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• W2171460872 abstract "Background & Aims: The Manitoba Inflammatory Bowel Disease (IBD) Cohort Study is a population-based prospective cohort study of recently diagnosed IBD (n = 396). At enrollment, 162 (41%) indicated gastrointestinal symptom ≥3 years before diagnosis. We aimed to determine whether coexistence of irritable bowel syndrome (IBS) had a role in symptoms before IBD diagnosis. Methods: Patients were interviewed about symptoms and investigations before IBD diagnosis. Patients were assessed retrospectively for preexisting IBS. Results: Of 112 patients interviewed, 58% had Crohn’s disease, 37% UC, 3% proctitis, and 2% indeterminant colitis. Symptoms at IBD diagnosis were considered the same (7%), worse (43%), different (20%), or both worse and different (30%) than at initial onset. Mean time between initial symptoms and diagnosis was 11 years (range, 3–48 years). Increasing age at IBD diagnosis correlated with a longer period after initial symptoms and diagnosis of IBD (r = .32, P < .0001). Gender and specific IBD diagnosis had no effect on this time period. Patients were identified as no previous IBS (51%), likely IBS (25%), and possible IBS (24%). Those with likely and possible IBS had a trend toward longer symptom duration before IBD diagnosis than those without IBS (P = .07). Of the total IBD cohort (n = 396), considering only those with symptoms for ≥3 years before diagnosis, 14% were considered to have likely or possible IBS. Conclusions: These data suggest that older patients and those with likely and possible preexisting IBS are more likely to experience longer symptom duration before diagnosis of IBD. The prevalence rate of IBS was similar to estimated base rates in the general population. Background & Aims: The Manitoba Inflammatory Bowel Disease (IBD) Cohort Study is a population-based prospective cohort study of recently diagnosed IBD (n = 396). At enrollment, 162 (41%) indicated gastrointestinal symptom ≥3 years before diagnosis. We aimed to determine whether coexistence of irritable bowel syndrome (IBS) had a role in symptoms before IBD diagnosis. Methods: Patients were interviewed about symptoms and investigations before IBD diagnosis. Patients were assessed retrospectively for preexisting IBS. Results: Of 112 patients interviewed, 58% had Crohn’s disease, 37% UC, 3% proctitis, and 2% indeterminant colitis. Symptoms at IBD diagnosis were considered the same (7%), worse (43%), different (20%), or both worse and different (30%) than at initial onset. Mean time between initial symptoms and diagnosis was 11 years (range, 3–48 years). Increasing age at IBD diagnosis correlated with a longer period after initial symptoms and diagnosis of IBD (r = .32, P < .0001). Gender and specific IBD diagnosis had no effect on this time period. Patients were identified as no previous IBS (51%), likely IBS (25%), and possible IBS (24%). Those with likely and possible IBS had a trend toward longer symptom duration before IBD diagnosis than those without IBS (P = .07). Of the total IBD cohort (n = 396), considering only those with symptoms for ≥3 years before diagnosis, 14% were considered to have likely or possible IBS. Conclusions: These data suggest that older patients and those with likely and possible preexisting IBS are more likely to experience longer symptom duration before diagnosis of IBD. The prevalence rate of IBS was similar to estimated base rates in the general population. Along duration of symptoms before a diagnosis of inflammatory bowel disease (IBD) is thought to be common. These symptoms might represent the initial IBD-related symptoms or alternatively might represent other gastrointestinal symptoms not related to IBD. The duration of symptoms before firm diagnosis varies by specific diagnosis (Crohn’s disease vs UC) and by age.1Harper P.C. McAuliffe T.L. Beeken W.L. Crohn’s disease in the elderly a statistical comparison with younger patients matched for sex and duration of disease.Arch Intern Med. 1986; 146: 753-755Crossref PubMed Scopus (85) Google Scholar, 2Eisen G.M. Schutz S.M. Washington M.K. et al.Atypical presentation of inflammatory bowel disease in the elderly.Am J Gastroenterol. 1993; 88: 2098-2101PubMed Google Scholar, 3Foxworthy D.M. Wilson J.A.P. Crohn’s disease in the elderly prolonged delay in diagnosis.J Am Geriatr Soc. 1985; 33: 492-495PubMed Google Scholar, 4Stalnikowicz R. Eliakim R. Diab R. Rachmilewitz D. Crohn’s disease in the elderly.J Clin Gastroenterol. 1989; 11: 411-415Crossref PubMed Scopus (26) Google Scholar, 5Pimentel M. Chang M. Chow E.J. et al.Identification of a prodromal period in Crohn’s disease but not ulcerative colitis.Am J Gastroenterol. 2000; 95: 3458-3462Crossref PubMed Google Scholar Although it has been shown that UC is usually diagnosed much sooner after symptom onset than Crohn’s disease,5Pimentel M. Chang M. Chow E.J. et al.Identification of a prodromal period in Crohn’s disease but not ulcerative colitis.Am J Gastroenterol. 