Decision Report 201203417

Summary

Miss C complained that she was misdiagnosed in 2010 with ulcerative colitis (where ulcers form in the large intestine and rectum (the terminal part of the large intestine). She said that when she was offered a surgical procedure in 2012 this was inappropriate as her actual diagnosis was of Crohn's Disease (where the small intestine becomes inflamed, thickened and ulcerated).

Ulcerative colitis is one of a range of conditions known as Inflammatory Bowel Disease (IBD). Miss C had undergone an emergency ileostomy (where the damaged portion of the small intestine is removed and the remainder directed to an opening created in the stomach wall. The contents of the intestine are then emptied into a collection bag which remains in place for life unless the ileostomy is reversed.) In 2012 she was offered a reversal of the ileostomy as her condition had been stable for some time. After the reversal procedure Miss C experienced an increase in her symptoms and was admitted to hospital four times in the next few months. Her diagnosis was eventually changed to Crohn's Disease and she was advised to have her ileostomy reinstated. Miss C complained that as a result of her misdiagnosis she underwent two major but unnecessary surgical procedures as she had been told that Crohn's sufferers are 'never' offered reversal surgery.

After taking independent advice from one of our medical advisers, we did not uphold Miss C's complaints. We found that the original diagnosis of ulcerative colitis given to Miss C was not unreasonable. The adviser said that the conditions have similar symptoms but that Crohn's Disease classically involves the small intestine. In 2010 an internal examination had shown that Miss C had ulcers only in her large intestine.

The adviser also said that the offer of reversal surgery was reasonable, on the basis of the diagnosis of ulcerative colitis and in view of her condition being well managed at the time. The adviser also said that even had the original diagnosis been Crohn's Disease, it would still have been a reasonable decision, given Miss C's condition at the time. Some patients can experience an increase in their symptoms and a relapse of their condition following reversal and this is a risk that should be discussed with the patient before surgery is agreed. There was evidence in Miss C's clinical records that this was discussed with her at an out-patient appointment. Therefore, it was reasonable to offer the reversal and the resulting relapse could not be attributed directly to it. The adviser said that all IBD conditions are characterised by unpredictable symptoms and relapses, and made reference to the IBD Standards Working Group who issued national guidance in 2009.