If your teen has been diagnosed with an inflammatory bowel disease (IBD), you know it affects school, sports, family time and more. It’s important to remember there are many things you can do to make your child’s life easier. First, make sure your teen understands the diagnosis.
“Inflammatory bowel disease is a chronic, lifelong disease that causes inflammation of the gastrointestinal (GI) tract and is usually diagnosed between the ages of 15 to 30,” says Dr. Michael Yaffe, a pediatric gastroenterologist at SSM Health. “The two main types of IBD are Crohn’s disease and ulcerative colitis. Nothing your child ate or did gave him or her IBD and the good news is most people who live with IBD are healthy more often than they are sick. It may be encouraging for your child to know there are successful people, even professional athletes, with IBD so this diagnosis does not mean a person can’t achieve goals in life or be very physically active.”
Your gastrointestinal (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.
Crohn’s disease causes chronic inflammation of the gastrointestinal tract. Ulcerative colitis is a chronic disease of the large intestine, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers. This condition is the result of your immune system’s overactive response.
“Both ulcerative colitis and Crohn's disease are characterized by diarrhea, rectal bleeding, abdominal pain, fatigue and weight loss,” says Dr. Yaffe. “Many people with IBD need to take medication for the rest of their lives and their symptoms may range from mild to severe. They’ll have times when they have flares with active symptoms and then they’ll have periods of remission and good health.”
The Crohn’s & Colitis Foundation created a Guide for Teens with IBD and offers the following answers to common questions:
What if my teen forgets to take medication?
It’s important that your teen takes medication as the doctor prescribed. A calendar reminder or a medication reminder app on your child’s phone can help.
Will my teen be able to go to school, hang out with friends, or play sports?
Your teen will be able to do many of the same activities as before. However, plans may be rearranged when your child is not feeling well or is too tired.
Who should my teen tell about the diagnosis IBD?
The easy answer is that your child should tell whomever he or she would like. Some people, like the school nurse, will need to know the details. If your teen is at college or summer camp, someone needs to be the healthcare point person who can help when your doctor isn’t available. That point person will need to know the history, symptoms, and the emergency care that works.
Other people, like a teacher or a manager, only need to know some details to understand how your teen’s IBD symptoms can affect daily life.
How will IBD affect my child’s education?
Whether it’s middle school, high school, or college, your teen spends a lot of time at school. Because IBD is unpredictable, make a backup plan with someone who knows the medical situation and can help in an emergency.
IBD and treatments might affect school attendance or performance. Missing school may be necessary when your teen is not feeling well during a flare or for medical appointments. It’s good to remind your child that he or she is still responsible for learning the required subject matter. You can help by requesting a 504 plan which is a document that will give your teen certain accommodations or special services. This could include extra time to take tests if your child has to go to the bathroom or getting to take work home.
Preparing for bathroom accidents
There will be times when your child’s IBD is deep in remission and he or she feels great. Other times, symptoms may create the urgent need to use the bathroom. Your teen can stay prepared with some emergency bathroom supplies carried in a small bag or a backpack. Consider these items:
- Toilet paper
- Wet wipes
- Powder
- Hand sanitizer
- Small can of air freshener
- Disposable gloves to handle any soiled clothes
- Large-sized freezer bags to store the soiled clothes until you get home
- Clean underwear
- Clean clothes you can wear until you get home, such as shorts, pants, or leggings
Coping with IBD
Your child may feel sad, anxious or depressed about the IBD diagnosis. If so, it would be good to encourage him or her to talk to you, a counselor or another trusted adult.
Remind your child that he or she is more than IBD and can continue to do enjoyable things. It’s important to continue the activities enjoyed before IBD or try something new. Activities can be modified so your teen can fully participate. Encourage your child to choose understanding, supportive friends. Also, it may be helpful to get into a regular exercise routine, with the doctor’s approval, because exercise can improve overall health and reduce stress.
