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 increase the chance that the right treatment will be used for the right patient at the right time.
First Attack
There is no question that the severity of the first attack of IBD tends to predict the subsequent course of the disease. Not all of the subsequent flares are necessarily as severe as the first one, but they still cause symptoms, require treatment, and have a significant impact upon a person’s life. Patients with first attacks that are less severe tend to have a lower risk of having subsequent flares, but the risk is still present years after the original attack.
Frequency of Flares
When a flare of the disease occurs, there is usually no particular reason that can be identified for it occurring at that particular time in the course of a person’s disease. It is natural to try to attribute the flare to various events that may have occurred in someone’s life or to various foods that they may have eaten. For example, if you develop a flare of Crohn’s disease, you may say that it was because you were eating a lot of junk food or because you are very busy at work, under considerable stress, and not getting enough rest.
First-Flare Risk
In general, patients with severe episodes of IBD, especially those whose disease is severe enough to require treatment with a steroid medication, such as prednisone, will have approximately a 50% chance of having another flare within 1 year once the steroid medication is tapered off and discontinued.
Since Crohn’s disease and ulcerative colitis are quite variable in their presentation from person to person, it makes sense that the factors causing flares also vary from person to person. Identifying these factors requires careful observation by patient and doctor to determine what might bring on a flare. Identifying something that consistently triggers a flare in an individual can provide the opportunity to take steps to reduce that risk, steps that don’t necessarily involve the use of medication. However, in many if not most instances, a specific cause or trigger for a disease flare cannot be clearly identified. Even if someone with IBD can identify something that seems to bring on a flare, there is no guarantee that avoiding that trigger or minimizing its effect will necessarily allow them to avoid the risk of a flare altogether.
Severity of Disease
Some people will have very mild disease symptoms that don’t interfere with their day-to-day activities, whereas others will be almost incapacitated by the severity of the symptoms. It is difficult to predict which category someone will fall into when the disease is first diagnosed.
Increased Flare Risk
It is very difficult to attribute flares to specific life events or to specific foods. Researchers have studied this issue for many years, and no factor — not stress, not diet, not infections — consistently results in increased risk of flares or worsening of the disease.
Similar to the risk of flares, the chance of having more aggressive or severe disease tends to be higher if the first presentation is more severe. Exceptions do occur. Someone may have a severe flare at the first presentation, but once it has settled with treatment, the disease will go into a prolonged period of remission, during which time the person may have very few or no symptoms. This scenario is more common in individuals with ulcerative colitis than with Crohn’s disease.
Disease that is very limited — for example, ulcerative colitis affecting only the rectum — may not progress and worsen. In this case, the area of inflammation or disease usually remains confined to the rectum and remains stable for many years. However, in approximately 10% to 20% of patients, the inflammation will extend to involve more of the colon, and the patient may become much sicker and more symptomatic when a flare occurs.
Disease Extensiveness
