Disease Course and Surgery Rates in Inflammatory Bowel Disease

A Population-Based, 7-Year Follow-Up Study in the Era of Immunomodulating Therapy

Marianne K. Vester-Andersen MD; Michelle V. Prosberg MD; Tine Jess MD, DMSci; Mikael Andersson MSc; Bo G. Bengtsson MD; Thomas Blixt MD; Pia Munkholm MD, DMSci; Flemming Bendtsen MD, DMSci; Ida Vind MD, PhD


Am J Gastroenterol. 2014;109(5):705-714. 

In This Article

Abstract and Introduction


Objectives: In this population-based 7-year follow-up of incident patients with ulcerative colitis (UC) or Crohn's disease (CD), we aimed to describe disease progression and surgery rates in an era influenced by the increased use of immunosuppressants and the introduction of biological therapy.

Methods: From 1 January 2003 to 31 December 2004, all incident cases (562) of patients diagnosed with UC, CD, or inflammatory bowel disease unclassified in a well-defined Copenhagen area were registered. Medical records were reviewed from 1 November 2011 to 30 November 2012, and clinical data were registered. Clinical data on surgery, cancer, and death were cross-checked with register data from national health administrative databases in order to include missed data.

Results: In total, 513 patients (213 CD and 300 UC) entered the follow-up study. Twenty-six patients changed diagnosis during the follow-up. Changes in disease localization and behavior in CD according to the Vienna classification were observed in 23.9% and 15.0% of the patients, respectively, during follow-up. In total, 28.3% of the 300 UC patients had disease progression during the follow-up. The overall use of systemic steroids, immunomodulators, and anti-tumor necrosis factor agents in CD was 86.4%, 64.3%, and 23.5%, respectively. The rate of first-time intestinal resection in CD was 29.1% (n=62), and the 7-year cumulative risk was 28.5%. The cumulative risk of colectomy in UC was 12.5% at 7 years.

Conclusions: UC and CD are dynamic diseases that progress in extent and behavior over time. The resection rate in CD and the colectomy rate in UC are still relatively high, although the rates seem to have decreased compared with historic data, which could be due to an increase in the use of immunomodulating therapy.


The disease course of ulcerative colitis (UC) and Crohn's disease (CD) is characterized by periods of inflammatory activity alternating with periods of remission. In periods of activity, patients frequently suffer from fatigue, abdominal pain, diarrhea, and weight loss. The disease often affects individuals of younger age, and the risk of low quality of life due to chronic illness, together with hospital admissions, is associated with a higher risk of permanent work disability.[1]

Certain patients experience an aggressive disease course, whereas others have indolent disease with only few flare-ups.

The clinical course of inflammatory bowel disease (IBD) has been assessed in population-based studies, which are often register based, retrospective, or based on data collected from referral center settings. Furthermore, population-based cohort studies may comprise both prevalent and incident cases, and follow-up is often difficult to accomplish because of the emigration of patients or the referral of patients to other hospitals. In referral center studies, the patient group is often strongly selected and therefore not representative of the entire IBD population. Inception cohorts, in contrast, describe the true incidence of disease and enable investigators to evaluate general disease outcome over time, according to the duration of disease. True clinical inception cohorts with follow-up are relatively uncommon.[2–8]

During the past two decades, the medical treatment regimens for IBD have changed with the more widespread use of immunosuppressants and with the introduction of biological therapy. The course of disease in this era has, to our knowledge, not been previously assessed in an inception cohort.

In 2003–2004, all incident cases of UC, CD, and IBD unclassified (IBDU) were registered in Copenhagen, Denmark. The aim of the present follow-up study of this cohort was to describe disease course, surgery rates, and survival status in incident cases of UC and CD in the era of immunosuppressants and biological therapy.