Danger of a gut reaction
More kids diagnosed with inflammatory bowel disease
WHO’S AT RISK
In the past, doctors believed that inflammatory bowel disease (IBD) rarely affected children — but studies now suggest that it is more common than previously thought, and that numbers are on the rise. “We currently understand inflammatory bowel disease to be an uncontrolled inflammatory response within the GI tract to what we call the microbiome or flora — the billions of microbial organisms that reside within our guts, and contribute to our general health in ways we don’t fully understand,” says Dubinsky. “We also know this uncontrolled response occurs in genetically susceptible individuals.”
There’s probably an underlying cause that remains to be identified. “We believe that that uncontrolled inflammatory response is triggered by something we don’t yet know,” says Dubinsky. “Right now, IBD has no known cause, which renders a cure unlikely in the absence of known causative factors.”
It’s hard to pinpoint exactly how many children are affected by IBD. “We think about 7 kids per 100,000 have IBD, but the incidence is hard to quantify because it varies depending on region, and cohort to cohort,” says Dubinsky. “One pattern is that northern regions are more affected than southern regions, not just in this country, but between northern and southern France, for instance. This leads us to suspect that vitamin D might be a factor.”
The western diet also seems to play a role. “As societies westernize, they change the microbial environment and the genes perhaps no longer recognize some bacteria as being harmless,” says Dubinsky. “Diets richer in amino-3 fatty acids and fiber seem protective, while diets high in animal proteins seem to increase the risk of IBD.”
More and more children are being diagnosed with IBD at younger and younger ages. “This makes us wonder what is going on in the environment — is it antibiotic use, the way food is processed, or the role of fiber?” says Dubinsky. “We’re beginning to understand that genetics aren’t the biggest player in IBD — it appears to be more about the intestinal flora, and how this impacts the way your genes express themselves.”
SIGNS AND SYMPTOMS
Most cases of inflammatory bowel disease fall into one of two categories, ulcerative colitis and Crohn’s disease, which affect different parts of the GI tract. “Ulcerative colitis is the form of IBD defined by colon involvement,” says Dubinsky. “Colitis presents in the same way for adults and children: bleeding, frequency, and urgency of bowel movements, and general pain and discomfort — in other words, symptoms related to the colon.”
Crohn’s disease presents itself a little differently. “Crohn’s can show up anywhere in the GI tract, from the mouth to the anus, so the symptoms can be less specific — like bloating, blood in stool, or in children, growth failure,” says Dubinsky. “People can go undiagnosed for a decade, because often they may alter their eating habits and impact the timing of presentation.”
TRADITIONAL TREATMENT
The first step toward getting the right treatment is getting the right diagnosis. “Once the doctor has a high suspicion of Crohn’s or colitis, he or she will order a colonoscopy with pathology, which is the gold standard diagnostic strategy,” says Dubinsky. “The diagnosis is typically made visually by the doctor, who is using colonoscopy to look at the lining of the bowel, and can see if there is inflammation.” To assess the small bowel, the doctor will also do an MRI or CT enterography and can often be helpful in confirming the diagnosis.
Only once the doctor has thoroughly confirmed the diagnosis can you agree on a course of treatment. “Treatment algorithms have changed dramatically since the introduction of biologic-based strategies in 1998,” says Dubinsky. “These drugs are called healers, because they actually take an ulcerated intestine and restore it to normal. Before that, we used steroids and immuno-modulators that only provided symptoms relief with minimal effect on the intestinal lining.”
Who is a candidate for taking biologic therapies? “We always have to balance the risks of the disease with the risk and benefits of the therapies — and what we are very clear on is that the risk of undertreated or untreated IBD far exceeds any risk associated with anti-TNF therapy,” says Dubinsky. “If we don’t use these therapies, patients end up with complications that can be much more severe.”
While there isn’t yet a cure to IBD, there’s a lot doctors can do to return patients to a normal quality of life and to prevent disease progression. “There’s actually a huge disconnect between how patients feel and what the intestine looks like — and it’s what the intestine looks like that drives future outcomes such as surgery,” says Dubinsky. “You want to avoid surgery and complications, which means that feeling better by itself isn’t enough. You want to feel better and prioritize healing.”
RESEARCH BREAKTHROUGHS
Just a year ago, doctors developed a new therapeutic target. “This new drug, Entyvio, is unique because it targets the GI tract selectively — and we know this kind of targeting is the next big thing,” says Dubinsky. “We expect three or four new targets to come out in less than a decade. Which means this is a time for IBD patients to be hopeful about new treatment options.”
QUESTIONS FOR YOUR DOCTOR
One of the most important questions that a family or patient can ask is, “What is the goal of treating IBD?” Follow up with, “How will this impact my long term prognosis?” Another key question is, “Will this therapy heal the inflammation?” And never hold back on asking, “What are the real risks of this therapy?”