2000; 95: 3458-3462Crossref PubMed Google Scholar there is some controversy as to delay in diagnosis among the elderly versus younger patients.5Pimentel M. Chang M. Chow E.J. et al.Identification of a prodromal period in Crohn’s disease but not ulcerative colitis.Am J Gastroenterol. 2000; 95: 3458-3462Crossref PubMed Google Scholar, 6Wagtmans M.J. Verspaget H.W. Lamers C.B.H.W. et al.Crohn’s disease in the elderly a comparison with young adults.J Clin Gastroenterol. 1998; 27: 129-133Crossref PubMed Scopus (106) Google Scholar, 7Norris B. Solomon M.J. Eyers A.A. et al.Abdominal surgery in the older Crohn’s population.Aust N Z J Surg. 1999; 69: 199-204Crossref PubMed Scopus (24) Google Scholar Some studies show a delay in diagnosis of Crohn’s disease among elderly patients,5Pimentel M. Chang M. Chow E.J. et al.Identification of a prodromal period in Crohn’s disease but not ulcerative colitis.Am J Gastroenterol. 2000; 95: 3458-3462Crossref PubMed Google Scholar whereas others do not.6Wagtmans M.J. Verspaget H.W. Lamers C.B.H.W. et al.Crohn’s disease in the elderly a comparison with young adults.J Clin Gastroenterol. 1998; 27: 129-133Crossref PubMed Scopus (106) Google Scholar, 7Norris B. Solomon M.J. Eyers A.A. et al.Abdominal surgery in the older Crohn’s population.Aust N Z J Surg. 1999; 69: 199-204Crossref PubMed Scopus (24) Google Scholar Prolonged symptoms before a diagnosis of IBD could be related to a number of factors. There might be mild symptoms for which extensive investigations are considered unwarranted. Screening investigations might be undertaken but are not extensive, and the IBD is missed. The patient might be considered to have a convincing diagnosis of irritable bowel syndrome (IBS), and further pursuit of an IBD diagnosis is not undertaken. In these cases, the patient might or might not have both conditions. A patient might not seek medical attention because of mild symptoms or fear of medical involvement. Finally, patients might have a long duration of gastrointestinal symptoms that are unrelated to their ultimate diagnosis of IBD. In these latter cases there might not be a long delay in diagnosis of IBD but rather the appearance of a long delay, given a long duration of unrelated gastrointestinal symptoms. There is a great interest in understanding what role IBS plays in symptoms of patients with well-defined IBD, because its treatment is quite different than that of IBD. Although this is often discussed,8Bayless T.M. Harris M.L. Inflammatory bowel disease and IBS.Med Clin North Am. 1990; 74: 21-28PubMed Google Scholar it has rarely been rigorously studied. The lack of good evidence in this area might be a result of the lack of a gold standard “marker” of IBS, making the co-diagnosis of IBS in IBD problematic. For example, rectal hypersensitivity to balloon distention has been found to have some discriminative value in identifying IBS patients, but it was not useful in identifying any subgroup of IBD patients with IBS.9Bernstein C.N. Niazi N. Robert M. et al.Rectal afferent function in patients with inflammatory and functional intestinal disorders.Pain. 1996; 66: 151-162Abstract Full Text Full Text PDF PubMed Scopus (158) Google Scholar, 10Chang L. Munakata J. Mayer E.A. et al.Perceptual responses in patients with inflammatory and functional bowel disease.Gut. 2000; 47: 497-505Crossref PubMed Scopus (162) Google Scholar The Manitoba IBD Cohort Study is a prospective population-based study following almost 400 patients with IBD diagnosed within 7 years of enrollment, across multiple domains to explore predictors of disease outcome and behavior. For this substudy on duration of gastrointestinal symptoms before IBD diagnosis, this cohort provided a unique opportunity to explore the nature and duration of symptoms in greater depth for all those who reported at least 3 years of symptoms before diagnosis. We collected data on demographics, symptoms, duration of symptoms, and investigations performed before IBD diagnosis. Our aim was to determine reasons for the long duration of gastrointestinal symptoms before an IBD diagnosis. We were specifically interested in the effects of age, gender, IBD diagnosis, and the possibility of preexisting IBS. In 1995 the University of Manitoba IBD Epidemiology Database and the University of Manitoba IBD Research Registry were created.11Bernstein C.N. Blanchard J.F. Rawsthorne P. et al.The epidemiology of Crohn’s disease and ulcerative colitis in a central Canadian province a population-based study.Am J Epidemiol. 