living with inflammatory bowel disease: tips and resources for kids and teens

Whether you are a kid or teen recently diagnosed with inflammatory bowel disease (IBD) or a parent looking for guidance, the Inflammatory Bowel Disease Center at Dayton Children's Hospital is here to support you every step of the way. You are not alone, with the right care and information, you can manage your condition effectively and live life to the fullest.

on this page:

• Understanding your IBD diagnosis
• Treatment for IBD
• Mental health and wellness
• Appointments and testing
• Resources and support

understanding your IBD diagnosis

Getting diagnosed with IBD can be overwhelming, but it is important to understand what is happening to your body. IBD is a chronic condition, which means it will be with you for life, but with the right treatment, you can keep it under control and feel well most of the time.

What happens next: After your diagnosis, your care team will work with you to create a treatment plan that is just for you. This plan is designed to manage your symptoms and keep your IBD in remission, which means you feel better and don't have signs of inflammation. You will also be offered a teaching visit, where multiple team members will introduce themselves, share their roles and ensure you can contact them.

Managing expectations: Living with IBD means learning to manage your condition every day. Some days will be easier than others, and that's okay. The important thing is to stick to your treatment plan, keep track of your symptoms and communicate with your care team if anything changes.

treatment for IBD

There are a variety of treatments for IBD including medications, nutrition therapy and surgery.

It is important to follow your agreed-upon treatment plan. Even if you start to feel better, don't stop taking your medicine unless your gastroenterologist says it is okay. Stopping treatment too soon can cause active disease, which is when your symptoms come back or get worse. Stopping treatment can also cause the medication to not work a second time.

Since there is no cure for IBD, the goal of treatment is remission. Remission means you feel good and your body shows no signs of inflammation. The best way to achieve and maintain remission is to stick to your treatment plan - this is called adherence.

medications

There are four major categories of IBD medication:

1. Biologics and biosimilars (infliximab, adalimumab)
2. Immunomodulators (Methotrexate, 6-mp)
3. Corticosteroids (prednisone, budesonide)
4. Topicals (Aminosalicylates like 5-ASA, mesalamine)

Each medication category works in different ways to decrease inflammation.

Here are some ways to help you follow your treatment plan and stay consistent with your medications/therapies:

• Keep a list: Write down the name, dosage and side effects of medications/therapies.
• Set reminders: Use your phone to set alarms for when you need to take your medication.
• Use an app: There are apps that can help you track your medications and therapies.
• Mark your calendar: Keep track of when your next dose is due using a calendar.
• Use a pill box: Many pharmacies can supply a pill box with a separate section for each day.

diet and nutrition therapy

• Balanced diet:
  • Use the MyPlate method to ensure balanced nutrition.
  • Eat a meal or a snack every few hours, incorporating a variety of food groups.
• Vitamin supplements:
  • IBD may affect nutrition absorption, so you might need to take a multivitamin or specific supplements like Vitamin D or folic acid.
• Hydration:
  • Drink plenty of fluids, especially water, to stay hydrated.
  • Consult your care team about your specific fluid needs.

Depending on your growth and nutrition status, your care team may also suggest nutrition shakes to help boost your intake of calories, protein, and essential vitamins and minerals.

nutrition support

Sometimes, you might need extra nutrition support if you are not able to get enough calories and fluids through eating and drinking.

There are two ways to receive this support:

• Enteral nutrition: A flexible tube is placed through your nose into your stomach or small intestine to deliver a nutrition supplement.
• Parenteral nutrition (TPN): Nutrients- are delivered directly into your bloodstream through an IV when enteral nutrition isn't possible.

eating during a period of active disease

When your IBD is active, certain foods might make your symptoms worse - these are called trigger foods. Every person is different, so it's helpful to keep a food symptom journal to track what you eat and how it affects you.

• If you are experiencing active disease, try eating foods that are easier on your stomach, like:
  • Refined grains: White bread, white rice and pasta
  • Soft, bland foods: Applesauce, bananas and mashed potatoes
  • Lower fiber fruits: Melons, peaches and peeled apples
  • Lean meats: Chicken, turkey and fish
  • Cooked vegetables: Without skins or seeds
• Avoid foods that can cause cramping, bloating and diarrhea during a period of active disease, such as:
  • Greasy, fried foods
  • High-lactose foods: Milk, ice cream and some cheese
  • Whole grains: Wheat bread, brown rice and oatmeal
  • Raw vegetables
  • Spicy foods
  • Caffeinated foods or beverages

surgery

Each patient is different. Some patients may never need surgery, while others may need it right after diagnosis. This is a decision that patients, families and providers should make together. This is called shared decision-making.

should I have IBD surgery?

