Ostomy surgery is an invasive procedure that causes changes in the daily routine and may deteriorate a patient’s self-esteem, decreasing his or her quality of life. “Stomas come in all shapes and sizes. Some are round and others are oval. It may stick out (a budded stoma) or be flat (a flush stoma). The color should be a deep red or pink color. The stoma is warm and moist, like the inside of your cheek. The stoma can be an end (the end of the colon is brought out to the skin level) or a loop stoma (a loop of colon is brought out).”1
The nature of the procedure and the stoma make adaptation and rehabilitation a difficult task. “Even with the current technological advances to minimize the damage coming from the surgery of an ostomy, the patient with this deflection can suffer physical complications related to the loss of the integrity of the body, losing control of the evacuation process, unwilled elimination of gas and odors; and psychological, like the lack of confidence and self-esteem, causing depression. These changes can result on a negative impact in the quality of life (QOL), leading to great difficulties to the adaptive and rehabilitation process of those people.”2
A part of the rehabilitation process includes returning to social relationships and intimacy. Issues related to the stoma could cause sexual dysfunction and deteriorate the patient’s perception of self. “Sexual health is a state of physical, mental, and social well-being in relation to sexuality that is complex and multifactorial and impacts the quality of life (QoL). Sexual dysfunction is characterized by the persistent impairment of a person’s normal pattern of intimate sexual response that may trigger distress. This is important for the individual and his/her partner(s) as well. […] Sexual dysfunction can include alterations in sexual desire, arousal, and diminished or absent orgasm for both the genders. In females, dysfunction can also include sexual pain, or dyspareunia, related to vulvovaginal pain, vaginal dryness, or atrophy. In males, dysfunction can be related to difficulties getting or maintaining an erection and/or premature or delayed ejaculation.”3
Negative Feelings that Impede Regular Intimacy
It is normal to feel self-conscious after undergoing ostomy surgery. Most people confide that they either had a diminished sexual appetite or abstained from sexual relations altogether. “Many people have concerns about having intimate relationships after surgery. Your ability to love, care and be intimate with another person does not change. Expressing your feelings and talking with your partner is important. Sexual activity, hugging, and affection will not hurt your stoma. Your partner may be concerned about hurting you and will need to know that these activities will not harm you. After surgery, you will need time for your body to heal and adjust to this change.”4
The stoma and the ostomy bag might affect your intimate moments, but it should not lead to fewer encounters, or abstain from sexual activity. In some cases, depression, psychological issues, feeling undesirable, rejected, or dysfunctional might set in and decrease libido. “Sexual relations may be resumed when approved by your surgeon and when you feel physically and emotionally ready. It takes time to adjust to the changes in your body. If the rectum has been removed, depending upon the reason, there may be some degree of sexual impairment due to possible nerve damage in the perineal area. This damage, if present, may be temporary or permanent. Discuss concerns you may have with your surgeon. The following suggestions may help when you are involved in an intimate relationship: Empty your pouch prior to sexual activity. Wear a smaller “mini” pouch or fold and tape your pouch. Cover the pouch with a pouch cover, cummerbund, fancy lingerie or crotchless panties. Try different positions that are comfortable for you and your partner.”5
Tips Before Having Intimacy
- When both of you decide it is time to resume sexual relations, take the time to prepare for the act. If you have a two-piece ostomy system, make sure that your skin barrier is secure. Concentrate on the lovemaking moment. If you are feeling self-conscious about seeing your ostomy bag, conceal it with a pouch cover. You will need to accommodate accordingly so as not to press the bag. In fact, you both may want to consider other positions.
- “It goes without saying that you should empty your appliance before intimacy and take care that you are clean and have no odor. Folding the bag up and taping it to your abdomen can get it out of the way and stop it from distracting you. (any more than you’re already distracted, that is.) If you are feeling self-conscious sometimes camisoles or ‘adult’ lingerie can make things more discreet for the ladies. Men may keep a T-shirt on so the appliance is less obvious. The plastic in some appliances can rustle in an annoying manner — those with fabric covering are quieter. It’s a good idea to have some tissue or a towel nearby in case of surprises. All ostomy manufacturers make appliances that can be used during intimacy — stoma caps or mini-bags. These are much smaller than a standard pouch and very discreet. How long they are effective depends greatly on what sort of ostomy you have and what its output patterns are.”6
- Do not force yourself. Your body requires healing before being sexually active again. After your discharge from the hospital, look to regaining your confidence with your partner one step at a time. Go for strolls, hold hands, watch a movie, or have a dinner date. Allow your partner to get involved with some or all of your daily private routine (fixing, cleansing, and disposing of the ostomy bag) if he or she wants to. It will bring you closer, and will ultimately aid in recovering intimacy.
