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About 25 percent of people with ulcerative colitis (UC) are children. UC is a type of inflammatory bowel disease (IBD) where the large intestine’s lining becomes inflamed, along with the rectum. This causes diarrhea and frequent bowel movements, among other symptoms.
If your child has ulcerative colitis, you already know what the challenges are — both physical and emotional. Children with IBD are approximately twice as likely to experience psychiatric conditions like depression or anxiety as their peers without the condition. They may be sad about the idea that they’re not “normal,” and the sleep disturbances and lack of appetite that can come with UC may cause behavioral changes.
Seeking help and emotional support for your child benefits your entire family. As a parent, it's easy to get caught up in any difficulties your child may experience. To fully support children with UC, caregivers must make sure to take care of themselves.
Children with ulcerative colitis may feel emotional strain for several reasons. They may worry about being teased by peers. They may feel self-conscious about their physical symptoms. They may have fears about the gastroenterologist visits and blood tests that are becoming more frequent — or even more invasive tests like an endoscopy, colonoscopy, or X-ray. Ongoing abdominal pain may also take a toll on their quality of life.
Children with ulcerative colitis frequently have trouble sleeping due to abdominal discomfort and a frequent need to go to the bathroom. Over time, poor sleep can affect behavior — along with a lack of appetite, which kids with UC may also experience.
Children with UC may believe that as the “sick kid,” they’re too different to be accepted by their peers. They may have ongoing feelings of sadness. This may make them reluctant to talk with their peers — or with you — about how they’re feeling.
Children with ulcerative colitis may need to go to the bathroom frequently, have bloody stool, or experience chronic discomfort. These symptoms of ulcerative colitis may affect physical functioning and quality of life, particularly if they’re having a flare-up.
Children with IBD are at higher risk of depression than other children, in part because of the physical symptoms that affect their quality of life. However, there are also psychological factors. Their self-esteem can take a big hit if they feel self-conscious about the condition and its effects. Still, research suggests there may be a direct physiological correlation between IBD and mental health.
In a study in Current Opinion in Pediatrics involving 226 children with depression and IBD, researchers found that the 75 percent of participants who had no inflammation or mild inflammation also had milder symptoms of depression than other children in the study. Another 19 percent had both elevated inflammation and depressive symptoms that affected their sleep.
Interestingly, the remaining 6 percent had relatively low inflammation, but more severe depressive symptoms, including suicidal ideation. This demonstrates that while inflammatory bowel diseases such as ulcerative colitis can have a marked effect on children's emotional well-being, further study is needed to demonstrate a direct correlation.
There are lots of ways you as a parent can help your child manage the emotional toll of ulcerative colitis. Below are some proactive steps you can take.
One of the most difficult parts of UC for kids is the perception that they’re the only ones who have it. This is why many specialists recommend seeking out other kids with the same chronic condition, whether through a support group or a place like Camp Oasis. Founded by the Crohn's & Colitis Foundation, Camp Oasis is exclusively for kids with IBD, to provide a fun and supportive community. By meeting other kids with the same condition, they will likely feel relieved that there are other people who understand what they’re going through because they’re experiencing it themselves. This should go a long way towards reducing the isolation that can be a part of living with this chronic condition.
There are other ways of helping children cope with the emotional side of ulcerative colitis. You can teach them ways of coping with anxiety and stress on their own when you can’t be there to help them. Relaxation techniques can guide them to ease worries by themselves.
One technique is diaphragmatic breathing, or belly breathing, which involves 10 to 20 minutes a day of deep breathing on their own. Mobile apps can guide them through the process until it becomes second nature.
Some researchers recommend finding your child a therapist specializing in teaching cognitive behavioral therapy (CBT) techniques. CBT is one of many therapeutic methods for treating depression and anxiety, and it includes practices like calming self-talk and learning to stop negative thoughts. The long-term goal of CBT is to give children the tools to increase their resilience on their own.
For families in the United States, another way to support your child with ulcerative colitis is to create a 504 plan. This is an action plan developed by you, your child, and the child’s school that lists the accommodations the child will need the school to make. This way, if your child is absent due to flare-ups, appointments with your child’s doctor, or side effects from treatment, they won’t be penalized for it, and their grades won’t suffer.
Perhaps most importantly, a 504 plan will help your child feel supported. They won’t have the anxiety that comes with having to explain their condition to teachers. They’ll feel more secure in the knowledge that the school not only understands what their needs are, but is acting as an ally.
Finally, if you find out your child is being bullied, you don’t have to accept the situation. The U.S. Department of Health and Human Services recommends contacting your child’s school and telling them what’s happening. If they don’t act, contact your state’s Department of Education and let them know.
If you’ve ever been in an airplane, you’ll remember being told by the flight crew to put your oxygen mask on before your child’s in case of an emergency. That’s because if the cabin were to depressurize, you could pass out, which would make you unable to help your child get their mask on.
In the same spirit, people with newborns are often advised to take care of themselves to better care for the baby. This also goes for parents of children with UC. If you’re not taking care of yourself, you may not be of much use to your child, and your child needs you firing on all cylinders. So, prioritize your mental health.
Everyone has ups and downs, but if your emotional distress is making day-to-day activities harder than usual for an extended period, you may be suffering from depression. In that case, you’ll need to find professional support. Symptoms to watch out for include persistent feelings of hopelessness, weight loss, sleep disturbance, and even thoughts of death.
If you’re feeling overloaded, don’t be afraid to ask for help from friends and family members so you can take breaks from parenting. Also, consider finding a support group for parents of children with UC. You may find you’re a lot less alone than you think you are.
Many MyCrohnsandColitisTeam members are parents of children with ulcerative colitis, and they love to help other parents with advice that will make things a little easier.
“My son was diagnosed with UC in June 2016,” said one member. “He is now 18, and weight training has been good for him.”
“It works well,” a member agreed. “It helps you breathe well and stretch.”
It’s not always the parents who come to MyCrohnsandColitisTeam for help and advice. One MyCrohnsandColitisTeam member is the parent of a 14-year-old with UC, and the child took matters into her own hands and wrote through the parent’s account that she was being bullied at school. She had told her parent, who was taking the matter up with the school.
“Well done, you've taken the first step on the road to things getting better for you,” one member said. “Hang in there.”
“You have done the right thing, and you will beat the bullying,” said another. “You are brave and beautiful.”
By joining MyCrohnsandColitisTeam, you gain the support group of over 134,000 people, including about 9,000 parents of a child with IBD.
Are you the parent of a child with UC? How do you talk to your child about their condition and treatment options? Share your thoughts in a comment below or post on MyCrohnsandColitisTeam.
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