Welcome back to Emily’s Gut Check! Today we will be discussing ostomies. There are roughly 725,000 to 1 million people living with an ostomy or continent diversion in the United States.[1] Approximately 100,000 ostomy surgeries are performed each year in the United States.[2] Despite the sheer number of people that have ostomies, there still seems to be a lot of confusion encompassing them, even amongst the IBD community. What is an ostomy? Why would someone have to undergo ostomy surgery? How do you care for an ostomy? Are they permanent? Can you tell if someone has one? These are just a few of the questions I hope to answer in this post. Together, we will unpack what an ostomy is, briefly discuss care and management, and finish with addressing some ostomy-related myths and questions. This post is a little more medically heavy than my last post, so as always, I want to remind everyone not to 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. Now let’s dive into the discussion!
What is an Ostomy? An ostomy is a surgical procedure in which a portion of the digestive or urinary system is rerouted through an opening in the abdomen called a stoma. The stoma allows for waste to pass out of the body. [3] The waste is then collected in an external ostomy pouch or appliance. There are three common types of ostomies. These are:
There are several reasons why an individual may need ostomy surgery. Some of these include:
Ostomies in Relation to IBD In the case of IBD, ostomies are often used when medical treatments fail to control symptoms, or when there is a risk of life-threatening complications, such as bowel obstruction or perforation. The common types of ostomies needed for IBD patients are colostomies and ileostomies. These types of ostomies can be either temporary or permanent, depending on the severity of the disease. Sometimes, a temporary ostomy is sufficient to allow parts of the bowel to rest and heal. Temporary ostomies can provide relief and improve quality of life by:
Living with an Ostomy Because there are several different types of ostomies and appliances, I will not be going into very specific details about how to care for an ostomy. Instead, I will give general guidelines that most providers would agree upon in relation to ostomy care. You should always follow the patient-specific guidelines given to you from your child’s doctor or wound care/ostomy nurse.
In general, you should give your child’s provider a call if your child’s stoma:
You should also give your child’s provider a call if:
There are some potential complications associated with having an ostomy for IBD, including: stoma problems, pouch problems, dehydration, nutritional deficiencies, psychological distress, and in rare cases, bowel obstruction. In general, it is always best to have open, honest communication with your child’s provider about any questions or concerns you or your child may have in relation to your child’s ostomy. Living with an ostomy can be challenging, but there are many resources available for support and information, including United Ostomy Association of America (https://www.ostomy.org/) and Hollister Ostomy Care (https://www.hollister.com/en). IBD Connect is also here to support you! Please feel free to reach out to myself or someone else on the IBD Connect team. Myths and Questions: Myth: An individual with an ostomy must feel sick all the time. I will respond to this myth in regards to ostomies in IBD patients in specific. A large majority of people with IBD who have had ostomy surgery actually state that having the ostomy surgery has given them their life back. As mentioned earlier, ostomy surgery can help to alleviate a lot of the symptoms of IBD because the diseased/inflamed portion of the bowel is no longer working so hard. This means that symptoms like abdominal pain, urgency, and diarrhea are typically reduced or resolved. Question: Can you exercise with an ostomy? Yes! In general, if there were no complications with the ostomy surgery, your child can begin exercising again pending your doctor or provider’s approval. Your child may need to have some accommodations, however. For example, if your child is interested in playing a contact sport, your child may need to wear a protective stoma cover. The risk of hernia is also greater so it is best to discuss activities like weight lifting with your provider. Myth: Ostomies are permanent. This myth has already been addressed in this post. To recap, every IBD case is unique. If ostomy 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 recommend a permanent ostomy with no plans for ostomy reversal. Each IBD case should be approached individually. Question: Will the ostomy smell? Typically, an ostomy appliance is air-tight. This means that you shouldn’t notice any odor if the pouch is closed. Many ostomies appliances are built with air filters that neutralize potential odors as well. If you do notice an odor, there may be a leak. You may notice an odor when you change or empty the pouch because the system will be open. To prevent odor, you should ensure that the pouch system fits nicely and empty it regularly. If the pouch gets too full, the weight can cause a leak, which means that odor may escape. Sometimes certain foods can cause more odor. There are products that help combat odor if it does become a true concern or issue. These products are