9 ways to help kids with IBD

As with any chronic illness, inflammatory bowel disease (IBD) can be difficult for families to cope with. Whether it's dealing with scary symptoms and tests or just the emotional toll of it all, caring for a child with ulcerative colitis or Crohn’s disease can make parents feel fearful, confused, or overwhelmed. Mix in teenage angst and mood swings, and your home could feel like it's ready to explode. That's why it's so important to stick together. These tips can help you do just that.

Being well-informed can help your child cope with IBD. Tell them as much as you think they'll understand and answer questions as honestly as possible. Show sympathy when they're scared and acknowledge distress. Remind your child that flare-ups are usually temporary and that their treatment should help them feel better soon. 

It's also smart to listen to their opinions. For example, if your kid is on nutritional therapy, do they still want to eat with the rest of the family? And when and how much do they want you to tell friends, neighbors, relatives, and their friends' parents?

There's a powerful connection between the brain and gut, and feelings of stress can often make gastrointestinal (GI) symptoms worse, says Nirav Patel, MD, a pediatric specialist at Atlanta Gastroenterology Associates. Try your best to keep a low-stress environment, offer extra support during exam time, and encourage your child to rely on friends and family when they need help. Relaxation exercises or yoga may help with coping, Dr. Patel says. If things feel out of hand, be sure to talk with your child's healthcare provider (HCP).

Most kids can go to school and take part in sports and other interests, so be careful about letting IBD become an excuse. For kids with frequent problems, you may want to look into ways to make their day easier. Don't hesitate to approach school officials and teachers, says Patel. Ask for a meeting to develop an accommodation plan based on your child's needs. A 504 plan can outline specific requirements, such as sitting near the classroom door, eating, or drinking during class, and storing medications at the nurse's office. Patel strongly recommends using your child's HCP as a resource. "The doctor can write a letter requesting special privileges, such as unrestricted bathroom passes."

One of your most important jobs is helping your kid stay on track without being too controlling. Help them understand their medications or other treatments—whether it's occasional steroid therapy, aminosalicylate drugs, or immunosuppressive drugs—and how their disease might change over time.

Patel says that when kids understand how taking their meds, eating well, and getting plenty of exercise can help them feel better, they'll be more likely to stick with their treatment plan. "Parents can then allow older kids and teens the opportunity to demonstrate their maturity and independence—their ability to take control of the disease—and teens will feel a sense of accomplishment for doing so," Patel adds.

Today's medical treatments can help keep IBD symptoms under control, but sometimes your kid will feel really sick. Remember that symptoms of a common "stomach bug," such as vomiting or diarrhea, can also be a sign of a disease flare-up, says Patel. Depending on other symptoms, including weight loss, fatigue, or blood in the stools, the doctor may want to see your child right away. "These may be instances when anti-inflammatory medications, such as a brief course of steroids, may help 'put out the fire' fairly quickly," Patel says.

During flare-ups, your child may not be very interested in food, which can leave you feeling worried about their weight and growth—even frustrated. Try to stay calm during meals and resist the urge to enforce the "clean plate rule." Offer smaller meals or let older kids make their own snacks or meals when they feel ready to eat. And remember, it's the colitis or Crohn's that's the problem here, not your cooking. If you're really worried about nutrition or growth, ask your child's HCP for advice.

Traveling can be tricky when your child has IBD, but a little planning can go a long way. First, make sure your provider knows about your travel plans. They can help you make a list of pediatric GI specialists in the cities you'll be visiting, says Patel. 

As for what to bring, always keep medications, snacks, drinks, and an “emergency kit” within reach. The kit should include tissues or wipes, ointments, disposable bags, and a change of clothes, Patel says. Bring enough medication for your trip, plus a little extra in case your trip gets extended. Put all the meds—in their original bottles with the pharmacy labels—into a large, clear plastic bag for easy access and speedy airport security screenings.

Consider downloading the Crohn’s & Colitis Foundation “We Can’t Wait” app on your smartphone, too. It can help you find bathrooms at establishments deemed sensitive to people with IBD and also use crowdsourcing to vet “good” bathrooms when you are on the road.

It's natural to feel overwhelmed by IBD, especially when your child is first diagnosed. But it may help to know there are thousands of other parents in similar situations. 

Patel recommends the support groups hosted by local chapters of the Crohn’s and Colitis Foundation of America (CCFA). "This is an excellent forum for parents to meet, share experiences and educate themselves," he says. The CCFA also hosts summer camps for kids, with expert medical care on standby. "It's a great way for kids to know they're not all alone in this battle." 

You may also want to talk to your child or teen about seeing a counselor or psychologist to help work through their anxieties.

It can be hard for any parent to let go as children get older and more independent. But it's especially important for kids with IBD to be in control of their condition and its treatment by the time they leave the nest. Start by letting go a little at a time. For example, maybe your child is ready to meet with the doctor or nurse alone once in a while. The day before the appointment, sit down together and write a list of questions and things to discuss. This can help your child or teen build the sense of confidence and empowerment they'll need as they head out into the world.