Anthony Andrews, a 34-year-old training manager at a bank in London, had been candid from the very beginning, when he directed Jessica Lockett, an art director, to his Instagram profile, @ibdlife. They had matched on Hinge in January 2020, and he wanted to ensure that she understood what life with inflammatory bowel disease (IBD) and an ostomy bag meant before they got too involved. “Do you still like what you see?” he messaged. Back then, Andrews had been suffering with ulcerative colitis (UC) for 11 years and was days away from a surgery that would require him to wear a bag for the rest of his life. Lockett, intrigued and compassionate, scrolled through his posts, learning quickly exactly what that meant.
[time-brightcove not-tgx=”true”]“A lot of us [IBD patients] will probably feel like they can’t necessarily open up, but I would openly tell people,” says Andrews, joking that it was his “unique sales pitch” on dating apps. Most women were supportive, he says, but “there were a number of times when people were just like, ‘What’s that? That sounds disgusting. I don’t really want to deal with that.’”
Lockett was different. She messaged back, “Oh wow, I love that the bag’s black, it looks cool.” That put him at ease before they even went on their first date.
IBD, which includes UC and Crohn’s disease, is an incurable autoimmune disease that affects the digestive system. It brings unpredictable symptoms like diarrhea (sometimes with blood), abdominal pain, fatigue, and weight loss—and often first shows up just as young adults are hitting the dating scene, which can make it even more daunting.
Treatments range from nutrition support and medications to more extreme procedures such as ostomy surgery, which typically involves creating an opening in the abdomen, known as a stoma, to allow waste to exit directly from the intestines into a bag outside the body. Surgeries are typically necessary when parts of the digestive system are diseased or damaged and need to be bypassed or removed. With or without surgery, IBD can alter body image and self-esteem, adding a layer of complexity to personal relationships, which can be hard enough without the added pressure of managing a stigmatized disease.
“Everybody’s got challenges, but it feels that IBD can be more challenging on sexuality and intimacy because bloody diarrhea is typically not sexy,” says Marci Reiss, a licensed clinical social worker and the founder and president of the IBD Support Foundation, based in Los Angeles.
But there are many patients, advocates, and medical experts who say the disease can also just be part of your regular life, dating included. From figuring out the right time and way to share your IBD status, to smart planning for outings and sex, here are some tips to help make dating more comfortable for everyone involved.
Read More: How to Maintain Your Social Life When You Have IBD
Everyone with IBD feels differently about opening up about their condition. Some people, like Andrews, may want to get it out of the way before even meeting someone face-to-face. Others may take months to broach the topic.
“It becomes so difficult for people to share, because it’s their deepest pain,” says Reiss. “People think to themselves, ‘Am I lovable with this?’”
Montreal-based content creator and model Sara Levitt, 29, would sometimes wait three or four months before sharing her medical condition with guys she dated, requiring stealthy ways to conceal her ostomy bag in the bedroom. To divert their attention, “I would just tell them, ‘I have Crohn’s disease, I have scars…I’m self conscious,’” says Levitt. This allowed her to tuck the bag under a sweater or tank top and keep her arm strategically wrapped around her waist. However, covering it up came with a price. “I would feel constricted and stressed out…and it held me back from developing emotional connections.”
Last year, however, she went public about her IBD, ostomy, and proctectomy (in which the diseased rectum and anus are removed and sewn closed permanently), a.k.a. “Barbie Butt” surgery—so-called by patients themselves because it reminds them of a doll’s bottom. Levitt, who had her first surgery at 13 and is known as “The Bag Bish” on Instagram, spent years learning how to accept her condition and turning it into a blessing. In January, she became the first “ostomate” featured in the monthly men’s magazine MAXIM Australia. “I just reached a point where I was mentally and physically exhausted from hiding the bag, and I realized that I’m living the life I’m living because of it.”
Even before you decide to share, it’s helpful to have a short “elevator pitch” ready, says Laurie Keefer, a gastropsychologist and professor of medicine at Icahn School of Medicine at Mount Sinai Health System in New York City. One of her biggest pieces of advice: “Don’t make it a bigger deal than it has to be.” Her script goes something like this: “I have X condition; I was diagnosed X years ago; this is how it’s treated (medication and/or surgery), and this is how it affects me.” The last point, for example, may be a simple statement about needing to avoid certain foods or alcohol, or the possibility that you might need to get up suddenly to use the bathroom.
Keefer wants her patients to be able to deliver this pitch in their sleep, so they can stop being anxious about it. “Most people, if they don’t have a chronic GI disease, are pretty clueless about what the digestive tract does or is. So for better or for worse, you can use that to your advantage,” says Keefer. Don’t catastrophize every reveal. “Even when you tell people you have an ostomy, they’re like ‘Oh, OK, my grandma had one of those.’ It doesn’t occur to them that that means you’re going to the bathroom outside of your body…most people don’t have an appreciation enough of anatomy and physiology that they even really fully understand what you’re saying.”
Read More: Why Bathroom Access Is a Public Health Issue
Before heading out on a date, do a little recon on the venue. Check out the menu online to make sure there are options that work for you. Investigate the restroom situation. Patients and experts agree that having a plan can ease any nerves and let you focus on enjoying the date.
