the cause of IBD.
Once again, IBD is caused by immune system dysregulation. While it is true that stress can certainly trigger IBD flares and/or exacerbate IBD symptoms, stress in itself is not the cause of IBD. The same is true regarding diet (see above), air pollution, and smoking.
Myth #3: IBD and IBS are the same thing.
IBD and IBS are often confused with one another. It is easy to see where the confusion lays, as both have similar acronyms and can cause similar symptoms. However, IBD and IBS are very different conditions. IBD stands for inflammatory bowel disease, which by definition is a disease of immune system dysregulation that results in a chronic inflammation of the GI tract. This chronic inflammation can lead to tissue destruction and damage to the GI tract. IBS, on the other hand, stands for irritable bowel syndrome, which manifests as a collection of symptoms that can closely resemble symptoms of IBD. However, IBS is a disorder of gut/brain interaction and does not cause any digestive system damage. To complicate matters even further, in the past IBS was referred to as “colitis,” and we all know that ulcerative colitis is one of the two different types of IBD!
Myth #4: Diet and/or surgery will cure IBD.
Unfortunately, there is no cure for IBD, but there are periods of time that the disease is in remission and symptoms are reduced. There are several treatment options that can increase the length of remission, and diet and surgery can certainly be part of the treatment plan. The goals of treatment are to rest the bowel and to control the inflammation that IBD causes. Other goals of care include: preventing and/or treating infection, correcting malnutrition if present, alleviating stress, and improving overall quality of life.  These goals can be achieved not only through diet and surgery, but also through medication therapy, rest, and counseling/support groups. In short, diet and surgery will not cure IBD, but they can certainly help an IBD patient to achieve and/or lengthen remission.
Myth #5: IBD only causes digestive system or “gut” symptoms.
It is very common to assume that IBD only causes digestive system or “gut” symptoms. However, patients with IBD can also experience what is called extraintestinal manifestations, or symptoms that can happen outside of the intestine. These symptoms can be experienced in the skin, eyes, joints, kidneys, liver, and bones. For example, an IBD patient may have osteoporosis as a result of an extraintestinal manifestation of the bones. Another IBD patient may have frequent kidney stones as a result of an extraintestinal manifestation of the kidneys. Still another IBD patient may have arthritis due to an extranational manifestation of the joints. Patients can also suffer from other systemic complications such as anemia, dehydration, and malnutrition.
Myth #6: IBD is just a “poop” disease and can’t be that serious.
As mentioned above under Myth #5, IBD can cause symptoms that manifest outside of the digestive system, which discredits the first part of this myth. As for the second part, there are certainly complications of IBD that can lead a patient to be in critical condition thus an IBD diagnosis should not be taken lightly. Local complications, or complications that affect the GI tract, can include:
There are also systemic complications, or extraintestinal complications, which can include:
Several of the local and systemic complications listed above can become life-threatening without proper medical treatment. Emergency interventions may need to be implemented. Additionally, IBD can increase the risk for developing colon cancer and certain IBD medications may lead to serious side effects. Overall, it is best practice to follow the medical advice of your child’s doctors to prevent these serious complications. IBD is so much more than just a “poop” disease.
Myth #7: All IBD patients will need surgery and/or have a stoma.
Not everyone with IBD will require surgery. Surgery is just one strategy for IBD management in certain individuals. Patients with IBD undergo surgery for several different reasons. Some patients may stop responding to medication therapy. For others, surgery may improve quality of life. Some IBD patients may need emergency surgery. There are also several different types of surgeries that can be performed for IBD patients, meaning not everyone that requires surgery for IBD will get the same procedure. Some procedures do not create an ostomy!
Myth #8: If you have surgery to create an ostomy, you will have the ostomy for life.
This myth is partially true. Every IBD case is unique. In general, there are several different types of surgeries that an IBD patient could theoretically have. If surgery is advised, the type of surgery recommended is based on your child’s clinical presentation and the doctor’s best judgement. If your child’s doctor recommends surgery to help treat IBD, sometimes, a temporary ostomy is sufficient to allow the bowel to rest. The ostomy may be able to be reversed, usually at least 3 months after the procedure. In other cases, a doctor may recommended a permanent ostomy with no plans for ostomy reversal. As I stated earlier, there are several different types of surgeries to help treat IBD, and each IBD case should be approached individually.
Myth #9: If you have IBD, you will not be able to live like “normal people.”
While IBD is a very serious disease, it is still entirely possible to live a “normal” life! I use that term loosely because the definition of “normal” is so subjective. In general, sticking with the treatment plans prescribed by your child’s doctor will give your child the best possible chance of achieving and staying in remission. It is important to note, however, that your child may not always feel “normal” with IBD. Things like needing to find a bathroom urgently or packing medications for a sleepover may make your child feel as though they are “sticking out” among their peers. Therapy and/or support groups are a great place safe space for your child to communicate some of their feelings.
I hope the information on this page was useful in breaking down some of the most common myths about IBD. As always, please do not use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor! I also just wanted to remind everyone that that there are options for IBD support. The links for the IBD Connect main page and support group pages are listed below. If you have any questions for me or if you want to venture a topic for a future blog post, feel free to email me at my email address listed below! As always, stay strong IBD Warriors/IBD Warrior parents!
 Lewis, Sharon et al., Medical-Surgical Nursing: Assessment and Management of Clinical Problems (St. Louis, Missouri: Elsevier, 2017), 944.
 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
 Lewis et al., 944.
 Lewis et al., 944.
 Definition and Facts for Irritable Bowel Syndrome
 Lewis et al., 946.
 Rogler et al., Extraintestinal Manifestations of Inflammatory Bowel Disease: Current Concepts, Treatment, and Implications for Disease Management
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.
“Definition & Facts for Irritable Bowel Syndrome - NIDDK.” National Institute of Diabetes and Digestive and Kidney Diseases. U.S. Department of Health and Human Services. Accessed April 6, 2023. https://www.niddk.nih.gov/health-information/digestive-diseases/irritable-bowel-syndrome/definition-facts.
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.
Rogler, Gerhard, Abha Singh, Arthur Kavanaugh, and David T. Rubin. “Extraintestinal Manifestations of Inflammatory Bowel Disease: Current Concepts, Treatment, and Implications for Disease Management.” Gastroenterology 161, no. 4 (2021): 1118–32. https://doi.org/10.1053/j.gastro.2021.07.042.
Hi! My name is Emily Fournier, and I am a wife, mom, and registered nurse currently living in MA. I graduated with my Bachelor’s Degree in Nursing in May of 2020. Since graduation, I have had experience working as a registered nurse in both a hospital intensive care unit and a community health center. Throughout my nursing career, I have had several opportunities to care for IBD patients of all ages, which has allowed me to gain a thorough understanding of IBD from a medical perspective. Through my friendship with an individual diagnosed with Crohn's disease at a young age, I have also been able to see how IBD affects every aspect of an individual, whether it be physically, socially, mentally, or emotionally. With Emily’s Gut Check, I hope to combine my medical expertise with a more holistic approach to IBD care in order to provide support and encouragement to anyone affected by IBD, but especially to parents of a child diagnosed with IBD. Please do not hesitate to reach out to me at firstname.lastname@example.org if you have any questions, need advice, or have an idea for a blog topic to cover. Thank you all for being on this journey with me!