Crohn's and Colitis. Dr. Hillary Steinhart

her doctor set out to give her the information she needed to cope with her uncertainties and anxieties. Every person with IBD is unique, he told her. Just because someone she knows had a difficult time does not mean that she necessarily will. IBD is not a fatal condition, he assured her, and the majority of individuals with IBD lead productive lives — they are able to complete their studies, go to work, and have a family.

      Kelly had many more questions to ask, but for now, her doctor provided her with some links to some valuable and credible websites, while cautioning her against relying on websites from unrecognized sources and discussing her disease with others in Internet chat rooms or bulletin boards. If she ever felt concerned about the reliability of the information she was finding from any source, he welcomed her to discuss it with him.

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Frequently Asked Questions

      If you or a member of your family has been recently diagnosed with inflammatory bowel disease, you will likely have a number of puzzling questions, concerns, thoughts, and feelings about this condition. Different individuals have different ways of responding to bad news. For some people, there will be fear and anxiety; for others, there will be anger; for still others, there will be sadness. Some will take the news in stride, seeing the disease as a challenge, an obstacle that needs to be overcome like any other challenge they might encounter day to day. Some people will try to deny their illness or try to minimize its significance. None of these feelings or approaches to coping with disease is wrong, as long as it does not prevent the IBD sufferer from obtaining advice and care from medical professionals.

      In most cases, you will know very little about the disease, which is to be expected, since most of us, unless we work in the health-care field or have a friend or relative with IBD, may not have even heard about these disorders. You will probably want to ask a number of very specific questions, even if you already know someone with IBD or if you have learned about IBD through some other means. Ask your doctor all the questions that come to mind. The answers to common questions about the course and prognosis of IBD are addressed in this chapter.

       Coping with Knowledge

      One way of coping with this disease is to learn as much as possible about it. In most instances, this will help you to reduce fear and anxiety, even anger and sadness.

       Frequently Asked Questions about Prognosis

      •Can I die from this disease?

      •Will the disease get worse?

      •Can my condition improve?

      •Can I still go to school?

      •Can I get and keep a job?

      •Will I need to be hospitalized?

      •Will I need to have surgery?

      •Will I need a “bag” outside my body to collect stool?

      •What lifestyle changes will I need to make?

      •Will I be able to become pregnant?

      •Can I take my medication during pregnancy?

      •Will my condition flare during pregnancy?

      •Will this disease affect the birth of my child?

      •Can I travel if I have IBD?

Can I Die from This Disease?

      When someone is diagnosed with inflammatory bowel disease, the first thought that may enter the mind is “Can I die from this disease?” With improvements in the medical and surgical management of IBD, death as a result of IBD or one of its complications is exceedingly rare today, nor is life expectancy shortened.

       Life Expectancy

      Fortunately, death due to IBD is a rare occurrence and, on average, the life expectancy of people with IBD appears to be pretty much the same as people without IBD.

      While some older studies from the 1950s, 1960s, and 1970s suggest that the risk of dying is increased in people with IBD, these studies examined patients who had the disease before many of the modern advances in the medical and surgical care of IBD patients existed, which may have accounted for the slightly higher mortality rate. However, there does appear to be an increased mortality risk in the first year after diagnosis.

      In some instances, surgery may be delayed unnecessarily, leading to more complications and, ultimately, death. Doctors, patients, and their families are sometimes reluctant to consider surgery at the time of diagnosis, even when it may be the most appropriate way of managing the disease if it is very severe. This reluctance may be partly due to the feeling on the part of the doctor that medication should be given a chance to work. Because the patient and the family are not yet familiar with the disease, they may not have come to terms with the need for surgery.

       First-Year Risk

      Recent studies have suggested that there may still be a slight increased risk of dying in the first year after diagnosis, but after the first year, the risk appears to be no different than in someone without IBD. The reason for this increased risk of dying in the first year after diagnosis is not very clear, but it may be due to the fact that some individuals with IBD will first present with very sudden onset of severe symptoms and severe inflammation, with the result that the correct diagnosis may not be made soon enough to begin proper treatment.

Will the Disease Get Worse?

      Predicting the course of the disease in a given individual is very difficult. However, this is something that almost every patient who has been recently diagnosed with IBD wants to know.

      Both Crohn’s disease and ulcerative colitis are chronic, lifelong disorders that have a tendency to fluctuate in severity over time. The disease seemingly gets better or worse on its own for no apparent reason. It is not uncommon for a person with IBD to be quite well for a period of months or years, only to experience a flare or recurrence of symptoms over a period of days to weeks. Similarly, some people go on for many months or, in some cases, for years with chronic symptoms that do not respond to treatment, only to find that for some reason the symptoms begin to improve on their own.

       Risk Profiles

      The use of steroid medication for the first flare of disease tends to predict a poorer prognosis. However, this higher risk is probably not entirely due to the medication itself worsening the prognosis; rather, the fact that the doctor chose to use this potent medication indicates that the disease is, in the doctor’s overall opinion, relatively severe and requires this medication to treat. In forming this opinion, your doctor typically uses a number of clinical clues based on their experience that tells them that the patient’s disease is more severe and more likely to develop complications or require surgery.

      How these clues can help predict the prognosis, for an individual patient, with a high degree of reliability has been the subject of much research. It seems that using individual patient risk profiles, consisting of a combination of factors taken together, may provide the best chance for evaluating prognosis. These risk profiles have traditionally been based on patient factors and disease factors, such as the age of first diagnosis, location of disease, severity of the first attack, and the appearance of the intestinal lining during colonoscopy.

      These work reasonably well, but probably not well enough to help patients and doctors make decisions about disease management in individual patients. More recently, attempts have been made to incorporate blood tests and genetic tests into the risk profiles of patients.

       Right Patient, Right Time, Right Treatment

      It is likely that, over the coming years, the ability to predict disease course and prognosis in individual patients will become much more accurate, to the point that these risk profiles can be used to make management decisions in individual patients. Using this type of risk assessment will help to