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98 McLeod and Cohen
life, quality of health, and energy) each rated on a scale of 0–10. They
found high mean SF-36 scores similar to those of the U.S. normal popula-
tion. As well, there was a high correlation between the CCGQL and the
SF-36. Quality of life was shown to increase during the first 2 years after
surgery and thereafter did not deteriorate. Factors affecting quality of life
included number of stools per 24 hr, urgency, incontinence, and age at the
time of surgery. Others have also documented the impact of bowel function
on quality of life [34–36].
Lastly, Dunker and colleagues compared outcome of 16 patients who
had a laparoscopic-assisted IPAA to 32 patients who had an open procedure
using the SF-36 and Gastrointestinal Quality of Life Index (GIQL) [37].
No differences in mean scores were found between the two groups. The
only difference between the two groups was a difference in body image
score based on the results of the Body Image Questionnaire.
COMPARISON OF QUALITY OF LIFE
Several studies have attempted to compare the quality of life of patients
following the various procedures. Unfortunately, these studies are not ran-
domized controlled trials, which would not be ethical or feasible to per-
form, so there may be inherent differences in the patient samples that may
limit the findings of the studies. In addition, many of the comparative stud-
ies have been performed using invalidated instruments.
Kohler and colleagues from the Mayo Clinic surveyed 406 patients
who had a conventional ileostomy, 403 who had a Kock pouch and 300
who had an ileal pouch for ulcerative colitis or familial adenomatous
polypossi between 1960 and 1980 [20]. They reported that more than 90%
of patients in all three groups were satisfied with their current status, al-
though 33% of patients with a conventional ileostomy, 11% with a Kock
pouch, and 3% with a pelvic pouch would like to have a change. More than
90% in all three groups had returned to work or school, and more than
60% reported that their attitude had improved since surgery. They assessed
performance in seven categories: social activity, sports, housework, recre-
ation, family relationships, sexual activity, and travel. There were no signif-
icant differences with the exception that patients with an ileal pouch scored
higher in the areas of sports and sexual activities compared to the other two
groups. Patients with Kock pouches were more restricted in food intake and
their ability to travel.
In an attempt to quantitate quality of life following these procedures,
our group used two techniques, the time trade-off technique and the direct
questioning of objectives to derive utilities for patients’ perceived health
status [38]. As mentioned previously, a utility of 1.0 signifies perfect health
and death is assigned a utility of 0. Three cohorts of patients were inter-
viewed: 28 patients with conventional ileostomies, 28 with continent ileos-
Quality of Life with a Stoma 99
tomies, and 37 with pelvic pouches. All the patients had had surgery at
least 1 year previously and were selected at random from patients followed
in our practices. Attempts were made to include patients who were thought
to have good and poor results as judged by the attending surgeon. The
mean utilities, using both techniques, were similar for all three groups of
patients, with utilities ranging from 0.87–0.97. Thus, not only did this study
suggest that quality of life is close to that of normal but there appeared to
be little difference in quality of life with the different procedures. With
subgroup analysis we did find that the mean utilities were significantly
different between those judged to have “failed” pouches and those with
good results.
In a similar study, Jimmo and Hyman administered a modified IBDQ
to 50 patients who had a IPAA and 12 who had a permanent ileostomy
following total proctocolectomy [39]. There was no difference in the mean
IBDQ scores between the two groups. Similarly, 95% of the IPAA patients
compared with 100% of the ileostomy patients were very satisfied or satis-
fied with the surgical procedure and none, in retrospect, would have chosen
the other procedure.
These studies indicate that quality of life is high for most patients
postoperatively irrespective of the procedure performed. These results ap-
pear to contradict what occurs in clinical practice: that is, that most patients,
given the option, choose a pelvic pouch. There may be several reasons to
explain the discrepancy. First, the patients were not randomly allocated to
which procedure they had; therefore it is likely that there are inherent dif-
ferences in the groups. Second, the most important determinant of quality
of life may be physical well-being, which is excellent in most patients irre-
spective of the procedure. Third, there may be an aspect of patients accept-
ing their current health status and rationalizing that it is superior to other
alternatives. The findings from these studies, however, should not discour-
age surgeons from performing the various alternative procedures. Rather,
surgery should be viewed as an effective treatment for patients with ulcera-
tive colitis, and patients should play a role in choosing the best procedure
for them based on their expectations and lifestyle. Finally, it points out the
need for further research into the area of quality-of-life assessment and
patient decision making in this group of patients.
