A child with ulcerative colitis (UC) may go through periods of remission, when their symptoms are better or maybe almost disappear, and times when they flare up and get worse. But because there’s no cure for the condition, your child will have it for the rest of their life.
With your help, your child can manage their symptoms and the other issues that can come along with them. The best way to get them ready to handle life with UC is to understand what’s ahead.
The most common symptoms of UC are diarrhea and cramping stomach pain. But your child might also have:
- Blood in the toilet or on toilet paper
- An urgent need to use the bathroom
- Lack of energy
- Weight loss
Some kids with UC grow slower than their peers. If they take steroids to treat their condition, that also can affect growth. A nutritionist can help you figure out how your child can get the calories and nutrients they need to grow. Also, if you notice that your child is losing weight or their growth seems to get a lot slower, let their doctor know.
UC -- and the medicines that treat it -- can weaken bones. Make sure your child gets regular exercise, which is key for healthy bones. Your doctor might also recommend vitamin D supplements.
If your child takes medication to suppress their immune system, you’ll need to discuss immunizations with your doctor. It’s important to protect your child against other illnesses, and most vaccines are safe even for kids taking immune-suppressing medicine. Ask the doctor what’s right for your child.
Life with a chronic health problem is stressful, especially for kids and teens who are also trying to figure out what it takes to grow up. Children with UC may become depressed, anxious, or have other emotional issues, including:
- Anger and wondering “why me?”
- Mood swings caused by their illness, medications, or both
- Frustration about not keeping up with friends
- Vulnerability because their bodies don’t act the way their friends’ bodies do
- Blaming themselves
- Worries about being different, slow growth, and how they look
Encourage your child to express how they’re feeling. Let them know that you’ll always be there to listen and support them. You can also ask your child’s care team to recommend support groups for kids with UC. Time with peers who also have the condition can help your child understand that they’re not alone. A mental health professional can also help. Research has shown that a type of support called cognitive behavioral therapy can help kids with UC fight depression.
At times, your child may not be able to do the same things that their friends do. For example, it can be hard to be the only one at a birthday party who can’t eat the ice cream or pizza that everyone else is having. Talk with your child beforehand about these situations and how they might feel when they come up. You can help them think of ways to get through emotionally tough moments.
Children with UC might feel the urge to skip their medicine or ignore advice about their diets -- especially when they’re in remission and feeling good. Some things you can do:
- Use an app on a tablet or smart phone to track medicine times and doses.
- Put medications in plain sight to remind your child to take them, for instance, next to the sink or toothbrush.
- Use a pillbox with doses for each day marked out, so that you can easily spot any missed treatments.
- Ask your child to think about how the medicine affects their symptoms. Does it allow your child to participate in favorite activities? Make note of any side effects to discuss with health care professionals.
- Talk to a dietitian to make a nutrition plan that fits your child’s daily life.
- Can your child take the same medicine in fewer doses? Ask their doctor about what’s called the “daily pill burden.”
Your child will need to use the bathroom often. Build planned breaks into your activities. Encourage your child to take control by finding public restrooms ahead of time at places you visit often -- playgrounds, for instance.
Your child’s school should be aware of your child’s illness and issues that might come up. These could include:
- Frequent access to the bathroom
- A plan to deal with absences
- Administering medication
Your child might qualify under federal education laws for either a 504 Plan or an individualized education plan (IEP), which specify accommodations your child needs at school.
As Your Child Gets Older
At some point, your child will need to take over the responsibility of managing their condition. Doctors call this process “transition.” The exact timing is something for you, your child, and your care team to decide.
First steps in the process might be for your child to:
- Understand the basics about UC
- Know the names and doses of medicines and when to take them
- Be able to express feelings about how UC affects school and friendships
As a teen, your child may want a chance to meet alone with the doctor sometimes. Try to honor their need for independence and find a way you can still offer support.