Your child has been diagnosed with irritable bowel disease (IBD), and you have been thrust into the chaotic world of healthcare. You’ve met with pediatricians, pediatric gastroenterologists, surgeons, medical receptionists, registered dieticians, and many other professional healthcare workers. In each medical facility that you’ve visited with your child, there always seems to be a nurse. You may have wondered about the role of the registered nurse. What exactly do nurses do? How is a nurse different from a certified nurse assistant or medical assistant? Why is there always a nurse around? While the roles and responsibilities of many healthcare professionals, including surgeons or registered dieticians for example, are generally well understood, the role of a nurse is sometimes underestimated or overlooked. However, the support and care provided by nurses is essential and plays a significant role in the management and treatment of children with IBD. In this post, we will discuss the various medical facilities where you and your child with IBD may encounter a registered nurse, as well as the roles and responsibilities of the nurse in each of these settings. After reading this page, it is my hope that you gain a more thorough understanding of the significant contribution that nurses make to patient and family-centered care. Embracing a good nurse’s support can lead to a more empowered and informed experience for you and your child with IBD!
Before we begin, please note that this page is not intended to be 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. Additionally, please note that for the purposes of this blog, I will be writing largely from my personal experiences working as a registered nurse. While I have worked in a variety of different settings, I have not worked in each type of facility that will be discussed in this post. If you have any questions about the information that is covered, feel free to email me or check out the links at the bottom of the page to learn more about how to become involved with an IBD Connect support group. Now, let’s dive into the content!
What is a Registered Nurse?
Modern-day nursing looks very different from its beginnings in the mid-19th century, where nurses were often viewed as assistants to doctors. Today, nursing is a professional career and one that comes with its own education, skillset, and opportunities for specializations and career advancement. A registered nurse undergoes comprehensive education, often earning a bachelor's degree, before successfully passing a licensure examination to obtain a professional license. Once licensed, nurses can pursue employment in a diverse array of settings, ranging from hospitals and clinics to nursing homes, schools, community centers, patients' homes, and aboard cruise ships, among many others. Based upon their work environment and the needs of their patient demographic, nurses have the option to pursue advanced education, enabling them to specialize in various areas such as pediatrics, geriatrics, mental health, critical care, and more. Moreover, nurses can opt for further degree programs, propelling them into the role of advanced practice registered nurses. Included in this category are nurses who function very similarly to medical doctors, with the ability to diagnose medical conditions and prescribe medications and treatment.
In short, nurses are trained professionals who provide a wide range of services amongst many different settings and patient population. These services can include:
Where Might You See a Registered Nurse?
Hospitals: Hospitals serve as a crucial setting for IBD patients, especially during acute flare-ups or severe disease exacerbations. Nurses in this environment are often the primary caregivers, responsible for closely monitoring patients' vital signs, administering medications, and providing emotional support during vulnerable moments. In the hospital, your child’s nurse will be your go-to point of contact for any questions or concerns you may have. He or she will act as the coordinator amongst the different healthcare disciplines. If you would like to speak to your child’s doctor, your child’s nurse will be able to ask the doctor to stop by your room. If you would like to speak with a registered dietician, your child’s nurse is the person to ask! Nurses in the hospital setting collaborate closely with physicians and other healthcare professionals assigned to your child’s medical team, ensuring that your child receives timely and effective treatment and care. Nurses act as patient and family member advocates, communicating patients' needs and parental concerns to the medical team, thereby facilitating comprehensive and patient/family-centered care. To help with the responsibilities that the nurse has for each of her patients, sometimes a certified nursing assistant is able to help with patient vital signs, meal delivery, bathing, and other tasks that do not require advanced medical knowledge. This helps explains why there always seems to be several people in and out of your child’s room!
Clinics and Outpatient Centers: You will encounter nurses with your child’s primary care doctor, gastroenterologist’s office, outpatient colonoscopy settings, and outpatient infusion settings. In all of these outpatient settings, nurses can educate patients about disease management, including medication adherence, dietary modifications, and the importance of regular follow-ups. They also provide emotional support and address patient and parental concerns, fostering a sense of trust and understanding that is vital for effective disease management. If your child needs an outpatient colonoscopy, a nurse will be the one to place the IV in your child’s arm or draw bloodwork! If your child is going to an infusion clinic for IV medication administration, a nurse is the one to start the IV medication and assess for medication reactions. Sometimes, outpatient settings will utilize medical assistants. Medical assistants are able to take vital signs, measure your child’s growth, and ask you or your child some basic questions to collect information. Often times, medical assistants are confused for nurses in these settings!
