The Effect of Postoperative Telephone Counseling on the Sexual Life of Patients With a Bowel Stoma: A Randomized Controlled Trial

Sexual problems following ileostomy or colostomy surgery are common.

PURPOSE: The purpose of this study was to determine the effect of telephone counseling on the sexual lives of individuals with a bowel stoma.

METHOD: Using a randomized, controlled, quasi-experimental study design, patients who were between 18 and 70 years old, had a sexual partner, and had undergone ileostomy or colostomy surgery were eligible to participate. Patients were randomized to telephone counseling as needed (intervention) or regular outpatient follow-up care only (control) for 12 weeks following surgery. Sociodemographic data were collected, and the Golombok-Rust Inventory of Sexual Satisfaction (GRISS) was completed on admission for surgery and 6 and 12 weeks postoperatively. Data were analyzed using descriptive statistics and the Mann-Whitney U, Kruskal-Wallis, Friedman, Wilcoxon signed ranks, and chi-squared tests and Yates’s correction for continuity.

RESULTS: Of the 70 participants (35 in each group), the average age of intervention group participants was 53.00 ± 11.18 years, and the average age of the control group was 50.74 ± 13.72 years; 19 (54.3%) in the intervention group and 18 (51.4%) in the control group were male. Neither the demographic data nor the GRISS scale scores were significantly different between groups at baseline. After discharge, patients in the intervention group called to receive counseling for their concerns regarding sexual life and challenges they experienced with their stoma an average of 3.57 ± 0.86 (range 2–5) times during the first 6 weeks and 6.52 ±.77 (range 5–8) times between weeks 6 and 12. Mean total and subscale GRISS scores improved significantly from 5.89 ± 1.33 to 7.33 ± 1.24 (P <.01). 

CONCLUSION: In this study, telephone counseling was effective in improving the sexual lives of patients with a colon- or ileostoma 12 weeks after surgery.

According to a descriptive study and related ethnography,¹ individuals must adapt the sexual aspects of life to their postoperative body. Systematic reviews, intervention trials, and descriptive studies^2-9 describe the problems experienced by patients with a bowel stoma in this adaptation process; in particular, stoma patients may experience physiological, psychosocial, and sexual problems due to the existence of stoma.^2,4,8,9 Patients with a stoma may experience embarrassment and disgust regarding intimacy and may be anxious about leakage, odors, or being seen with the stoma. These feelings make them reluctant to return to the sexual lives they had before surgery.^5,8,10-13 A descriptive study¹⁴ in Turkey conducted among 56 couples showed half of the couples cannot return to their usual sexual lives after the operation, and female patients become less active in their sexual lives. 

The systematic review by Danielsen et al² of studies conducted between 1950 and 2012 found patients with a stoma who have been with their partners for a short time experience more sexual problems than longer-term couples. In their descriptive study conducted among colorectal cancer patients (N = 141; 18 past ostomy; 25 current ostomy; and 98 with no ostomy history), Reese et al⁷ determined that patients who underwent a stoma operation for the first time experienced more sexual problems than patients who already experienced a stoma. Vural et al¹⁵ conducted detailed interviews among 7 male and 7 female patients and found patients with a stoma were unable to return to their sexual lives right after the stoma operation but regained their sexual lives in the postoperative second month; patients who were unable to start their sexual lives experienced physiological and psychological problems. 

Stoma care nurses can provide patients with stoma support so they can cope with these problems and adapt their daily lives to life with a stoma. Vural et al¹⁵ reported that patients with a bowel stoma wanted to have more knowledge about returning to sexual activity following the ostomy surgery. The authors recommended additional training and counseling on sexual functions for everyone who underwent an ostomy surgery. Results of an experimental study by Ayaz and Kubilay¹⁰ (N = 60) showed that patients receiving care according to the Permission, Limited Information, Specific Suggestions, Intensive Treatment (PLISSIT) model had better sexual function and experienced fewer problems with regard to sexual satisfaction and activity frequency than patients who did not receive this care (P <.05). 

No study has investigated the effect of telephone counseling on the sexual lives of patients with a stoma. In their 2014, telephone-based study on the sexual problems of patients with colorectal cancer and their spouses (including 3 patients who had stoma surgery), Reese et al¹⁶ underscored the role of a telephone-based approach toward problems with sexual life. The study highlighted the value of telephone-based interviews with colorectal cancer patients regarding their sexual problems. In Turkey, it is taboo to discuss sexual problems, similar to other moderately developed/least developed countries. However, telephone counseling can be considered a support for patients with stoma in their adaptation to their “new” sexual life. Therefore, the purpose of this study was to determine the effect of telephone counseling on the sexual lives of individuals with a bowel stoma. 