designed specifically for ostomies. You should never attempt to use an odor neutralizing product that isn’t made specifically for ostomies. Question: Can I shower or bathe with an ostomy? What about going in a pool, lake, or ocean? Yes and yes! For showering and bathing, you should make sure you talk with your child’s medical provider or wound care/ostomy nurse. Some patients prefer to shower or bathe with the appliance completely off. Some patients find that this increases stoma irritation. However, it is okay for the stoma to get wet. In general, if your child is showering or bathing without the pouch system, make sure the flange/skin barrier is removed as well. If your child is showering or bathing with their pouch system, ensure that the seal is secure and wear both the skin barrier/flange and the pouch system. Patients can also swim while wearing their pouch system! The system is designed to be water resistant. Just be sure to check the seal prior to swimming.[5] Myth: You can’t wear normal clothes with an ostomy. Typically, you can wear the same clothing after an ostomy surgery as you wore before ostomy surgery. There are some products that help to keep the pouch in place if that is something your child desires. Furthermore, ostomies usually aren’t visible underneath clothing! Question: Does your diet have to change with an ostomy? Truthfully, your child’s diet should change. Once again, every IBD patient is different so it is important to have a discussion with your child’s medical team in regards to diet. These discussions should include a registered dietician who has experience with ostomy surgeries. In general, immediately following surgery and for a few weeks, it is best to eat foods that are easier to digest and foods that produce less gas. Some other helpful tips include:
Myth: You cannot get pregnant if you have an ostomy. False! Many ostomates successfully become pregnant and deliver healthy children. When this time comes for your child, it will be important for her to communicate with her medical team about her intent to become pregnant. Generally speaking, however, ostomy patients typically do well in pregnancy if there are no other health concerns. There can be some skin changes with the stoma and other minor changes that occur during pregnancy. I hope the information on this page was useful in providing a general overview about ostomies. I am excited to share that the discussion about ostomies today was actually planned in preparation for my next post, which happens to be a very special interview with two ostomates! We will look into how having ostomy surgery has impacted their lives, physically, mentally, and emotionally. I am looking forward to sharing this interview with you all next time on Emily’s Gut Check. I have a few reminders to wrap up this post. Once again, it is always best to listen to your child’s medical provider in regards to your child’s individual treatment plan. Please do not use this page as a substitute for a professional medical opinion. 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! END NOTES
[1] Burgess-Stocks, Joanna et al., Ostomy and Continent Diversion Patient Bill of Rights, 2022
[2] Burgess-Stocks, et al. [3] Ostomy [4] Ileostomy - Caring for Your Stoma [5] Contributor. Swimming with an Ostomy. Bibliography
Burgess-Stocks, Joanna, Jeanine Gleba, Kathleen Lawrence, and Susan Mueller. “Ostomy and Continent Diversion Patient Bill of Rights.” Journal of Wound, Ostomy & Continence Nursing 49, no. 3 (2022): 251–60. https://doi.org/10.1097/won.0000000000000876.
Contributor. “Swimming with an Ostomy.” United Ostomy Associations of America, July 17, 2020. https://www.ostomy.org/swimming-with-an-ostomy/#:~:text=You%20can%20swim%20or%20be,harm%20or%20enter%20your%20stoma. “Ileostomy-Caring for Your Stoma: Medlineplus Medical Encyclopedia.” MedlinePlus. Accessed May 11, 2023. https://medlineplus.gov/ency/patientinstructions/000071.htm. “Ostomy.” MedlinePlus. Accessed May 11, 2023. https://medlineplus.gov/ostomy.html.
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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!
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.  Hello everyone! My name is Emily Fournier, and I am the author of Emily’s Gut Check! I am a wife, mom, and registered nurse who is passionate about combining medical knowledge with a desire to holistically support parents of children with IBD. This post is special because I decided to interview one of our very own IBD Warriors, Randi Renfro (Fournier). Randi has had over 20 years of experience with IBD; she started having IBD symptoms at just 4 years old. If her name sounds familiar, that is because she is one of Lisa’s daughters and a member of the IBD Connect Board of Directors! I was able to send some questions to Randi, and she types out her answers for us. In this interview, Randi answers questions about the physical, social, emotional, and mental impact that IBD has had on her life. We discuss growing up with IBD, making the transition to college, and starting her career as a registered nurse. She even shares advice she has for parents of children with IBD. With her personal experience living with Crohn’s disease for the majority of her life, as well as her experience as a registered nurse, Randi has a wealth of information about IBD. I hope you enjoy the interview!