School: If your child is attending school, chances are you are familiar with their school nurse. For children managing IBD, the school environment can present unique challenges that require specialized care and support. In this setting, the school nurse serves as a dedicated ally, playing a pivotal role in ensuring the well-being and academic success of your child. The school nurse can help to manage and administer any necessary medications during the school day, take action and provide medical intervention in an emergency situation, and assist in creating and implementing a 504 plan or a similar equivalent.
Home Healthcare: Potentially the most common reason for a home healthcare nurse for a pediatric IBD patient is IV medication administration. Home healthcare nurses provide this essential service in the comfort of your family’s home. Additionally, home healthcare nurses can help educate patients and their families on how to manage symptoms effectively, emphasizing the significance of a healthy lifestyle, stress management, and regular exercise in controlling the disease. Home healthcare nurses serve as a dependable source of guidance and support, empowering your child to maintain their independence and quality of life.
Community Health Centers: Nurses in community health centers focus on promoting overall wellness and preventive care for IBD patients within the local community. They organize health screenings to detect early signs of disease exacerbation, offer counseling on lifestyle modifications to alleviate symptoms, and provide guidance on nutritional choices that can help alleviate discomfort associated with IBD. Furthermore, these nurses play a vital role in organizing support groups and educational workshops, creating a sense of community and understanding among patients coping with similar challenges. They collaborate with local organizations and advocacy groups to raise awareness about IBD, debunk common misconceptions, and ensure that patients and family members have access to the necessary resources and support networks.
Telehealth Services: In the era of digital healthcare, nurses are increasingly utilizing telehealth services to provide remote care and support to IBD patients. Through virtual consultations, nurses can assess symptoms, provide education on disease management, and offer guidance on medication adjustments. They use telemonitoring devices to track patients' vital signs and disease progression, allowing for early intervention and prevention of complications. Moreover, nurses utilize telehealth platforms to conduct follow-up appointments, discuss treatment plans, and address any concerns or questions that patients may have. Telehealth services not only enhance the accessibility of care for IBD patients, particularly those residing in remote or underserved areas, but also foster a continuous connection between patients and healthcare providers, promoting a sense of reassurance and support.
Wound, Ostomy, and Continence Nurses
As mentioned previously, registered nurses are able to pursue additional educational opportunities and specializations depending on the setting in which they work, the patient population they are working with, and their clinical interests. One such certification is a wound, ostomy, and continence certification. Most major hospitals have at least one “wound nurse,” a nurse that possess specialized knowledge and skills in managing and caring for several different types of wounds. These nurses also have the ability to do additional education in continence-related skin issues and ostomy application, management, and complications. If your child has an ostomy, chances are you’ve worked with a few of these nurses! Wound nurses play a pivotal role in educating pediatric IBD patients and their family members about proper ostomy bag maintenance, including changing the bag, ensuring a proper seal, and maintaining skin integrity around the stoma. They provide patients and caregivers with in-depth training on how to handle and empty the ostomy bag, as well as guidance on selecting appropriate ostomy supplies that best suit the patient's individual needs and lifestyle. If any skin-related complications related to your child’s stoma arise, wound nurses are able to assess the area and implement proper protocols for treatment. Although many wound care nurses are found in the hospital, you can also encounter wound care nurses in outpatient and home settings.
Advanced Practice Registered Nurses
There are several different types of advanced practice registered nurses, or APRNs, including: family nurse practitioners, acute care nurse practitioners, certified nurse midwives, and certified nurse anesthetist amongst others. These nurses have either a Master’s or Doctorate Degree in their specialty, and have many of the same responsibilities as medical doctor’s or physicians assistants in their respective field. You probably have already encountered a few APRNs! A certified nurse anesthetist may be the provider ordering sedative medication for your child’s colonoscopy. An acute care nurse practitioner specializing in gastroenterology may be ordering your child medications in the hospital. A family nurse practitioner could be your child’s primary care provider.
