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IBD & Intimacy

Getting physical

Most people with inflammatory bowel diseases (IBD) are physically capable of having sexual intercourse, but there are times when they just don't feel like it. “The mood” can be dampened by a fear of incontinence, abdominal pain, fever, or sheer tiredness.

“I was in a relationship when I first got sick,” says Chris Hill, a 27-year-old woman from St. Louis who has ulcerative colitis. “But it ended and I haven't dated a lot since then. I'm sick and tired all the time, and I'm embarrassed about always going to the bathroom.”

“My symptoms hit hardest right after my wedding — cramping and diarrhea,” says Dan Kreher, a 33-year-old man from St. Louis. “I did not have much energy to be terribly frisky. My wife was sympathetic, but I was trying to act like it was no big deal.”

Larry Shapiro, 36, has found that open communication with his wife is the best track when sex is not an option. “If I'm under the weather, I can say, ‘It won't happen tonight,'” the St. Louis man says. “Just like she would say it to me if she was not feeling up to it — it's not personal.”

It may help couples to talk about what will feel comfortable and pleasurable despite the pain, says psychologist Morton L. Katz, Ph.D., of Houston. “People need predictability to feel comfortable in a relationship,” he notes. “Sometimes you can't be close, but you can talk about your feelings and fantasies. Don't forget, there are ways that people can be sexually intimate that don't involve intercourse.”

Melody Thompson, a 35-year-old woman from Shreveport, LA, agrees. She had a complicated case of Crohn's before her ileostomy. “My husband and I went back to our courting days — kissing and hugging without expecting to have sex,” she recalls. “If your husband starts kissing you, it's a given that it will lead to sex. With Crohn's and an ileostomy, you want to hug and kiss without expecting anything else. It helps me to relax. You have to make sure they understand, however, that it's not personal. I love him dearly, but this [illness] is inside of me.”

The body beautiful, still

Beyond the pain and the fatigue of IBD, some adults also struggle with a poor body image. “Feeling stigmatized can affect sexual arousal,” notes Douglas A. Drossman, M.D., a gastroenterologist and psychiatrist at the University of North Carolina, Chapel Hill.

To combat a negative body image, it's important to keep an eye on the big picture, which includes all aspects of your looks and personality. “It's critical for effective sexual functioning that a person has a realistic sense of themselves,” advises Dr. Katz. “If you crop a picture too close, you don't integrate what's swell with what's not swell.”

Achieving this view can be a matter of sheer will. “I didn't want to maintain my sexual relationship with my husband because I felt inferior,” says 33-year-old Angela Grupas of St. Louis, who suffers from Crohn's colitis. “My skin tags [stretched skin caused by anal hemorrhoids] bothered me the most. I tried to get rid of them medically, and it was impossible. I then realized that my inability to have sex was mental, and I said to heck with it!”

Larry deals with the impact of his disease in similar fashion. “It might make me more self-conscious if I'm having an episode with bleeding, but if I want to have sex, I'm going to do it anyway. My disease has been a part of my life since I was 13, and I never let it stop me from doing anything.”

An ostomy may seem like an extra hurdle in this effort. “I had some bitter times with it,” Melody says. “At first I tried to wear larger clothes so that no one would know. Through a lot of prayer and a wonderful husband, I got over it. Now I wear whatever I want — no one will know. And I'll talk to anyone about it, especially if it will help.”

Open discussion includes bemoaning the limits that IBD places on your sexual activity. “A couple of times a year, it's okay to forget about all the good things you have, and feel sorry for yourself,” says Dr. Katz. “If somebody didn't wish that they or their spouse did not have a chronic disease, they wouldn't be normal.”

Finally, remember that relationships are more than physical pleasure. “When you are frustrated with the limitations of sexual activity, you have to keep in mind the whole relationship,” says Dr. Katz. “You have shared conversations, dreams, and goals.”

Let's talk about sex

If you are experiencing problems in sexual drive or function, please talk to your physician, whether or not he or she asks for the information. If you do not feel comfortable discussing these issues with your gastroenterologist, perhaps you would feel more at ease talking to your primary care physician or gynecologist.

If you are having difficulty in starting or maintaining a sexual relationship, there are several forums in which to air your concerns. “People should start in a support group,” advises Dr. Katz. “If you still feel uncomfortable or that no one understands, you can talk to a therapist. You can seek a referral from your physician or clergy, or anonymously, by calling churches and synagogues in the area to see who is recommended most.”

The nature of IBD can be daunting to a sexual relationship. Educate yourself and your partner, open your mind to new possibilities, and discuss problems in a forum that is comfortable and encouraging. Do your best to keep these diseases from interfering with truly intimate relationships.