- Embrace the change and love yourself. “As the body changes following the creation of a stoma, the body image may change as well. Individuals with a stoma report feeling sexually unattractive. Determining when to disclose the presence of a stoma to a potential sexual partner or the decision to concealing the stoma during intimacy is a personal decision. Studies indicate that couples where the female partner has the stoma are less sexually active than couples where the male partner has the stoma. Body image issues and mental health support need to be addressed in holistic patient care.”7
Physical Changes Caused by Ostomy Surgery
“Because ostomy surgery takes place in the pelvis and part or all of some organs are removed, it makes sense that sexual functioning could be affected. However, the changes that can occur in men are quite different than those that can occur in women. Also, the type of ostomy operation you’ve had (ileostomy, colostomy, urostomy) and the reason you’ve had it (for example cancer of the rectum versus Crohn’s Disease) play a role in what physical changes have been made and the specific effect it will have on your sexual response. Prior to any type of ostomy surgery, it is important to have a discussion with your doctor, WOC nurse or OMS concerning the possibility of changes in your sexual functioning.”8
For single ostomates looking to resume dating after surgery, talking about the ostomy might be complicated. You decide the time to disclose, but do not address the matter in the bedroom. The sight of an ostomy bag could be uncomfortable for people who are unaccustomed. However once discussed, an ostomy should not deter an encounter. Use your judgment and waitfor the right moment. Communication is the key.
“One of the most important things you can do to strengthen your intimate relationship is to talk to your sexual partner. It will be difficult to have sexual intimacy without exposing your stoma/pouch. It is probably not the best time to teach your partner about an ostomy during a passionate encounter. Most people are unfamiliar with ostomy surgery and what a stoma looks like and how it functions. Most people will not know how it may have changed your sexual function. If you meet someone or are already in a relationship with someone with whom you desire a sexual relationship, you will need to decide how and when you want to share this with your partner.”9
Whether you are partnered up or are considering being intimate with a new person, remember that communication is vital to restore or attain intimacy. Slow the pace down if you need to. “If you feel less attractive with your ostomy, take your return to intimacy slowly. Maybe you aren’t ready to have sex right away. Discuss this with your partner. Suggest starting with touching and kissing. Your partner can help make you feel more comfortable and reassure you that you are just as attractive with an ostomy.”10 In general, try talking to yourself and/or your partner about your fears. It will help you determine what actions to take. If you consider that difficult, consider a professional or an ostomy support group to help with the transition.
“Receiving an intestinal ostomy changes a person’s life dramatically and may entail complications, sometimes severe, and impairment of quality of life. Careful planning, meticulous surgery, and optimal care are crucial in ensuring that ostomy patients can live their lives in the best way possible.”11 Remember that you are not the only one who needs help adjusting. You and your partner should be each other’s bridge to restoring intimacy in the relationship.
(1, 4) A Patient’s Guide to Colostomy Care. Northwestern Memorial Hospital. 2007. http://www.nmh.org/ccurl/580/761/colostomy-care-guide-09-07.pdf
(2) Quality of Life Regarding People with an Ostomy: Integrative Review about Related Factors. Souza, R., Pinheiros, L., Souza, L., Galvao, C., Silva, S., Pavia, S., De Vasconcelos, G., & Fernandes, I. International Medical Society. 2016. https://www.researchgate.net/publication/307089840
(3, 7) Sexual Dysfunction and Intimacy for Ostomates. Albaugh, J., Tenfelde, S., & Hayden, D. Clinics in Colon and Rectal Surgery. 2017. https://www.thieme-connect.de/products/ejournals/abstract/10.1055/s-0037-1598161
(5) A Guide to Living With a Colostomy. The Canadian Association for Enterostomal Therapy. 2007. https://nswoc.ca/wp-content/uploads/2015/02/caet-guide-to-living-with-a-colostomy.pdf
(6) A Handbook for New Ostomy Patients, Fifth Edition. Vancouver Chapter of the United Ostomy Association of Canada. 2012. http://www.vcn.bc.ca/ostomyvr/NEW%20PATIENTS%20EDITION%205th%20printing%20web.pdf
(8, 9) Intimacy after Ostomy Surgery. United Ostomy Associations of America. 2018. https://www.ostomy.org/wp-content/uploads/2018/03/Intimacy-After-Ostomy-Surgery-Guide.pdf
(10) Ostomy: Adapting to life after colostomy, ileostomy or urostomy. Mayo Clinic Staff. Mayo Clinic. 2018. https://www.mayoclinic.org/diseases-conditions/colon-cancer/in-depth/ostomy/art-20045825
(11) Intestinal Ostomy: Classification, Indications, Ostomy Care and Complication Management. Ambe, P., Kurz, N., Nitschke, C., Odeh, S., Möslein, G., & Zirngibl, H. Deutsches Ärzteblatt International. 2018. https://www.aerzteblatt.de/int/archive/article?id=196925