Hopefully, the information on this page serves to give you a more thorough understanding of the different roles and responsibilities that registered nurses may have in the care and management of IBD. A nurse can work in various medical settings and within several different specialties. The profession of nursing embodies adaptability, compassion, and a relentless commitment to serving others. Nurses are not only caregivers but also advocates, educators, and innovators who continuously strive to make a positive impact on the lives of individuals and communities. Their resilience, flexibility, and dedication solidify their position as the backbone of the healthcare system, fostering a culture of healing, empathy, and hope that transcends the boundaries of medicine and touches the lives of all those they serve. Nurses, as are all other members of your child's heatlhcare team, are incredibly important in the management and care of those with IBD!
As we wrap up, if you would like more information or support, feel free to email me or contact another member of the IBD Connect team through our main website. My email address is linked below. If you are interested in connecting with a support group, feel free to click the link below for more information! Stay strong IBD Warrior families and if you have a chance, thank a nurse!
Hello IBD Warrior families! Today’s blog post will differ slightly from recent IBD Connect blog content. Whereas previous posts have taken a purely educational approach or were structured in an interview format, this blog post will largely focus on providing more information about IBD Connect’s annual Running in Place 5K event scheduled for tomorrow, October 7th, 2023. For those of you have attended in past years, you are aware that physical activity is a major component of this event. Registered teams can choose to walk, run, or kayak a canal trail. However, have you ever wondered what the role of exercise is to an IBD patient? Do the same rules apply to an IBD patient as the general population? Is exercise still a good thing for your child if he or she is diagnosed with IBD? Can exercise ever be harmful to the IBD patient? These are all questions that this post will aim to explore. By reading this page, it is my hope that you are able to gain an enhanced understanding of how an IBD patient can achieve an active lifestyle, as well as glean practical applications to carry out this vision in your child’s daily life.
Before we begin, please note that this page is not intended to be 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 or exercise goals/limitations, please seek out the professional medical advice of your child’s doctor or healthcare team. Additionally, please note that this page cannot be a substitution or a replacement for the advice of a personal trainer or fitness instructor. If you or your child would like to seek the advice of a personal trainer or fitness instructor, please understand that it is best to communicate with your child’s doctor for approval of any fitness goals or plans. Additionally, remember that you can always reach out to a member of the IBD Connect team or other parents of children with IBD for more information or support in this area. If you would like more to learn more about how to connect with a support group, feel free to email me or check out the links at the bottom of this post. Now, let’s dive into the content!
Running in Place 5K Event Information
Undoubtedly, most readers are aware that the upcoming Running in Place 5K event is IBD Connect’s most highly anticipated, top fundraiser event of the year. Amazingly, this year marks the fifth one! If you already have a thorough understanding of what this event entails, please feel free to skip over this section of the post. However, if you would like more details about this event, please containing reading below.
Where: Blackstone Valley Heritage Park (287 Oak Street Uxbridge, MA 01569).
When: Registration opens at 10 AM, and the event kick-off is 11 AM.
What: This location is home to a nature trail that runs alongside a canal. There is also a sizable open grassy area. At 11 AM, all teams that have registered for the event can choose to walk, run, or kayak the canal trail, essentially completing a 5K. Teams that have joined through our event website have been helping to fundraise for the event for several weeks, with the opportunity to earn a variety of prizes at certain set fundraising benchmarks. Although the 5K is the main event, in the open grassy area, there will be several activities, including: an obstacle course, a pumpkin painting contest, lawn games, and more. There will also be several speakers, including last year’s top fundraising team, that will have the opportunity to share their personal stories of how IBD has impacted them. Additionally, prizes will be awarded at the event for the top fundraising team, the team that demonstrates the best sportsmanship, and the team with the best outfits. Last, but certainly not least, there will be plenty of food!
Why: All proceeds from the event will go directly to raising IBD awareness, financially supporting families in crisis, and funding educational materials for support group members and newly diagnosed IBD patients. We also like to have fun!
