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CHAPTER 3

What Can I Expect Now That I Have IBD?

CASE STUDY Kelly

After asking her doctor a host of questions about the symptoms and diagnosis of ulcerative colitis, Kelly was still upset because she knows of a boy who went to her high school who had ulcerative colitis. Her recollection of him was that he was sick for many days at a time. He finally had to take several weeks off school and have surgery. She is concerned that a similar fate awaits her and that she will fall behind in her university studies — or possibly even have to drop out. Even worse, she fears she may have to wear a bag to collect her stool. She has heard that people with colitis live shorter lives and are likely to develop colon cancer.

From her doctor, Kelly wants to know if the disease will get worse. What are the chances of her getting better? Will she require surgery and need a bag to collect her stool? Will she be able to live a full, productive life — complete her studies, go to work, have a family? Can she expect to live a normal life? Can she travel? And most urgently, can she die from IBD?

Again, 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.

(continued)

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 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

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 to keep up with work from home or hospital, you may require additional help from the teachers or tutors in order to catch up. In postsecondary education, because of the intensive nature of the workload and the relatively short semesters, catching up may not always be possible. In some instances, you may need to take a leave or drop some courses and make them up the following term. You can ask your doctor to write a supporting letter. Although it may take you longer to complete your degree or diploma requirements, you will be less stressed and get more rest.

No Reason to Despair

While IBD can pose challenges for students, they can be managed in cooperation with the school. There is no reason to despair or set your goals lower just because you have IBD.

Discrimination

You may fear that prospective employers will disqualify you for a job once they learn about your condition. However, you are not required to disclose illnesses or disabilities to a prospective employer, nor can the employer discriminate against someone based on a disability. In the province of Ontario, for example, the Ontario Human Rights Code prohibits discrimination in employment based on disability. In the United States, the federal disability laws forbid most employers from asking about the medical conditions of an applicant, although the United States Supreme Court has ruled that an employer can refuse to hire someone who has a chronic condition that may be made worse by the job. Precise laws and rulings vary from jurisdiction to jurisdiction, so it is best to check with human resources specialists, career or hiring coaches, or lawyers when deciding on whether to disclose your condition to a prospective employer.

A minority of students have symptoms that are severe enough or persistent enough to cause them to have to change their educational objectives. It is the unpredictability of the disease that causes IBD patients to change their school plans. Frequent disease flares in people with more severe disease can require relatively long absences from school, which can, in turn, have a negative effect on grades.

Can I Get and Keep a Job?

There are many IBD sufferers who have successfully completed their education and gone on to a variety of successful careers as teachers, executives, entrepreneurs, lawyers, professors, engineers, police officers, farmers, doctors, nurses, authors, artists, and professional athletes. IBD does not necessarily mean that you will be limited in your choice of careers or that you cannot excel at your job.

Disclosure

Employers may feel deceived if the condition is not disclosed to them during the interview process and the applicant then becomes ill or incapacitated shortly after hiring. You can take this opportunity to educate your employers about your condition, though you don’t need to give the details of all of your symptoms. In the end, you have to decide for yourself how much to disclose to the employer during the job interview process.

Keep in mind the perspective of your employers. They may not know much about the condition and may wonder if it will affect your work performance, if the disease is likely to progress, if the job will impact upon your condition, and if any modification in schedule or duties is required. Be prepared to answer these questions honestly. In addition to developing a more trusting relationship with the employer, disclosure may result in a more flexible work schedule or work conditions. Alternatively, you can make it clear that you don’t expect any special treatment.

More Understanding

Even if disclosure is not required by law, some people with chronic medical conditions prefer to disclose their condition to the employer during the interview process. If you disclose your illness to your employers, you may find that they are more understanding when you do have to take the occasional day or two off work because of your condition.

Disability

Although the majority of IBD sufferers are able to get and keep good jobs, there is a small proportion who have flares so frequently, or who have some degree of symptoms almost continuously, that they are not able to work. Eventually, they may need to go on short-term or long-term disability. Sometimes they are able to resume working on a limited basis if the disease can be controlled through medical or surgical management. Some people with severe symptoms gravitate to jobs where the employer is more sympathetic to their special needs or to jobs where there may be more flexibility in work hours. Many large companies have disability counselors who help people make the transition back into the workplace on a gradual basis by finding appropriate positions and work schedules that fit with their chronic symptoms.