Navigating IBD as a Teen
If your teen has just been diagnosed with Crohn’s disease or ulcerative colitis, you likely have a lot of questions.
Learning all you can about your inflammatory bowel disease is the first step toward helping your child living the life they want. We can help by answering some of the most common questions and concerns that teenagers have about living with IBD.
What do teens need to know about IBD?
Let’s talk basics. Inflammatory bowel disease (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.
Your GI tract is responsible for digestion of food, absorption of nutrients, and elimination of waste from your body. The GI tract starts with your mouth and continues down your throat into your esophagus, and through your stomach, small intestine, large intestine, and rectum, ending with your anus. Inflammation caused by IBD makes the affected GI organs work improperly.
Read more about symptoms, causes, and treatments of IBD:
We wrote a Guide for Teens with IBD to answer more questions your teen may have and to help them live well with IBD.
Some important information to remember:
Nothing your child ate or did gave him/her IBD.
Most people who live with IBD are healthy more often than they are sick.
Ask your child’s doctor questions so you and your teen can learn more about managing their IBD.
Encourage your teen to keep working towards their goals. Remember there are successful doctors, lawyers, business people, celebrities, and professional athletes with IBD.
Daily life with IBD
Crohn’s disease and ulcerative colitis affect almost every part of their life, from school and work, to sports and hobbies, to staying healthy. But there are many things you can do as a family to make your teen’s life easier.
The most important thing to remember is that they can accomplish their goals with IBD!
Many people with IBD need to take medication for the rest of their lives.
Their symptoms may range from mild to severe.
They will have times when they have flares with active symptoms.
They will have periods of remission and good health.
What if they forget to take their medication?
It’s important that you they your hardest to take your medication as your doctor prescribed. You can help set them up for success by creating a medication journal, a calendar or an app on their phone to remind them.
Will they be able to go to school, hang out with their friends, or play sports?
Yes. This is a common concern for teens with IBD. They will be able to do many of the same activities they did before. They may need to take certain precautions, however, such as rearranging their plans when they are not feeling well or they are too tired.
Who should they tell about their IBD and how much should they disclose?
The easy answer is that they should tell whoever they want, and as much as they want. But that isn’t always easy for teens to figure out.
Some people will need to know the details, like their school nurse. If they are away from home, maybe at college or summer camp, someone needs to be their healthcare point person that can help your child when their doctor isn’t available. That point person will need to know your child’s history, symptoms, and the emergency care that works.
Other people, like their teachers and their boss, only need to know some details to understand how your teen’s IBD symptoms can affect their daily life.
How will my teen’s IBD affect their education?
Whether it’s middle school, high school, or college, your teen spends a lot of time at school. Because IBD is unpredictable, they will need a backup plan with someone who knows their medical situation and can help you if they have an emergency.
Their IBD and treatments might affect their school attendance or performance. Your teen might have to miss school when they have medical appointments or if they’re not feeling well during a flare. It’s good to remind your teen that they are still responsible for learning the required subject matter. You can help by requesting a 504 plan which is a document that will give your child certain accommodations or special services they may need. This could include extra time to take your tests if they have to go to the bathroom, or getting to take home some of their work during a flare or if they are hospitalized.
Preparing for bathroom accidents
Unfortunately, IBD can be unpredictable. There will be times when your teen’s Crohn’s disease or ulcerative colitis is deep in remission and they feel great. Other times, their symptoms may cause them to have to urgently and immediately use the bathroom.
Help your teen 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 your teen’s emergency supply bag:
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 clothes they can wear until they get home, such as shorts, pants, or leggings
Helping your teen cope with IBD
Your teen’s IBD symptoms may come and go, so you never know when they’re going to become a problem. If they are prepared and your child’s learns to properly care for themselves, these symptoms won’t limit their life.
Remind your teen that that their mental health and emotional well-being are just as important as their physical health. Tell your teen to talk to you, or their doctor or another trusted adult if they are feeling anxious, sad or depressed.
Your teen is more than their IBD. Help them accept their illness, so they can continue to do what they enjoy.
Encourage them to continue the activities they enjoyed before IBD and try something new! They can modify their activities if they have to, so they can participate fully.
Encourage your teen to form friendships with people who understand and support them.
Talk to them about the importance of a regular exercise routine, with their doctor’s approval. Exercise can improve their overall health, reduce stress, and help to maintain and improve bone strength.