Welcome back to Emily’s Gut Check! If you are already familiar with my blog, you know that I primarily gear my writing to parents of children diagnosed with IBD. While I hope that this blog is a useful tool to support anyone affected by IBD, my overall goal is to equip, educate, and encourage parents especially as they navigate their child’s IBD journey. I attempt to write blog posts that draw on both my professional experience as a registered nurse, as well as my personal experience as a close friend to an IBD warrior. Today’s post is near to my heart, as I want to focus on the latter and share my own personal experiences supporting a friend with IBD. At first glance, this post may seem to be geared only towards friends of IBD warriors, and I truly do hope that friends, siblings, extended family, and other acquaintances will benefit from my perspective. However, I am hopeful that if you are a parent reading this page, you may be able to gain insight on a different facet of your child’s life that you may not see as often: their friendships! You also may choose to share this information with people who approach you with questions on how to interact with your child after an IBD diagnosis. Or, if it is age appropriate, you may choose to use the information on this page to engage and coach your child in growing or maintaining their own friendships after an IBD diagnosis. In short, parents may not be able to relate to this post in the same way as my previous posts, but I’m optimistic that something will still be gained by sharing my personal story. I’m excited for the IBD Connect community to gain a little more insight on how my experiences helped to shape the vision for Emily’s Gut Check.
Before we begin, I wanted to mention a few housekeeping items and disclaimers. First, if you are new to IBD Connect or to Emily’s Gut Check, check out our main website and our support group page that are linked at the bottom of this page. If you have any questions or need further assistance, please reach out to me or to one of the other IBD Connect team members. My email address is linked at the bottom of this page. Also, feel free to read over my previous blog posts for more information about the blog itself and about all things IBD of course! Second, while this post is not heavily medical or clinical like some of my previous posts, please still note that the information on this page 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. Third, as you read this post, I want you to keep in mind that this is my own personal experience supporting an individual diagnosed with IBD. Every individual with IBD is different, and some of the tips or tricks that I will share may not be beneficial for everyone. This post is intended for general guidance only. If you feel as though professional medical, psychiatric, or physiological help is necessary for you, your child, or a friend, please seek out the necessary professionals, such as a medical doctor, psychiatrist, or licensed therapist for assistance. Now let’s dive in! Background
To begin, I wanted to just provide a brief overview of my relationship with Randi Renfro, Lisa’s daughter. Randi was diagnosed with Crohn’s disease at a very early age. She is very open to discussing her diagnosis and the impact it has had on her life, and she has given me permission to discuss her story a little more in this post. If you’ve been following my blog, you know that I have actually interviewed Randi for one of my blog posts. Randi provides a great overview of her IBD journey, starting from her diagnosis at a very early age and ending with her career as a registered nurse. In the interview, we discussed how IBD impacted her physically, emotionally, mentally, and socially, and we covered topics like dating, friendships, 504 plans, and college. The link to Randi’s interview is at the bottom of this page for those of you who are interested in taking a look.