Adapted from a teen's social media post, Becky shares an open letter to her ostomy and how it has changed her life.

should I have IBD surgery tool

The "IBD Surgery Shared Decision-Making Toolkit"  assesses readiness for IBD surgery by asking a series of questions about the child's disease, treatment options and concerns about surgery. This tool was co-designed by experts from pediatric gastroenterology, surgery, psychology, parents and patients from Dayton Children's.

IBD Decision Support tool

Learn how to use the IBD Decision Support tool

mental health and wellness

Inflammatory bowel disease in pediatric patients can significantly impact mental health and can lead to increased rates of depression and anxiety. The chronic nature of IBD, paired with the stress of managing a lifelong illness, frequent medical appointments, and the potential for social isolation due to symptoms, can severely affect a child's psychological well-being. Early and routine screening for depression and anxiety is crucial because it enables timely intervention, which can improve overall quality of life, treatment adherence and disease outcomes. Addressing mental health alongside physical health in pediatric IBD patients fosters a holistic approach to care that supports both emotional well-being and medical stability.

If you are having difficulties with adjustment, it is important to know that it is normal to have some difficulty adapting to life with a chronic illness. Learning to cope with IBD often gets easier with time, but it is very reasonable to need some help adjusting. Often parents can be a great source of comfort and help. Other times kids find that talking with close friends or joining a support group is just what they need. Speaking with a psychologist who specializes in working with children dealing with chronic illness might also be helpful, as they can provide you with specific tools for coping during this time. Please talk to your care team if you are interested in mental health services.

appointments and testing

IBD teaching visits: When first diagnosed, you will be offered a teaching visit where multiple team members will introduce themselves, share their roles, and help you understand next steps. We also ensure you have all the resources needed to be successful in the agreed-upon treatment plan. Healthcare professionals at this visit may include:

• Nurse
• Dietitian
• Medical social worker
• Physician
• Psychologist

Routine visits: You will have regular check-ups with your IBD provider 2 to 3 times a year, more if needed. Routine visits help make sure your treatment is working and see if any changes are needed. During these visits, you can also meet with other members of your care team (listed above and below).

Second opinion visits: If you have questions about your diagnosis or treatment, need other options or would like the reassurance of having a gastroenterologist who specializes in the treatment of IBD review your child's case, a second opinion visit could be for you. During a second opinion visit, all your history and results will be reviewed by one of our experts in IBD, Dr. Saeed and Dr. Sandberg. They can order additional testing, solicit further expert consults in pediatric surgery or other subspecialties, and provide a comprehensive opinion on the best options for you. Both physicians have created national guidelines and hold national roles in ImproveCareNow, an international quality improvement learning collaborative focused on children and teens with IBD. Patients and families throughout Ohio and surrounding states seek second opinions at Dayton Children's.

Annual visits: Once a year, you will have a longer appointment with a nurse practitioner (NP) and other members of your care team. This visit, which lasts about 90 minutes, is a patient-centered visit that provides consistent health maintenance recommendations and consideration for other impacts on overall health not routinely covered at your scheduled GI visits.

During your annual visit, you might also meet with a(n):

• Nurse
• Nurse practitioner
• Dietitian
• Medical social worker
• Physician
• Psychologist
• Office coordinator
• Research coordinator

Major areas discussed at the annual visit are:

1. Health maintenance: Immunizations, flu shots, bone and eye health
2. Medications and adherence: Making sure you are following your treatment plan
3. Self-management: Learning how to take care of your IBD
4. Social needs and school plans: Reviewing your 504 education plan, transportation, food and other needs
5. Mental health wellness: Screening for anxiety and depression
6. Transition to adult GI care: Planning for your future care
7. Financial assessment: Screening for financial need

Testing and labs: Another regular part of IBD care is testing and labs. Testing is important so we can see what parts of your body are affected and how we can treat you. We also test to see if you have active disease and to watch for side effects of any medicines you are taking. You will get these results in MyKidsChart, or you may get a phone call with the results and your provider's recommendations.

resources and support

As an IBD patient at Dayton Children’s Hospital, you can access all the education and information you need from our IBD resource center. Here you can find answers to questions about insurance and financial assistance, downloadable tracking sheets, links to support groups and more.