General Guidelines for Physical Activity in a Healthy Individual
As previously discussed, physical activity is a crucial element of our upcoming Running in Place 5K event. Before we dive into the specifics regarding how physical activity can impact IBD and vice versa, it is important to discuss the benefits of physical activity, as well as the current exercise recommendations, for the average, undiagnosed individual. Physical activity is undoubtedly a cornerstone of an active, healthy lifestyle, providing numerous benefits for our bodies and minds. Regular exercise can help manage weight, reduce the risk of chronic diseases like heart disease and diabetes, strengthen bones and muscles, and improve overall physical health. Exercise has also been shown to improve mental health, lessening symptoms of depression and anxiety and promoting the release of endorphins, which can enhance mood and reduce stress. Staying active enhances daily functioning, increases energy levels, and fosters better sleep, leading to an improved quality of life. Essentially, the benefits of exercise are numerous, and this list is by no means exhaustive. To guide healthy individuals in achieving and maintaining optimal health through exercise, the Centers for Disease Control and Prevention (2022) offers comprehensive physical activity recommendations, which can be found here: https://www.cdc.gov/physicalactivity/index.html. It is important to note that these recommendations are curated specifically for the healthy individual.
CDC Physical Activity Recommendations for Children and Adolescents:
Children and adolescents aged 6-17 should aim for at least 60 minutes of moderate-to-vigorous-intensity aerobic activity daily. This should include activities such as walking, running, or anything that makes the heart beat faster! Children in this age range should also include muscle-strengthening activities, such as push-ups or climbing, at least three days a week, as well as activities that promote bone health, like jumping and running, at least three days a week. Children ages 3-5 should be physically active throughout the day. Parents and caregivers should incorporate and encourage active play.
CDC Physical Activity Recommendations for Adults:
Although this blog post is geared primarily to parents of children with IBD, I am also including the adult recommendations for any curious adult readers! Adults should aim for at least 150 minutes of moderate-intensity aerobic activity or 75 minutes of vigorous-intensity aerobic activity per week. This can be broken down into shorter sessions throughout the week, or you may decide to do an equivalent mix of moderate-and vigorous-intensity aerobic activity throughout the week. In addition to aerobic activity, adults should engage in muscle-strengthening activities for all major muscle groups on two or more days per week. Adults, especially older adults, should also incorporate balance and flexibility exercises to reduce the risk of falls.
For more information on the CDC’s physical activities guidelines, feel free to check out their website linked above. This is also a great resource for determining what types of exercise and activities constitute moderate-intensity aerobic, vigorous-intensity aerobic, muscle-strengthening, and bone strengthening exercise. A list of suggested age-appropriate activities is even provided for each type of exercise! For more information, please see https://www.cdc.gov/physicalactivity/basics/children/what_counts.htm.
IBD and Physical Activity: The Research
Unfortunately, the research is not very clear on the specifics of how exercise can impact an individual with IBD. One recent study found that moderate-intensity exercise is generally considered safe and beneficial for those with non-severe disease (Engels, Cross, & Long, 2017). This theory is widely echoed in several other research studies, as well as by the Crohn’s and Colitis Foundation (https://www.crohnscolitisfoundation.org/campus-connection/navigating-college/exercise). There is evidence to suggest that regular, moderate-intensity exercise is associated with an increased length of remission and a decreased risk of future active disease and flare-ups (Jones et al., 2015). This may be because regular exercise has been shown to reduce stress levels, and higher amounts of stress are associated with periods of flare. Additionally, regular exercise has some added benefits to the diagnosed individual with non-severe disease, such as improving immunological response, strengthening bone density/health, reversing the decrease of muscle mass/strength, lowering the risk of colon cancer, enhancing mood, and improving digestive function. Overall, the research varies widely, but in general, it is believed that moderate-intensity exercise is beneficial for an individual with well-controlled IBD. More research is definitely needed to provide specific recommendations regarding the ideal intensity, frequency, and type of exercise for this population.
Keeping this in mind, the safety and effectiveness of higher-intensity exercise for those with severely active disease are uncertain (Engels, Cross, & Long, 2017). In general, the guidelines for exercise differ during periods of disease exacerbation. During these times, it is best to consult your child’s doctor to determine the best course of action. Often times, this will include rest and a pause on higher-intensity exercise.
How to Approach Physical Activity with Your Child: Tips and Recommendation
Having an understanding of the current exercise recommendations for a healthy individual, as well as the latest research on exercise and IBD, is important to determine how to best approach exercise with your diagnosed child. What should your child be doing in terms of physical activity? How do you prepare and teach your child to exercise as an adult? What does a healthy relationship with exercise look like for a child with IBD? How do you start to implement exercise in your household?
Tip #1: Consult with your child’s healthcare provider. This is by far the most important tip! Before starting an exercise routine for your child with IBD, it’s crucial to consult with their healthcare team. They can provide insights into your child’s specific condition and relay any recommendations or limitations your child may have for safe physical activity.