Also, if you haven’t read it already, check out my first post, “What is IBD?” This post provides a broad overview of IBD, including information on symptoms, diagnosis, prevalence, complications, and treatment options. It serves as a great starting ground for IBD research and knowledge. However, as I stated in the last post, my blog 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. Without further ado, let’s get started! Can you please introduce yourself? Give us a little bit of background about who you are! My name is Randi, I am 24 years old, and I am a Registered Nurse. I grew up in Massachusetts, but moved to Colorado with my husband in June of 2022. We are now expecting our first child, a baby girl, in July! My mom is Lisa Fournier, who most know and love for IBD Connect Inc. Both my mom and dad were very involved in my childhood. I have two older brothers, and an older sister. My sister was very supportive of my illness growing up, and was diagnosed late in life with Crohn’s. I am very family-oriented, enjoy hanging out with friends and the outdoors, and love to support others with IBD. When were you diagnosed with IBD? Were you diagnosed with Crohn’s disease or ulcerative colitis? How old were you? Do you remember the circumstances surrounding your diagnosis (i.e. how you were told, how you felt at the time, etc.)? If so, please describe that for us. I was originally four years old when I got sick. I do not remember much, but hear I missed a lot of Kindergarten. I was not officially diagnosed until I was six, and was diagnosed with Ulcerative Colitis. I do not remember any specific feelings as I was so young, but I have very specific memories. One I remember is my mom carrying me into school midday to pick up packets of work to do at home. Another is being hospitalized and the saline flush hurting me, so the nurse let me do it slowly to not hurt. I stayed sick despite trying medication after medication, so continued to have frequent hospital trips. It was not until I was nearly 12 years old that I was diagnosed with Crohn’s instead, and tried a new course of treatment. If you feel comfortable sharing, what areas of your GI tract have been affected by Crohn’s disease? Where is your inflammation located? It depends on the time period. Early on, most of my small and large intestines were inflamed. I had many issues getting control. After starting new treatment on a class of medication called biologics, I only gained remission temporarily. Once out of remission, I was not super sick, but had symptoms. This is when most of my disease was in my descending colon and rectum. This area has remained a problem area for me. What has your treatment looked like over the years? What medications have you been on? Have you had any surgeries related to IBD? It has been a bit chaotic. I do remember the very first medication I tried. It was sulfasalazine, a standard first line drug, and was allergic to it. After that, I flew through the classes of medications, none really working. I specifically remember many of the aminosalicylates; pentasa, asacol, and colazol. I was on and off steroids like prednisone and entecort, as well as steroid suppositories and enemas. Some of the medications I tried, I was part of trials for since they were newer and not used in children. I went from crushing pills and opening capsules, to swallowing 10-15 pills a day. I tried probiotics alongside medications, and diet changes. I have never had surgeries related to IBD, but countless colonoscopies/endoscopies with biopsies, pill capsule studies, and MRIs. Let’s take a trip down memory lane. You said you originally got sick when you were 4 years old. Do you remember how you felt starting elementary school? How do you feel like Crohn’s disease impacted your elementary school years? I don’t remember much of elementary school with it. As said earlier, I remember very specific memories that were impacted by IBD, but not general feelings. I remember not wanting to talk to my first grade classmates, so I pretended to sleep on my moms shoulder. I am sure I did not want to answer questions about my illness, but did not know how to express it. Later in elementary, other symptoms appeared and I remember frequently being stressed about going to the nurse for pills, or leaving for a long time to the bathroom. As you got older and began transitioning to middle school and even high school, how do you feel like Crohn’s impacted your learning and education? Did it? I remember more of this time period than my younger years. Middle school was difficult and I averaged about 50 missed days per school year. This was when I had to get a home tutor to keep up with school work, and really felt stressed about falling behind. I think being sick and not having a lot of control during this time, brought about different anxieties with school. I attempted to gain my control in other areas; I was very diligent about not falling behind in work. I would often stay after even if I understood topics just to make sure I would not fall behind. I think IBD made me work extra hard and brought about a lot of unnecessary stress surrounding my education. Did you have any special accommodations in school, like a 504 plan? If so, do you feel like you benefitted from these accommodations? I did have a 504 from a very young age. I believe it started in late elementary or first year of middle school. I was very indifferent about having it in place. I did not want to feel different and was often anxious about my mom meeting with teachers and “highlighting” my IBD. However, the actual accommodations were extremely helpful and took other anxieties surrounding my illness