by Joy Baetz
(from Ostomy Canada Magazine – Winter 2012: Volume 20, Number 2)
I was asked to present at the UOAC conference in Toronto in August of this year. I was excited to do this, as it is a subject that is often glossed over before and after a person has an ostomy. There are changes that may occur with the body and also may affect sexuality and intimacy following ostomy surgery. This article will help to give a better understanding for those with an ostomy and their partners.
In 80% of men who have an Abdominal Perineal Resection, they will experience decreased erections and ejaculations and 30% of women will have a decreased sexual orgasm and frequency. What is interesting is that five to fifteen years post surgery some people with an ostomy may still experience depression, low self esteem and continue to have issues with their body image. Some people have difficulty with acceptance of their ostomy. I teach that one must control the ostomy and not let it control their life.
Removal of the bladder and prostate also may cause issues with erectile dysfunction as there can be ejaculation with partial or no erection but usually requires physical stimulation. There may be an erection but one is unable to ejaculate and if the prostate is removed cannot ejaculate and will be infertile.
Nerve damage during the surgical creation of a stoma may alter sexual function and for some self-image may be damaged beyond repair. Every person deals with an ostomy in their own individual way and for some acceptance is not attainable.
Pelvic Nerve damage affects the male with a decreased sensation in the genitals. Impotence, achieving and or maintaining an erection, weak ejaculations and decreased amounts of semen may occur. Retrograde ejaculation is where the semen goes into the bladder. Achieving an orgasm may be difficult and infertility occurs with removal of the bladder and a pelvic exenteration. The female may experience decreased sensation in the vagina and clitoris making arousal more of a challenge. There may be a decrease in vaginal lubrication, which in turn causes painful intercourse. Achieving an orgasm may be difficult and infertility will occur only with an exenteration.
There are treatments available for both men and women that can help with sexuality. Women may benefit from lubricants and also hormone therapy. The male may use medication, penile implants, suppositories, penile injections, penile band and also Testosterone gel.
Men tend to be more concerned with performance and women are concerned with being accepted and desired following ostomy surgery. These differences come with their own set of challenges.
Relationships are made up of Intimacy and Sexuality with interactions that allow one to feel loved, desired and accepted. It is important to explore each other, finding ways to please yourself and your partner.
Following surgery it is important to know that only the body image has changed and not the person inside. The difference is the way of evacuation of stool or urine from the body through an ostomy. It does affect the partner but the person with the ostomy is still the same person. ‘Remember you are still you.’
Sexuality is like anything else in life and if it is worthwhile it requires preparation, work and communication. It is extremely important to communicate and know that your partner does not have a crystal ball and cannot read your mind. If you think about relationships and compare it to a household chore, usually a woman will look at the carpet that needs to be vacuumed and do it and she may get frustrated that her partner did not notice that it needed to be done. The partner is more than willing to help but sometimes may need to be asked because they do not see what the other person does. Ask and you may be surprised how easy it is to communicate. The same holds true in a relationship.
There are many factors that can affect sexual functioning such as stress, fear, depression, embarrassment, medication, pain, tiredness and physical weakness; all can be reasons that things do not go as planned in the bedroom.
Intimacy can be physical or emotional. The physical side is the romantic or passionate sexual activity and the emotional is the desire to love and belong. There is attraction, need to be cared for and a strong emotional attachment.
Being single with an ostomy can be a challenge for some. The question arises as to when to tell the new person that you have an ostomy: on the first date, when you get to know them or just before intimacy? There really is no correct answer as each individual will handle the situation differently. These are some comments from single people with an ostomy. “I’ve tried when I first meet someone to tell them I have an ostomy and some just run when I explain what is and others want to know more.” “I get to know someone for a few weeks, develop feelings, and then tell and they get scared and then end the relationship.” “Intimacy happens only once and they are gone!” “Most say it is not the ostomy that is the problem but I always think it is.” Remember there is a right person out there for everyone, one who will love and appreciate you for who you are, just the way you are.
Intimacy in couples requires communication, openness and honesty. Each partner will have different fears. The person with the ostomy has a fear of rejection, pain, and change in performance. They can fear that their partner will not find them attractive and that they will consider the pouch dirty and that their body image will not be accepted. The partner also experiences fear of causing pain to the stoma, fear that they may not find their partner appealing, that the pouch is dirty and that they may not find enjoyment with intimacy as they once did.
Role reversal can be a way for the partner to have a brief look into what the person with the ostomy faces each day. It may help them to understand and have acceptance for the ostomy. This can be done by the partner wearing a pouch that is full of liquid and it may generate some questions that in the end will help to find a better understanding of what each person is feeling.
Ostomy surgery may affect homosexuals because after surgery if the rectum is closed there is no longer an orifice for anal sex. The stoma cannot be used for sexual activity as it may cause damage to the stoma such as a prolapse, bleeding, and infection. With the loss of the anus the homosexual male may experience fear of loss of partner, loss of sexual receptacle, and loss of control. This will require adaptation and alternate forms of intimacy and sexuality.
Intimacy with a stoma requires communication. Talk about concerns, fantasies, exchange hugs, kisses, cuddling, caresses and petting. Oral sex, masturbation, hand stimulation and sleeping together are ways of pleasuring each other.
It is important to be patient with each other following surgery. Some people may have desires and feelings soon after surgery and for others it may take months to want to be intimate and sexually active. Practice makes perfect so don’t give up; continue to make changes to keep the intimacy and sexuality alive. Prior to having relations some suggestions would be to empty the pouch, avoid gassy and odorous foods, wear a short pouch or stoma cap and make sure the appliance fits right and the edges could be taped down. With an ileostomy, eating two or three marshmallows prior to sexual activity may help to slow down and thicken the stool. Wearing intimate apparel such as crotchless underwear, cummerbund, boxer shorts, nightie, and fancy pouch covers may all make it more appealing to the partner. It is important to set the mood for intimacy and this can be achieved by playing soft music, dimming the lights, using candles, perfumes and humorous lines in case the ostomy functions.
Following ostomy surgery it is important to explore new sexual positions enhancing sexual relations through sexual expression. Sexual positions can be assumed so that the stoma/pouch are not in direct view of the partner. Previous positions before ostomy surgery may work well, however; with some surgeries face to face positions will allow for easier insertion of the penis for men who are unable to achieve a strong erection. Women may experience painful intercourse caused from scars in the vagina or close to it so avoiding the missionary position will decrease the pain to the vagina and rectum.
Humour can become your best solution when accidents happen. Learn to laugh at misfortunes and if a leak occurs shower together, support each other and communicate working through challenges together. A nickname for the stoma and humorous lines for embarrassing moments will help if intimate and sexual moments don’t go quite as planned.
Remember there is help available and you can speak to your Enterostomal Therapist, Physician, Surgeon, Urologist, and Sex Therapist. It is important to address sexual issues soon after surgery so that there will be positive outcomes and fears will be eliminated.
In conclusion an ostomy is a new experience for both the person with the ostomy and also the partner. Learn to communicate with your partner, laugh at your misfortunes and accept the changes that have occurred. Remember this is only a bum in a new place.
Joy is the president of Oshawa and District Ostomy Association.
“Intimacy and Sexuality with an Ostomy” first appeared in the Winter 2012 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.