Sex? What’s that? - Intimacy and IBD In America 2019

Intimacy, whether it includes sex or not, remains an important factor in a person’s life, despite age or chronic health conditions. Unfortunately, chronic diseases like Crohn’s and ulcerative colitis (UC) can negatively impact a person’s self-esteem, desire, and sexuality.

In our IBD in America 2019 survey, almost everyone, or 86 percent, of those with Crohn’s, ulcerative colitis, and other types of inflammatory bowel disease (IBD) said their disease affected dating and intimacy. Not surprisingly, the typical symptoms of Crohn’s and UC, such as gas, hemorrhoids, ostomy bags, scars, and fatigue, were all mentioned as obstacles to a normal sex or dating life.

Loss of libido was widespread with many saying they don’t have an interest or even think about sex. Overall, two-thirds of those with Crohn’s, 59 percent with ulcerative colitis, and 51 percent of those with other forms of IBD reported little to no desire for sex. Those responses were universal, whether someone was married, in a relationship, or single. Some typical comments we heard were:

• “Sex? What’s that?”
• “Afraid of having an accident. Not feeling sexy.”
• “Because of physical challenges, I feel repulsive to myself; however, my husband does not feel this way.”
• “I pull away sometimes when he wants to touch me intimately. I’m embarrassed about the way I look down there because of hemorrhoids or abscesses.”

Crohn’s, UC and other forms of IBD can be a real buzz kill with about a quarter of those surveyed saying that they had to stop in the middle of intimate moments.

In addition to physical challenges, the survey found that all types of IBD tend to create mental barriers, such as feelings of inadequacy, feeling dirty, and worries about going on dates. But, those with Crohn’s tended to feel more unattractive and more fear that their condition would scare away potential new partners compared to those with UC.

For those still interested in dating, the very nature of Crohn’s and ulcerative colitis can make it challenging to predict the future, which can make planning dates hard. Still, less than 25 percent of those with Crohn’s or ulcerative colitis avoid dating or meeting new people because of their disease. Here’s what respondents said about dating:

• "Most people don’t have to plan every minute of sex just in case something happens. They don’t understand that when we are feeling good enough to do so we need to take advantage of that immediately in the moment, because tomorrow we might not be able to.”
• "I feel insecure and unsure, and afraid it will scare someone away or I will have an accident when I am with them."
• "Unable to leave home to date and meet others due to flaring issues."
• "I thankfully met someone who is okay with my condition. Before I was told they would not date someone like me. I was even dumped for my condition. Like I said people in the US do not care."
• "I avoid jumping into relationships or even trying to go on dates because of my IBD."

To capture those moments when they do feel frisky, those surveyed shared a few tips on how they make intimacy more enjoyable, even if it must be planned:

• Remember to use the bathroom before
• Make sure they’re “clean”
• Choose a time of day when symptoms are better
• Avoid eating before sex

While very few people said that Crohn’s or ulcerative colitis had not changed sex and intimacy for them, several indicated that an understanding partner made all the difference in helping them feel better.

The IBD In America 2019 online survey gathered insights from individuals diagnosed with various types of IBD to better understand their diagnosis and treatment, as well as the impact on their lives. We’re thankful to have each and every one of you as a part of our community!