“People feel concerned about whether their partner can support them during their disease, but also whether people will still find them attractive or want to continue dating them once they’ve learned about the disease,” says Madison Simons, PsyD, a gastrointestinal psychologist at Cleveland Clinic in Ohio. Simons stresses that people with UC can have very satisfying and fulfilling relationships. Keep in mind, though, that your feelings and body image may change depending on whether the disease is active or in remission — and during a flare, your priorities may have to change, too. “When the disease is active, that’s a time to focus on treating it,” Simons says. “Bigger decisions about dating and relationships and family planning best occur when the disease is in remission — ‘when I’m not flaring, I will be able to think about these things in ways that are more in line with my values.’” Here are a few common relationship concerns for people with UC, and tips to cope with each.

Feeling Confident Dating With UC

Simons’ patients often worry about their physical attractiveness and their body image, as well as what potential partners will think about their need to use bathroom more frequently. These are normal concerns. “It’s very common for both men and women to have concerns around body image,” says Simons. Natalie Kelley, 25, a chronic illness mindset coach, blogger, podcaster, and founder of Plenty and Well (Instagram @plentyandwellwithnat), was diagnosed with ulcerative colitis at age 21 in 2017 and met her current girlfriend in August 2021 through a dating app. Kelley says that while she didn’t feel worried about her symptoms, she did feel pressure about being able to “do enough” or be “fun enough” when she was first diagnosed with UC. “I was concerned that people would get frustrated by my body’s limits,” she says. It’s helpful for people who are entering into relationships to keep the long-term trajectory in mind, and to remember that many people with UC have partners who are very supportive of their condition. “It’s much more difficult in the beginning, and body image concerns reduce over time,” Simons says. Remember, too, that if a person has a negative reaction to your symptoms and limitations, that’s a reflection on them, not on you. “It simply shows they aren’t the right fit for you,” says Kelley. Kelley recommends picnic dates in public parks: “There are typically restrooms accessible and you can bring your own snacks to share that you know are safe for you to eat,” she says. Simons suggests preparing by practicing with a lower-pressure situation. Choose a restaurant or other date spot where you know a bathroom is readily available and that has food that meets your dietary restrictions. Then go there with a friend or even by yourself before your date to see what it’s like to sit there for a while. Kelley used to worry about activities like long hikes. “The fear of the ‘what ifs’ — what if there’s no bathroom, what if halfway up my UC acts up and we have to turn around — would take over,” she says. Being open about these concerns with the person before the date makes it easier to discuss any issues that do arise during the date. “It eased a lot of the anxiety knowing they were already in the loop,” says Kelley. It’s also helpful to practice stress-reduction techniques before a date. “We know that when people are stressed, they can end up having more bowel movements,” Simons says. Reducing stress can help reduce bowel frequency, she says. Do something you enjoy in the day or two leading up to a date; just before (or even during) the big event, take deep, big breaths (diaphragmatic breathing) to calm your nerves. Finally, try to remind yourself that you may have more bowel movements, and that’s okay. “The more we try to fight the symptoms, the more they tend to become severe,” says Simons.

When to Disclose Your Diagnosis

There is not a “right” time to disclose your UC diagnosis, although Simons says earlier is usually better. “In general, we find people are more satisfied when they’re able to talk about what going on for them, even if it doesn’t mean sharing all of the details,” she says. The discussion may feel lower-stakes if you’re just getting to know the person. If they react in a way that isn’t sensitive to your needs, it’s easy to move on, says Simons. “I always lived by the motto that telling folks sooner rather than later was always better,” says Kelley. “Telling a potential partner on the first or second date allows you to gauge if they’re worth your continued energy.” When you are ready to talk, remember that not everyone is familiar with UC. Start by giving your partner the basics — you could say “It’s a lifelong condition that causes inflammation and sores in the large intestine and rectum,” or alternatively, “It’s a chronic, inflammatory bowel disease.” Then focus on what UC is like for you and how they can help — for example, knowing there’s a bathroom readily available with wipes when your symptoms are flaring. “Your partner isn’t going to know what you need unless you tell them, so they really benefit from knowing what that experience is like for you and what you found helpful in coping with it,” says Simons. Kelley suggests having a “chronic illness elevator pitch.” Figure out what you’re comfortable sharing about UC and your journey and then practice saying it out loud. “That way, if and when they ask about your condition, you feel prepared and confident,” she says. You don’t have to downplay your symptoms, but remember that how much you share is totally up to you. It’s also a good idea to wait to save this conversation for when your disease is in remission, adds Simons, since you may feel more stable and confident in your ability to communicate with the other person.

