A Descriptive, Cross-sectional Study to Assess Quality of Life and Sexuality in Turkish Patients with a Colostomy

A stoma affects personality, self-esteem, and body image, inevitably impacting lifestyle and quality of life (QOL). A descriptive, cross-sectional study was conducted between May 1, 2015 and May 1, 2016 to evaluate the effect of a stoma on sexual function and QOL among patients receiving care in a general surgery clinic of a university hospital in the western region of Turkey.Eligibility requirements included patients willing to participate, >18 years of age, with a colostomy for at least 4 months, who were married and/or with a sexual partner and in otherwise good physical and mental health with no rectal nerve damage or receiving radio- or chemotherapy. Data were collected during face-to-face interviews. Demographic variables (age, gender, body mass index [BMI], educational status, income level); and clinical information (duration of the precipitating disease, and stoma duration, cause, and type) were collected, and the International Index of Erectile Function (IIEF) measure; the Index of Female Sexual Function (IFSF); and a Stoma Quality of Life Scale (SQOLS) were completed. Statistical analyses were performed using descriptive statistics, Spearman’s correlation coefficient, and the Mann-Whitney U test. Of the 57 study participants, 57.9% were >60 years old (mean age: 59.81 ± 10.12), more than half (57.92%) were male, 33.3% had a permanent stoma, and the mean duration of the stoma was 9.60 ± 6.40 months. Scores for all 3 outcomes were low; mean IIEF score was 3.64 ± 2.47 (range 2–10), mean IFSF score was 13.04 ± 5.19 (range 9–29), and mean SQOLS was 45.10 ± 18.88 (range 0–100). Eighteen (18) of the 33 men (54.5%) had severe, 5 (15.2%) had moderate, and 9 (27.3%) had mild erectile dysfunction. The IFSF total score for all female patients was <30; all female patients experienced sexual dysfunction. A negative correlation between age and the SQOLS subscale sexuality/body image was found (rs = -0.305, P <.05). A positive correlation was found among BMI, erectile function (rs = 0.350, P <.05), sexual desire (rs = 0.474, P <.01), and intercourse satisfaction (rs = 0.385, P <.05). These study results provide reference data for future study and underscore the importance of assessing and addressing QOL and sexuality concerns among patients with a colostomy.

A stoma is a surgically created opening in the abdominal wall that facilitates the elimination of stool.¹ Descriptive studies^2-4  have shown a stoma can affect personality, self-esteem, and body image, inevitably impacting lifestyle and quality of life (QOL). A review⁵ and a randomized, controlled trial⁶ (N = 59) reported patients with a stoma often exhibit specific physiological and psychological problems such as flatulence, stool leakage, bad odor, social isolation, persistent dissatisfaction with body image, anxiety, and lowered self-respect and self-esteem. Furthermore, personal and family relationships can be troublesome for these patients. Patients may isolate themselves from their families, spouses, and society; when patients feel sexually inadequate due to these body image alterations and physiological and psychological problems, the QOL and sexual life of the patients also can be negatively affected.^5-12 A review³ and a nonrandomized, prospective study¹³ (N = 50) found a stoma can cause long-term sexual dysfunction.

Results of a qualitative study (N = 14) by Dabirian et al¹⁴ reported that concern regarding colostomy- and stoma-related problems such as financial state, relationship with family and friends, entertainment, travel, physical activity, sexual function, and eating were factors that affected patients’ QOL. A prospective analysis¹⁵ of QOL after cancer surgery (N = 65) found QOL was better 1 year after stoma creation than before surgery, but sexual function decreased; a prospective study (N = 51) by Breukink et al¹⁶ found QOL improved despite worsening sexual functioning 1 year after surgery. A 2005 systematic review¹⁷ that investigated the social and psychological effects of a stoma on an individual’s life also underscored its negative influence on QOL with respect to self-respect and confidence as well as problems with sexuality.