away. Being able to leave class without questions being asked, extended time on exams to accommodate for bathroom breaks, and unlimited access to water were all super helpful. How do you feel Crohn’s impacted you socially? Any trouble making or keeping friendships? Dating? This is rather difficult, because my anxiety in general made things difficult, and it is hard to say whether that anxiety stemmed from IBD or just on its own. I definitely was very quiet throughout all of my schooling. I was loud and crazy with my select friends, but it took breaking through the shy shell to get to that point. I did have many friends, but it was a tight group of them. I was often anxious around larger groups or more “popular” crowds in school. I was very comfortable with my IBD, mainly from growing up with it, and I think that helped with long-term friendships. I had some friends who would come to my IV infusions, and made a fun day of missing school doing it. Most knew my illness was often focused on poop, and I tried to help lighten the topic around it with humor. As I got older and entered dating relationships in highschool, I found that not hiding it made it easier. If they knew right away, it was not an anxiety-provoking secret. I usually opened up by saying to NOT google it, but let me explain. This did not always work, but I then gave my perspective and could answer questions. Let’s talk mental health. As you were growing up with Crohn’s disease, how was your mental health impacted? What strategies, if any, did you use to cope? I think IBD brought forward many anxieties, that then turned to more of OCD/general anxiety. By losing a lot of my control of my own body at a young age, I gained control elsewhere. I remember being very specific about picking out clothes for school, and if weather changed, I would have full panic attacks about it. Later in middle school, I was often anxious speaking in class or to people that weren’t my friends. I hated a spotlight, which is very unusual for me, and I think that stemmed from the spotlight on me at home and at doctors. In high school, things got even worse. I often went to the counselor at school during classes as my anxiety would spike. I ate with the counselor, and really struggled falling asleep at night. I began seeing a therapist outside of school and later started anxiety medication. Many of my strategies came from my counselor and therapist. I often talked through where I thought the anxiety was coming from, and it was often my fear of being different and not liked. However, I never directly had this experience. I had not been highly bullied, and my friends were supported, but I knew how mean kids could be and struggled so much. Once on medication and years of therapy, I was able to have a lot of coping strategies that are not always needed now. Everyone is different, but I think any chronic illness can bring about anxiety and depression, even if you do not directly see the connection. There are underlying fears and anxieties around the illness that are displayed in different ways, and different coping strategies will be needed. You don’t have to go into details, but at any point as you were growing up, were you embarrassed or ashamed of your IBD? If so, how did you navigate this? Oh gosh yes! This disease is centered around poop. As a teen, this is especially embarrassing. I remember field trips where bathrooms were not readily available and having to awkwardly pull buses full of students off the highway to get to a rest stop. Everyone stared as I ran off the bus to explode. I remember being with my dad at a mall and having a full accident. I ran through the mall with diarrhea running down my legs…and it was my dad that had to buy new things for me. Then there was the bloating, gas, steroids making me fat, etc. I do not think there are any good ways to navigate it, but ways to learn from these things and other’s experiences. I started having my mom drive to field trips as a designated chaperone, but also taking friends in the car with me for more fun. I started carrying extra underwear and pants if I knew places would not have bathrooms close together. I would look up where bathrooms were wherever we were going. Then, as I went to Camp Oasis, I learned from other people’s stories of embarrassment and was in a safe place to express my own and find humor with other people like me. Please give us some details about how you made the transition to college. Did you change where you received medical care for Crohn’s disease? Did you feel like the transition to college was particularly stressful? How did you navigate your newfound independence in relation to your IBD journey? This transition was wild, but I was SO ready to not have my mom control my illness. However, I quickly learned I needed to ask a lot questions. When I went to college, I was also at the point to find an adult GI, so I did transition my care as well. I asked my pedi GI for recommendations, and found one close to my college to go to. This is when I started going to appointments alone, but I liked being able to talk freely and not feel like I needed someone to describe things for me. I also learned a lot by having to take over discussing symptoms; I had to actually say what was going on and ask the questions about medications that my mom usually did. I definitely struggled a lot, but my mom tried to give me as much freedom as possible. I often updated her after appts and got to clarify things that way. There was also a physical and mental health component to the transition. Any big change brings about flare-ups for me, and college was no different. I luckily had Emily as a close friend