Tip #2: Be aware of your child’s severity of disease. Is your child in flare? Is your child going through a period of disease exacerbation? Or is your child in remission or only having mild symptoms? Overall, the research on IBD and exercise seems to indicate that the recommended durations of moderate-intensity exercise can provide an IBD patient with several benefits, most notably increasing length of remission and improving overall IBD symptoms. However, higher intensity physical activity during periods of increased symptoms or while in flare may exacerbate IBD symptoms and contribute to longer recovery times. During these times, it may be best to rest and allow the body to recover. As mentioned previously, there is so much more research needed in this area! Keep in mind that activity levels or exercise goals for a child/adolescent will differ depending on the severity of your child’s disease.
Tip #3: Know what constitutes moderate-intensity physical activity for children and adolescents. The CDC (2022) defines moderate-intensity activity as a 5 or 6 on a scale of 0-10, where 0 is equivalent to sitting, and 10 is equivalent to the highest level of activity. With moderate-intensity activity, the heart will beat faster and breathing will be more challenging. Some examples of moderate aerobic level physical activity for children are brisk walking, bicycle riding on mainly flat surfaces, and throwing and catching a baseball. For adolescents, this could be also be house or yard work, or recreational activities, such as kayaking or hiking. For more examples of moderate level exercise or for examples of muscle strengthening and bone strengthening activities for each age group, please refer to the CDC website. https://www.cdc.gov/physicalactivity/basics/children/what_counts.htm Remember, the CDC suggests at least 60 minutes of moderate level aerobic activity daily for children and adolescents, as well as muscle strengthening and bone strengthening exercises three times weekly.
Tip #4: If your child is just starting to become physically active, choose suitable activities and make it fun! Select activities that are age-appropriate and align with your child's interests. Keep in mind that not all exercises are suitable for every child with IBD. Low-impact activities like walking, swimming, and gentle yoga are often good choices to start with. Exercise should be enjoyable for children. Incorporate games, music, or activities they love to keep them engaged and motivated.
Tip #5: Monitor symptoms. Teach your child to listen to their body. Encourage them to pay attention to how they feel during and after exercise. If they experience pain, discomfort, or a worsening of IBD symptoms, it's essential to stop the activity and consult with a healthcare professional.
Tip #6: Monitor nutrition. Nutrition plays a vital role in managing IBD. Ensure your child eats a balanced diet that provides the necessary nutrients for energy and muscle recovery. Consult with a dietitian if needed to create a suitable meal plan.
Tip #7: Provide encouragement and support. Praise your child's efforts and celebrate their achievements, no matter how small. Be their biggest cheerleader and offer emotional support to help them stay motivated. Teach your child to view physical activity positively, but also encourage periods of rest and recovery if symptoms increase. It’s a balance!
Hopefully, the information on this page provided you with new insights into the research being conducted on IBD and exercise, as well gave you a little more confidence in your ability to encourage your child to pursue a healthy relationship with physical activity. Remember to always keep the lines of communication open with your child, so they feel comfortable discussing their feelings, concerns, and questions about exercise with you. If you would like more information or support, feel free to email me or contact another member of the IBD Connect team through our main website. My email address is linked below. If you are interested in connecting with a support group to discuss topics like this one more thoroughly and gain some practical insight, feel free to click the link below for more information! Stay strong IBD Warrior families, and we hope to see you tomorrow at our annual Running in Place 5K event!
Centers for Disease Control and Prevention. (2022, May 20). Physical activity. Centers for Disease Control and Prevention. https://www.cdc.gov/physicalactivity/index.html
Crohn’s & Colitis Foundation. (n.d.). https://www.crohnscolitisfoundation.org/campus-connection/navigating-college/exercise
Engels, M., Cross, R., & Long, M. (2017). Exercise in patients with inflammatory bowel diseases: Current perspectives. Clinical and Experimental Gastroenterology, Volume 11, 1–11. https://doi.org/10.2147/ceg.s120816
Jones, P. D., Kappelman, M. D., Martin, C. F., Chen, W., Sandler, R. S., & Long, M. D. (2015). Exercise decreases risk of future active disease in patients with inflammatory bowel disease in remission. Inflammatory Bowel Diseases, 21(5), 1063–1071. https://doi.org/10.1097/mib.0000000000000333
IBD Connect's Running in Place Event Website
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!