I met Randi while we were both in middle school. We were in the same grade, and we had many of the same friends so we would occasionally interact in school, but we were not very close. While in middle school, I had noticed some things that seemed to make Randi “stick out” from our peers. For example, I noticed that Randi seemed to miss a lot of school. I also noticed that if we were going on a class field trip, usually one of Randi’s parents was a chaperone. I know a lot of parents worry about their child with IBD not fitting in or “sticking out” from classmates. I cannot speak for every child, but I can confidently tell you that personally, these differences did not leave much of an impression on me. I’m not saying that I didn’t notice differences, but I wasn’t focused on them. And they certainly did not change how I interacted with Randi. I do not remember a specific moment in which I learned that Randi had Crohn’s disease. There certainly wasn’t an earth-shattering, lightbulb moment in which everything about Randi’s differences made sense. I’m not even sure if I found out from her or if I casually heard about it through other friends or classmates. I definitely remember that I knew she had Crohn’s disease before we entered high school. However, at that time, the phrase “Crohn’s disease” did not mean anything to me. I had a vague understanding that people with Crohn’s disease needed to go to the bathroom more and were frequently tired. That was the extent of my understanding before entering high school. When high school started, Randi’s main friend group and my main friend group essentially merged, and suddenly Randi and I were hanging out in group settings much more frequently. I remember that Randi was usually open to talking about her Crohn’s disease. She would crack a “poop” joke or mention she had an infusion coming up. Crohn’s was typically discussed within our friend group in a casual manner. We didn’t shy away from the topic, but we didn’t talk too deeply about it either when we were in a group setting. Towards the end of high school, Randi and I started to hang out more individually, separate from our friend group. We have a lot of similarities in terms of personality, world view, and interests, and thus, our friendship organically blossomed. We were both interested in becoming registered nurses, which was a shared goal that really bonded us. As our friendship grew, I began to learn more about how Crohn’s disease was affecting Randi. She would talk more openly and deeply about her feelings. Because I was also now interested in Crohn’s disease from a medical perspective as well, I began to do a lot of research on IBD. I didn’t want to be ill-equip at helping Randi process her feelings or be lost in a conversation about a medical concept that I didn’t understand. I wanted to be there for her. Eventually, we became extremely close, and Randi would talk very openly about her feelings in terms of Crohn’s disease with me. We both went to the same college for nursing and graduated together. I actually married her older brother post-graduation so we are now sisters-in-law! Practical tips
Now that you know a little bit more of my backstory with my friendship with Randi, I just wanted to share some practical tips for how I personally went about supporting her as she navigated her IBD journey. Please keep in mind that if you are a friend of an IBD warrior and reading this blog post for advice, everybody is different. What works for Randi, may not work for your friend. These are just general suggestions. Open, honest communication is always best to determine how your friend wants to be supported.
The above tips are meant to be general guidelines for supporting a friend with IBD. If you do happen to develop a close friendship with someone affected by IBD or someone you were already close to was recently diagnosed with IBD, you can take these practical tips and then curate them to fit that individual’s needs. For example, in high school Randi was on a medication that required hospital infusions. One of the ways I spent time with her intentionally and showed her support is by accompanying her to infusions occasionally. We watched movies, played games, and talked during infusions. Sometimes she would nap, and I would catch up on homework or read a book. I also think it’s worth mentioning that the more time you spend with the individual, the easier it will be to determine how they would like to be supported. You’ll feel more confident in determining when you should be a shoulder to cry on, when your friend needs to vent, when they want to talk about anything other than IBD, or when using humor is appropriate. I found this was true with my relationship with Randi. The closer we grew as friends, the more I could appreciate how Crohn’s affected her everyday life and the more I grew to understand how she wanted to be supported. In closing, there are so many ways to practically support a friend with IBD. Every individual is unique, and the best way you can grow in supporting an IBD warrior is by honest, open communication. I included a video below where a Crohn’s patient explains ways that she feels supported by her friends. I included this video to give perspective on this topic from an actual IBD patient. Just keep in mind that every IBD patient is different!
I hope you enjoyed my personal story and the practical tips that I’ve learned over the years as I seek to support Randi and her diagnosis. Feel free to leave any other practical tips or suggestions for support in the comments below! If you have any questions or have any ideas for future blog posts, please don’t hesitate to email me. As always, stay strong IBD Warriors/IBD Warrior parents/IBD Warrior friends!
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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.[1] 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.[2] We do know that IBD does occur more frequently in family members with IBD.[3] 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.[4] 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.[5] 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. [6] 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.[7] 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!
[1] Lewis, Sharon et al., Medical-Surgical Nursing: Assessment and Management of Clinical Problems (St. Louis, Missouri: Elsevier, 2017), 944.
[2] 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 [3] Lewis et al., 944. [4] Lewis et al., 944. [5] Definition and Facts for Irritable Bowel Syndrome [6] Lewis et al., 946. [7] Rogler et al., Extraintestinal Manifestations of Inflammatory Bowel Disease: Current Concepts, Treatment, and Implications for Disease Management 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. “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. |
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September 2023
AuthorHi! 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 emilyibdconnect@gmail.com 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! |
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