How Likely Is Crohn's Disease After J-Pouch Surgery?

Discuss the Possibility With Your Healthcare Team

People with inflammatory bowel disease (IBD) sometimes have surgery as a treatment for their disease. The two main forms of IBD, ulcerative colitis and Crohn's disease, are treated with different types of surgery. With Crohn's disease, which can affect both the large and the small intestine, a resection to remove an inflamed section of intestine is the surgery most frequently done. In some cases of Crohn's disease, ostomy surgery—either temporary or permanent—may also be done. For ulcerative colitis, which only affects the large intestine, the most preferred surgery is the ileal pouch-anal anastomosis (IPAA), which is more commonly known as a j-pouch. It's estimated that 30% of patients with ulcerative colitis eventually need surgery to treat their disease.

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What Is J-Pouch Surgery?

In j-pouch surgery, the large intestine is removed and the last section of the small intestine is reworked to create a pouch (often in the shape of a "J," though other shapes are also sometimes done). The j-pouch is connected to the anus, which means that a patient can evacuate more "normally." The large intestine is gone, but there is not a need for the creation of a stoma and the wearing of an external appliance to collect stool. 

The j-pouch is typically not done for Crohn's disease. The primary reason for this is because Crohn's disease can affect the pouch (which is made out of the ileum) after its creation. If a j-pouch becomes inflamed, it might lead to complications and the eventual failure of the pouch. A failed j-pouch would mean more surgery to remove it and to create an ileostomy. More surgery, of course, wouldn't help improve a patient's quality of life.

When Crohn's Is Found After J-Pouch Surgery

In some cases, people who have been diagnosed with ulcerative colitis are later found to actually have Crohn's disease. This sometimes does happen after a patient has undergone j-pouch surgery, though it is not common. These patients may have actually had Crohn's disease from the beginning, even though that was not the original diagnosis. Part of the reason for this is that Crohn's disease sometimes affects just the large intestine (called Crohn's colitis), making it appear as if ulcerative colitis is the true diagnosis. As time goes on, and some of the signs or symptoms of Crohn's disease become apparent, the diagnosis may be changed.

Naturally, some people with IBD who are considering 1, 2, or even 3 surgeries to create a j-pouch may have serious concerns over the possibility of a change in diagnosis from ulcerative colitis to Crohn's disease.

How Common Is a Diagnosis Change?

Several studies have looked at the number of patients who have been diagnosed with Crohn's disease after j-pouch surgery. The percentages of those rediagnosed ranges from less than 1% to a high of 13% in one study. The authors of the study reporting the highest percentage point out that their results seem high even to them. They go on to say that they recognize that it doesn't track well with most other studies, which are in the 10% and lower range. Most studies from the last several years put the percentage closer to about 5% because the ability for clinicians to diagnose the correct form of IBD is improving. The percentages are different between different surgical centers that perform the IPAA surgery. In one study done on children with ulcerative colitis or indeterminate colitis, the diagnosis of Crohn's disease after surgery was 13%.

The surgeons at the Cleveland Clinic (a major center of excellence for IBD and j-pouch surgery) report their number of patients being diagnosed with Crohn's disease after IPAA surgery is going down over time. As the process of accurate diagnosis improves, so the number of patients with a diagnosis change is decreasing.

Can We Predict Who Might Have Crohn's Disease?

There is no consensus on exactly how to identify patients diagnosed with ulcerative colitis that may later be discovered to actually have Crohn's disease. There is at least one study, however, that patients who were diagnosed with ulcerative colitis at a young age and also had extraintestinal complications were more likely to have a diagnosis change to Crohn's disease after j-pouch surgery. Pouch "failure" and eventually having the j-pouch removed are fairly common in patients ultimately diagnosed with Crohn's disease. However, for those who are able to keep their pouch and find that it functions well for them, there doesn't seem to be a difference in their quality of life and the quality of life for those who had IPAA surgery and have confirmed ulcerative colitis.

The Bottom Line

Being diagnosed with Crohn's disease after a diagnosis of ulcerative colitis and j-pouch surgery is a valid concern. The possibility should be discussed at length with the gastroenterologist and the colorectal surgeon before surgery is done, especially for people who were diagnosed at a young age or who have extraintestinal complications. Patients should ask their surgeons about the number of patients who have been rediagnosed after surgery. However, it's important to note that this is still not a common occurrence—the likelihood of a diagnosis change is decreasing over time as diagnostic techniques for IBD improve.

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By Amber J. Tresca
Amber J. Tresca is a freelance writer and speaker who covers digestive conditions, including IBD. She was diagnosed with ulcerative colitis at age 16.