on campus with me. I could confide in her when I was not well. I quickly tried to make other close friends so that if I had to miss class, I had a friend in each one that knew what was going on and could get notes for me. I had the added stress of adjusting to being away from home, the independence of my managing my schedule, and juggling my illness. I do not think I had a specific way of navigating all of this; I just learned as I went. I knew I wanted my education, and I knew I needed to prioritize my health. I went to as many classes as I could, but I made sure to miss a class or two if I needed to sleep and catch up on rest. With this, I also found friends to study with and learned office hours, so I could clarify things I missed. I did prioritize education and health, so often did not have many social activities going on. I did not party or stay up late, but the friends I found were similar to this and helped me not feel like I was alone in this. Lastly, I had to adjust to food. The food on campus often was not helpful to my IBD. Starting my second year, I got housing with a kitchen and had to get an on-campus job so I could buy some groceries. I found friends to live with that also wanted to cook so that we could split groceries. I was able to cook things that were better for my Crohn’s, and this helped. It was a huge learning curve, but I am so glad I pushed through the flare-ups to figure out my independence. While you were in college, were you able to receive any type of learning accommodations? Did you feel as though Crohn’s disease impacted your education? I did have a continued 504 in college. I was able to adjust things, and it was much more formal/restrictive than in high school. I was able to still get testing accommodations where I would be in a different small group. This allowed me to have extended time and leave for the bathroom during exams. Normally you cannot leave at all, but this helped take that stress away since I had more time and could step out. Knowing this was in place often took the stress away, and made it so I did not need to step out. I don’t think it impacted much of my college education. The professors did not care as much about whether you showed up or not, and I was able to still get notes as friends helped me or they posted lectures online. I think making my own schedule and planning times of rest helped me stay on top of things better. Post college graduation, do you feel like IBD has impacted your career? In what way? I am not really sure on this one. I jumped into the typical nurse schedule of three 12 hour shifts per week, and that was definitely hard. I did not tell my employers during interviews that I had IBD, but that was a personal choice. I did become familiar with sick time policies. I was probably more fatigued from long shifts than others, but my body adjusted and I learned tips and tricks to help. When looking back on your childhood, is there anything that you wished you had done differently in relation to growing up with IBD? Anything you wish you did more of? Anything you feel like you or your family did well? I wish I was not as anxious as I was. When not in school, I was loud and fun, but hid that side. I think this held me back from other friendships I could have made. I always wanted to be carefree, but couldn’t. I am thankful for having IBD, though, because I learned to prioritize myself and my needs. My family was great at making me feel “normal.” Obviously, there were times I wanted them to just stop talking about IBD, but they always found ways to work with my symptoms while still doing outings and trips. This greatly helped with not feeling secluded. Lastly, do you have any advice or words of assurance to give to parents of children recently diagnosed with IBD? Any final thoughts or comments? It is scary and unknown. You will feel that you are losing so much when newly diagnosed, but that does change. Try not to focus on what you child now cannot do, because it is temporary. Once healthy, we can do everything others can, if not more! It is extremely stressful, but we adjust and learn from everything that happens. I think I am more responsible, empathetic, and wise due to having IBD. However, I did not lose the fun side of life; I go on trips, have groups of friends, and find so many good things in life. For final thoughts…just reach out! If you or your child are struggling, you will find someone who has been through similar. I am always here to talk, listen, or give advice. Everyone within IBD Connect is as well! I have lots of first-hand experience and would love to help you navigate this wild journey. This concludes our interview! Randi’s answers to my questions speak for themselves; growing up with IBD can be challenging. It can impact many different areas of your child’s life. Having a solid support system can make a huge difference! If you’re interested in an IBD Connect support group, the link to get more information is linked below. If you have a question or need guidance, you can always email me as well, and I can help you to get connected. My email address is also linked below. It is my hope that you were able to gain something from this interview, whether it be one of Randi’s helpful tips you can implement, laughter from one of her stories, or simply the comfort in the knowledge that there are others who grow up with IBD. As always, feel free to email me with any questions or topics that you want covered in a future blog post. Thank you Randi for a great interview! Stay strong IBD Warriors/IBD Warrior parents! 
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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