An ostomy is a surgically created opening in the abdomen for waste elimination (either urine or stool) after the removal of a portion of the digestive or urinary system. Many people with abdominal or pelvic cancers may need to have a temporary or permanent ostomy created during the surgical treatment of their cancer.
Individuals with ostomies may encounter challenges in physical and emotional intimacy due to concerns about body image, decreased self-esteem, fear of experiencing a leak from the ostomy, altered bodily functions, and fear of rejection. All of these factors can negatively impact their relationships and overall well-being.
The Ostomy Self-Management Training (OSMT) program, a 3-year multicenter trial, explored the impact of a telehealth program on postoperative ostomy patients’ quality of life. Participants who were involved in the study underwent 5 weekly telehealth group sessions, addressing various subjects like ostomy care, social anxieties, and intimacy.
For the study, participants used a scale of 0-10 to answer five questions from the City of Hope Quality of Life–Ostomy survey:
- How difficult is it to look at your ostomy?
- How satisfied are you with your appearance?
- Has your ostomy interfered with your personal relationships?
- How much isolation is caused by your ostomy?
- Has your ostomy interfered with your social activities?
These answers were then analyzed using a special model adjusted for age to determine an overall intimacy score for each of the participants.
In the end, 87 individuals provided data for a composite intimacy score at baseline and follow-ups.
Sexual activity varied widely among the participants after their surgeries, with 41% stopping sexual activity, 38% remaining inactive, and 20% continuing sexual activity. Of those who were sexually active post-ostomy, 35% were nervous about having sex. However, more women than men were concerned about having sex after getting their ostomy (50% vs. 27%).
Despite sexual frequency differences, 82% had minimal issues undressing in front of partners after treatment. Nevertheless, women were more likely to report feeling uncomfortable undressing in front of their partners than men (27% women vs. 12% men). After 6 months, there were notable improvements in the composite intimacy scores of the individuals who participated in the OSMT program compared to those who had usual care, possibly because OSMT allowed for the discussion of sensitive topics.
Ultimately, the results of this study showed that the OSMT program had a positive impact on the participants’ relationship intimacy. This suggests that education on ostomy management might be able to enhance intimacy by addressing people’s physical and emotional concerns, fostering understanding, and promoting communication between partners.
At the same time, people with cancer (of any type) should be aware that their health care provider may not ask about their sexual well-being after treatment. This does not mean you cannot bring the matter to their attention. Patients should feel empowered to ask their providers about their sexual health, and they may be able to counsel them on how to remain sexually active with a minimal risk of ostomy leakage. Alternatively, they can refer patients to cancer-informed sex therapists who can help them to develop confidence and appropriate strategies.
For more information on this topic, please read these publications from the ISSM Journals: The Journal of Sexual Medicine, Sexual Medicine Reviews, and Sexual Medicine Open Access:
Nehemiah, A., Zhang, S., Appel, S., Dizon, D., Sun, V., Grant, M., Holcomb, M.J., Hornbrook, M.C., & Krouse, R.S. (2023). Intimacy and survivors of cancer with ostomies: findings from the Ostomy Self-management Training trial. The Journal of Sexual Medicine, 20(11), 1319-1324. https://doi.org/10.1093/jsxmed/qdad119