With an invisible disability like IBD, it also helps to know your rights in public and private places. The Restroom Access Act, or “Ally’s Law,” (named after Allyson Bain, a Crohn’s patient from Illinois, who was 14 when she was denied access to a restroom in a department store, leading to a humiliating accident) has been passed in 17 states in the U.S., giving you the right to access a business’s private restroom if you ask. The non-profit organization Girls With Guts has made exercising this right even easier, with its “I Gotta Go” cards. You can easily replicate these at home; they’re super handy to discreetly communicate your urgency to skip the line or ask for restroom access where it’s usually off-limits.
Certain IBD symptoms, including pain during sex, leakage, and fistulas (an unusual tunnel between organs, which can get infected) may significantly affect your love life. Regardless of gender or sexuality, surgeries can disrupt or halt certain sexual activities, such as making anal penetration impossible, which can be frustrating to some people.
Your IBD team can point you to specialists like OB-GYNs, urologists, pelvic floor therapists, and even sexual therapists such as psychologists and psychotherapists who understand and can support you. Plenty of people with IBD have vibrant, loving, and intimate relationships.
“There is a connection between the physical and the psychological and vice versa. But sometimes it’s just physical because of all the damage that has been done to the nerves in that area,” says Dr. Aline Charabaty, director of the Inflammatory Bowel Disease Center at Sibley Memorial Hospital in Washington, D.C. Even your GI doctor may hesitate to discuss sensitive topics like emotional and sexual health, says Charabaty, but there should be questions like: How is this disease affecting your emotional health? How is it affecting your sexual health? Are you dating or in a relationship? If that’s not happening, bring it up yourself and ask for referrals.
A heads-up on contraception: If you’re using pills and your IBD causes you to vomit or have severe diarrhea, they might not work as well. Also, some symptoms of STIs can look a lot like IBD flare-ups, so if something feels off, it’s smart to check in at a sexual health clinic. And remember, condoms are your go-to for protecting against STIs while you navigate everything else.
Navigating intimacy with IBD can be daunting, but there are effective ways to manage leakage and incontinence without ruining a romantic mood. Cherabaty says medications such as Imodium can help patients gain better control over bowel movements, particularly before engaging in sexual activities. Those experiencing ongoing symptoms of diarrhea or incontinence despite managing their disease may need additional strategies: pelvic physical therapy for strength, fiber supplements to firm up stools, or bile acid sequestrants like cholestyramine for the bile acid diarrhea often seen in Crohn’s patients. Some of Cherabaty’s patients who engage in anal sex have reported success using enemas beforehand to ensure cleanliness and comfort. Integrating the job of changing an ostomy bag into your “freshening up” routine can also help manage concerns, allowing you to feel more secure and relaxed.
Also remember that sometimes accidents happen. How you and your date or partner respond to them could say a lot about the strength and understanding in your relationship. Alicia Aiello, 34, the president of Philadelphia-based Girls With Guts, recalls an embarrassing incident with her first serious girlfriend. “She kicked the ostomy bag off by accident in a hotel room with white sheets. And [the waste] went everywhere. It was all over her. It was all over me. It was one of the most mortifying experiences of my life, and I was only 20 then,” she recalls. Thankfully, Aiello and her girlfriend at the time had been dating long enough that they were able to take a pause and a deep breath before assessing the situation and cleaning up as best they could. (And avoid paying a $400 cleaning fee from the hotel.) “That was a positive moment where that was probably the worst thing that could have happened to me while dating someone. And while it was momentarily mortifying, looking back now, I can laugh about it.”
Read More: Should You Tell Your Boss You Have IBD? Plus More Tips for Coping at the Office
Dr. Neilanjan Nandi, a gastroenterologist and associate professor of clinical medicine at the University of Pennsylvania’s Penn Presbyterian Medical Center, actively supports his IBD patients in gaining sexual confidence. “Feeling sexy is a mind game,” he explains, emphasizing the importance of open communication and helpful products. For those with an ostomy, for example, stylish stoma pouch covers and support belts, or specialized lingerie, such as high-waisted crotchless panties, can make intimacy more comfortable. If odor is a concern, oral ostomy deodorizer pills can be helpful, too.
Nandi also recommends letting your partner get up close and personal with your stoma, perhaps involving them in changing the ostomy bag, or making it part of a shared shower, a tip he got from one of his patients. “You have the water, you can get hot and steamy. You can play with the stoma; you can explore it together,” he says. “If there’s an accident, it’s a comfortable place to wash it off. I know that sounds crazy if you’re new to this, or even if you’re not, but it can make it a big difference.” This openness can not only boost your confidence, but deepens your connection, making intimate moments feel more natural and spontaneous.
Four years have now elapsed since Andrews met Lockett on Hinge—four years that included an amazing first date at a wine bar in London’s Borough Market, his ostomy surgery, and moving in together during the pandemic. Now, the two are planning to wed on the fifth anniversary of the day they met. Lockett has held his hand and cried with him in the hospital, cleaned up a messy stoma mishap, and walked around with an ostomy bag herself to understand what it’s like. Andrews admits that what started as casually scrolling the apps to distract himself from his surgery has blossomed into a love more real than he could have ever imagined. “She has been so unbelievably supportive…she’s my best friend,” says Andrews. To others still looking, he says, “Don’t lose hope.”