1999; 149: 916-924Crossref PubMed Scopus (542) Google Scholar Patients eligible for inclusion were identified through the population-based administrative health registry of Manitoba Health (the single provincial health insurer that provides comprehensive coverage to all residents of Manitoba) by using International Classification of Diseases-ninth revision-Clinical Modification codes 555 and 556 for Crohn’s disease and UC, respectively. Questionnaires were mailed to patients identified in the Manitoba Health registry, and 60% responded to this contact. Those who agreed to be included in a research registry and to be contacted for future IBD-related research studies were included in the University of Manitoba Inflammatory Bowel Disease Research Registry. Data extracted from the patient questionnaires as well as from random sample chart reviews led to the development of an administrative definition of IBD, which was used to create the University of Manitoba Inflammatory Bowel Disease Epidemiology Database and to verify incidence and prevalence rates. This methodology was repeated in 2000 to enhance the numbers of patients in the Research Registry. In 2002 when the Manitoba IBD Cohort Study was initiated, there were 3849 patients in the Research Registry. All individuals diagnosed with IBD within 7 years of potential study enrollment and at least 18 years old were identified from the Registry (n = 919), and the research team attempted to contact them to participate in the Cohort Study. Of these, 418 agreed to participate in the Manitoba IBD Cohort Study. Three hundred ninety-six proceeded to participation in the baseline phase, completing an initial survey and clinical interview. The Manitoba IBD Cohort Study is a population-based 5-year prospective outcomes study intended to follow patients semiannually with a series of questionnaires, clinical interviews, blood work, and chart reviews to determine disease outcomes and predictors of disease outcomes and patterns. The development of the University of Manitoba IBD Research Registry was approved by the University of Manitoba Health Research Ethics Board and the Health Information Privacy Committee of Manitoba Health. The Manitoba IBD Cohort Study was approved by the University of Manitoba Health Research Ethics Board. In the baseline survey, participants reported the duration of gastrointestinal symptoms before confirmed IBD diagnosis. Surprisingly, almost half of the cohort had 3 years or more of gastrointestinal symptoms from symptom onset to IBD diagnosis. We explored the nature of the pre-diagnosis symptoms and potential reasons for the duration of time between initial symptoms and IBD diagnosis among all those with at least 3 years of gastrointestinal symptoms before IBD diagnosis. We used a conservative estimate of less than 3 years to reflect a typical or natural trajectory of IBD diagnosis, taking into account gradual symptom onset, multiple investigations, and review by family physician and specialist. A random sample of 20% of those with gastrointestinal symptoms for 3 years or less before IBD diagnosis were contacted to serve as a comparison group. Between September 2004 and September 2005, patients meeting the above criteria were contacted for the telephone survey by the lead author. All individuals were asked a standard set of questions including age, gender, year gastrointestinal symptoms began, year of IBD diagnosis, nature of gastrointestinal symptoms before IBD diagnosis, and types of investigations at symptom onset and before IBD diagnosis. Events before IBD diagnosis such as initial symptoms, symptom frequency, course of symptoms, and hospitalizations were reviewed in detail. The investigative work-up before IBD diagnosis was differentiated from that performed at the time of IBD diagnosis. Questions considered whether there had been a prior diagnosis of IBS by a physician, and whether the patient was familiar with the difference between IBD and IBS symptoms. Patients were also asked whether they believed a long duration of symptoms before IBD diagnosis was related at least to some extent to a delay in finalizing an IBD diagnosis, and if so, to what they attributed that diagnosis delay. Finally, patients were asked, “Do you or did you have abdominal pain or altered bowel habit that you do not feel is due to your IBD?” Definitions of likely, possible, or no IBS were established a priori. Rome II criteria were not used as the ultimate diagnosis for IBS because of concerns that it would not adequately distinguish between IBD and IBS, and it would ignore other important clinical data.12Thompson W.G. Longstreth G.F. Drossman D.A. et al.Functional bowel disorders and functional abdominal pain.Gut. 1999; 45: II43-II47Crossref PubMed Scopus (2035) Google Scholar, 13Minderhoud I.M. Oldenburg B. Wismeijer J.A. et al.IBS-like symptoms in patients with inflammatory bowel disease in remission relationships with quality of life and coping behavior.Dig Dis Sci. 2004; 49: 469-474Crossref PubMed Scopus (204) Google Scholar Furthermore, there were concerns about patient recall for Rome II criteria, particularly for those with symptoms many years before their IBD diagnosis. Participants were subsequently classified as follows: 1likely IBS: 1 of 2 criteria had to be satisfied: (1) abdominal pain and either diarrhea or constipation plus an adequate pre-diagnosis work-up (see below) or (2) abdominal pain and either diarrhea or constipation plus new dramatic symptoms at time of IBD diagnosis (eg, blood in stool).2no IBS: patients had to report one of the following: (1) no abdominal pain, or absence of diarrhea or constipation; (2) no regular annual gastrointestinal symptoms (eg, remission of at least 1 year); (3) presence of blood in stool, not