Study design. This randomized, controlled, quasi-experimental design study was conducted to examine the effects of phone counseling on sexual problems of individuals with a stoma.

Setting. The study was conducted at Çukurova University Balcalı Hospital, the largest hospital in Adana, Turkey, and the only one with a stoma therapy unit. The unit operates between 8 am and 5 pm on weekdays. Two (2) nurses work in the unit, and the study researchers are certified by the Turkish Ministry of Health regarding stoma care training. One researcher has worked in the stoma therapy unit as a nurse for 18 years, and the other has 10 years’ experience working with patients with a stoma. The stoma therapy unit serves individuals from other clinics of the hospital as well as people and families coming from other centers. Wound, fistula, and incontinence care is performed as well.

Study sample. The study was conducted between March 12, 2017, and December 27, 2017. Eligible study participants had to be between 18 and 70 years old, have a sexual partner, and have undergone ileostomy or colostomy surgery. Persons who were illiterate (self-reported responses were considered more truthful than when a literate participant read and answered the scales independently), had a urostomy, were diagnosed with a psychiatric disease or used psychotropic medications (mental disorders and psychotropic agents can adversely affect sexual life, reducing sexual desire and leading to impotence and sexual arousal dysfunction⁴) were not eligible to participate. All patients who fit the criteria were recruited and randomized into 2 groups — an intervention group (provided telephone counseling) and a control group (did not have telephone counseling). A computer program generated random numbers (1 or 2) for participation. As a result of a power analysis conducted based on a similar study, sample size was determined to be a minimum of 35 individuals for each group.

The intervention group received telephone counseling in addition to the routine follow-up conducted by the stoma therapy unit at postop weeks 1, 2, and 4 and then once a month after discharge. Stoma care and adaptation training were provided to both groups in the stoma therapy unit. For consistent and similar telephone counseling, one researcher provided the counseling using a phone line dedicated for the study; no particular counseling method was employed. The telephone counselor focused on the sexual problems experienced due to the existence of stoma per the patient’s request. 

During their first appointment at the stoma therapy unit 1 week after discharge, patients were encouraged to resume their sexual lives. Patients were informed they could call the dedicated telephone line if they experienced any problems or had any questions regarding their sexual lives any time throughout the day and guaranteed that the phone call would be answered promptly. Intervention group patients continued with their routine care, training, and check-up in the stoma therapy unit. Patients had an active role in telephone counseling by calling when they needed.

Control group participants were provided routine check-ups in the stoma therapy unit. Telephone counseling was not a routine practice in the stoma therapy unit. 

Procedure. Patients planning to undergo stoma surgery were asked to participate in the study, provided written informed consent, and interviewed before the operation. They completed the Questionnaire for Individuals with Intestinal Stoma and the Golombok-Rust Inventory of Sexual Satisfaction (GRISS) instrument. At the first visit after surgery, intervention group members were interviewed, given the phone number for counseling, and encouraged to call concerning their sexual problems. Patients were informed they could request an extra appointment if they experienced problems or wished to receive counseling. The stoma therapy unit provided patients with training and counseling regarding the problems they might experience during stoma care and challenges in their daily lives with a stoma.^17,18 

During their follow-up visits in the stoma therapy outpatient clinic after discharge, intervention and control group members again completed the Questionnaire for Individuals with Intestinal Stoma as well as GRISS at postoperative weeks 6 and 12. The 12-week time frame was selected because temporary stomas are generally closed after week 12. 

Data collection. The following instruments were used to collect data.

Questionnaire for Individuals with Intestinal Stoma. The Questionnaire for Individuals with Intestinal Stoma, developed by the researchers, consists of 2 sections regarding descriptive characteristics and stoma-related data. Descriptive characteristics were collected before surgery and stoma data were collected after surgery. The section on descriptive characteristics includes 14 questions about sociodemographic features such as gender, age, marital status, education level, occupation, and whether health care is provided by the government. The section on stoma-related data includes 10 questions regarding stoma status (temporary, permanent), type of stoma (ileostomy, colostomy), the reason for stoma creation, location (eg, low anterior resection, abdominoperineal resection), who is providing care (self, self with help, relative, caregiver), and the effect of the stoma on sexual life (open-ended question). 

