Could you give us an overview of the two main types of IBD and their general symptoms?
The two main types are ulcerative colitis and Crohn’s disease. They have some very similar findings in that they typically present with blood in the stool, abdominal pain, diarrhea.
In Crohn’s disease, more frequently, we see weight loss and an inability to gain weight as a sign of inflammation in pediatrics.
The differentiator really is that inflammation in Crohn’s disease can be found anywhere from the mouth all the way down to the anus. While in ulcerative colitis the inflammation is really focused in the colon.
To give you a broader view, they’re both inflammatory processes that are similar to an autoimmune problem, which can be based on genetic susceptibility as well as effects from the microbiome in the intestine.
It can be tricky to diagnose IBD at first. What causes IBD? Is it environmental factors such as diet, or can it be genetic factors as well?
The current theory is that it’s multifactorial.
Patients likely have an underlying genetic predisposition. We know that in twin studies, there's a higher prevalence of IBD: If one sibling has inflammatory bowel disease, the other has a higher chance of developing it as well. We know that it can run in families. So there is a genetic component to it, but that's not the whole story, because not everybody in a family with similar genes is going to develop inflammatory bowel disease.
How the immune system responds to an inflammatory process also plays a role. meaning either the immune system is unable to turn itself off or it is hyperresponsive to the intestinal microbiome.
Finally, there are also environmental factors that can play a role, including the microbiome, diet or infections. We know that smoking increases your risk of having Crohn's disease. We know that certain environmental exposures at a young age can have an effect both positive and negative.
For example, kids who grow up on a farm have a slightly lower risk of developing IBD, theoretically due to exposure to animal antigens and other things that educate the immune system to activate in the appropriate way.
Data suggest even having a dog or two has a slightly protective effect. The environment probably is important early on in life, and it may have some input later in life as well.
How do parents and pediatricians identify IBD over a “sensitive stomach” or food allergies and other gastroenterological issues? It seems like an extended diagnosis process.
It definitely can be an extended process. The data show that most pediatric patients that present with inflammatory bowel disease have probably had inflammatory bowel disease for a year or longer before they present or are diagnosed.
What we look for are red flag symptoms – like weight loss. Kids shouldn't be losing weight. Blood in the stool, persistent diarrhea. Those are the big ones.
The one that's always hard to determine is the weight-loss component, because as kids get older, right around the age that we most commonly see inflammatory bowel disease – age 11-14– those kids are only being seen by their pediatrician once a year, and weight loss can also frequently be one of the first symptoms that we see. So, it could theoretically take a year to recognize that they haven't gained weight, or that they've lost weight.
When you start asking the questions, ‘Have you had significant abdominal pain that's been present on and off?’ ‘Have you had diarrhea?’ ‘Have you had blood in your stool?’ That's when you start to gain that understanding that IBD actually may be the issue.
What kind of testing can be done to detect IBD?
Testing is really the most critical component of diagnosis. The gold standard is upper endoscopy and colonoscopy. Although a quick, painless test that I like to use is called fecal calprotectin. This test requires a stool sample and looks at inflammation in the intestine itself. It can be a really nice differentiator between inflammation and other causes of abdominal pain. It doesn't tell you that you have Crohn's disease or ulcerative colitis, but it can differentiate between patients who don't have inflammation in the intestine and patients who do have inflammation in the intestine.
What's the current treatment regimen for a pediatric patient once a diagnosis has been established?
It varies depending on which type of inflammatory bowel disease you have.
We have these aspirin derivatives called 5-ASAs – Pentasa, Rowasa – that decrease inflammation in the intestine. These can treat about up to 30% to 40% of our patients with ulcerative colitis and keep them in remission. They are not the most effective, but they have the least side effects. With all medications we have to take into account the risks and benefits.
There are also immunomodulators – azathioprine, methotrexate. These are oral medications that we are using less and less because they have a higher risk profile, and their efficacy is good, but not great. They significantly suppress the immune response and have some risk of developing malignancies as well as other concerning side effects. I would say we use them less and less.
The most effective and beneficial medications for our patients are the biologic medications. There are many effective biologic medications – infliximab, adalimumab etc – there’s many of them used in adult IBD, but those are the two that we have approved for treatment of pediatric patients.
Does having that earlier diagnosis and setting up treatment options help these younger patients avoid some of those growth impacts and surgeries in adulthood if they're on a treatment plan at a young age?
Yes. There was just a study recently that showed that there has been a decrease in the number of surgeries that are required if you get treatment early and with our current treatments. In 2010, there was another study that, at that time, really didn't show that treatment was changing the need for surgery. But now,10 years down the road, we've found that we've learned a lot, and we've got a lot of different treatments that are effective that have decreased the risk of surgery, decreased the risk of growth delay and pubertal delay. Treatment is an effective way to avoid those things.
Have you seen in your clinical work or in your research long-term impacts on growth and development with IBD in children?
If it's treated, the impacts are significantly decreased. In the old days, it was pretty much accepted that patients that were diagnosed with Crohn's disease would be probably 25% shorter than they would've been expected to be because of lack of growth due to inflammation. We know that kids who have inflammatory bowel disease can have delayed puberty, delayed menarche [first menstrual cycle], things like that, that really all contribute to growth and bone development. I did say that the most common age is 11-14, but realistically we see kids from 6 months of age to 18 or older who develop inflammatory bowel disease. So, while 11-14 may be our peak, it's spread out across all the age groups.