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, Nurse Practicioner
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
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, Former Chief of the Division of Gastroenterology and Nutrition