Physical, psychological, and sexual problems of patients with a stoma should be evaluated and addressed to improve QOL. Stoma care nurses have an important responsibility in that area. Unfortunately, the number of nurses who specialize in ostomy care nursing is inadequate in Turkey and research on QOL and sexual activity of Turkish patients is lacking; these factors may explain why nurses in Turkey have not made QOL and sexual function of patients with a stoma a priority. 

The purpose of this study was to evaluate the effect of a stoma on sexual function and QOL in persons with a colostomy.

Patients. A descriptive, cross-sectional study was conducted among patients receiving care in a general surgery clinic of a university hospital in the western region of Turkey between May 1, 2015 and May 1, 2016. Inclusion criteria stipulated patients must be willing to participate in the study, be >18 years of age, have a colostomy for at least 4 months, be married and/or with a sexual partner, and be in good physical and mental health. Any patient with emotional or psychological problems or a chronic disease affecting QOL, receiving chemotherapy or radiotherapy within the study timeframe, or with rectal nerve damage was excluded from the study.

The sample size was determined according to the results of a cohort study (N = 289) by Larson et al¹⁸ in which the sample size was calculated using mean and standard deviation of the International Index of Erectile Function (IIEF) overall satisfaction subscale. The minimum sample size for the study was calculated as 51 individuals with a 5% deviation, 80% power, and a 95% confidence interval. 

The study was approved by the Scientific Ethics Committee (Reference number 30.04.2014/20478486-190). Permission was obtained from the hospital before the study. The study was performed in compliance with the Declaration of Helsinki. The research assistant explained the study in detail to potential participants and obtained written informed consent.

Instruments. Data were collected using the Personal Information Form, IIEF, Index of Female Sexual Function (IFSF), and the Stoma Quality of Life Scale (SQOLS). 

Personal information form. This instrument, developed by researchers, consisted of 2 parts: the first part included demographic questions concerning age, gender, body mass index (BMI), educational status, and income level; the second facilitated the collection of information regarding the type of and time since diagnosis of the underlying disease and type (permanent or temporary) and duration of the stoma as well as treatment (radio- or chemotherapy), ability to provide self-care, and overall perceptions regarding QOL and sexuality.

IIEF. This index, developed by Rosen et al,¹⁹ includes 5 subscales for a total of 15 questions: erectile function (questions 1 through 5 and 15), sexual satisfaction (questions 6 through 8), orgasm (questions 9 and 10), sexual desire (questions 11 and 12), and overall satisfaction (questions 13 and 14). Each question on the IIEF is scored from 1 to 5 points, where 1 = severe dysfunction and 5 = no dysfunction. The total score range is 5 to 75. Based on this score, the degree of erectile dysfunction (ED) is classified as normal (>25), mild (17 to 25), moderate (11 to 16), or severe (0 to 10). The Turkish version was tested for validity and reliability.²⁰

IFSF. This 9-question index was developed by Kaplan et al²¹ and includes 6 subscales: quality of sexual intercourse (questions 1 and 2), desire (questions 4 and 5), overall satisfaction with sexual function (questions 6 and 7), orgasm (question 8), lubrication (question 2), and clitoral sensation (question 9). Lower scores indicate dissatisfaction; the highest score is 49. The total IFSF score calculated at or below 30 is indicative of sexual dysfunction. Validity and reliability of the Turkish version of this index were established.²²

SQOLS. This 21-item questionnaire was developed by Baxter et al²³ and includes 3 subscales: work/social function (6 items), sexuality/body image (5 items), and stoma function (6 items). Three (3) additional 1 items measure financial impact (1 item), skin irritation (1 item), and overall satisfaction (2). Nineteen (19) items are scored using a Likert-type, 5-point scale (1 = never, 2 = seldom, 3 = occasionally, 4 = frequently, 5 = always), and 2 items measure overall life satisfaction from 0 to 100. Subscale scores on the SQOLS range from 0 to 100 (0 is the worst and 100 indicates the best QOL) for each item.^23,24 Turkish validity and reliability of this scale were established by Karadağ et al.²⁴ 

Data collection. Data were collected during outpatient clinic visits via face-to-face interviews using the instruments. Patients completed the questionnaires with the research assistant available to address any concerns. For some patients, the questions were read aloud by a research assistant. The questionnaire forms were completed individually in a separate room to ensure privacy. Patient names were not recorded to ensure confidentiality. Generally, the questionnaires took approximately 20 to 25 minutes to complete. Data were recorded using paper/pencil materials and entered into a computer by researchers. 

