Q: What is Crohn's Disease?
A: Crohn's Disease is a chronic bowel disease. It is what we call an inflammation of the intestine. What inflammation means is that white blood cells migrate out of the blood stream and into the intestine wall. What it causes is pain, diarrhea, blood (in the stools), pus, mucus and weight loss.
Q: What causes it?
A: We don't know what causes it, but it typically affects teenagers and young adults, although it can affect anybody from babies to older people. It tends to recur throughout life. Although we don't know what causes it, we think that genetics play a big role, and you inherit the predisposition. There also are environmental triggers. One of those is when there's an imbalance of the bacterial flora in your gut.
Q: What causes the imbalance?
A: The imbalance comes about because you get an infection, or you've been on antibiotics, or because of the diet you're on. So if you have the right genes and there is an alteration in the bacteria, you can come down with Crohn's Disease.
Q: It sounds painful. Is it scary for the patients?
A: Sometimes the disease starts in a very insidious way, where patients just have some pain and it progresses gradually to diarrhea. Because it progresses slowly ... a common fallacy is that it's confused with Irritable Bowel Syndrome. But that doesn't tend to progress to the bloody diarrhea stage and doesn't cause the weight loss that Crohn's does. Crohn's is hard to pick up in the early stages, because it mimics other things ... like bacterial infections of the large intestine ... food-borne illnesses.
Q: How long do food-borne illnesses last?
A: A week or two, whereas Crohn's goes on and on. That's how people get referred to a gastroenterologist, when it doesn't go away.
Q: How do you know if it is Crohn's or another Inflammatory Bowel Disease such as ulcerative colitis?
A: Fifteen percent of the time, we can't tell if a patient has one or the other. Those 15 percent of people have a difficult road. Treatment (of the two) is very similar; the long-term prognosis is different.
Q: How do you distinguish between the two?
A: Crohn's can affect any part of your GI (gastrointestinal) tract from mouth to anus, and Crohn's has some peculiar features, specifically fistulas, which are draining tracts of pus that go from your intestine out to your skin and ooze. They are very painful and difficult to get rid of. Patients also can develop abscesses, especially around their rectum, and they also can get mouth ulcers and inflammation in their stomach and small intestine.
Q: What happens in ulcerative colitis?
A: In ulcerative colitis you are only affected in your colon, and the rest of the GI tract is spared. There seems to be a higher incidence of colon cancer in ulcerative colitis than Crohn's, so those who have had it more than 10 years need to get colonoscopies every year to make sure they're not getting colon cancer.
Q: Aside from the symptoms you've described, how does Crohn's affect its patients emotionally and socially?
A: It's pretty devastating, especially to children. Part of what's terrible beyond the pain and embarrassment ... is that patients live in fear of not only having a relapse, but of needing to be near a bathroom all the time ... in case they need to run. Children often are teased because they have to go to the bathroom often, and teachers also don't always understand.
Q: Does that make them withdraw or need counseling?
A: Some people get very depressed, especially those who need to be in control, because you never know when it's going to rear its head. Stress does tend to trigger flareups, although it doesn't cause the disease, so every year when kids go back to school, we tend to see a lot of flareups.
Q: What about dealing with the visible signs of the disease like the sores?
A: You can imagine that's difficult. Also, the major mainstay of treatments is still steroids. They have side effects: they make you gain weight, your cheeks puff out, they give you insomnia, make you hairy, you stop growing and they give you acne.
Q: Is there a cure?
A: No. There are drugs that can control the disease and make it livable. We know that genetics play a huge role; there are probably seven or eight genes that you inherit that give you the susceptibility to Crohn's. There's a major worldwide effort to find those genes, and the first one was found last year.
Q: What are the treatments?
A: In the last two years a new drug has come out, Remicade, that has really improved the quality of life for people with Crohn's. It's an antibody engineered in the lab that blocks a substance call TNF Alpha, which causes inflammation. By blocking it, people can go into remission, using a lot less steroids than they did in the past. It works for a majority of Crohn's patients, but only about half of ulcerative colitis patients. G-Mercaptopurine is a drug that really works well to keep patients in remission. You can't use it as a first-line drug, because it takes two-to-three months to start working, but it works to keep you in remission.
Q: Do these diseases affect the body outside the GI tract?
A: They are commonly thought to affect just your bowel, but they can also cause eye problems, joint problems, skin rashes. They're really systemic illnesses that affect your entire body and the way you feel.
Q: Are there treatments besides medication?
A: A lot of patients in the course of the illness have to have surgery; it is curative in ulcerative colitis. When you take out your colon it goes away. Unfortunately in Crohn's Disease it doesn't get rid of the disease, and it can recur at the site of the old surgery.
Q: Do you live with a lot of heartbreak?
A: I see a lot of heartbreak, but I also am hopeful when I see people take their medicines and I see a lot of improvement. I also think that within our lifetime, there will be a cure.