attributed to hemorrhoidal bleeding, as based on description; (4) gastrointestinal symptoms that were unchanged in nature or intensity throughout the years including at time of IBD diagnosis; or (5) symptoms consistent with IBD that could not be in keeping with IBS (ie, fistulas, abscesses).3possible IBS: all others not meeting above criteria. However, by above criteria, those in this category had the presence of abdominal pain and either diarrhea or constipation. A pre-diagnosis work-up was considered adequate if it included at a minimum blood work and a barium enema or small bowel follow-through. However, if a fistula or blood in stools was present, then colonoscopy was considered necessary. If these symptoms were absent but a colonoscopy was undertaken, that would also be considered adequate. Abdominal surgery was also considered adequate. Hence, the work-up before formal IBD diagnosis was considered (1) indicated, pursued, and adequate; (2) indicated, partially pursued, and inadequate; (3) indicated but not pursued; and (4) not indicated (symptoms were sufficiently mild). For those participants in whom no investigations were performed (categories 3 and 4), they were categorized as “no investigation indicated as symptoms seemed mild” or “investigation indicated based on symptoms (eg, blood in stool) but was not performed.” Data were analyzed by using χ2, Student t test, Mann-Whitney U test, and Pearson correlation test. The Student t test was used to compare mean duration of symptoms before IBD diagnosis by gender, IBD diagnosis, and IBS categorization (combining the groups of likely and possible IBS). A t test was used to compare mean age at IBD diagnosis by adequacy of work-up and IBD diagnosis. The Mann-Whitney U test was used to compare median duration of symptoms to the same variables. Pearson correlation was used to compare duration of symptoms to age. All other comparisons were performed by using χ2 tests. A P value <.05 was considered significant and was corrected for multiple comparisons. Of 396 eligible patients, 162 (41.7%) had gastrointestinal symptoms for at least 3 years before IBD diagnosis. A total of 132 patients were contacted (81%). Seven patients were not contacted because of previous request, and 23 could not be reached by phone. Of those contacted, none refused participation, but 20 were excluded, leaving 112 (69%) for data analysis. Seventeen patients were excluded because they reported no delay in diagnosis at time of phone interview, 2 did not have IBD, and 1 patient gave uninterpretable answers. Of the 112 survey respondents, 65 (58%) had Crohn’s disease, 42 (37%) had UC, 3 (3%) had proctitis, and 2 (2%) had indeterminant colitis. There were 64 (57%) women in total. Of these, 43 had Crohn’s disease. There were significantly more women with Crohn’s disease (n = 43) versus men with Crohn’s disease (n = 22, P < .03). The mean age at time of the study was 44.5 ± 12.9 years (range, 20–81 years). The mean age at diagnosis was 38.0 ± 12.9 years (range, 16–77 years), with no difference in age at diagnosis between the Crohn’s disease and UC groups. For patients with more than 3 years between onset of prominent gastrointestinal symptoms and IBD diagnosis, the mean time between these landmarks was 11.3 ± 9.3 years (range, 3–48 years). The most common symptoms at symptom onset were abdominal pain (85%), gas (77%), diarrhea (76%), bloating (73%), urgency (71%), sensation of incomplete evacuation (60%), and mucus in the stool (42%) (Figure 1). Of the 95 patients with abdominal pain, 56 (59%) experienced relief with bowel movements. Of the 85 patients with diarrhea, 28 (33%) had blood in stool. Initial symptoms occurred daily in 21% and weekly in 30%. In terms of symptom characteristics between onset and time of IBD diagnosis, symptoms remained the same until diagnosis in 7%, there was worsening of the same symptoms in 43%, new symptoms developed at diagnosis in 20%, and there was both worsening of ongoing symptoms and the development of new symptoms in 30%. The work-up after initial onset of gastrointestinal symptoms was considered indicated, pursued, and adequate in 29% but indicated, partially pursued, and inadequate in 21%. A work-up was considered indicated but not pursued in 16% and was considered not indicated in 34% (symptoms were sufficiently mild). Regarding those who underwent adequate investigations and those who did not, there was no difference between groups in regards to gender, age, or disease diagnosis. After initial onset of gastrointestinal symptoms (and in regards to investigations exclusive of those that ultimately led to a diagnosis of IBD), the most common investigations in all patients in descending order were blood tests 44%, barium enemas 20%, small bowel follow-through 17%, colonoscopy 11%, gastroscopy 11%, and abdominal x-ray/ultrasound 10%. Seventeen percent were hospitalized for gastrointestinal symptoms. The most common investigations at time of IBD diagnosis in descending order were blood tests 87%, colonoscopy 78%, small bowel follow-through 51%, barium enema 28%, computed tomography