Statistical analysis. Data were entered and analyzed using Statistical Package for Social Sciences (SPSS) version 15.0 (SPSS Inc, Chicago, IL). The Kolmogorov-Smirnov test was used to asseess whether data were normally distributed. Descriptive statistics (mean ± standard deviation; minimum and maximum; or median [interquartile range-IQR]) were used to analyze continuous variables; categorical data were calculated in numbers and percentages. Differences between groups for continuous variables were evaluated by the Mann-Whitney U test and Spearman’s correlation coefficient tests where applicable. The results were assessed using a 95% confidence interval and significant when P <.05.

A total of 66 patients with a stoma were admitted to the outpatient clinic for the study period and screened for study eligibility; 57 met the inclusion criteria. One (1) patient refused to participate, 3 patients had a physical or psychological morbidity, and 5 patients had rectal region nerve damage from their ostomy surgery and were excluded. 

Thirty-three (33, 57.9%) patients were >60 years old (mean age: 59.81 ± 10.12), the majority (33, 57.9%) were male, 32 (56.1%) were normal weight (mean BMI: 25.35 ± 5.29), for 41 (71.9%) the highest educational level was elementary school, 39 (68.4%) were unemployed (housewives/retired), 44 (77.2%) had an average monthly income $500 Turkey lira or above, 33 (57.9%) lived in an urban setting, and 9 (15.8%) were active smokers (see Table 1). 

Most (40) patients (70.2%) received their first diagnosis within the previous 12 months (mean first diagnosis time: 12.35 ± 10.42 months); for more than half of patients (35, 61.4%), their stoma was created 9 months previous or less (mean stoma duration: 9.60 ± 6.40 months). The majority of patients (37, 64.9%) had surgery because of colon cancer; 19 (33.3%) had a permanent stoma and more than half (33, 57.9%) received treatment including chemotherapy and radiotherapy after stoma surgery. One third of patients (19, 33.3%) performed their own stoma care. The majority of participants reported their daily (43, 75.4%) and sexual lives (48, 84.2%) were seriously affected by the stoma (see Table 2). 

Patients’ SQOLS scores were highest on the work/social function (47.00 ± 23.66) and lowest on sexuality/body image (43.86 ± 17.42) subscales. Patient scores in all 3 scales were low (see Table 3). Female patients with a stoma scored highest on the IFSF lubrication subscale (2.12 ± 1.57) and the lowest on sexual desire (2.46 ± 1.32) and intercourse satisfaction (2.46 ± 0.93) subscales. Men had the highest score on the IIEF erectile function subscale (13.06 ± 6.48) and the lowest score on the sexual desire (3.64 ± 2.07) and overall satisfaction subscales (3.64 ± 2.47). Among the 33 men, 18 (54.5%) had severe, 5 (15.2%) had moderate, and 9 (27.3%) had mild ED (see Table 4). The IFSF total score for all female patients was <30; all female patients experienced sexual dysfunction. 

When the correlation between independent variables and subscales scores was examined, a negative correlation between age and the SQOLS subscale sexuality/body image was found (rs = -0.305, P <.05). The sexuality/body image score decreased as age increased. A positive correlation was found among BMI, erectile function (rs = 0.350, P <.05), sexual desire (rs = 0.474, P <.01), and intercourse satisfaction (rs = 0.385, P <.05). As BMI increased, the scale scores also increased (see Table 5). 

When the overall SQOLS and subscale scores were compared with the independent variables, the difference among type of stoma and overall SQOLS and sexuality/body image subscale scores was found to be statistically significant (P <.05). The median scores of patients with a temporary stoma were higher than persons with a permanent stoma. The difference between stoma effects on daily life and all subscale scores of the SQOLS was statistically significant (P <.05); patients that perceived the stoma seriously affected their daily lives scored lower than “mild.” The difference in overall SQOLS and sexuality/body image subscale scores and effect on sexuality was found to be statistically significant (P <.05). Patients whose sexual lives were severely affected had lower median scores (see Table 6). 

