How Much Do I Tell My Child About IBD?

Parents Can Tailor Information To Their Child's Age And Maturity

Parents Walking Child Down Hospital Hallway
People with IBD may need hospitalization to receive treatments, especially during a flare-up. Image © John Moore / Getty

A diagnosis of inflammatory bowel disease (IBD) brings a significant number of challenges to a family. The first hurdle to overcome is education: most people diagnosed with IBD don't have a family member with the disease, and there's an immediate and steep learning curve to understanding Crohn's disease and ulcerative colitis. When the person diagnosed is a child, much of the burden falls upon the parents.

 

Not only must parents make decisions regarding treatment, but they must also try to explain IBD to their child. How much information should parents tell a child about IBD? Should the child be given any responsibility when it comes to learning about medications and surgery, and if so, how much? The answers to these questions will depend on the age and the disposition of the child, and will be unique to each family and child touched by IBD.

As a parent, it has been my experience that lies or half-truths don't serve children well, and keeping information from a child may cause larger problems in the future. That being said, a discussion of IBD has to be tailored to the age and the maturity of the child. 

When to Get Help

In some cases, it may help to involve a mental health professional, and that help can be as limited or expanded as the family wishes it to be. People with IBD may benefit from individual therapy, and families may find it easier to discuss IBD with the help of a professional that has experience with children who have chronic illness.

Parents may wish to seek therapy alone or with their children, especially in cases where a child is very ill or needs significant medical interventions such as hospitalization and surgery.

Children Under The Age of Five

Having IBD means many things: taking medications, managing diet, and undergoing various tests on a regular basis.

In some cases, it may mean hospitalizations, procedures, and surgeries. With children, and especially small children, the challenge will be in letting them know what to expect without causing undue fear and anxiety. 

Very small children — those under 5 — may not be able to understand the enormity of being diagnosed with a lifelong condition. It may work better to leave off a comprehensive discussion of IBD for now, and instead take each situation as it comes. Explain each challenge fully but simply, without dwelling on too much detail. For example, it may be appropriate to tell a small child that a doctor or nurse will take their blood with a small needle, and it may hurt for a short time, but that mom or dad will be holding them (or be nearby) the entire time. For those that must take medication every day, it might be helpful to use a calendar or a chart to check off medication as it is taken. That way, the child knows exactly how much medication has already been taken that day, and how much more is to come.

Frank Garufi Jr. of The Crohn's Colitis Effect and the parent of a child diagnosed with Crohn's disease at age 3, describes how he managed the initial IBD talk. "I only explained to him that we were finally able to figure out what was causing him so many problems. I explained that he had Crohn's disease and that it was going to require him to take medications to try and help the problem." Garufi adds that discussions were very basic at first in part because "it wasn't until I really started researching IBD did I fully understand the severity of what [my son] was going to have to go through for the rest of his life." 

Children Over The Age of Five

For children over the age of 5, the explanation of IBD can be expanded to fit the child's understanding. Explain that they are ill (which they already well know) and that they will feel better, but that their body will always need special care to avoid becoming very sick again. The challenge here will be to help them understand the chronic nature of IBD without causing anxiety about the symptoms of IBD returning. A chart system for medications may also be helpful with this age group. For children that go to school, it may be necessary for a school nurse to dispense medications during the day. Parents will want to get to know the school nurse, and facilitate to help their child be comfortable receiving care at school.  

Garufi recommends taking a child's cues when it comes to disseminating information. "I would give him information slowly so that he could digest it. His responses to me and additional questions would tell me if he was ready for additional information." 

Tweens and Teens

Tweens and teens will most likely want a greater understanding of IBD and how it will affect the rest of their life. At this age, they may be able to comprehend the complexity of IBD and the uncertainty it may bring to their life. They may ask questions about the future: school, college, dating, and having a family. There are no hard and fast answers to these questions, but it's important for teens to understand that people with IBD live full lives and they can take part in activities along with their peers without IBD. Garufi points out that "the more information your child has, the better your child is going to be able to manage this disease. It is a delicate balance but it's a balance that I believe is important to maintain."

However, parents may want to make it clear that while IBD should not limit potential, teens must still take care of their bodies and manage their IBD properly. Taking unnecessary risks (such as eating a poor diet or experimenting with drinking) can have consequences for people with IBD, and teens may need to come to terms with being different from their friends in this respect. Parents can expect some pushback from teens, who may want to assert their independence in regards to their IBD management.

Young Adults

Young adults will be technically responsible for their own healthcare decisions, but most will rely heavily on their parents for help and information. Young men and women with IBD should be encouraged to do their own research about IBD, but parents will want to follow along as well and continue offering guidance. Transitioning to adulthood can be difficult, and whether at home or away at school, some people will do better with the support of their parents. Parents will want to take care not to overstep and tread where they are not wanted, but even full-grown adults need help in managing their IBD. Going to doctor's appointments, researching medications, and providing emotional support are just some of the ways a parent can support an adult child with IBD.

Keep In Step With The Latest In IBD

The landscape of IBD changes — sometimes rapidly. While it's acceptable to rely on physicians for their expert advice, IBD parents  will want to keep up with new research. Even though IBD is a disease of young people, research on children with IBD is scant. There are good reasons for this, but the end result is that for as little as IBD is understood in adults, it's even less well understood in children. Being an informed IBD parent is critical, and teaching a child with IBD to be an engaged patient is an extremely important responsibility. Garufi offers this final piece of advice: "As a parent, I suggest that you immerse yourself in IBD. Read, study, and learn everything there is to know about inflammatory bowel disease. As new studies and research are being done daily,  it's important that you keep up-to-date on everything."

Continue Reading