The Prognosis for Crohn's Disease or Ulcerative Colitis

Many factors shape how people with inflammatory bowel diseases fare

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Crohn’s disease and ulcerative colitis are two forms of inflammatory bowel disease (IBD). These conditions are considered immune-mediated, which means that they involve the immune system. There is a genetic component to IBD as well—hundreds of genes have been found which may be connected to IBD. These conditions last throughout your lifetime, although symptoms will come and go. There is no cure for any form of IBD, but it is often well-managed through medications, surgery, and complementary therapies. This raises questions for many people who are diagnosed with IBD as to how the disease may affect them during their lives.

Crohn’s Disease

Some generalizations can be made about the prognosis for Crohn's disease but it is going to be different for every person. Crohn’s disease will cause mild symptoms for some and more severe for others. Most people will experience periods of active disease (flare-ups) and periods of remission (where there are few to no symptoms of disease). There is no cure for Crohn’s disease, though appropriate treatment can manage the disease well.

However, Crohn’s disease is not considered a fatal condition, nor does it shorten a person’s lifespan. There are cases where people do die from the complications of Crohn’s disease but for the most part, it is a chronic illness that needs management throughout a lifetime. Management includes seeing a physician (optimally, a gastroenterologist) on a regular basis and treating the disease with medication, complementary therapies, and lifestyle changes (usually some combination of all of these).

Surgery, however, is common in people with Crohn’s disease. Most people diagnosed with Crohn's disease will have surgery to treat their disease at some point in their lives. Approximately one-third of patients will have surgery in the first 10 years after diagnosis. Among the group that has surgery, 20% will need more surgery for their disease in the next 10 years.

People who live with Crohn’s disease in their colon, which is the form that’s called Crohn’s colitis, are at increased risk of developing colorectal cancer. The rate of colorectal cancer in people with IBD has been decreasing in recent years, which is thought to be a result of better management of the disease for many patients as well as better screening guidelines. Some of the risk factors that can increase the risk of colon cancer in people with Crohn’s disease include long-standing disease (which is often defined as eight to 10 years of inflammation), having one-third or more of the colon affected, and a family history of colon cancer. Other risk factors that are less common include a history of a liver condition associated with IBD, primary sclerosing cholangitis (PSC), and precancerous changes in the cells of the colon or rectum, which are found by examining a biopsy of those cells. While people who live with Crohn’s colitis have an increased risk of colon cancer, it’s important to remember that most people with IBD never develop colon cancer.

It is the “general consensus” that people with Crohn’s disease are at greater risk of developing small bowel cancer, but how much the risk is increased is not well understood. Small bowel cancer is rare even in the general population, so the absolute risk for people with Crohn’s disease is still thought to be low. Cancers in the small bowel have been found in people who have inflammation from Crohn’s disease in the small intestine and/or in the large intestine.

Ulcerative Colitis

The prognosis for ulcerative colitis is also individualized and is affected by a number of different factors. There is no cure for ulcerative colitis, though the disease can be managed through medications and/or surgery. For most people, the prognosis for the first 10 years after diagnosis is good. Most people are able to achieve remission. 

The rate of surgery (which is a colectomy) to treat the disease is low. It is estimated to be approximately 12% at 5 years after diagnosis and 15% after 10 years of diagnosis. However, this varies between studies. This rate is lowering over time as more people with ulcerative colitis are receiving treatment with biologic medications and suppressing inflammation long-term.

Ulcerative colitis begins in the last section of the colon and/or the rectum and in some cases, progresses up to the other sections of the colon. It’s estimated that in the 5 years after diagnosis, the disease progresses in 10% to 19% of patients. In the 10 years after diagnosis, this increases to up to 28% of patients. For about 5% to 10% of people with ulcerative colitis, the diagnosis may later be changed to Crohn’s disease. Ulcerative colitis doesn’t make a person more likely to die earlier than people who don’t live with the disease. However, the rate of disability in people who live with ulcerative colitis is higher.

People with ulcerative colitis are at an increased risk of developing colon cancer. Risk factors for colon cancer include earlier age at diagnosis, long-standing disease (eight years or more), and disease which extends further up into the colon, and a diagnosis of PSC. After eight years of disease, it may be necessary for those who are considered at greater risk of colon cancer to have a screening colonoscopy every one to two years. People with ulcerative colitis who are concerned about their risk of colon cancer should talk to their gastroenterologist about prevention and screening.

A Word From Verywell

The prognosis for IBD will depend on a number of different factors, including the severity of the disease, the age at diagnosis, and how well the inflammation is controlled. A key point to remember about living with IBD is that the inflammation needs to be controlled. It’s the inflammation in the digestive system and in other parts of the body caused by IBD that drives the risk for more serious disease and the related conditions that occur outside the digestive tract (extraintestinal manifestations). Managing IBD over the course of a lifetime requires the help of a gastroenterologist, as well as other specialists that may include a primary care provider, a colon and rectal surgeon, a mental health specialist, a dietitian, and others as needed. 

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