scan 15%, sigmoidoscopy 14%, surgery 11%, and gastroscopy 8%. Thirty-three percent (37 of 111 patients) had a prior diagnosis of IBS given to them by their physicians. An awareness of the difference between IBD and IBS was present in 30% of the patients. Of those who had previously been told they had IBS, we determined that 62% (23/37) had likely or possible IBS by our criteria. Of those who had not previously been diagnosed with IBS, we determined that 42% (31/74) had likely or possible IBS (P = .044). On the basis of our criteria, 28 (25%) were classified as likely IBS, 27 (24%) as possible IBS, and 57 (51%) as no IBS before IBD diagnosis (Table 1). Of UC patients, 43% were classified as likely or possible IBS. Of Crohn’s disease patients, 54% were classified as either likely or possible IBS. Those with likely IBS (P = .05) and those with possible IBS (P < .01) were more likely to report they had abdominal pain that was not due to their IBD. As best as we could apply the Rome II criteria retrospectively, they were satisfied for 46% (13/28) of those classified as likely IBS, 52% (14/27) of those classified as possible IBS, and 25% (14/57) of those classified as no IBS.Table 1Breakdown of Categorization of Patients Into Those With Preexisting Likely IBS, Possible IBS, and No Preexisting IBSLikely IBS28 Symptoms + adequate work-up14 Symptoms + new symptoms at time of IBD diagnosis (blood in stool)12 Fulfilled both criteria2Possible IBSaThere were 2 patients who had symptoms consistent with IBS and adequate investigations, but 1 patient had blood in their stool, and 1 patient had a tubo-ovarian abscess that confused the gastrointestinal diagnosis. Hence both of these patients were categorized as possible IBS.27No IBSbThere were 2 patients (not shown in table breakdown) who had symptoms compatible with IBS and new symptoms at time of IBD diagnosis. However, they did not have regular gastrointestinal symptoms at least annually and hence were categorized as no IBS.57 Lack of typical IBS symptoms22 Lack of regular symptoms at least on annual basis5 Blood present in stool14 Unchanged symptoms until diagnosis2 Symptoms of IBD, fistula/abscess2 Fulfilled 2 of above criteria10a There were 2 patients who had symptoms consistent with IBS and adequate investigations, but 1 patient had blood in their stool, and 1 patient had a tubo-ovarian abscess that confused the gastrointestinal diagnosis. Hence both of these patients were categorized as possible IBS.b There were 2 patients (not shown in table breakdown) who had symptoms compatible with IBS and new symptoms at time of IBD diagnosis. However, they did not have regular gastrointestinal symptoms at least annually and hence were categorized as no IBS. Open table in a new tab Longer duration of gastrointestinal symptoms was associated with older age at IBD diagnosis (r = .32, P < .001) (Figure 2). There was no effect of gender or IBD subtype on pre-IBD symptom duration. There was a trend for longer duration of symptoms before ultimate IBD diagnosis when comparing the combined groups of likely IBS and possible IBS with the no IBS group (Table 2). Forty-six percent of the patients attributed long-standing symptoms before IBD diagnosis to physician failure. Mildness of symptoms were thought to be a factor in the length of ongoing symptoms (that might have also contributed to limited investigations) in 46%, whereas 18% thought their own reluctance to seek medical consultation contributed to ongoing symptoms in the absence of a definitive diagnosis. Other reasons contributed to long symptom duration in 29%. Some attributed long symptom duration to multiple factors.Table 2Delay in Diagnosis (Years)VariablenMedianMeanMale489.512.7Female64710.2UC429.512.5Crohn’s disease65710.1Likely IBS281013.8Possible IBS271012.1No IBS5769.6P = .08aIBS + possible IBS vs no IBS.P = .07aIBS + possible IBS vs no IBS.Overall112811.3a IBS + possible IBS vs no IBS. Open table in a new tab There were a total of 234 subjects in the Manitoba IBD Cohort Study who reported having gastrointestinal symptoms for less than 3 years before diagnosis of IBD. Twenty-seven of these subjects asked not to be contacted further, leaving 207 subjects eligible for further participation. A random sample of 20% was contacted as a comparison group. Forty-three patients were contacted, and 3 were excluded for inability to answer the questions. Of the 40 remaining patients, 20 (50%) had UC, 18 (45%) had Crohn’s disease, and 2 (5%) had proctitis. There were 32 (80%) women, and the average age at time of diagnosis was 37.3 ± 14.6 years (range, 13–65 years). The average duration of symptoms before diagnosis was 0.94 (approximately 11 months) ± 0.79 years. One patient (2.5%) was classified as likely IBS, 6 (15%) were classified as possible IBS, and 33 (83%) patients were classified as no IBS. In comparison, 10 patients (25%) met Rome II criteria, and 30 patients (75%) did not. There were 6 patients who met Rome II criteria but were thought not to have IBS by our classification. Of these 6 patients, 5 had blood in their stools that was not believed to be