Prioritizing Open Communication

“Open communication has been the most helpful aspect in my relationship, because I don’t feel any anxiety around sharing my needs and asking for support from my partner,” says Kelley. Social support is invaluable for people with IBD, and for UC specifically. Simons says: It’s been shown to help reduce disease flares and rates of anxiety and depression while improving quality of life. “Finding someone who can be that social support for you, whether that’s your partner or a person with UC in your life, that’s your most important goal,” she adds. Keep in mind that while it’s important to be with a partner who is supportive of you and your condition, they don’t necessarily have to be your go-to support person. You might prefer to find a different person who can support you with your symptoms, such as a mental health therapist, a friend with UC, or a support group for people with GI issues. “You may not have to depend so much on your partner to understand all the details of your day-to-day experience,” she says. “If someone hasn’t had bowel concerns, they may not understand what it’s like for you to have that amount of pain or fear with bowel movements. Recognize that a person can still love and support you very much without personally understanding what that’s like.”

Moving in Together

When you first move in together with a partner, you may worry about sharing a restroom 24/7 — particularly if you have active disease and need to use the toilet many times per day. Simons says this is an area where open communication can be particularly helpful. Simons suggests talking with your partner about what you need to have in your bathroom to make it comfortable for you, such as wipes. She also recommends describing what it’s like when you have urgency and can’t wait. “Your partner may not understand that unless you explain it to them,” she says. Kelley says she plans to move in with her partner soon. “I truly have no embarrassment around my illness and know no matter what, everything with my UC will be totally okay while living with her,” she says. “But if you do have fears or issues around moving in with a partner while living with UC, making sure you sit down and talk about those fears and the solutions before moving in together is crucial.”

Sexual Health

Simons’ patients have several concerns about sexual intimacy. Those with an ostomy bag or stoma may worry about their physical appearance during sexual encounters, or fear that the bag might leak. Others may simply feel anxious about sexual activity in general, including about fecal incontinence during intercourse or how lower sexual desire and satisfaction may impact their partner. As with other parts of your relationship, having open communication is key, Simons says. She adds that it’s a good idea to first approach the topic when you’re in remission. “Sexual interest and body image go along with how active the disease is,” she says. When you are ready for sex, the key is to accept your condition and plan ahead, Simons says. Recognize that you may have symptoms, and try to plan for how you’ll cope if they do occur. For example, how will you prepare your partner to see your ostomy pouch for the first time? What would you do to feel confident if you did have bowel leakage? Talking these things through with a mental health professional or support group can be a good place to start. Ask how others have handled specific concerns. “The more we can accept the symptoms, as uncomfortable as they might be, the more we feel competent when dealing with them,” says Simons. And if symptoms cause discomfort during an encounter, be honest instead of trying to push past those feelings. “Remind yourself that it’s your body and you can stop intimacy whenever you want,” says Kelley. “Simply letting your partner know you may sometimes have to pause intimacy is helpful.”

Support During Flares

During flares, a long-term partner can be an important support. “Patients might feel greater fatigue, like their normal daily activities are harder for them. Anything the partner can do to lessen the load on the person with UC can be helpful,” says Simons. For example, that might mean placing a chair in the shower, helping prepare meals or do household chores, or finding activities to do together despite physical limitations. Kelley adds that a partner can be emotionally supportive during appointments or even just give you affirmation. When they do, focus on gratitude. “It’s so easy to feel like a burden while living with UC,” says Kelley. “Instead of feeling guilty, replace those thoughts with ‘I’m so thankful I have a supportive partner.’”

Talking About Fertility and Family Planning

Fertility may not be a concern for most people with UC. “When disease is in remission, we see good rates of fertility compared to the general population,” says Simons. “Most people trying to get pregnant with IBD have very healthy pregnancies and deliveries.” That said, some people with IBD may decide against having children because of their diagnosis. “We do see higher rates of voluntary childlessness in people with IBD. In most cases, it’s due to concerns about whether their children would have IBD,” says Simons. If you’re sure you don’t want children, it’s a good idea to bring that up with your partner sooner rather than later. And if you do want to have kids, but are hesitant just because of the risk of passing IBD on to them, know that no parent can guarantee their child won’t become sick. Even if your child does have IBD, “who better to help them cope with this than me, because I’ve been through it before and I know how to support them,” says Simons.