Prognosis and followup

Whether children with ulcerative colitis are treated medically or surgically, they have an excellent long-term prognosis and good quality of life. The majority of children with ulcerative colitis respond to medical therapy. In one American retrospective study of 171 children ranging in age from 1.5 to 17.7 years, diagnosed with ulcerative colitis between 1967 and 1994, 43% had mild disease at presentation and 57% had moderate or severe ulcerative colitis. With treatment, 70% of all the children were in remission within 3 months of diagnosis and, by 6 months, 90% of the children with mild disease and 81% of the children with moderate-to-severe ulcerative colitis experienced resolution of their symptoms. In each yearly follow-up period, approximately 55% of the children were symptom free, 38% experienced chronic intermittent symptoms and 7% had continuous symptoms.264 In this same study, children with mild ulcerative colitis at presentation had a lower frequency of colectomy than children with moderate-to-severe ulcerative colitis (9% vs. 26% at 5 years, respectively). Patients with left-sided disease had comparable rates of colectomy at 5 years to patients with pancolitis.264 However, the authors cautioned that the number of patients in each subgroup of disease extent was small, and a true difference in colectomy rates may have been missed secondary to insufficient power of the study.264 Another study of 80 children diagnosed with ulcerative colitis before the age of 15 years reported a slightly higher rate of remission of 60-70% in each of the first 10 years, after the year of diagnosis.3 In the same study, the cumulative probability of colectomy was 6% after 1 year and 29% after 20 years.3

Limited distal ulcerative colitis (proctitis or proc-tosigmoiditis) diagnosed in adults and children can extend further to involve more proximal colon with time.297-300 In a retrospective study of 38 children (mean age 11.6 years; range 4.2-17.7 years) diagnosed with ulcerative colitis proctitis between 1975 and 1994, 29% of the children developed extension of disease involvement beyond the rectosigmoid.299 Another retrospective evaluation of 85 patients under 21 years of age, diagnosed with ulcerative colitis proctosigmoiditis between 1958 and 1983, demonstrated the extension of disease to the descending colon in 20% and to the hepatic flexure or beyond in another 38% of the patients.300 The extension of disease may warrant a change in medical therapy to control disease activity and may have implications for an increased risk of potential colorectal cancer in the future.301

Women with ulcerative colitis generally experience similar rates of fertility to those of the general population; however, an increased risk of preterm births has been reported in some studies.302-304 In contrast, women with ulcerative colitis who undergo proctocolectomy with IPAA may experience reduced fertility.305

Individuals with longstanding ulcerative colitis are at increased risk of developing colorectal cancer.301,306,307 Risk of colorectal cancer increases with more extensive colonic involvement and longer duration of disease since diagno-sis.301,306-309 Therefore, children with ulcerative colitis will potentially be at risk for colorectal cancer over a longer period of time, compared to individuals with adult-onset ulcerative colitis. In a population-based cohort study in Sweden, Ekbom et al reported standardized incidence ratios for colorectal cancer of 1.7 for ulcerative colitis proctitis, 2.8 for left-sided ulcerative colitis and 14.8 for ulcerative colitis pancolitis.307 The absolute risk (cumulative risk) of colorectal cancer 35 years after diagnosis was 30% for patients with pancolitis at diagnosis for the entire cohort (adults and children), but 40% for individuals diagnosed with pancolitis at less than 15 years of age.307

Individuals with PSC and ulcerative colitis have a higher risk of developing colorectal neoplasia compared to those with ulcerative colitis alone, and of developing cholangiocarcinoma.310-314 Ursodeoxycholic acid (UDCA) may decrease the risk for developing colorectal dysplasia or cancer in patients with ulcerative colitis and PSC.315 Other risk factors reported for colorectal cancer in patients with ulcerative colitis include a family history of colorectal cancer316 and the occurrence of backwash ileitis.317 In contrast, some retrospective studies suggest that 5-ASA agents may provide a protective effect in the development of colorectal cancer in patients with ulcerative colitis, but not all studies support these findings.190,191,193,318 A retrospective, case-control study suggested a risk reduction of colorectal cancer in ulcerative colitis with folate supplementation, but the findings were not statistically significant.319 The role of pharmacological therapy and vitamin supplements in the development of colorectal cancer in patients with ulcerative colitis remains controversial.320 Further prospective studies are needed to evaluate the potential risk reduction (preventive) effects of folate and 5-ASA agents.192,321,322

There are no randomized controlled trials examining the effectiveness of surveillance colonoscopy for dysplasia and colorectal cancer in patients with ulcerative colitis.323,324 The reported general current practice includes surveillance colon-oscopy every 1-2 years beginning at 8 years after the diagnosis of disease for pancolitis and 15 years in those with left-sided colitis.324 However, it may be prudent to perform the initial surveillance colonoscopy beginning at 8-10 years after diagnosis in all patients with ulcerative colitis, in order to reassess the true extent of disease.324 The consensus recommendations suggest that biopsy specimens should be taken every 10cm in all four quadrants and additional biopsies should be performed for strictures and mass lesions.324 It is not clear whether surveillance practice should differ for patients with younger-onset ulcerative colitis. There are no published formal recommendations to guide surveillance colonoscopy in children.323

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