COMPARISON OF QUALITY OF LIFE
OF MEDICALLY VS. SURGICALLY TREATED
PATIENTS WITH ULCERATIVE COLITIS
Recently several studies have compared outcome in patients treated medi-
cally to that in patients treated surgically. It is interesting that these studies
have resulted in conflicting results and conclusions. One explanation is that
there may be differences in the patients studied and the study design. For
100 McLeod and Cohen
example, the natural history of patients with ulcerative colitis is often vari-
able. Thus, if quality of life were assessed when the disease was quiescent,
one could predict that the quality of life would be high. On the other hand,
if these same patients were assessed preoperatively when the disease was
active, their quality of life would probably be low. For patients who have
had surgery, the health status is usually much more stable except for the
early convalescence period. Thus quality of life soon after surgery would
probably be lower than if it were assessed at a later date. Another issue that
might result in incorrect conclusions is that the “right thing” may not be
measured. For instance, stool frequency is an important indicator of disease
activity in ulcerative colitis and thus of the quality of life of patients being
treated medically. On the other hand, stool frequency seems to have less
impact on the quality of life of patients with pelvic pouches (and is totally
irrelevant in patients with conventional ileostomies or Kock pouches). Thus
patients who have a pelvic pouch and have an excellent quality of life
routinely have five or six bowel movements per day. The same number of
bowel movements in a patient being treated medically may indicate active
disease, and with it impaired quality of life. If an instrument such as the
IBDQ, where stool frequency is an item, were used to assess quality of life,
the surgical patient might appear to have a poorer quality of life than he or
she really has.
It also seems that investigator bias may account for differences in the
results. Surgeons have tended to report a high quality of life following
surgery whereas the opposite conclusion has been drawn by gastroenterolo-
gists. Does this difference appear because the patients being studied differ,
or is there an expectation bias, with patients wanting to “please” their phy-
sicians? These questions are unanswered and emphasize the need for further
well-designed studies. There is also a lack of information about what the
important determinants are that affect quality of life in both medically and
surgically treated patients. This issue is also important to address.
Sagar and colleagues surveyed 100 medically treated patients who had
ulcerative colitis for more than 1 year and 110 patients who had the pelvic
pouch procedure [40]. The ulcerative colitis patients were those who at-
tended an outpatient gastroenterology clinic and were in remission at the
time of the survey. Both groups were given a self-administered question-
naire developed in conjunction with an enterostomal therapist and psychol-
ogist. They also completed the Hospital Anxiety and Depression (HAD)
test. Functional scores were based on a modified scoring system developed
by Oresland et al. [41] for assessing functional results with a pelvic pouch.
These authors found that surgical patients had significantly more bowel
movements (5 per 24 hr vs. 2 per 24 hr) and nocturnal stools (1 vs. 0), and
a higher proportion of the surgical patients used antidiarrheal agents (52 vs.
3%). On the other hand, significantly fewer surgical patients had urgency
(12 vs. 73%) or social limitations (21 vs. 46%), and they had significantly
Quality of Life with a Stoma 101
better functional scores, HAD anxiety scores, and HAD depression scores.
Thus patients who had had surgery seemed to have a better outcome at
least in some domains than those even with quiescent disease.
Martin and colleagues studied two cohorts of patients: 29 patients who
had surgery and another 57 who had ulcerative colitis treated medically
[42]. A validated 29-item, self-administered questionnaire was completed.
Patients who had been treated surgically had better scores than those with
severe ulcerative colitis but similar scores to those with mild disease or
those in remission.
Provenzale and colleagues compared the outcome of 22 patients who
had had a pelvic pouch at Duke University Medical Center to a national
sample of IBD patients who were members of the Crohn’s and Colitis
Foundation of America [43]. Patients with a pelvic pouch scored signifi-
cantly better on Sickness Impact Profile (SIP) as well as the Reporting form
of Inflammatory Bowel Disease Patient Concerns (RFIPC). The limitation
of this study is that the control and surgery groups were drawn from differ-
ent populations. Moreover, the disease status of the patients in the control
group is unknown. In a follow-up study, this group assessed 20 patients hav-
ing a IPAA preoperativel y and at intervals up to 1 year after using the SF-36,
RFIPC, and the time trade-off technique [44]. Seven of the eight subscales of
the SF-36 revealed improved quality of life. Similarly, there was a s ign ific ant
reduction in patient concerns. The mean utility increased from 0.59 +/− 0.28–
0.93 postoperatively. The improvement in outcome occurred as early as 1
month and was sustained over the study duration of 12 months.
Our group assessed quality of life of a cohort of 20 patients immedi-
ately before and 1 year after surgery [38]. The time trade-off technique and
direct questioning technique of objectives were used to assign utilities. Not
surprisingly, quality of life was significantly higher postoperatively, with
mean utilities of 0.58 preoperatively versus 0.98 postoperatively using the
time trade-off technique and 0.38 and 0.88, respectively, using the direct
questioning of objectives. Preoperative quality of life also correlated with
disease activity. Two other studies demonstrated improved quality of life,
as assessed by the SF-36, RFIPC, in cohorts of patients assessed pre- and
postoperatively [45,46].
