How Families can Manage Chronic Illnesses

For a parent of a child diagnosed with a chronic illness, the future can be scary and overwhelming. Assembling a medical team and beginning to formulate a treatment plan, even becoming familiar with a glossary of new terminology, can be taxing.

Resources are available to help families make sense of many diseases and ailments, and some of these organizations even offer tools specifically designed to help support the care of a child patient. For example, the Crohn’s & Colitis Foundation is a leading resource for families navigating inflammatory bowel diseases like Crohn’s disease and ulcerative colitis.

What is IBD?
Crohn’s disease and ulcerative colitis are the two most common types of inflammatory bowel diseases (IBD). These chronic conditions produce similar symptoms, use similar therapies, and are both treatable. However, they are not the same.

Crohn’s disease may occur in any part of the large intestine (also called the colon). In fact, it can happen anywhere in the entire digestive system. However, it most commonly develops right where the small and large intestine meet. In ulcerative colitis, only the colon and rectum are affected.

No one knows for sure what causes Crohn’s disease or ulcerative colitis, but experts believe several factors may lead to the development of the diseases, including genes, environmental elements like viruses and bacteria, and inappropriate immune reactions.

What are the symptoms? 
Despite the differences between Crohn’s disease and ulcerative colitis, both can produce similar symptoms when active, all brought on by chronic inflammation. Symptoms may include diarrhea, rectal bleeding, urgent need to move bowels, abdominal cramps and pain, sensation of incomplete evacuation, and constipation.

“It is critical that if you suspect your child has inflammatory bowel disease, you seek care with a qualified pediatric gastroenterologist who can carefully and efficiently help determine the diagnosis and begin a treatment plan to help your child feel better, thrive, and maximize quality of life,” said Andrew Grossman, MD, pediatric gastroenterologist and chair of the pediatric affairs committee of the Crohn’s & Colitis Foundation.

How does it affect children? 
When IBD is diagnosed in childhood, it may be more extensive and follow a more severe course than when it is diagnosed in adulthood. While symptoms are similar in adults and children, some children with IBD experience delayed puberty and some fail to grow at a normal rate. Dealing with disease relapses, frequent doctor visits, hospitalizations, treatments, and even surgery, many children with IBD miss significant school time and social activities.

They are often overwhelmed by the emotional and psychological side effects of the disease.

Learning how to manage the disease is not always easy for children. Parents play an important role in educating their children about IBD, including teaching them they need to take their health seriously and take responsibility for caring for themselves.

How can IBD be managed? 
It is possible to live a full, rewarding, happy, and productive life with IBD. Treatment begins with finding a pediatric gastroenterologist you trust. Your child’s IBD treatment may ultimately involve a wide range of therapies including medication, nutritional adjustments, and surgery.

Maintaining your child’s health may also involve lifestyle accommodations, like organizing your schedule for ample bathroom breaks when away from home. You may also need to work closely with your child’s school to manage absences and academic performance along with any medical care that needs to take place during school hours.

Many families also find value in building a network of supportive friends and loved ones. One example, the Crohn’s & Colitis Foundation offers Camp Oasis – a co-ed residential camp program that allows children to meet others like them in a safe and enriching environment.

Another resource is justlikemeibd.org, a website featuring stories and videos from teens with IBD as well as information on school, dating, managing stress and diet, research updates, and resources for parents.

Is your child ready to manage his or her own care?
For young adults, managing IBD may be particularly challenging, and this stage may be further complicated by the transfer of care from a pediatric health care team to an adult health care team. If you have a child taking the next steps into adult care, consider sharing these tips from the Crohn’s & Colitis Foundation and visit crohnscolitisfoundation.org/campus-connection to help your young adult become independent in his or her IBD management:

• Understand your disease and how it affects you personally, including your typical symptoms and signs of a flare. Also, be sure you understand when and how to contact your health care team.
• Know your medications and how much you take. This is especially important when you see other doctors so they can help you avoid medicines that don’t work well with your IBD medications.
• While a parent is still involved, practice becoming your own advocate with your doctor and others, such as school administrators. Ask questions and take an active role in your treatment.
• When your doctor orders tests or procedures, be sure you understand any preparations that are required, and be sure to follow up so you understand the results and any changes necessary to your treatment.
• If you move, enroll in a new insurance plan, or travel, know what medical services will be accessible and covered so you can make the best decisions about your health.