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
The likelihood that the disease will progress or worsen depends, to some degree, on the extent of intestine involved. In general, disease that is more extensive — for example, Crohn’s disease that affects long segments of both the small and large intestines — may be more likely to remain active or worsen.
Can My Condition Improve?
The severity of Crohn’s disease and ulcerative colitis can fluctuate significantly over a period of days, weeks, and months without any apparent reason. Just as a flare can occur in someone who has been quite stable for many months or years, the symptoms of disease can mysteriously improve without any intervention on the part of the doctor and without an obvious cause. Individuals with mild disease may be able to afford to take a chance and wait a little while to see if their situation improves without treatment. That being said, it is unusual for someone with severe disease to improve without any treatment.
Successful Treatments
Most patients experiencing a flare of ulcerative colitis or Crohn’s disease require and request treatment. Patients are often given nutritional advice, with special diets being recommended in specific cases. They may also receive psychological support for managing their symptoms. Although IBD cannot be cured by drug therapy, a number of medications are helpful in reducing inflammation, reducing symptoms, and, in some cases, producing a full remission whereby the patient is free of symptoms. In some cases, surgery may be required, which often has a successful outcome in eliminating or managing symptoms. These various successful treatment strategies are discussed in detail in Part 2 of this book.
Spontaneous Recovery
Mild flares of IBD can sometimes go away without any additional treatment. This phenomenon has been well shown in clinical studies where patients with IBD receive placebo (inactive medication) as a means of comparing a new treatment to no treatment at all. Interestingly, the studies have shown that anywhere from 5% to 30% of patients treated only with placebo will experience improvement. The improvement is not necessarily complete, leading to remission, but it does indicate that the disease can improve without medication.
There have been a number of theories proposed to explain this spontaneous improvement, but no one knows for sure what factors are behind it. Improvements that occur without medication or without the addition of new medication could be due to changes in diet or stress levels, or possibly just a natural day-to-day or week-to-week fluctuation in an individual’s immune response. Researchers are working to determine why disease flares occur and how spontaneous improvements occur. This information may help to develop new ways of preventing disease flares and treating IBD.
Remission
In studies of patients with Crohn’s disease and ulcerative colitis, a proportion of the patients who receive no treatment will predictably experience improvement in their symptoms, and, in some cases, this improvement may be complete (although not necessarily permanent). This spontaneous improvement is more commonly seen in individuals with mild flares or mild symptoms. Simply monitoring a patient with a very mild flare may be a reasonable management approach in some instances.
Can I Still Go to School?
Because school-age children and young adults are the ones who are often diagnosed with Crohn’s disease or ulcerative colitis, these diseases can potentially interfere with getting an education.
Let your teachers know that you have IBD and explain the symptoms so they understand that you may be absent from school because of flares and doctor appointments. Teachers can accommodate students who may need to be excused during class or during an exam to go to the bathroom. If you need to be away from school for a prolonged period of time, for hospitalization or surgery, you may be able to arrange for assignments to be brought to you by friends or classmates. Some hospitals provide Internet access for patients who want to keep up on their studies. Some schools use the Internet extensively to post assignments and to provide a forum for feedback from teachers.
However, when you are sick and in hospital, you may not feel up to working or reading. Your ability to concentrate may be reduced. If you happen to be away from school for many weeks at a time and have not been able