Cohen and colleagues compared the quality of life of 7 patients who
had been treated with cyclosporine for ulcerative colitis to 22 patients who
had failed cyclosporine therapy and had surgery and a pelvic pouch [47].
They found that the cyclosporine patients had significantly better emotional
function, ability to sleep through the night, fewer bowel movements, and
less abdominal pain. Their conclusion was that “the choice of cyclosporine
is supported by a superior quality of life.” Weiss and colleagues from
Mount Sinai Hospital in New York also compared the quality of life of
patients treated with cyclosporine or surgery for ulcerative colitis and came
to a similar conclusion [48]. A total of 28 patients who had a pelvic pouch
102 McLeod and Cohen
procedure were compared to 39 patients who had received cyclosporine for
acute ulcerative colitis. Quality of life was significantly better as assessed
by a disease-specific instrument, the IBDQ (181 ± 33 vs. 163 ± 39; p =
0.04), but there was no difference when a generic measure, the SF-36, was
used (MCS 47 ± 11 vs. 44 ± 12, p = 0.3; and PCS 49 ± 11 vs. 40 ± 10,
p = 0.65). The mean utilities, as determined by the time trade-off technique,
also revealed a higher quality of life in the cyclosporine group (mean 0.95 ±
0.08 vs. 0.85 ± 0.18). What is not readily apparent in this study is why the
mean utility for the surgery group was lower than that observed in two
other studies where utilities were assessed [38,43]. It may be due to a selec-
tion bias, as only 28 of 62 patients who underwent surgery were included
in this study.
A final study did not measure quality of life per se but compared 20
medically treated and 20 surgically treated patients followed at the Cleve-
land Clinic in Florida [49]. Patients were matched for age and duration and
severity of disease. Cost, number of hospital admissions, and length of stay
were recorded over a 5-year period. Sher and colleagues reported that mor-
bidity—defined as the need for further medical therapy—was significantly
higher in the medically treated patients.
QUALITY OF LIFE FOLLOWING SURGERY
COMPARED TO THE NORMAL POPULATION
Surgeons have often thought that because patients can be cured of their
disease, the postoperative quality of life of patients who had surgery for
ulcerative colitis was similar to that of the normal population. In fact, two
studies have demonstrated that this appears to be the case.
Provenzale and colleagues compared the outcome of 22 patients with
a pelvic pouch performed at Duke University Medical School to a normal
population using the SF-36 test [43]. No significant differences were de-
tected. They also reported that the median utility for this cohort, as deter-
mined using the time trade-off technique, was 1.0.
Kohler compared the outcome in a cohort of patients who had a pelvic
pouch procedure to a cohort who had cholecystectomy [50]. Although they
found that the pelvic pouch patients had increased stool frequency (6 vs. 1
BM/day, took more medication (40 vs. 12%), and had a higher proportion
of fecal spotting (68 vs. 13%) and concern about bowel habits (28 vs.
18%), the quality of life of the two cohorts was similar. Similar proportions
reported that they had good health (76 vs. 79%), were satisfied with the
procedure (86 vs. 84%), enjoyed food (95 vs. 92%), slept well (75 vs.
82%), and experienced no abdominal pain (77 vs. 70%). Furthermore, simi-
lar proportions participated in sports and recreational activities (90 vs.
88%), social activities (95 vs. 89%), family relationships (95 vs. 98%), and
sexual activity (84 vs. 82%).
Quality of Life with a Stoma 103
LIFE WITH A COLOSTOMY
There is less written in the literature about the quality of life of patients
with a colostomy than for those with an ileostomy. Most often, patients
have a colostomy following abdominoperineal resection for cancer of the
rectum. In recent years, since the introduction of stapling devices, restor-
ative procedures are being performed more frequently, even for cancers
occurring in the lower third of the rectum. With this, there has been an
increased interest in assessing outcome and quality of life in patients hav-
ing restorative procedures compared with abdominoperineal resection and
colostomy.
Although this issue requires study, like comparisons in patients with
ileostomates, one must be cautious in interpreting the results since patients
are not randomly allocated. Patients who have restorative procedures tend
to be younger and have more favorable tumors than those having abdomi-
noperineal resections. Secondly, bowel function and quality of life may
vary depending on the level of the anastomosis following anterior resection.
Outcome tends to be poorer following a low anastomosis, which would
be the alternative to a colostomy. Radiation has been shown to affect
functional results following restorative procedures and may confound the
results.
Sprangers and colleagues reviewed the literature and found 17 studies
published between 1969 and 1992 which compared quality of life of pa-
tients with a colostomy to those who had a reconstructive procedure [51].