hemorrhoidal, and 2 had symptoms unchanged from symptom onset until IBD diagnosis. It was found that those with symptom duration longer than 3 years were significantly more likely to be categorized as likely or possible IBS than if the symptoms had been present for 3 years or less (49% [55/112] vs 18% [7/40], P < .001). In this population-based cohort of IBD subjects diagnosed within 7 years of study enrollment, symptoms began on average 11 years before IBD diagnosis. Hence, long-standing gastrointestinal symptoms before diagnosis were experienced by more than 40%, even with a conservative pre-diagnosis criterion of more than 3 years. Long symptom duration was associated with age but not with IBD disease subtype. Delayed diagnosis or long-standing symptoms before Crohn’s disease diagnosis has been found in the elderly population.1Harper P.C. McAuliffe T.L. Beeken W.L. Crohn’s disease in the elderly a statistical comparison with younger patients matched for sex and duration of disease.Arch Intern Med. 1986; 146: 753-755Crossref PubMed Scopus (85) Google Scholar, 2Eisen G.M. Schutz S.M. Washington M.K. et al.Atypical presentation of inflammatory bowel disease in the elderly.Am J Gastroenterol. 1993; 88: 2098-2101PubMed Google Scholar, 3Foxworthy D.M. Wilson J.A.P. Crohn’s disease in the elderly prolonged delay in diagnosis.J Am Geriatr Soc. 1985; 33: 492-495PubMed Google Scholar, 4Stalnikowicz R. Eliakim R. Diab R. Rachmilewitz D. Crohn’s disease in the elderly.J Clin Gastroenterol. 1989; 11: 411-415Crossref PubMed Scopus (26) Google Scholar In 24 elderly patients, age 64–85 years, the diagnosis after symptom onset was delayed 6.4 years compared with 2.4 years in those age 20–61 years.1Harper P.C. McAuliffe T.L. Beeken W.L. Crohn’s disease in the elderly a statistical comparison with younger patients matched for sex and duration of disease.Arch Intern Med. 1986; 146: 753-755Crossref PubMed Scopus (85) Google Scholar An incorrect initial diagnosis was made in 36%–60% of elderly compared with 4%–15% of younger adults.3Foxworthy D.M. Wilson J.A.P. Crohn’s disease in the elderly prolonged delay in diagnosis.J Am Geriatr Soc. 1985; 33: 492-495PubMed Google Scholar, 4Stalnikowicz R. Eliakim R. Diab R. Rachmilewitz D. Crohn’s disease in the elderly.J Clin Gastroenterol. 1989; 11: 411-415Crossref PubMed Scopus (26) Google Scholar We confirmed a significantly long duration of symptoms before Crohn’s disease diagnosis correlating with age. However, we also found a significantly long duration of symptoms before a diagnosis of UC correlating with age in contrast to a recent study by Pimentel et al.5Pimentel M. Chang M. Chow E.J. et al.Identification of a prodromal period in Crohn’s disease but not ulcerative colitis.Am J Gastroenterol. 2000; 95: 3458-3462Crossref PubMed Google Scholar This latter study found no delay in UC diagnosis with increasing age but found a trend for the delay in Crohn’s disease diagnosis to be longer with colonic disease. An epidemiologic model from 1968 suggested that a considerable number of UC patients would remain undiagnosed after 3 years of symptoms.14Iversen E. Bonnevie O. Anthonisen P. et al.An epidemiological model of ulcerative colitis.Scand J Gastroenterol. 1968; 3: 593-610PubMed Google Scholar There are many reasons for increasing age to be associated with prolonged gastrointestinal symptoms before IBD diagnosis, which in some instances might constitute a delay in diagnosis. The differential diagnosis of abdominal pain and diarrhea in an older population is broader compared with that of a younger population (persons in their second and third decades).2Eisen G.M. Schutz S.M. Washington M.K. et al.Atypical presentation of inflammatory bowel disease in the elderly.Am J Gastroenterol. 1993; 88: 2098-2101PubMed Google Scholar Health care attitudes might differ in an older population and might lead to differences in utilization. Access to care and referral might also differ; 2 elderly patients in this study reported difficulty in gaining referral to a gastrointestinal specialist, whereas none of the younger patients mentioned this concern. The pathophysiology between younger and older Crohn’s disease patients has been postulated to differ.5Pimentel M. Chang M. Chow E.J. et al.Identification of a prodromal period in Crohn’s disease but not ulcerative colitis.Am J Gastroenterol. 