Contributor: Kadakkal Radhakrishnan, MD
If your child has been diagnosed with Crohn’s disease, you most likely — and understandably– have many questions and concerns. To navigate through this disease, it’s important that you know exactly what this autoimmune disorder is.
Crohn’s disease, also known as regional enteritis, is an inflammatory bowel disease that potentially can affect the entire gastrointestinal tract from the mouth to the anal opening. Fortunately, this is a pretty uncommon condition. The chance of finding a patient with Crohn’s disease is about one in 5,000, and of this number, about 20 percent are children.
The most commonly affected sites include the end of the small intestines, called the ileum, and the beginning of the large intestine, called the cecum. Ileo-cecal Crohn’s disease affects 50 percent to 60 percent of patients, while isolated ileal disease is seen in 30 percent of patients, and colonic disease, which affects the large intestine, is seen in 20 percent of patients.
Crohn’s disease occurs in patients who may have an underlying genetic susceptibility – most commonly due to subtle variations in specific genes. We have a better idea of these genetic variations now; however, having a genetic tendency does not confer an absolute risk to develop Crohn’s disease. Rather, it actually increases the risk.
Symptoms to look out for
If your child complains of prolonged episodes of intermittent abdominal pain, along with diarrhea, this could be a sign of the autoimmune disorder. Many children suffer from weight loss due to poor nutritional intake, inflammation or malabsorption of nutrients.
Abnormal skin tags in the bottom area and anal fissures are also symptoms of the disease; however, the most common cause of an anal fissure is constipation. Occasionally, patients develop abscesses around the anal opening.
These abscesses are due to fistulas – abnormal communication from the bowel to the outside. Although rare, patients can also develop strictures, or narrowing of bowel, which leads to bowel obstruction or abscesses inside their belly.
How Crohn’s disease is diagnosed
If your child has any symptom suggestive of Crohn’s disease, you should seek the help of your pediatrician. Diagnosis of Crohn’s disease takes into account the “big picture” – which includes the symptoms, examination, laboratory tests, imaging techniques and endoscopy.
On laboratory testing, patients may show anemia, low blood proteins and elevated markers of inflammation. An endoscopy, where a camera with a fiber optic light source is passed into the stomach through the mouth, called upper endoscopy, or through the bottom into the entire length of the colon, called a colonoscopy, often is required to obtain a biopsy from the inside to confirm the diagnosis.
Some patients may require a scan of their abdomen, whether it be a special CT scan called CT enterography or a special MRI scan called MR enterography. These imaging modalities offer a better delineation of parts of the small bowel that may not be reached by conventional endoscopy.
A capsule endoscopy, where the patient swallows a capsule size camera, is another way of looking at the small bowel. Although this test is rarely used — because it doesn’t replace the conventional endoscopy — it does help find evidence of small bowel involvement that would point toward the disease.
When it comes to treating Crohn’s disease in children, it’s necessary to induce remission, maintain remission and manage complications.
Often, steroids are used to induce remission; however, there is no role for steroids in the long-term management of Crohn’s disease. Trial of elemental diet may help induce remission of Crohn’s disease in the place of steroids.
Patients sometimes require immune modulators, which are medications that modulate or calm the immune system and help control gastrointestinal inflammation. These medicines include azathioprine, 6-mercaptopurine and methotrexate.
For a severe case of Crohn’s and in selected patients with fistulas, biological agents like Infliximab, Adalimumab, Certolizumab and, rarely, Vedolizumab may be used. Biological agents are engineered medications that are antibodies against specific mediators involved in the inflammatory process in Crohn’s disease.
Both immunomodulators and biological agents have side effects, but these side effects are rare. Studies suggest that the benefits of these medications outweigh the risks associated with them, but I strongly recommend patients discuss the side effects of these medications with their gastroenterologists.
Lifestyle changes are also part of Crohn’s disease management. This includes taking in adequate calories and refraining from smoking. Patients may also develop certain dietary intolerances while battling Crohn’s, including lactose intolerance, but this often improves with healing.
Complications of Crohn’s disease, such as obstruction, fistula and abscesses, may require surgery. Crohn’s disease is associated with a higher risk of surgery – almost an 80 percent lifetime risk of surgery – but with newer treatment approaches, this risk may be lower.
As mentioned, Crohn’s disease is also associated with higher risk of colon cancer. Patients who suffer from the disorder require screening colonoscopies starting eight years after the diagnosis.
Crohn’s disease treatment guide
This post is based on one of a series of articles produced by U.S. News & World Report in association with the medical experts at Cleveland Clinic.