What is the prognosis of ulcerative colitis?

A patient with newly diagnosed ulcerative colitis (UC) will typically be aged 15–35 years and will already have suffered many of the troubling, embarrassing, and debilitating symptoms that characterize this chronic illness. They will want to know in succinct terms what to reasonably expect in the months and years ahead. This article provides a brief synopsis of the presentation, course, and long-term outcomes of UC. There are 4 general patterns that describe the clinical presentation and evolution of ulcerative colitis.1 1) In up to 90% of patients, UC follows the typical relapsing and remitting course. 2) Assuming the diagnosis of UC is correct, some patients may experience only 1 attack of the disease followed by long-term remission (18% at 5 years and 10% at 25 years). 3) Approximately 10% of patients with UC present with fulminant or intractable severe disease and, as such, will undergo panproctocolectomy on an urgent basis or within a year of diagnosis. 4) Finally, a very small percentage of patients (about 1% at 5 years and 0.1% at 25 years) will suffer from unremitting illness. The key predictors of the long- and short-term course of UC are: 1) longitudinal extent of colonic inflammation, and 2) clinical severity at presentation.2 Disease limited to the rectum represents about 40% of newly diagnosed patients, and 30%–40% of patients present with colitis confined to the left hemicolon. Total colonic involvement occurs in 20%–30% of patients and portends a poorer overall prognosis in terms of need for surgery3 and colon cancer risk.4 Severity is judged by a composite of clinical symptoms (e.g., frequency of bowel movements, hematochezia, fever, tachycardia) and laboratory parameters (e.g., C-reactive protein and hemoglobin) and by such indices about 80%–90% of patients at presentation will have mild–moderate disease.2 Reflecting severity and extent of disease, the required use of corticosteroid therapy at presentation is a marker of relatively poor prognosis. In a population-based cohort, only one-third of UC patients required steroid treatment at time of initial diagnosis, but half of these patients then required prolonged corticosteroid use or surgery.5 It is well described that UC tends to take a more aggressive course in nonsmokers or those who quit smoking. In addition to being protective against the development of UC, prior appendectomy in patients with UC tends to predict a milder course of the disease.6 There is some evidence that the severity of UC in an individual diminishes over time. Numerous serological and genetic markers have been identified in inflammatory bowel disease (IBD). There is promise that combinations of such markers may help define disease subsets and thus provide specific prognostic information to guide therapy.7 At present, however, testing for immunogenetic markers of IBD is not routinely available and there are not enough data to demonstrate a significant advantage over traditional clinical parameters in predicting the course of the disease. Proximal extension of UC does occur, usually early in the course of illness, and its likelihood relates to the initial extent of disease.3 Approximately 5% of those with proctitis and 20% of those with left-sided disease at the time of diagnosis will have more extensive involvement in 5 years. However, when observed for longer periods extension may occur in up to 45% and 70% of those initially diagnosed with proctitis and left-sided disease, respectively. The rate of panproctocolectomy for UC is ≈10% in the first year of illness, about 4% in the second year, and 1%/year thereafter.1,8 If colectomy is not required in the first 5 years of disease the likelihood of subsequently requiring colectomy for active disease is very low. Among those with pancolitis, the cumulative risk for colectomy is about 35% after 5 years, but even for those with only proctitis the rate of colectomy is still quite substantial, about 9%.1 More recent studies suggest that colectomy rates in UC are less than previously reported.9 The use of cyclosporine A (CsA) in hospitalized patients with refractory or fulminant colitis was shown to spare a significant number of patients from colectomy in the short term, but in longer follow-up at least half of patients require colectomy anyway.10 In many centers infliximab is replacing CsA as a surgery-sparing treatment in UC but enough data are not yet available on long-term outcomes.11 There appears to be an increase in mortality in the first few years after a diagnosis of UC, reflecting those with severe or fulminant disease and complications related to colectomy. Although the long-term survival of UC patients does not significantly differ from that of the general population, there is, however, excess mortality attributable to hepatobiliary disease and colorectal cancer (CRC).4 The risk of CRC begins to rise at 8–10 years after diagnosis of UC and, thus, it is recommended that endoscopic surveillance for dysplasia begin around this time. Due to biases and methodological limitations, early studies tended to significantly overestimate the risk of CRC in UC. Recent estimates show that the risk of CRC in UC is about 2% after 10 years, 8% after 20 years, and 18% after 30 years.12 Thus, the risk of CRC is 2–3× greater in patients with UC than the general population.13 CRC risk is greatest among those diagnosed at an early age (<15 years) and those with pancolitis.4 Coexisting primary sclerosing cholangitis and family history of colon cancer confer added risk of CRC in patients with UC. Quality of life (QOL) for patients with UC is impaired during periods of active disease and, even during remission, about one-third of patients continue to have impaired QOL due to physical symptoms consistent with irritable bowel syndrome. Disease-specific concerns include loss of bowel control, lack of energy, medication side effects, eminent flare of disease, and fear of colectomy or colorectal cancer, all of which significantly impact social and psychological functioning. To be sure, UC patients generally adapt well to their illness, and over 90% of UC patients feel that they have a normal physical activity level for their age and remain fully capable of employment.14 Individual patients with UC will have a highly variable experience and interpretation of their disease and, for the purposes of engaging trust and a facilitating a long-term therapeutic relationship, physicians should endeavor to ask about and understand the impact of UC on their patients' family, social, and professional lives.

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