This study evaluated QOL and sexual function of patients with a stoma. The IIEF, IFSF, and SQOLS scores of patients with a stoma were found to be low, reflecting poor patient QOL and sexual function. 

Participants had an overall SQOLS mean score of 45.10 ± 18.88 with low subscales in all domains. On the SQOLS, the highest subscale score was for work/social function and the lowest score was for sexuality/body image. QOL impairment was most significantly related to the sexuality/body image domains in these patients. 

The lifestyles of patients with a stoma can be affected in different ways owing to physical and psychological problems. Physiological problems such as change in bowel habits, loss of stool control, and involuntary flatulence and odor may adversely affect body image, and the stoma may restrict daily and social activities. Consequently, descriptive and cross-sectional studies^9,12,25,26 have shown patients with a stoma may experience isolation, low self-esteem, and body image change, negatively affecting their daily lives and QOL.²⁷ Research that reports a decrease in the QOL in patients with a stoma includes a cross-sectional study (N = 2329) by Nichols²⁸ in the United States that compared patients with a stoma to a healthy general population and showed patients with a stoma have more difficulty engaging in physical activity. A cross-sectional survey (N = 255) by Ito et al²⁹ conducted among Japanese patients reported physical activity and social function were affected negatively by a colostomy. In a descriptive study that included 50 patients with a stoma, Zając et al³⁰ also found QOL was affected. A questionnaire survey³¹ involving Muslim patients (N = 100) indicated QOL was lower after creation of a stoma, which supports previous research showing a stoma adversely affects QOL and sexual life,^5,8-12 findings supported by the current study.

In the current study, most patients reported their sexual life and daily activities were affected negatively after creation of the stoma. A review study by Szczepkowski³² reported patients experience a change of body perception, decline in self-esteem, degeneration of sexual function, problems with spousal harmony, and many different psychiatric problems, most notably depression. The descriptive study by Karadağ et al¹¹ showed patients suffer social isolation due to odor and leakage (N = 43).

Men and women with a stoma commonly express fears about sexual problems and the appearance of the stoma, stool leakage, odor, noise, and opening of the colostomy bag during sexual intercourse, as well as refusal by their partners.^3,5,7,10 In a descriptive study by Nugent et al⁸ conducted among 542 patients with a stoma, 80% said QOL was affected and 40% suffered effects on their sexual life after stoma creation. According to a review of 17 studies by Sprangers et al,³³ individuals with a stoma have a higher rate of sexual and psychological problems. In open-ended, tape-recorded interview study of 9 Swedish patients with a stoma, Persson and Hellström¹⁰ indicated most experience anxiety about their sexual life and believe their sexual attraction was decreased. A systematic review by Brown and Randle¹⁷ reported individuals think their body is not like the old one after stoma surgery and they do not want to have sexual intercourse because they feel less attractive.

Stoma surgery affects the sexual lives of males and females differently.^3,8,27,34 Stoma surgery may lead to ED in men and loss of libido, dyspareunia, vaginal tightness, vaginal dryness, and sexual dysfunction in women.^5,10,34-37 Major physiological issues for men include ED and ejaculatory difficulties. For women, dyspareunia is the most common physiological problem.³⁴ A systematic review³³ of 17 studies reported 66% to 100% of men with a stoma suffer impotance, erection, and ejaculation problems; a study⁵ involving women showed 5% to 30% with an ostomy have sexual problems. Sexual problems are reported at different rates in studies by Karadağ et al¹¹ (74.4%), Nugent et al⁸ (40%), and Silva et al¹² (95% of ostomy patients and 81% of colostomy patients). A review by Bekkers et al³⁵ indicated sexual problems occurred within the first 4 months after stoma creation. A retrospective case control study (N = 42) by Ozturk et al³⁶ reported patients of both genders with a colostomy experienced sexual dysfunction. In a cross-sectional study in Iran among 96 stoma patients, Mahjoubi et al³⁷ found sexual dysfunction and satisfaction problems in both men and women, with women suffering to a greater extent. Results of a descriptive study (N = 261) by Milbury et al³⁸ showed 65% of men with colorectal cancer experience moderate to severe ED postoperatively and 42.5% of women experience severe sexual dysfunction. Additional studies underscore the extent of sexual problems in patients with a stoma.^7,39-42 The change of appearance, presence of a colostomy bag, and perceived compromise in personal hygiene after the stoma is created can lower the patient’s sexual desire. 

