Living With a Severe Digestive Disorder

Medically Reviewed by Brunilda Nazario, MD on May 29, 2014
3 min read

Having a severe digestive disorder doesn't just affect what your child eats. It affects many parts of her daily life and those of her siblings as well. With care and planning, you can help daily life go smoother for everyone in your family.

Digestive disorder symptoms -- diarrhea, constipation, gas, stomach pain -- can be especially awkward for a child. At school, your child may:

  • Get teased about the disorder
  • Be self-conscious about restroom use
  • Feel peer pressure about his food choices
  • Feel he can't rely on his body to be "normal"
  • Find it hard to focus and keep up sometimes

An individualized education program (IEP) can give your child special accommodations at school. An IEP might include things like letting him go to the bathroom without having to ask, using the nurse's bathroom, or getting extra time on tests. Ask the school staff about getting one.

If his condition is severe, a break from regular school may be a good idea. “There are many options in today's world,” says Sue Eull, RN, who works with families and children that have severe digestive disorders. Online classes, home schooling, and tutoring are some options.

Explore what's out there to see which is best for your child. For example, Eull says one teenager she worked with would have missed many school days if she went to her local school. Her parents chose to have a tutor teach her instead. That gave their daughter the energy to join her local volleyball club. The time she spent time with other teens was good for her health and confidence.

“Losing weight is a common side effect of having a severe digestive disorder," says Frank J. Sileo, PhD. There's no specific diet for most digestive disorders. Aim for a healthy, well-balanced diet and avoid foods that cause your child's symptoms to flare.

To keep your child's diet healthy:

  • Talk to her doctor before removing any foods.
  • Keep a food journal. It can help you pin down problem foods and decide if your child is getting enough nutrients.
  • Talk with a dietitian about ways to help your child eat well.

A severe digestive disorder puts a strain on the whole family. Siblings may be frustrated or angry when outings are canceled or the family's routine changes suddenly. They may resent the time you devote to the child with the disorder. They may sometimes feel ashamed about their sibling's condition.

It may help to:

  • Reserve one-on-one time with each of your other children.
  • Talk to them about their feelings.
  • Help them learn other ways to channel their anger or frustration.
  • Consider joining a support group for families or siblings of children with digestive disorders.

Hopping a bus or plane -- or just getting to school -- isn’t always easy. “You do not always know when you will have to go to the bathroom or how you will feel," says Sileo, who has a digestive disorder himself. "Not all forms of public transportation, such as school buses, have bathrooms, which can create stress if you really have to go.”

Driving your child to school may start the day off easier. Sileo suggests keeping the car stocked with:

  • Extra clothes
  • A bedpan
  • A blanket for privacy
  • Toilet paper and garbage bags

Just knowing you have these supplies on hand can take some of the worry out of car travel for you and your child, he says.

Eull suggests these travel trips:

  • If flying, bring food in case options are limited. Travel early in the morning to avoid plane delays.
  • Limit car travel to eight hours or less. Plan for activity, healthy meal, and bathroom stops.
  • If visiting friends, be sure to let them know what your child can and can't eat ahead of time.
  • If staying at a hotel or resort, call ahead to find out about dining and activity options.