Crohn's disease - Outlook

If you have been diagnosed with Crohn's disease, you will want to know your prognosis or outlook, a prediction of how your disease will progress. This varies from individual to individual. For example, it may be influenced by the severity and extent of your disease, and how well you respond to treatment. Your lifestyle may also influence the course of the disease.

It may help you at this stage to learn as much as you can about the condition and the treatment options available to you. Speaking to your doctor and asking questions will help. It may also be helpful to speak to others who are living with Crohn's disease to find out about how they cope with the illness. There are several international organisations dedicated to Crohn's disease that will be able to offer help at what may be a difficult time for you and your family - read more about these organisations Around the world.

I'd never heard of the condition before and neither had my parents - but I did a lot of research online after being diagnosed and my doctor helped explain things to me. Aimee

Many patients are young adults when they are diagnosed with Crohn's disease. If that is the case you may still be at school, or about to start university or a new job. You may be concerned about the impact of the diagnosisThe process of determining which condition a patient may have. on your family and friends, and how they will treat you. You may also have to make decisions about treatments, possibly including whether or not you will need to have surgery.

Crohn's disease may also be diagnosed in children, sometimes as young as one or two years old. As well as the usual problems, having Crohn's disease can slow down growth and delay puberty.

Having Crohn's disease can be especially frightening for a child. Specialist support groups can help - see the listings page Around the world.

Impact on quality of life

There is a good chance that Crohn's disease will not have a huge impact on your life. However, there may be some bad times (flare-upsTerm to describe episodes when the symptoms of a condition worsen.) that you need to cope with. Here are some facts to consider about Crohn's disease:

  • The course and severity of the disease can vary from person to person. About half of all diagnoses may be very mild forms; in others it can be more severe
  • The most common pattern is to have a period of good health, interrupted by episodes when the symptoms get worse. These episodes are called flare-upsTerm to describe episodes when the symptoms of a condition worsen. or relapses
  • About half of people with Crohn's disease have frequent flare-upsTerm to describe episodes when the symptoms of a condition worsen. and in about 15 per cent these can be severe
  • Some people have just one or two flare-upsTerm to describe episodes when the symptoms of a condition worsen. in their lives and remain symptom-free most of the time
  • About three-quarters of people affected are fully capable of work in the year they are diagnosed; around 15 per cent are unable to work five to ten years after diagnosisThe process of determining which condition a patient may have.
  • At least 50 per cent of people with Crohn's disease need surgical treatment during the first ten years of the disease; 70 to 80 per cent will need surgery at some point during their lifetime.

Of course I would like scientists to find a cure so that sufferers like my son and me can live without the pain of Crohn's disease. But until that happens, it is important just to get on and live your life as best you can. Alan

  • Some types of surgery involve forming a stoma, in which the gastrointestinal tractThe gut, which begins at the mouth and ends at the anus. is connected to an opening in the skin of the abdomenThe part of the body that contains the stomach, intestines, liver, gallbladder and other organs. through which waste is passed. This may be necessary if it is impractical to reconnect the ends of the bowel where a segment has been removed
  • You may be at risk of malnutrition due to poor absorption of nutrients. A dietitianA specialist in food and nutrition. can provide nutritional advice that will help.
  • Crohn's disease may slightly increase the risk for cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. of the gastrointestinal tractThe gut, which begins at the mouth and ends at the anus., although this is extremely rare
  • Although there is no cure for Crohn's disease, the condition can improve dramatically with treatment.

I began treatment straight away and was put on two medications... It's kept my Crohn's disease in remission for most of the time and, at the moment, I only have to go for check-ups every few months. Aimee

Complications

You may want to discuss with your doctor the possibilities of developing any complications from Crohn's disease, which can include:

  • Intestinal blockage or obstruction caused by stricture or adhesionsAn abnormal connection between two surfaces of the body.
  • Fistulae
  • Perianal disease
  • Abscesses
  • Ileocolonic disease
  • Acute dilation
  • Perforation of the gastrointestinal tractThe gut, which begins at the mouth and ends at the anus.
  • Toxic megacolon
  • Severe bleeding.

If Crohn's disease affects the small intestineThe section of gut, or gastrointestinal tract, from the stomach to the anus., there is a small increase in the risk of cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. occurring in the inflamed areas of the ileumThe last part of the small intestine., the lower part of the small intestineThe section of gut, or gastrointestinal tract, from the stomach to the anus.. There may also be a slightly increased risk in other parts of the gastrointestinal tractThe gut, which begins at the mouth and ends at the anus. that are affected by Crohn's.

It is important to remember that this is extremely rare and the vast majority of people with Crohn's disease will not develop cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body..

At some point in the course of your disease, you may be offered regular screening for cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. with colonoscopyExamination of the colon and rectum with a colonoscope, an imaging instrument that is inserted through the anus. and biopsies. This can allow early detection, leading to prompt and successful treatment.