GRISS. GRISS is a 28-item relationship tool used to identify and monitor sexual issues. It is implemented among heterosexual individuals with a steady partner or married couples and also can be used to evaluate the effectiveness of sexual treatment methods. The instrument was tested for validity and reliability in Turkey by Tuğrul  et al.¹⁹ The female version provides a total GRISS score along with subscale scores for anorgasmia (the extent to which a woman can achieve orgasm), vaginismus (vaginal tightness), noncommunication (how well a couple can discuss sexual problems), frequency (how often sex occurs), female avoidance (the extent to which the woman is having sex), female sensuality (how often the woman feels pleasure), and female satisfaction (the extent to which the woman is satisfied with her partner). The male version produces a total score along with subscale scores for impotence (ability to achieve an erection), premature ejaculation, frequency (how often sex occurs), male avoidance (whether the man is avoiding having sex), sensuality (whether the man experiences pleasure), and male satisfaction (how satisfied the man is with his partner).^4,10 GRISS responses comprise a Likert-type scale where  0 = never, 1 = hardly ever, 2 = occasionally, 3 = frequently, and 4 = always. For consistency purposes, negatively structured questions are reversely coded while interpreting the scale.²⁰ The reversely coded items in the women’s form are 2, 4, 5, 8, 9, 10, 11, 15, 16, 17, 19, 21, 22, 25, 26, 27, and 28. In the men’s version, the reversely coded items are 1, 2, 3, 4, 8, 9, 12, 13,15, 16, 19, 20, 21, and 25.¹⁹ The total score offers a general idea regarding the quality of sexual function, while subdimension scores provide detailed information about the various aspects of a sexual relationship. The raw scores gathered from the scale are later transformed into standard scores from 1 to 9; if the score is 5 or above, the sexual relationship or functions are hindered in that subdimension. GRISS was previously used in the literature for studies on the sexual satisfaction of stoma patients.^4,10

Statistical analysis. Data were collected using paper-and-pencil forms and entered directly into IBM SPSS Statistics, version 22 (IBM Corp, Armonk, NY) by the researchers for data analysis. Compliance of the parameters with normal distribution was assessed by the Shapiro-Wilks test; it was determined the quantitative data were not compliant with normal distribution. In addition to descriptive statistical methods (mean, standard deviation, frequency), the Mann-Whitney U test was used for the comparison of quantitative data between the 2 groups to evaluate the study data (eg, the Kruskal-Wallis test was used for comparison of data between more than 2 groups). The Mann-Whitney U test also was used to identify the group that caused the difference. The Friedman test was used to compare the variables in interviews 1, 2, and 3, (ie, before surgery and at postoperative weeks 6 and 12), and the Wilcoxon signed ranks test was used to identify what caused any differences. Chi-squared test, Yates’s correction for continuity, and Fisher’s exact chi-squared test were used to compare qualitative data. The results were evaluated in the 95% interval; P <.05 indicated statistical significance.      

Ethical considerations. Ethics committee approval was received from Çukurova University Medicine Faculty Ethics Committee before the study was conducted (March 3, 2017; Number of meetings: 62; Decision No: 32). The informed consent form was read to study participants, and their written permission was obtained. The study was conducted in accordance with the principles of the Declaration of Helsinki.

Patient characteristics. Of the total clinic population of 79, 70 patients participated in the study (35 in each group). The average age of intervention group participants was 53.0 ± 11.18 years, and the average age of the control group was 50.74 ± 13.72 years (see Table 1). Nineteen (19, 54.3%) in the intervention group and 18 (51.4%) in the control group were male, and 18 (51.4%) in the intervention group and 17 (48.6%) in the control group worked before surgery, but all patients in both groups were not working following ostomy surgery and 34 (97.1%) in the intervention and control groups similarly found their incomes were insufficient. Thirty (30, 85.7%) in the intervention group and 34 (97.1%) in the control group had government-provided health care, and 41.8% of both the intervention and control groups graduated from primary school. No statistically significant difference was found between the intervention and control groups in terms of sociodemographic characteristics (see Table 1). 

Illness and stoma characteristics. Eighteen (18, 51.4%) in the intervention group and 21 (60.0%) in the control group underwent ileostomy, and 26 (74.3%) in the intervention group and 25 (71.4%) in the control group had a temporary stoma. Among both groups, 27 (77.1%) underwent stoma creation due to intestinal cancer; the groups were similar with regard to receiving chemotherapy and/or radiotherapy treatment before and after surgery (see Table 2). When the individuals were asked what they felt when they first saw the stoma, 26 (74.3%) in the intervention and 25 (71.4%) in the control group reported they felt sorry for themselves. No statistically significant difference was found between the intervention and control groups in terms of disease and stoma characteristics (see Table 2).