2000; 95: 3458-3462Crossref PubMed Google Scholar Because younger patients are more likely to present with ileal and penetrating disease and older patients with colonic disease, it is possible that the different phenotypic presentations between younger and older patients reflect different pathogenetic mechanisms. Last, recall bias might be present to a greater degree in the elderly, leading to an overestimation of duration of symptoms. Retrospectively, it is difficult to discern whether long-standing symptoms before IBD diagnosis reflect a true delay in diagnosis (that is, the patient is harboring IBD, but it has escaped detection), or whether it represents a distinct disease or symptom complex and later, possibly as a result of or coincidentally, the patient develops IBD. We attempted to discern whether patients might have had IBS as a cause for gastrointestinal symptoms before their ultimate diagnosis with IBD. We based this on the description of the symptoms, particularly in comparison to the symptoms that they ultimately had in being diagnosed with IBD and on the basis of adequacy of investigations. We found a trend for increased duration of gastrointestinal symptoms in those with likely or possible IBS. This trend became significant if those with 3 years’ duration of symptoms or less were included in the analysis. However, we expected that those with a predefined lesser duration of symptoms (<3 years before IBD diagnosis) would be less likely to have concurrent IBS, which is why we primarily focused on those with a longer symptom duration. A diagnosis of IBS, either real or misdiagnosed, might contribute to a delayed IBD diagnosis. A population-based study in the UK found that those with a preexisting diagnosis of IBS had a 16.3 relative risk (absolute risk 0.6%) of IBD diagnosis during the 3-year follow-up period compared with the general population.15Rodriguez L.A.G. Ruigomez A. Wallander M.A. et al.Detection of colorectal tumor and inflammatory bowel disease during follow-up of patients with initial diagnosis of IBS.Scand J Gastroenterol. 2000; 35: 306-311Crossref PubMed Scopus (116) Google Scholar Two studies have looked at prevalence of irritable bowel–like symptoms in an IBD population considered in remission.13Minderhoud I.M. Oldenburg B. Wismeijer J.A. et al.IBS-like symptoms in patients with inflammatory bowel disease in remission relationships with quality of life and coping behavior.Dig Dis Sci. 2004; 49: 469-474Crossref PubMed Scopus (204) Google Scholar, 16Simren M. Axelsson J. Gillberg R. et al.Quality of life in inflammatory bowel disease in remission the impact of IBS-like symptoms and associated psychological factors.Am J Gastroenterol. 2002; 97: 389-396PubMed Google Scholar The first study found irritable bowel–like symptoms in 33% of UC and 57% of Crohn’s disease patients.16Simren M. Axelsson J. Gillberg R. et al.Quality of life in inflammatory bowel disease in remission the impact of IBS-like symptoms and associated psychological factors.Am J Gastroenterol. 2002; 97: 389-396PubMed Google Scholar The second study, with more rigorous Rome II criteria, reported irritable bowel–like symptoms in 33% of UC and 42% of Crohn’s disease patients.13Minderhoud I.M. Oldenburg B. Wismeijer J.A. et al.IBS-like symptoms in patients with inflammatory bowel disease in remission relationships with quality of life and coping behavior.Dig Dis Sci. 2004; 49: 469-474Crossref PubMed Scopus (204) Google Scholar In our study, the aim was to retrospectively assess the presence of IBS before an IBD diagnosis. Our rates (only in those with symptoms for more than 3 years before diagnosis) were markedly similar to the 2 previous studies. We did not use Rome II criteria, because there is uncertainty as to its discriminatory value between those who later prove to have IBD. Furthermore, we incorporated other valuable clinical data into the classification decision (ie, patients could fulfill the Rome criteria but were classified as “no IBS” if they had a fistula). IBS can be diagnosed fulfilling Rome II diagnostic criteria.12Thompson W.G. Longstreth G.F. Drossman D.A. et al.Functional bowel disorders and functional abdominal pain.Gut. 1999; 45: II43-II47Crossref PubMed Scopus (2035) Google Scholar However, it can be a diagnosis of exclusion, if there are warning features (such as blood in the stool or nocturnal awakening), and there are no reliable markers to positively make the diagnosis. Others have considered the importance of warning signs or “red flags” such as blood in the stool with and without Rome criteria17Kruis W. Thieme C. Weinzierl M. et al.A diagnostic score for the IBS its value in the exclusion of organic disease.Gastroenterology. 1984; 87: 1-7PubMed Scopus (287) Google Scholar, 18Vanner S.J. Depew W.T. Paterson W.G. et al.Predictive value of the Rome criteria for diagnosing the IBS.Am J Gastroenterol. 1999; 94: 2912-2917Crossref PubMed Scopus (236) Google Scholar; hence we incorporated these features along with the typical symptoms incorporated into Rome II criteria to discern a diagnosis of likely or possible IBS. There were 14 subjects who met the Rome criteria but whom we did not consider to have IBS. These subjects had a lack of symptoms yearly, blood in the stool that was not considered hemorrhoidal, symptoms that were the same as when their IBD was ultimately diagnosed, or symptoms specifically suggestive of IBD (such as a fistula or abscess). Clinically, it can be quite difficult to decide whether an IBD patient is having symptoms as a result of uncontrolled IBD or as a result of possible coexisting IBS. In the cohort of those with >3 years of symptoms before IBD diagnosis, we found 49% had likely or possible IBS, and 51% had no IBS before IBD diagnosis. We believed it was reasonable to assume that those who had less than 3 years of symptoms before IBD