Kids get stomachaches. It’s an unfortunate reality of parenting that can often get very messy, very quickly. Sometimes, though, those stomach pains can be a sign of serious illness. Los Angeles mom Stacy Dylan knows this first-hand, as her 14-year-old son Lowell began having digestive issues at around 18 months. She sought a doctor’s opinion when he began having diarrhea that surpassed normal “toddler diarrhea,” and little Lowell was diagnosed with ulcerative colitis, an Inflammatory Bowel Disease (IBD) that affects only the large intestine. When Lowell was 5, the diagnosis was upgraded to Crohn’s Disease, when it was discovered that other parts of his digestive system were involved.
According to the Crohn’s and Colitis Foundation, Crohn’s disease and ulcerative colitis are incurable diseases that attack the digestive system and cause symptoms including abdominal pain, persistent diarrhea, rectal bleeding, fever and weight loss. The diseases are quite painful, and in long-term sufferers, they can cause severe complications, including colon cancer. Of the 1.6 million Americans diagnosed with the Crohn’s Disease and ulcerative colitis, as many as 150,000 are under the age of 18.
So how can parents determine whether their child’s tummy troubles warrant medical attention? Signs that something serious may be going on include frequent diarrhea, loss of appetite, pain while pooping, mucus in the stool, stomach pain while eating or on an empty stomach and headaches and nausea with no accompanying fever, says Dr. Jennifer Burns of The Bienetre Centre in Phoenix. Even then, she adds, testing must be done to determine whether the child does have an inflammatory bowel disease, like Crohn’s or ulcerative colitis, or if he is suffering from the less severe and more common irritable bowel syndrome (IBS).
In children, IBD and IBS present some of the same symptoms (like abdominal pain, nausea, diarrhea or constipation), but the key differentiating factor is that IBD causes inflammation that actually damages the lining of the intestines, impairing nutrient absorption. IBS, meanwhile, sensitizes the nerves that cause the contractions (also called peristalsis) that push solid waste through and out of the bowels. As a result, IBS sufferers often have alternating bouts of constipation and diarrhea, but other, more serious complications are unlikely to result.
Even though IBS is less severe than IBD, it should still be addressed, so it’s important for parents to be persistent if they still suspect a chronic condition even after IBD is ruled out. “Kids often experience digestive problems, but doctors generally assume that it’s nothing serious and send them on their way,” says Dr. Stephen Wangen, Medical Director of the IBS Treatment Center. “Unfortunately, these problems have a significant impact on the children as well as on their entire family. The diagnosis of IBS isn’t often used in kids, but it should be. It’s exactly what they are experiencing.”
Addressing the Issue
Whether a child is suffering from IBD or IBS, lifestyle changes are likely to be the first line of defense in combating the problem. “The child’s diet would need to be fine-tuned to foods that don’t cause the colon to be inflamed,” says Burns. “They may need to avoid gluten, sugar, high-fat and high-fiber foods and eat foods that can be digested easily.” Burns also recommends using a heating pad to help with any inflammation of the colon, as well as drinking room temperature water, as cold water can irritate the colon. These interventions may be enough to minimize symptoms. But, unfortunately, that isn’t always the case.
Managing Lowell’s disease has been very difficult for the Dylan family, as he has endured countless hospital stays and surgeries—not to mention numerous doctors visits, tests, procedures and medical injections. Lowell also takes the prescription medication Lovenoz to prevent blood clots that can result from PIC lines (peripherally inserted central catheters) administered to provide nutrition when Lowell cannot eat solid food. It’s a lot for anyone to handle—especially a child—but Stacy admires her son’s resiliency. “Lowell lives his life in a way that puts his disease secondary to just being a kid,” she says. “He plays sports, performs in piano recitals and is also a good student. Anyone who knows Lowell is aware of his perseverance, determination, ever-present sense of humor and ability to make light of his situation. That is not to say that he does not experience sadness and dark days. But his ability to not let his disease define him is truly an inspiration.”
It is because of this “sadness and dark days” that Dr. Frank Sileo, Ph.D., a psychologist and author of the children’s book Toilet Paper Flowers: A Story About Crohn’s Disease, sees many patients with digestive distress. “Many patients need help with the anxiety of managing the disease and symptoms such as finding a bathroom or having an accident,” he says. “Some patients feel depressed or angry as a result of the disease, in that, their lives have changed and they didn’t ask for this disease. Some of my young patients also struggle with telling their friends. They often feel embarrassed about this disease and are uncomfortable talking about bathroom issues. I am usually referred cases after they receive the diagnosis to assist with accepting their illness, giving them information and helping them with coping with the disease.”
Ultimately, says Sileo, parents are responsible for maintaining a sense of normalcy for their child and helping them through a difficult diagnosis. “Parents need to get as much information as they can for their child,” he adds. “Our children look to us for safety and security. Many parents may also be struggling with feelings of anger, confusion, anxiety and depression, so they need to find support and knowledge to remain strong for their children. They need to remain hopeful and convey a fighting attitude toward the disease. When they do, their children may follow suit. Finally, they need to pay attention to their other children without the disease. As much as children without the disease can become ardent protectors of their siblings with [the illness], they may also develop feelings of anger and resentment.”
Stacy agrees, but she also cautions parents to avoid any one-size-fits-all solutions or overwhelming themselves with information. “My advice is to find a good doctor that you trust, but never stop advocating for your child and learning more about the diseases and how they are being treated,” she says. “But don’t look up every symptom and medication on the internet, and be careful of listening to other people’s advice. Your child will keep being a child, even through their illness, so just let them do the things they want to do when they can do them.”