After discharge, intervention group patients called to receive counseling for their concerns regarding sexual life and challenges they experienced with a stoma on average 3.57 ± 0.86 (range 2–5) times between discharge and week 6, 6.52 ± .77 (range 5–8) times between weeks 6 and 12, and an average of 2.97 ± 0.86 (range 1–4) times between weeks 1 and 12. Problems that required counseling were documented and included lack of sexual desire between discharge and week 6 (14, 40%), with 3 (8.57%) intervention group members reporting continuation of this problem between weeks 6 and 12. Other reasons for calling included positioning during sex (25, 71.4%), gas sound and excrement leaking during sexual activity (28, 80.0%), avoiding sex (21, 60.0%), discomfort due to seeing the ostomy appliance (23, 65.7%), and worrying about damaging the stoma during sexual activity (18, 51.4%). Sixteen (16) women (43.75%) experienced pain during sex. 

Effects of telephone counseling on sexual life. All individuals in both groups shared the same bed with their spouses before surgery. At the end of week 12, 29 (82.9 %) intervention and 18 (51.4 %) control group patients slept in the same bed as their spouse.

When considering who performed stoma care, self-care was achieved by the end of week 6 among 13 (37.1%) in the intervention group and by 4 (11.4%) in the control group (χ² = 6.565; P = .38). At the end of week 12, significantly more patients in the intervention (24, 68.6%) than in the control group (10, 28.6%) (χ² = 12.598; P = .002) performed stoma care by themselves (see Table 3).

Patient issues regarding sexual life were identified as worry about appliance dislodgement during sexual activity (week 6: intervention and control group 6 each [17.1%]; week 12: intervention group 4 [11.4%], control group 13 [37.1%]), lack of desire for sexual activity (week 6: intervention group 14 [40.0%], control group 13 [37.1%]; week 12: intervention group 3 [8.6%], control group 0 [0.0%]), worry about being disliked by the partner (week 6: intervention group and control group 4 each [11.4%]; week 12: intervention group and control group 0 [0.00]), do not want to see the stoma and appliance (week 6: intervention and control group 4 each [11.4%]; week 12: intervention and control group 8 each [22.9%]), concern about sexual performance (week 6: intervention group 3 [8.6%], control group 5 [14.3%]; week 12: intervention group 13 [37.1%], control group 1 [2.9%]), lack of sexual appetite (week 6: intervention group 3 [8.6%], control group 1 [2.9%]; week 12: intervention group and control group 7 each [20.0%]), and pain (week 6: intervention group and control group 1 each [2.9%]; week 12: intervention group 0 [0.0%], control group 6 [17.1%]). At the end of week 6, intervention and control group members had similar anxieties about sexual life (χ² = 1.648; P = .949). At the end of week 12, the intervention group experienced fewer anxieties than the control group. Anxieties decreased significantly in both groups at the end of week 12 (χ² = 16.257; P = .012) (see Table 3). 

No difference was noted in the GRISS total and subscale scores between women in the intervention and control groups in the preoperative period and postoperatively at week 6 or in the communication and avoidance scores in postoperative week 12. On the other hand, a significant difference (P = .000)  was noted in the GRISS total and subscale scores regarding sexual frequency, satisfaction, sensuality, vaginismus, and anorgasmia in women in the intervention group in postoperative week 12 (see Table 4 and Table 4 Cont.). 

No difference was noted in the total and subscale GRISS scores between men in the intervention and control groups in the preoperative period and postoperative week 6, but statistical differences in men’s total and subscale scores at week 12 were noted in all categories except for the scores of sexual frequency (P = .00)  (see Table 5 and Table 5 Cont.).

Significant improvements were noted in the GRISS total and subscale scores in all patients in both groups by postoperative week 12 (P = .000) (see Table 4, Table 4 Cont., Table 5, and Table 5 Cont.).

The literature underscores that having a stoma has a negative impact on the sexual lives of patients.^{4,5,7,10,11,13,20-23}  In their qualitative study, Shaffy et al²⁴ observed that some patients completely stopped having sex after the stoma surgery owing to anxieties including appliance failure, reluctance for the partner to see the stoma and appliance, lack of sexual drive, fear of being disliked by their partner, sexual performance, and pain. Patients experienced these anxieties more intensely within 6 weeks postop and abstained from returning to their sexual lives within that time frame. Patients with a stoma experience adaptation problems more intensely during first weeks due to physiological and psychological problems.^10,12,20 In their experimental study involving telephone counseling, Ayaz and Kubilay¹⁰ also emphasized that patients with a stoma experience anxiety regarding stoma appliance dislodgement or leakage, feeling sexually unattractive, and sexual dysfunction and observed that patients were able to return to their sexual lives in postsurgical week 6. This study included 30 persons in each group and found sexual anxieties of patients in the intervention group significantly decreased after week 6 compared with the control group (P <.05).

Patients with a stoma may experience physiological problems such as malodor, leakage, and gas as well as psychological problems including altered body image, anxiety, and shame within the first postoperative weeks.^{5,7,9,10,12,21} Interruption of sexual life is an expected situation due to stoma care and stoma adaptation problems,^10,12 as well as recovery from surgery. In the present study, an expected significant decrease was noted in GRISS total and subscale scores among both genders in the intervention and control groups in postoperative week 6. Telephone counseling did not affect sexual life for the first 6 weeks after surgery.  

All of the patients (both intervention and control groups) in the present study shared their bed with their spouses before the operation. However, after the stoma operation, 82.9% in the intervention and 51.4% in the control group shared a bed with their spouses. These findings are supported in the literature. The study by Ayaz and Kubilay¹⁰ found 80% of stoma patients stopped sharing the same bed with their partners. A qualitative study by Vural et al¹⁵ (N = 14) investigated the impact of stoma on individual sexual lives and reported that partners slept in separate beds because of stoma discomfort. In the current study, telephone counseling was found to have a positive effect on patients sharing their bed with their spouses. 

In a qualitative study of 30 women who had a stoma for at least 5 years, Ramirez et al²⁵ observed that patients experience severe sexual problems during the first few months following stoma surgery, that problems decreased over time, and that women were able to reconstruct their sexual lives. The same study underlined the importance of supporting patients via training and counseling in the first months following surgery. Reese et al¹⁶ highlighted the significance of telephone counseling in supporting the sexual problems of patients with colorectal cancer. Ayaz and Kubilay¹⁰ reported that the GRISS total and subscale scores were higher in patients with a stoma using the PLISSIT model. In the present study, a significant difference between intervention and control group women was noted in GRISS total and subscale scores regarding sexual frequency, satisfaction, sensuality, vaginismus, and anorgasmia in postoperative week 12. Among men, significant differences between the intervention and control groups were seen in the total and all subscale scores at week 12 except for the scores of sexual frequency. These significant differences suggest that the telephone counseling service offered was effective. 

In their study comparing the sexual life of patients with colorectal cancer with and without a stoma, Reese et al⁷ noted gender may affect sexual problems of patients with a stoma. Women have been reported to be more sensitive to psychological problems⁷ as reflected in the subscale scores for communication and avoidance, with no significant difference between the intervention and the control groups. A prospective study²⁶ and 2 descriptive studies^27,28 have noted that sexual problems of women with a stoma are associated with finding themselves less attractive. Research⁴ also has shown a positive correlation between a woman’s self-esteem and sexual frequency, communication, and satisfaction GRISS scores. The sexual lives of men with a stoma are affected not only by problems caused by surgical procedures to address erectile dysfunction and ejaculation problems, but also by body image.⁶ Performance anxiety is among the primary psychological factors inhibiting sufficient stimulation and thus erection and satisfaction in men.⁴ In the present study, the problems of male patients continued for weeks as noted by the subscale scores for sexual frequency, sensuality, and impotence, with no significant differences between the intervention and control groups. Men with a colostomy or ileostomy) also have been shown⁴ to experience problems with sexual frequency more than women. In a descriptive study, Platell et al²⁸ emphasized that male patients experience erectile problems intensely after the stoma operation. 

The results of the current study show supporting patients through telephone counseling in the early stages after stoma surgery can make a significant difference in their sexual lives. Research to examine the effect of including the spouses of patients with a bowel stoma in telephone counseling may provide additional insights in how to best help stoma patients following surgery. 

The only stoma therapy unit is in the eastern Mediterranean of Adana, Turkey. Patients in the peripheral areas may be hindered in having stoma therapy unit follow-up due to transportation problems, although telephone counseling still could be provided. However, this study included patients (in both the intervention and control groups) from the city center. Sexual lives of patients with a temporary stoma were not evaluated after their stoma was closed. 

Results of a study to determine the effect of telephone counseling on the sexual lives of individuals with a bowel stoma indicated that telephone counseling was effective in improving the sexual lives of patients with a colon- or ileostoma 12 weeks after surgery. This suggests that patient counseling about sexual life following stoma surgery is effective. As in many other countries, patients with a stoma in Turkey have problems finding or accessing the services of stoma care nurses. Telephone counseling may increase the ability of patients who do not live near a stoma care nurse to access this care. Additional studies with larger patient samples and including patient partners are needed. 

Please address correspondence to: Seçil Taylan, PhD, Temel Eğitim Mah,  Kumluca Sağlık Bilimleri Fakültesi 07350 Kumluca-Antalya, Turkey; email: taylansecil@gmail.com or seciltaylan@akdeniz.edu.tr.