Finding Intimacy

by Julia VanTine

Barbara Skoglund was diagnosed with chronic ulcerative colitis at 16. She endured the pain and the humiliating bathroom accidents until she was 30, when a bad flare-up landed her in the hospital. Fearful of having a permanent ileostomy, she underwent a lesser procedure.

It didn’t improve Skoglund’s symptoms or cure her disease. Three years later — with the support of her boyfriend, David (who is now her husband) — she had a permanent ileostomy. Her stoma is located on her right side, 3 inches across from her belly button.

For Skoglund, who’d lived with pain for decades, the operation was liberating in every way. She could go anywhere, do anything with considerably less worry about bathroom locations — or accidents.

She could also enjoy sex for the first time since her disease was diagnosed. And she still does. “I don’t have pain, I don’t have to excuse myself to go to the bathroom, and I don’t worry about having an accident during sex,” says Skoglund. The icing on the cake: At age 37, she gave birth to a beautiful, healthy daughter.

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You’re still a sexual being

There’s no getting around it: having an ostomy can have a dramatic impact on a person’s sense of self as a sexual being. “Ostomy surgery is a life-changing event,” says Gwen Turnbull, RN, who lectures extensively on ostomy care and related issues.

How a man or woman views that event often depends on the length and circumstances of the illness. After an ostomy, people ill for years with a condition like Crohn’s disease or chronic ulcerative colitis can experience a dramatic improvement in their quality of life—including their sex life, since they now feel well enough to enjoy sex. However, those who undergo an ostomy because of cancer may feel differently.

“People with bladder or colorectal cancer often show no symptoms before they’re diagnosed,” notes Turnbull. “There’s usually not much time between diagnosis and surgery, and there’s little time for the psychological and emotional preparation for what lies ahead.

”Faced with a cancer diagnosis, most people are consumed by the fear of dying, rather than the impact of an ostomy on their sex lives, says Turnbull. But after surgery, as life slowly returns to a semblance of normalcy, issues of sexual functioning, attractiveness, and intimacy can become a factor.

After an extensive procedure, such as pelvic exenteration (removal of the organs in the pelvis, including the bladder, internal sex organs, rectum, and colon), or a colostomy, most patients will experience a multitude of emotions and fears, including how a significant other could ever love or even want them.

Such feelings are common, but according to experts, in most cases, men and women with an ostomy can enjoy an active, healthy sex life. Often, the first hurdle isn’t physical functioning: It’s coming to terms with myths about sex and ostomy.

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Your Partner’s Feelings

If you’re married or in a long-term relationship, you may fear that your partner will be turned off by your ostomy. Maybe you’re worried that you’ll have an odor, that the stoma will turn him or her off, or that you won’t be able to do the things that have pleased your partner in the past. “The bedroom can be the testing ground where partner acceptance is put on the line,” says Turnbull.

If you’re in a relationship grounded in trust, honesty, and unconditional love, you’ll work through the anxieties together. “If you had a healthy relationship before your ostomy, your surgery is not likely to damage it,” says Peggy McGinn-Byer, outreach service coordinator and a WOC/ET nurse at Fox Chase Cancer Center in Philadelphia.

McGinn-Byer remembers one of her patients who had cervical cancer. She underwent a colostomy and a urinary ostomy and a vaginal reconstruction. “This woman had a very good relationship, and she began having sex about 6 months after her surgery,” she recalls. “She was very open with her partner—right after her surgery, she showed him what her stomas looked like. He loved her no matter what. They did have intercourse—and they resumed an active and pleasurable sex life.”

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The Singles Scene

But what if you’re single? The question is whether to tell a potential partner about the ostomy, and if so, when. There’s no doubt that some partners will walk away. But, not all. Skoglund says she knows many single people who find permanent relationships after their surgeries. “Many of the single folks with ostomies I’ve talked to say that their ostomies are a litmus test.”

Sometimes, though, it has nothing to do with whether a romance works, and you shouldn’t blame your ostomy for every relationship that fizzles. Skoglund’s first fiancé broke off their relationship after her first procedure. But, she says, “We didn’t split over how I went to the bathroom. We split because we weren’t right for each other.

”Still, before her second surgery, Skoglund was worried about how David would react. “I’d been dating him for less than a year,” she says. As a prelude to a discussion, she wordlessly handed him the information she’d gathered on her procedure.

“All he said was, ‘You mean there’s something that will take away your pain?’ He never expressed any negativity.” Six weeks after the surgery, she and David made love.

Julia VanTine is a freelance writer and editor.

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Living and Loving with an Ostomy The best advice for men and women with an ostomy? “Focus on your feelings, not your pouch,” says Gwen Turnbull, RN. Then try these tips to help you feel more secure—and sexy—when you’re ready to make love. (For a copy of Intimacy, Sexuality, and an Ostomy by Turnbull, visit the United Ostomy Association of America’s (UOAA) Web site at www.uoaa.org and look under “Ostomy Information and Guidebooks.”) For men only: It’s important to remember that you may not have an orgasm the first time you make love after surgery. But if you find that you’re having continued problems maintaining an erection, call your nurse or your doctor. The one thing you shouldn’t do? Panic. More than likely, there will be a solution. For women only: After surgery, many women experience vaginal dryness. Try one of the many lubricants available, or ask your doctor about a hormone cream or vaginal suppository. For men and women: Talk, talk, talk. The more you share about your ostomy and what you feel, the greater the intimacy between you and your partner, regardless of whether or not you make love. The way you see yourself influences the way others see you. If you are accepting of your body after surgery, your partner is likely to be as well. Before you make love, empty your pouch. No big deal: “That’s no different from someone who doesn’t have an ostomy,” says Barbara Skoglund who lives with an ileostomy. If your ostomy gives you pain or trouble in one sexual position, try another. If you use birth control, oral contraceptives may not be the best choice, especially if you’ve had an ileostomy or have had a large portion of your small intestine removed. Often, the pills are not absorbed. Talk with your doctor about the best form of birth control for you. The side-by-side position works well for people with an ostomy because the pouch will fall to your side and not come between you and your partner. Use a “Passion Pouch” (a closed-end mini-pouch) when you make love. These are smaller and less bulky than the typical drainable pouch. Remember that there are many ways to be intimate with your partner: hugging, kissing, snuggling, and even just holding hands.

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