In this study, the median scores of sexuality/body image and overall SQOLS of the patients with a temporary stoma were higher than persons with a permanent stoma; this could be a factor of collecting data within the first year of the patients having a stoma. In a retrospective, case controlled study in Turkey involving 42 male and female patients with a colostomy, Ozturk et al³⁶ reported a higher frequency of sexual problems in patients with a permanent colostomy. A descriptive study (N = 178) in Turkey by Kuzu et al² found sexual life was negatively affected in both male and female patients with a permanent stoma. Results of a prospective study (N = 131) by Konanz et al⁴³ also indicated sexual function was lower in persons with a permanent as compared to a temporary stoma. A multicenter, cross-sectional study (N = 737) in Poland by Golicki et al⁴⁴ found both genders with a temporary stoma had better QOL and sexual function. A cross-sectional study⁴⁵ (N = 102) found male and female stoma patients with cancer had more sexual problems than non-cancer patients.⁴⁵ 

However, other cross-sectional and descriptive research⁴⁶ has shown that type of stoma does not have either a positive or negative effect on self-esteem. These results can perhaps be explained by the elderly patient population of the study. Temporary stomas can be closed within 1 year, except in special conditions; permanent stomas are lifelong for the patient.³⁶ Moreover, permanent stomas usually are created in older age groups and for persons in the late stages of cancer.⁴⁷ Wide excisions to remove the malignant tissue increase the risk of damaging the nerves involved in stimulating sexual organs. Permanent stomas may affect all aspects of a patient’s life. In this study, 54.5% of men were diagnosed with severe ED, and all female patients experienced sexual dysfunction.

The results of the study can be generalized only to patients representing the characteristics of this sample group. The small sample size and the lack of a control group also limit generelizability. Some of patients included in this study had a stoma for at least 4 months, which may have affected their sexual function and QOL scores. In addition, data were acquired via face-to-face interview. Because sexuality is commonly considered to be a taboo in Turkey, unwillingness to answer questions about sexuality may have compromised the size of the sample. Furthermore, not assessing the patients before they had a stoma and lack of long-term follow-up also may be limitations of this study. 

This study was conducted to evaluate factors affecting QOL and sexuality in persons with a colostomy. Results indicated that creating a stoma had a negative effect on patient QOL and sexual function. The SQOLS scores of patients with a temporary stoma were higher (better) than persons with a permanent stoma. More than half of male patients (54%) had severe ED and all women experienced sexual dysfunction. Further research that compares a similar population with a control group is warranted.

This study was presented at the 2nd International Congress of Graduate Students, May 12–14, 2017, Manisa, Turkey.

Dr. Yilmaz is a lecturer and Associate Professor, Faculty of Health Science; Ms. Celebi is a master’s student in surgical nursing, Institute of Health Science, Department of Surgical Nursing; Dr. Kaya is a general surgeon and Professor, Faculty of Medical School, Department of General Surgery; and Dr. Baydur is a lecturer and Assistant Professor, Faculty of Health Science, Department of Social Work, Manisa Celal Bayar University, Manisa, Turkey.

Please address correspondence to: Emel Yilmaz, PhD, Associate Professor, Manisa Celal Bayar University, Faculty of Health Science Department of Surgical Nursing, Şehitler Mah. İstasyon mevkii, 45020 Manisa, Turkey; email: emelyilmazcbu@gmail.com.