physician, as opposed to the wireless capsule endoscopy, where the progress through the intestinal tract is largely determined by contractions of the small intestine.
Biopsies
Endoscopy also allows the operator to perform biopsies of the inner lining of the gastrointestinal tract. Small samples are taken with a tiny instrument with small jaws that can cut or pull off pieces of the inner lining. This part of the procedure is not painful; usually, the patient is not aware that it is happening. The biopsy process is very safe; complications, such as serious bleeding, are extremely uncommon.
In some instances, biopsies are done to screen for precancerous changes. Some patients with IBD involving the large intestine for more than 8 to 10 years are at increased risk of colon cancer, and their physicians may recommend a surveillance program that involves regular colonoscopy with many biopsies taken throughout the colon.
Rule Out Other Conditions
Biopsies are usually taken to confirm the suspected diagnosis of IBD and to help rule out other conditions, such as infection. As surprising as it may seem, biopsies do not always provide 100% certainty about the diagnosis, particularly when distinguishing between Crohn’s disease and ulcerative colitis. Other information, such as the location of the inflammation or other associated features, provides more assistance in diagnosis.
Prognosis
Once the diagnosis of IBD has been confirmed using one or more of the available investigations, some of that information can be used to help the physician determine the severity and prognosis of a patient’s particular IBD. However, even with the most complete diagnostic staging, the ultimate prognosis can be unpredictable, varying from person to person with the same disorder. Patients naturally have many pressing questions about the course of their disease, which are asked and answered in the next chapter.
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.
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
