Being a kid is hard enough in today’s world. Now imagine your child has an intestinal issue that causes unwanted attention, pain and fatigue. From multiple trips to the classroom bathroom to missed play dates due to recurring stomach aches, Inflammatory Bowel Disease is a life-altering condition.
Inflammatory Bowel Disease (IBD) is a chronic inflammatory disorder of the intestines that does not have a specific cause and can occur at a very young age. It affects 1.6 million Americans, and more than 30,000 new cases are diagnosed each year, primarily in adolescents and adults, but sometimes as young as toddlers. It causes the immune system to become inappropriately active, causing injury to the intestines.
There are two primary types of IBD — Crohn’s disease and ulcerative colitis. Crohn’s disease can occur anywhere in the digestive tract, starting from the mouth and through to the end. Ulcerative colitis is localized to the large intestine.
The symptoms of IBD can vary depending on where in the gastrointestinal tract inflammation is present. Children can present with abdominal pain, diarrhea with blood and/or mucous, loss of appetite, weight loss, vomiting, tiredness, joint pain and failure to grow. But how do you know if your child has IBD or is simply fighting a virus or another gastrointestinal issue?
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When IBD is suspected, you should take your child to his or her pediatrician. If the doctor agrees with your concerns, you will receive a referral to a pediatric gastroenterologist. To help diagnose Crohn’s or ulcerative colitis, your child will have to undergo testing. The specialist will usually order blood tests, stool tests, radiological studies and endoscopy and colonoscopy. While this may seem scary, because some of the tests are invasive, they are necessary to get an accurate diagnosis and rule out other conditions.
If your child is diagnosed with IBD, you will likely be frustrated to learn that at this time there is no cure for Crohn’s disease or ulcerative colitis. However, there are treatment options, which can include medications, nutritional therapies and/or surgical procedures. Because IBD is a lifelong condition and can wax and wane with time, different interventions will be required at different times.
Medications are used as maintenance therapy to keep the disease under control, and medications control the disease when it is actively flaring. Medications for Crohn’s disease and ulcerative colitis are similar and are anti-inflammatory in nature. In some cases they affect the immune system to stop injury to the gastrointestinal tract.
Diet plays an important role in managing and overcoming IBD. At this point there is no specific diet that will cure IBD, but some people who are experiencing a flare-up may have a decreased appetite or experience diarrhea when they eat, which can affect energy level and weight. When the intestines are inflamed it is hard for the body to absorb all the nutrients and calories it needs to heal. If your child is experiencing a flare-up, you should consider speaking with a dietician well versed in IBD for guidance. In addition, your child will need to be checked for nutritional deficiencies and supplements may be necessary.
While parents and patients always want surgery to be a last resort in treating IBD, it can be important for both Crohn’s disease and ulcerative colitis. It is best used in conjunction with medical therapies. The goals of surgery are to improve overall health, help reduce symptoms, help with growth and preserve as much healthy intestine as possible.
Inflammatory bowel disease requires a multidisciplinary approach that includes family support, physicians, dieticians, nurses, researchers, surgeons and social workers. While this many people managing your child’s condition may seem overwhelming, remember that each of these specialists is working hard to improve your child’s health and well-being. They are also there to lead you in the care of your child.
Being diagnosed with a chronic, lifelong disease is hard for children to assimilate into their daily lives. Signs that your child may be having trouble with his or her diagnosis include inability to sleep, doing poorly in school, not eating well, sadness and lack of interest in once enjoyed activities. If your child is exhibiting any of these behaviors, it is important for them to know that they have support from their family, friends and doctors. It is also normal to feel angry, sad and frustrated, but remind your child that most people who are treated for IBD lead normal, happy lives.
There is ongoing research to determine the cause of IBD and the role of genetics. There are also new treatment options, including diets and medications that target the immune system. Resources are available for parents and children at www.ccfa.org.
Amber Hamid Langshaw, M.D., is an assistant professor in pediatrics and pediatric gastroenterologist at UHealth - University of Miami Miller Health System. UHealth is nationally and internationally acclaimed for education, research, patient care and biomedical innovation. For more information, visit UHealthSystem.com/patients/pediatrics.