These studies were all cross-sectional in design. The studies tended to be
small (60–420 patients), and the time elapsed since surgery varied widely,
ranging from 1–10 years. Most used unvalidated instruments. There was
great heterogeneity among the studies, but the major finding of the review
was that both patients with a colostomy and those with intact sphincters
experienced limitations in all four areas of quality of life (physical, psycho-
logical, social, and sexual functioning). Approximately three-quarters of the
patients surveyed considered their general state of health good. However, a
large proportion complained of bowel problems, including constipation in
ostomates and frequency and control problems in patients who had restor-
ative procedures. Psychological problems such as low self-esteem, depres-
sion, loneliness, suicidal thoughts, and feelings of stigma were seen in both
groups but were more common in ostomates (10–54%) compared with the
nonstoma patients (3–43%). Both groups of patients were restricted in their
social activities However, the findings suggested that having a colostomy
is associated with reduced interest and participation in outside activities,
although in-house activities were less affected because of feelings of being
a nuisance or embarrassment. With respect to sexual functioning, 66–100%
of male ostomates reported some sexual dysfunction, whereas the frequency
was 30–75% in those who had had reconstructive procedures. Much less
has been written about sexual function in women, but dyspareunia, dimin-
104 McLeod and Cohen
ished orgasm, and less frequent intercourse were reported more commonly
in females with a colostomy. Thus, the conclusion was that ostomates have
more psychological, social, and sexual dysfunction, but the authors pointed
out the limitations of the studies and that caution is required in drawing
conclusions.
While it has been accepted by surgeons that a sphincter-sparing proce-
dure is preferable to an abdominoperineal resection, two recent studies have
suggested that quality of life, in fact, may be better in patients who had an
abdominoperineal resection and permanent colostomy [52,53]. These stud-
ies are limited by not being randomized controlled trials. However, these
are interesting observations. The findings may be due at least in part to
patient expectations. Most patients preoperatively are loath to even consider
a colostomy but often accept it quite well postoperatively. On the other
hand, patients having a reconstructive procedure may be unprepared for the
change in bowel function that often occurs following a very low anterior
resection.
Grumann and colleagues prospectively studied 73 patients who had
cancers of the rectum: 50 patients were treated with anterior resection and
23 patients with abdominoperineal resection. The EORTC QLQ C30 and
CR38 modules were administered preoperatively, at 6–9 months and at
12–15 months [52]. In most subscales, there was no significant difference
in the results between the two groups, although there tended to be a trend
in favor of the patients having abdominoperineal resection. On multivariate
analysis, patients having a low anterior resection had particularly poor total
quality-of-life scores, role function, social function, body image, and future
perspective. As well, they had more gastrointestinal and defecation–related
symptoms than patients undergoing high anterior resection. These findings
are particularly interesting in that it is accepted that elderly patients having
a low anterior resection or those having a coloanal anastomosis may have
poor functional results. However, in this study, the mean age of the patients
was approximately 60 years, and 70% of the patients in the anterior resec-
tion group had an anastomosis above 5 cm.
Another study by Allal and colleagues reported similar findings [53].
Quality of life was assessed in 29 patients who had had an abdominoperi-
neal resection and 23 who had had a low anterior resection. All patients
had received preoperative radiation therapy with or without concomitant 5-
fluorouracil. For all scales of the EORTC QLQ-C30 and EORTC QLQ-
CR38, there were no significant differences in the median scores between
the two surgical groups. However, patients who had had an abdominoperi-
neal resection had lower body image scores and reported a higher rate of
sexual dysfunction in male patients. On the other hand, these patients re-
ported better physical function, future perspective, and global quality of life
than those who had sphincter-sparing surgery.
Three studies have assessed quality of life in patients having tempo-
rary stomas following low anterior resection. Quality of life appeared to be
Quality of Life with a Stoma 105
decreased while patients had a stoma [54]. This is plausible in that many
patients do not accept a stoma well when it is temporary. There seemed to
be no difference in quality of life whether the patient had a loop ileostomy
or a transverse colostomy [55,56]. However, outcome was directly related
to the number of stoma problems or complications that were encountered
[56].
SUMMARY
Quality of life is becoming an increasingly important outcome for both
surgeons and patients. As patients become better informed, they demand
more information about both the surgical procedure and their long-term
outlook. It therefore behooves the surgeon to consider quality of life and to
measure it objectively with instruments that are sensitive, reliable, accurate,
and valid. The development of instruments to measure quality of life is also
important, so that modifications of techniques and new procedures can be
evaluated adequately.
Despite the limitations of studies assessing quality of life, it appears
that quality of life is good in most patients with an ileostomy or a colos-
tomy. Although some restrictions may be encountered, most patients are
able to lead a normal life.
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