The Ostomy Files: Sexuality after Ostomy Surgery
Love built on beauty, soon as beauty, dies. — John Donne
Regardless of a person’s age, diagnosis, or sexual preference, ostomy surgery infringes on the high value society places on beauty, body, sexuality, cleanliness, and self-control.1 Changes to the body after ostomy surgery are not only visible to the individual who had the surgery, but also to the sexual partner. The feelings of the person with a stoma and how intimate partners cope with those changes can alter sexual desire as well as sexual activity. Even well informed people have difficulty making these adjustments.
In addition, ostomy surgery can have a real affect on sexual functioning, particularly in men who have had their bladder or rectum removed due to cancer (leading to erectile dysfunction [ED]). Add this to the presence of the stoma and an external pouching system collecting urine or stool and the impact of ostomy surgery can intimidate intimacy and make the bedroom a testing ground where each partner puts acceptance on the line. In one study involving people with a stoma,2 more than half of the participants reported a reduction or discontinuation of sexual relationships. Study participants blamed the physical changes caused by the surgery as well as psychological problems not related to the surgery; for example, not feeling attractive or desirable.
Depending on the relationship, the healthy partner often takes on the role of caregiver of the partner with the ostomy, helping with the most intimate and private of bodily functions: toileting. This new role sometimes makes it difficult for the partners to feel like lovers again.2 Depression after ostomy surgery is normal; occasionally, loss of libido is actually a symptom of depression. Couples need time to adjust and recuperate psychologically and physically from the surgery and adjunctive therapies such as radiation or chemotherapy.
In a 1966 study of partners of people with an ostomy,3 researchers found the main life change caused by the ostomy was the reduction or absence of sexual relations, mainly as a result of unresolved psychological problems. It also has been reported that partners had a higher level of anxiety and stress than the patient.4 Often, partners are afraid of hurting the stoma during sexual activity. This fear can be allayed by openly discussing any physical limitations such as pain or particular fears or concerns. Same-sex partners have issues similar to heterosexual partners5 — fear of rejection or being unattractive. Partners, whether homosexual or heterosexual, need to openly discuss their feelings and anxieties about the ostomy and how such emotions might impact their relationship.
Schover2 suggests that persons with a stoma imagine themselves in the shoes of their partners. Schover urges the ostomate to imagine the partner is the one with the ostomy, with the same body changes or issues that concern the ostomate. The ostomate is encouraged to imagine making love to this person. During this exercise, the person should ask him- or herself some direct questions: How would you feel about your partner? Would you be “turned off?” Would you still be able to enjoy sex? Would you stop having sex? Would you end the relationship? How do you think your reactions would make your partner feel? How would your partner feel about not having sex? About ending the relationship?
Sex is not always about what occurs between the legs. It is more about what happens between the ears. It is as much emotional and psychological as physical. An ostomy pouching system the patient finds appealing can help make a person with a stoma feel more comfortable during intimacy by providing odor protection, flatus control, a low profile, and a sense of security. Smaller, flesh colored, low-profile pouching systems, pouch covers, or even specially designed underclothing can make a difference. A wide variety of pouching systems are available from which the patient may choose until the “right” system has been identified.
Communicating openly and honestly is the only way to clear the hurdle of sex and intimacy after ostomy surgery. If partners are unable to establish this communication on their own, a professional sex therapist should be consulted.
The way to love anything is to realize it might be lost. — Gilbert K. Chesterton
The Ostomy Files is made possible through the support of ConvaTec, a Bristol-Myers Squibb Company, Princeton, NJ.