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Questions About Medications
The big questions my patients ask me are if they are going to be on medications all the time, and if they will have a normal life. I always try to be very open in talking to them about these things. I stress that the IBD will be there throughout their lifetime; it is chronic, and has remissions and exacerbations. But I also talk about the positive aspect: that many people are completely asymptomatic and can function well. We give them examples of athletes and presidents who have had this disease and are functioning extremely well.
People also ask about medication side effects, and we do talk to them about the side effects of these medications. Sometimes that creates more anxiety, but we need to tell them. Usually we talk about options, and sometimes we discuss together some of the different medications that can be used. But in some ways they don’t have a choice, because they become dependent on the medications. I tell people to be knowledgeable about the side effects, to try to prevent them from happening, and to try to pick them up as they are occurring.
Samuel Nurko, MD, Physician, Gastroenterology Program
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Normal Life
Once they know the diagnosis, most parents of children with a chronic illness, want to know if their child is going to have a normal life. If the child is a girl, they want to know if she’ll be able to have children. They are most concerned about the future, immediate and the long term. I always say, “Yes, they are going to have a normal life.” Everybody’s experience with Inflammatory Bowel Disease is different, and I can’t predict how it is going to be for them or their child, but chances are good that they are going to have a normal life: they will go to a good college, have a satisfying career and a happy family. There is no reason for anything bleaker than that. There is a time to discuss possible complications, and we do discuss that, but I think that with help, parents generally develop a realistic outlook on things. That view can either be optimistic or pessimistic. I have great faith in positive thinking, and I feel that this can make a great difference; I think that positive thinking and a positive attitude can bring more positive results.
Mary Alice Tully, RN, PNP, Gastroenterology Program
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Long Term Outlook
I think that families are very concerned about what the long-term outlook will be for their children with inflammatory bowel disease. They have many questions about complications, about how their child will cope with the illness, and about what they are ultimately going to be able to do. I get two classes of questions: one is about the details of managing their disease, and the other, more difficult one, is about the long term outlook for these kids, and about what it means to have Inflammatory Bowel Disease and to have a chronic illness.
I think that having Inflammatory Bowel Disease should not limit a child from reaching his or her potential. I’m very optimistic about the message that we give to kids. I certainly have had patients who have gone to the best colleges, patients who have been state champion athletes, and patients who have grown up and have their own families. So what I like to give parents is the sense that even though their child has this illness, they can have a normal life.
Alan Leichtner, MD, Chief of the Division of Gastroenterology and Nutrition
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Talking to Families About a Diagnosis
It’s a scary illness for a kid. Basically, there are two major types of IBD: one is called Crohn’s disease and the other is called ulcerative colitis, and they present in very different ways. Ulcerative colitis is inflammation limited to the large intestine, and it almost always presents with bloody diarrhea. It is fairly easy to figure it out because bloody diarrhea is a pretty dramatic symptom, so these folks go to their doctors, and it’s picked up pretty quickly. There the goal is obviously to stop the bleeding and make the bowel movements more normal, and ideally we’d like to do it without too many medications. Crohn’s is a little more challenging because Crohn’s can involve many different areas of the intestine. There are probably several different kinds of Crohn’s disease, but the most common one that we see is limited to the last part of the small intestine and the first part of the large intestine, and these patients often get missed for six months, a year or sometimes even longer; they’ve been sick for a long time. The symptoms are subtler: they could be weight loss, not growing, unexplained fevers, or sometimes it can be bloody diarrhea.
The first thing that we tell families once we’ve made the diagnosis is what disease they have, and the next thing I like to tell them is that these diseases are chronic serious illnesses, but almost all of the kids that I have taken care of throughout the years have gotten better, one way or another. They grow up, have children, and have grandchildren. They go on to do something productive. That’s really the first thing that I talk about. The next thing that I try to talk about is getting them to understand that the fact that this is a chronic illness doesn’t mean that they’re going to be sick every day. I usually use the analogy of asthma. You can have asthma, and if you have asthma you have it for your whole life, but that doesn’t mean that you’re wheezing every day. The same is true with this bowel problem: you’ll have flare-ups where you’re having bloody diarrhea, and then periods of remission where you’ll feel fine. And that’s my job: to make sure that you’re feeling fine as long as possible.
No one knows the precise cause of either Crohn’s or ulcerative colitis. We believe that it’s genetic. We know that the immune system has something to do with it, and like other illnesses, like arthritis, we know that it’s cells turning on the body. That’s important to understand because most of the medications we use are immunosuppressants.
We also talk to families a little bit about stress. This is the stress primarily of having a chronic illness, and I emphasize that the illness is not caused by stress, which is another assumption that people make. This is not a bowel problem that was brought on by stress, but stress can be an amplifier.
Athos Bousvaros, MD, Associate Director, IBD Program
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