Planning with Your Child

If your child or loved one has just been diagnosed with Crohn’s disease or ulcerative colitis, you likely have a lot of questions. Guiding Them Through diagnosis and management of their Crohn’s disease or ulcerative colitis can be an overwhelming task.


Learning all you can about inflammatory bowel disease (IBD) is the first step toward helping them live the life they want. The best way to help them manage their IBD is for you both to be prepared and informed. We can help you start and continue the conversation with your child or loved one, the school system and your employer. 

Talking to them about IBD

Helping your pediatric patient understand what it means to be diagnosed with a chronic illness is never easy, especially when you are processing your own feelings and concerns. The best approach is honesty so that they will grow to manage their IBD with independence and confidence.


Younger children will need more day-to-day assistance managing their IBD, but teenagers and young adults can start taking responsibility from the start, with your guidance. 

What do children and teens need to know about IBD?

It’s best to inform them about their IBD and continue to keep them informed as they get older. Here are some basics you can start with: 

  • IBD is a chronic, lifelong disease that causes inflammation of the gastrointestinal (GI) tract. The two main types of IBD are Crohn’s disease and ulcerative colitis.

  • The GI tract is responsible for digestion of food, absorption of nutrients, and elimination of waste from the body. The GI tract starts at the mouth and continues down the throat to the esophagus, stomach, small intestine, large intestine, ending in the rectum.

  • The inflammation in the GI tract from IBD causes symptoms and flares.

Some important information to remind them:

  • Nothing they ate or did gave them IBD.

  • Most people who live with IBD are healthy more often than they are sick.

  • Keep working towards their goals, and they can live fulfilling lives with IBD. There are successful doctors, lawyers, business people, celebrities, and professional athletes with IBD.

Preparing for bathroom accidents

Unfortunately, IBD can be unpredictable. There will be times when your child’s IBD is under control and they feel great. Other times, their symptoms may cause them to have to urgently and immediately use the bathroom. Help them stay prepared with some emergency bathroom supplies. They should carry the basics in a small bag or a backpack.

Here are a few things to consider for an emergency supply bag:

  • Toilet paper

  • Wet wipes

  • Hand sanitizer

  • Small can of air freshener

  • Disposable gloves, to handle any soiled clothes

  • Large-sized freezer bags to store the soiled clothes until they get home

  • Clean underwear

  • Clean clothes they can wear until they get home, such as shorts, pants, or leggings

Helping them with treatments

Swallowing pills, getting injections, or sitting for intravenous transfusions can be difficult. We recommend that you: 

  • Talk to them about the importance of taking their medication on time. Talk about their favorite sports or hobbies and how their medication makes it possible for them to continue to enjoy those things.

  • Consider making a family calendar with medications and times marked on each day so that everyone is working together.

  • Work with them on their awareness of how the medication makes them feel. Does the medication help them feel better or about the same? Are they experiencing side effects? You can use this information to communicate more effectively with their healthcare providers.

Juggling Work and their Medical Care

It can be difficult to balance your career and your child or loved one’s medical needs. As a caregiver, it is likely that you will need at least some absences during the year to care for them.

Common reasons for absences from work include:

  • Hospitalizations

  • Surgery

  • Treatments

  • Flares

To avoid facing consequences at work, or even losing your job, you can take leave under the Family and Medical Leave Act (FMLA).

FMLA Basics

  • The FMLA provides up to 12 weeks of unpaid leave in a 12-month period for employees at companies with 50 or more employees.

  • Certain states have less restrictive laws, providing FMLA leave for smaller employers and/or for longer periods of time.

  • You must request FMLA leave in writing and in advance, and include a note from your loved one’s healthcare provider. You do not have to wait for a crisis before requesting FMLA leave. We recommend you request FMLA leave at the beginning of each year on the basis that you are the caregiver for someone with a chronic, often debilitating, illness and some absences are to be expected during the year.

  • FMLA is generally unpaid leave. Your employer can require that you apply your paid vacation and sick time to your FMLA leave.

  • Once you have FMLA leave, you cannot be fired for using it, as long as you do not use more than 12 weeks of leave each year.

  • The specialists in our IBD Help Center can answer questions and provide guidance on FMLA.

Helping them transition through the phases of care

Depending on your loved one’s age and understanding, they may need a different level of support with self-management of IBD. The earlier you help them learn how to manage and take ownership of their IBD, the easier it will be for them to transition to independence as a teen and young adult. Self management plans can be used to teach them to complete tasks on their own by taking an active role in planning around their IBD and monitoring how they are feeling. The key components of self management include setting goals, monitoring behavior, and evaluating progress.


Some important skills your loved one should start working toward building include:

  • Describing their disease
  • Naming their medication, doses, and side effects
  • Taking medications independently
  • Understanding the risk of not staying on track with their medication plan 


Video Length 01:09:45

Transitioning through the stages of IBD care: Tips for teens and young adults


Helpful Resources For Parents:

Helpful Resources for children and teens: