“I'D RATHER DIE than have a colostomy,” he said.
“What about me? Would you rather I die than have a colostomy?” I asked.
“Of course not,” my husband replied, rather automatically. My feelings were hurt. “I think I'm going to wear an ostomy pouch for a week; just to see what it's like,” I said. “Would you have sex with me if I had one?”
“We'd have to work things out,” he responded, not realizing the impact of his words.
As part of a graduate class on understanding chronic illnesses from a patient's perspective, I spent most of a semester listening to patients as they spoke with me and their wound, ostomy, and continence nurse (WOCN), whom I was assigned to follow as part of the class. The patients I spoke with had either temporary or permanent ostomies. Although I never tried wearing an ostomy pouch, I tried to find out how people's lives changed after ostomy surgery through interviews with patients; my focus was on their sexual health. This article describes what I learned.
My graduate class really got me thinking about the challenges patients with ostomies face. A plethora of literature about changes in body image and sexuality is available, but reading about something and truly understanding it can be quite different. For example, even if I were to wear an ostomy pouching system, I'd know it's not permanent; I could remove it at will, and there'd be no odor. I wouldn't have to use a side-lying position during sex, or worry about gas or leakage. I could run, swim, and work in an ED for 12 hours without a bathroom break. I could have unencumbered sexual relations with my husband. In short, it would only be an experiment, not my reality.
A WOCN introduced me to patients and I had numerous conversations with them about what living with an ostomy is like. (See Gaining consent.) From a review of the literature and these conversations, I realized that the issue of sexual function following an ostomy is important to patients but poorly researched and rarely discussed.
Body image fears
Four key psychosexual issues faced by patients with ostomies have been identified: alteration in body image; inability or loss of desire to have intercourse due to physical and/or psychological aspects of surgery; psychological and emotional responses in adjusting to surgery including communication difficulties between patient and partner; and infertility due to the nature of surgery, disease, or treatment.1 Both male and female patients with ostomies experience fears associated with the ostomy, including appearance (feeling sexually unattractive), noise (uncontrolled flatulence), leakage, and pain.2,3 Specifically, patients tend to be concerned about how their partners will react and about possible dislocation and opening of the ostomy pouch during intercourse. Partners tend to fear hurting the patient by making contact with the stoma during sexual activity.3
Ostomy-forming surgery has a profound impact on sexual relations. In one study, a researcher noted that approximately half of the patients in the study didn't have sexual relations after ostomy surgery.4 This may have been related to both physical (leakage, gas, odor) and psychological (appearance and embarrassment) issues.4 Many partners have a negative reaction or exhibit hesitancy when engaging in sexual activity.5 This reinforces the patient's misgivings, such as feeling abandoned by his or her partner. This, in turn, lowers self-esteem and negatively affects body image.3
Same-sex partners have issues similar to opposite-sex partners, including fear of rejection and unattractiveness.3 Gay or bisexual men who practice anal intercourse may find their sexual expression greatly altered due to the removal of the rectum and closure of the anus associated with some types of colostomy surgery.5
Lesbian, gay, bisexual, transgender, and questioning (LGBTQ) men and women have an increased risk of social isolation, depression, and suicide.5 Those living with an ostomy may be at an even higher risk for inadequate counseling if they're reluctant to disclose their sexual orientation due to fear of prejudice.5 Counseling plays an important role in helping patients cope with sexual problems.
Insight into patients' experiences
Through my research, I discovered that sex is rarely discussed with patients before ostomy surgeries, even though it's a significant issue and can have a profound effect on a patient's life. During my conversations with patients, six in total, I attempted to gently broach the subject of sexual activity. I was quite surprised at how open everyone was to sharing intimate thoughts and experiences.
- One patient, Mr. A, a vibrant 66-year-old, shared that he'd been with the same woman for over 20 years. But since his ileostomy surgery 6 years ago, he hasn't had any kind of sexual relations with her. Sitting at a small metal table in the rotunda of a community hospital, this man, who'd been so positive and jovial in discussing how he's coped with having an ostomy, suddenly looked down and clasped his hands, pausing a moment before he continued. “No one mentioned this would be an issue. Not even the support groups, my surgeon, the nurses, no one. And I have to be honest with you; it affects performance, that's for sure. It has definitely affected my sex life…nerves were cut, I've got less sensitivity. I mean I've tried everything…I even have Viagra, but no, they don't even talk about it at conferences. Maybe society assumes older adults don't have sex, but we do, just like everybody else.” I asked how he's adjusted. He shared that it has definitely impacted his relationship. “It's a personal thing, she's never touched it; now it's a reality and I just focus on other things.”
- I spoke with Mr. B, 37, just 2 weeks after his emergency ostomy surgery to treat an intestinal perforation. He was still hospitalized due to complications.
Mr. B's hospital room was dark; the blinds were drawn and he was still in bed in the middle of the day. His nurse told me that he was physically able to ambulate without assistance; in fact, he was going to be discharged later that day.
After brief small talk, I asked him about intimacy and body image.
“You should have seen how she looked at me!” he whispered harshly, remembering how his girlfriend of 2 years had reacted to the ostomy. “She's probably going to break up with me; I mean would you want to have sex with someone who has a pouch on his belly?” Tears streamed down his face. “She hasn't come in, she says the baby is sick, but she won't even call me!”
I changed the subject, inquiring about the word “Alive” tattooed on his bicep.
“Two years ago I survived a 75 mph motorcycle crash, I just got up and walked away, but I couldn't survive a bug in my intestine…and now I have this…” pointing to the ostomy. “How am I supposed to live with this?”
- Mr. C, 43, had a temporary ileostomy due to severe diverticulitis. He talked to me 6 weeks after his surgery. As with the other patients, I asked about a number of issues including intimacy, body image, and his marriage. “It does impact sex,” he stated. “It's put a big hold on that. I found I could get an erection but that's about it. My wife and I have been celibate since the surgery. The biggest issue is psychologically. I…we, just can't do it. I mean, the pouch…it's there. I can't wait for it to be reversed.”
He shared that his wife has seen the stoma and helps him change the pouch regularly but they “just don't talk about sex. We're just kind of friends for now. I hope we'll get back to normal after the reversal.”
- Ms. D, a 51-year-old lesbian, said, “I read pamphlets about it but no one talked about it. It's kind of funny, I was reading something about how we're not supposed to use the stoma as an 'orifice' for sex. I just about fell out of my chair! I mean, who would even consider that? It's just gross.”
Ms. D was about 10 weeks post-op after a colostomy for a bowel obstruction. In a small, smoke-filled apartment that she shares with her sister, nieces, and nephews, she confirmed that she wasn't in a relationship at this time and didn't want one. I asked about the future, if she were to find someone.
“You mean like on meetanostomate.org?” she asked. I was pleasantly surprised she was aware of the online site for people having undergone ostomy surgery. “I don't see it as a future issue. I got a hysterectomy and my sex drive is down to absolutely none since then. If I do get into a relationship and it becomes an issue then…well, too bad,” she said.
- For 67-year-old Mrs. E, who has been married for 48 years and was 3 weeks post-op after urostomy surgery, “sex hasn't been an issue yet…it's too soon and besides we prefer cuddling over anything else.”
- Mrs. F, 87, had undergone a colostomy 6 months earlier and expected it to be reversed. She told me she learned about caring for an ostomy because her husband had one for over 10 years before his death. I asked her if it impacted their intimacy.
“No. He had all kinds of other issues like dementia and heart failure so all we did was try to get through every day loving each other in the simple ways we could.”
Developing a trusting relationship is key to helping patients like these cope with body image changes and sexual issues. Unfortunately, conversations about intimacy are one of the most challenging that nurses and other healthcare professionals can have with their patients.2 When the focus is on physical problems, discussions about sexual functioning may not occur.2 Healthcare providers may feel inadequately prepared to discuss issues of sexual health and patients are too shy to bring up the topic.6
The American Society of Colon and Rectal Surgeons and the Wound, Ostomy and Continence Nurses Society advocate for pre-op counseling to discuss a variety of issues—counseling is cited as an essential component for patient coping.7 Discussing sexual health is part of counseling, which means that healthcare professionals have an obligation to address sexual health and intimacy concerns with all patients.6,8
Nothing is off limits
Nurses should not only encourage patients to discuss sex, but they should also be willing to initiate the discussion rather than waiting for the patient to broach the subject. Nurses need to provide patients with an opportunity to voice their feelings and concerns.9 Included in this discussion should be an assessment of any preexisting sexual concerns or problems that could impact adjustment to an ostomy.9
One way to discuss intimacy with patients is using the Permission, Limited Information, Specific Suggestions, and Intensive Therapy (PLISSIT) model.2 (See How to use the PLISSIT model.) This tool lets nurses easily convey to patients that intimacy and sexual functioning are appropriate topics to discuss. Utilizing the PLISSIT model helps nurses individualize interventions and strategies to address patient-specific concerns. For example, the nurse may offer specific suggestions such as emptying the pouch before engaging in sexual activity to minimize concerns of pouch leakage or dislodgement.10 Opaque pouches are available to minimize visualization of the stoma. Using a smaller pouch during intercourse may help minimize the feel and look of the larger one.3,10
These conversations shouldn't be limited to nurses and patients; open discussions on intimacy should also be encouraged between partners. An ostomy is a visible reminder of an illness, and that illness impacts the partner, too. How well partners cope with a patient's illness and treatment can alter sexual desire and activity.3 The healthy partner often takes on the role of caregiver; neither the partner nor the patient may feel as romantic as they did before the surgery.3
In one study, researchers discovered the important role a partner (specifically a male partner/husband) has in patient coping.11 Researchers found the husband's demonstration of support or lack thereof had considerable impact on a patient's psychosocial adjustment. Ultimately, positive interpersonal relationships and stoma acceptance are highly correlated.12,13
The path of healing
Besides including the partner in these discussions, nurses might consider giving patients educational materials or a list of interventions that the partner might utilize for additional support, such as the United Ostomy Associations of America, Inc.'s Intimacy After Ostomy Surgery Guide.3 Draw on other healthcare resources if neither the patient nor the partner is comfortable discussing this issue with a nurse; these include sex therapists, family counselors, psychologists, psychiatrists, and support groups familiar with ostomy surgery.3,11
Some patients may be reluctant to discuss intimacy and sex because doing so is considered improper in their culture.5 Nurses need to be sensitive to the varied values, beliefs, and practices in ethnically and culturally diverse populations.
Throughout these conversations, nurses must convey empathy, respect, and open-mindedness. If the patient senses that the nurse is uncomfortable with the topic, the therapeutic relationship may be lost and the patient is less apt to seek additional support.1 Nurses can begin to have therapeutic conversations with patients at the first visit. A key component is establishing a trusting relationship. The nurse needs to convey a lack of judgment and bias and reassure patients that, aside from suicidal thoughts, conversations will be confidential. An easy way to start a conversation is to say, “An ostomy can affect many aspects of your life, which may include intimacy. Would it be okay for us to discuss this topic?” Even if the patient isn't ready to talk about intimacy, the nurse has opened the doors to a future conversation. It's up to nurses to help these patients start their journey toward healing both their bodies and minds.
This article is based on transcribed conversations I had with individual patients while following a WOCN as part of a graduate class on understanding chronic illness from patients' perspectives. Consent was obtained first by the WOCN, who asked the patients if it was permissible for me, a graduate student, to speak with them. Once verbal permission was received and recorded, I began the interview, asking each patient some general questions related to living with an ostomy. Thematically, I discovered the topic of intimacy and sexuality hadn't been addressed with the patients before. During each session I recorded the conversations and went over my notes with the patients to make sure I understood what they said. I also double checked my notes and comprehension with the WOCN.