Marc Schwartz, MD, Assistant Professor of Medicine, Gastroenterology, Inflammatory Bowel Disease and Celiac, at the UPMC IBD Center talks about Crohn’s disease.
Interview conducted by Ivanhoe Broadcast News in September 2018.
When we’re talking about inflammatory bowel disease are we actually talking about two different conditions that overlap? Can you speak about that a little bit?
Dr. Schwartz: The two most common forms of inflammatory bowel disease are ulcerative colitis and Crohn’s. There are a couple of more rare versions of the disease as well. But Crohn’s and ulcerative colitis are in theory two ends of the spectrum that we know have a lot of overlap. So it’s really a continuum with Crohn’s being on one end and ulcerative colitis being on the other. But a lot of patients fall somewhere in the middle, where they don’t have a classic text book version of each.
Tell me some of the symptoms? What’s happening with patients and can this disease be going on for a while before anyone realizes?
Dr. Schwartz: Crohn’s disease can be quite silent. Crohn’s most typically involves the end of the small intestine. And while there may be deep ulcers or a great deal of inflammation, it often involves a short area of the intestine. Many patients don’t present with the disease until they have a complication, such as a perforation or a stricture causing a blockage. Others present with just vague complaints like mild pain, discomfort, diarrhea, things like that.
How common is it or is it being diagnosed? Are these conditions being diagnosed a little more?
Dr. Schwartz: They’ve been fairly well diagnosed for the last couple of decades. I’d say by three to four decades since we’ve been doing endoscopy on a regular basis. It’s estimated that one to one a half million Americans have inflammatory bowel disease. Some of those are quite mild. But, a certain percent of them are quite severe.
When is the first onset? Does it usually start in kids or teens?
Dr. Schwartz: So this is a disease of young people. Most people are diagnosed between the age of about fifteen and thirty five. Kids can be diagnosed as early as one year old. But then there are also people diagnosed in their eighties. Most patients are diagnosed in their twenties as sort of the primetime.
And do we know what causes it?
Dr. Schwartz: We have a good idea but we don’t know exactly what causes it. There’s some combination of genetics and environmental triggers of some sort. Probably some sort of virus or exposure that triggers the immune system in the patient who has the correct genetic makeup to allow this to happen.
Are the other treatments different?
Dr. Schwartz: There are very good medicines for both diseases at this point. Certainly much better than we had twenty to twenty five years ago. For ulcerative colitis surgery, it is a reasonable option because it’s curative, for the most part. So, even though we have good medicines, if worse comes to worse or if the patient prefers surgery, it can be curative and that’s a good option. With Crohn’s disease, it almost always comes back after surgery because Crohn’s disease can effect anywhere from the mouth all the way to the end of the colon. Therefore, if you take out a bad piece it will almost always come back. We can live without a colon, but we can’t live without our small intestines because that’s where the nutritional absorption occurs. Therefore, for Crohn’s we need to have medication. Without medications you’re talking about repeated surgeries which can be very problematic. Fortunately, over the last twenty years we’ve had a big change in medication with biologic medications, notably the anti-NITF medications, which came out about twenty years ago now. There are more options that have come out since then. There’s a pipeline of many new molecules and treatments which should give us more things to try to treat those who don’t respond to other things.
In terms of the medications, are most of those given as an IV infusion or are there others?
Dr. Schwartz: There are some medications called mina modulators which tend to be older medicines such as methotrexate or azathioprine. Those are pills, or in the case of methotrexate, can also be a shot. New biological medicines are all injections or infusions. There are some new medications that are coming out which are novel and are actually in pill form as well. But the biologics tend to be given as either a shot or IV infusion.
You said surgery can cure colitis, but there is no cure for Crohn’s, right?
Dr. Schwartz: Right. By taking out the colon, you have removed the colitis, and that’s a cure. You may still have some systemic inflammation, but it tends to solve most of the problems. With Crohn’s, unless you were to remove large parts of the intestinal tract, it could still come back. So the approach with Crohn’s is generally to do surgery when there’s a problem. When there’s a blockage, you remove a couple of inches on each side and then the intestine is okay again. If there’s a perforation, you would clean up that area and put it back together. But the disease almost always recurs within a year or two. So if we don’t have a good medication plan, then it’s really just a revolving door and we’re right back where we were.
What would you want parents to know about these diseases? What should they look for in their kids?
Dr. Schwartz: The diagnosis of Crohn’s in particular can be difficult. Fortunately, these diseases are fairly rare. Those who have a family history of Crohn’s or inflammatory bowel disease do have an increased risk. In those families, there should be some increased awareness. But for most people, there shouldn’t be any significant concern unless there are symptoms. Although as we said, those are not a perfect way to diagnosis this. But it’s rare enough that it would be more harmful than beneficial if every eighteen year old was getting a colonoscopy to look for Crohn’s. We don’t want to go to that extreme either. The most important thing is that in this day and age, most patients can be effectively treated with very safe medicines. While there are always some patients who have significant difficulty compared to where we were a couple of decades ago, eighty to ninety percent of Crohn’s patients can be well-managed. Eighty to ninety percent of ulcerative colitis patients can be well-managed. So it’s not a hopeless situation and will only get better because new things are coming out. We’re continuing to make progress and most people with Crohn’s and ulcerative colitis live happy, healthy, normal life’s with minimal inconvenience.
How important is it to get an early diagnosis when you have one of these conditions?
Dr. Schwartz: It’s important mostly for the quality of life of the patient. With ulcerative colitis an early diagnosis is usually not very difficult because bloody diarrhea catches everyone’s attention and they’re going to be seeing a doctor. With Crohn’s, the symptoms can be vague and of course if there are no symptoms, it’s virtually impossible to diagnose until there’s a problem. Even if it’s diagnosed after a first surgery, it’s key to be aggressive at that point and treat. If we don’t catch it right away, whenever we do catch it, it’s important to start treating appropriately and aggressively.
Why is it so important to get the word out?
Dr. Schwartz: Along with Molly, we have a few other very personable and eloquent spokespeople who we take care of, most of them young. They can explain to patients who haven’t been through what they’ve been through, or who are going through currently what they’re going through, or what they have been through. They can explain to them what to expect. They can help them make some decisions which can be very difficult. I think what Molly and a lot of other people have shown is that life goes on. And, that with appropriate care, you don’t have to stop your life or give up your dreams. Because this is a disease primarily of young people, fortunately most of them go on to be old and live a very long and healthy life. But a lot of people in their teens and twenties don’t expect to have a disease like this and their concerned that it’s going to really abruptly alter their life and their plans. People like Molly and others are great examples of how that’s not the case. And I think that gives hope to a lot of people.
END OF INTERVIEW
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