diagnosis were less likely to have IBS and more likely to have symptoms related to their IBD. This assumption was confirmed on contacting a random sample of subjects with symptom duration of 3 years or less, because there were significantly less likely or possible IBS patients in this sample. If we assume that those with shorter duration of gastrointestinal symptoms (less than 3 years before IBD diagnosis) could not reliably be diagnosed with IBS, then our estimated prevalence of IBS before IBD diagnosis is 14% (55/396). However, if we assume that subjects whose gastrointestinal symptoms before IBD diagnosis were present for less than 3 years could be diagnosed as having IBS as well, then the estimated prevalence of IBS might be as high as 24% (assuming that the prevalence of 17.5% is consistent across all 235 subjects with less than 3 years of symptoms, this would suggest that 96/396 could have IBS). This rate is consistent with rates found in the general population, because the prevalence if IBS is thought to be 15%–20% of adolescents and young adults.12Thompson W.G. Longstreth G.F. Drossman D.A. et al.Functional bowel disorders and functional abdominal pain.Gut. 1999; 45: II43-II47Crossref PubMed Scopus (2035) Google Scholar Of those with gastrointestinal symptoms for at least 3 years before IBD, nearly half were found to have likely or possible IBS; thus the coexisting condition cannot account for all prolonged gastrointestinal symptoms or delayed diagnoses. Other reasons given by our patient population included doctor avoidance in 18%, whereas 46% thought the mildness of their symptoms contributed. Unfortunately, 46% also believed the doctor failed to make the diagnosis. Some thought there were multiple reasons for the long duration of symptoms before IBD diagnosis. This is an exploratory step in an understudied area, and there are limitations to our study. First, preexisting IBS was diagnosed retrospectively. Certainly the ideal study would prospectively follow individuals to track symptom onset to disease confirmation, but that has not been done to date and is likely not feasible, given relatively low base rates for IBD. The advantage of assessing IBS with this cohort was they had relatively recent diagnoses of IBD. The duration of symptoms before that diagnosis was quite variable, however, with an average of 11 years, resulting in inevitable recall bias. Nevertheless, participants were carefully and systematically questioned by a physician familiar with the presentation of both IBS and IBD. It was reassuring to find those classified as likely IBS or possible IBS reported that they had abdominal pain they believed was not due to their IBD. Nevertheless, these criteria have not been validated and are open to criticism. We assumed that subjects with less than 3 years of symptoms before IBD diagnosis might have simply represented a delay in bona fide IBD diagnosis. Second, we defined and applied retrospectively what constituted an adequate investigation to exclude IBD. It might be argued that all should have had colonoscopy to enhance certainty that IBD was not missed during the preexisting symptoms. However, current clinical practice for IBS advocates minimal invasive investigations and diagnosis on the basis of presence of a symptom cluster and absence of warning signs or red flags, and many presented with symptoms during an era in which colonoscopy was used less aggressively. It also points to the need for further research into the area of IBS, so that clinicians can make a positive diagnosis or at least differentiate it from IBD. Until there is a more objective marker of IBS, it will be problematic to differentiate the diagnosis in the context of IBD. Another limitation is our reliance on patient recall. It is possible that patients’ memories of events are not accurate, and we did not retest or perform a chart review to determine accuracy. Considering that these patients often saw several physicians during the years before IBD diagnosis, a chart review to document accurately all of a patient’s prior symptoms would have been very problematic. Overall we are making an educated guess that the subjects had likely or possible IBS. The Rome criteria were not considered sufficiently robust in the setting of IBD to facilitate a diagnosis of IBS, and they were not used as our main determinant of this diagnosis. However, even given the limitations of our study, we believe that it is a significant finding that before an IBD diagnosis, IBS was no more prevalent than in the general population. It might be an important reason for long duration of gastrointestinal symptoms or even contribute to delay in diagnosis in approximately half of the IBD patients whose gastrointestinal symptoms began at least 3 years before IBD diagnosis and in approximately 14% of all patients with IBD. If one considers that subjects who have less than 3 years of gastrointestinal symptoms before a diagnosis of IBD might also have IBS, then the prevalence of this diagnosis in IBD might be as high as 24%." @default.
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