Ulcerative colitis (UC) is a form of inflammatory bowel disease that affects the inner lining of the large intestine. Over 900,000 people in the United States live with the condition, which usually starts to manifest between ages 15 and 30. As its name suggests, it causes inflammation and creates ulcers within this internal tissue, especially the colon and rectum, which in turn leads to a set of symptoms that may affect a person’s entire life—including their sex life.
These symptoms vary widely in nature, frequency, and intensity, and can change over time if the disease grows and spreads through the intestine, as it does for many people. Most people experience some degree of abdominal pain and cramping, rectal pain and bleeding, and an intense feeling of a constant need to poop. Some have frequent diarrhea and episodes of incontinence; others end up constipated. Acute symptom flare-ups often cause fevers, fatigue, and weakness as well. In severe cases, inflammation may spread throughout the body, causing wider joint and eye problems. A person’s colon may also swell massively, get punctured, or fully burst, which can lead to potentially life-threatening infections or other serious internal injuries.
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Pain, fatigue, and the constant feeling of needing to poop often directly interfere with a person’s ability to feel sexual, to get or stay aroused even if they want sex, and to get into or hold certain positions. The need to consider and manage symptom triggers also makes it much harder to pursue spontaneous sex. Even when people aren’t experiencing any (major) symptoms, fears about the prospect of experiencing a sudden flare-up, about how their partners view their condition, and especially about the risk of suddenly losing control of their bowels during sex can mess with their sex drive, or their ability to fully get into sex in the moment—especially for people who like to engage in anal play.
No one knows what causes UC, or how to cure it. But care providers can help find the right mix of medication and lifestyle changes to resolve each individual’s current flare-ups, minimize the frequency and severity of their future flare-ups, and manage inter-flare symptoms. The 30 percent of cases that prove resistant to treatment, or grow incredibly severe usually have to be resolved by removing part or all of the intestine—which is its own health journey. But whatever the remedy, effective treatment usually mitigates or eliminates direct UC complications.
However, many common ulcerative colitis medications also lower people’s sex drive, or inhibit their ability to get or stay aroused or to come. Surgeries can change the positioning of abdominal organs or damage nerves that connect to the genital, in ways that ultimately alter people’s experience of sex. And treating the direct, physical effects of UC may also do nothing to resolve underlying fears and anxieties related to living with the condition that affect people’s sex lives.
In theory, care providers can help their patients mitigate or resolve the sexual side effects of the condition or its treatment. Yet, few doctors or patients ever talk about sex. There’s also not a lot of research or guidance out there to help medical experts guide their patients—especially on issues like how to have anal sex while living with the condition, or after a major rectal surgery.
A few organizations, like Crohn’s & Colitis UK, have tried to collect all the available info on sex and ulcerative colitis and present it in an easy-to-digest format. A handful of researchers are also pushing for more research into the sexual effects of the condition and how to manage them. Yet accounts of people’s experiences navigating sex and intimacy alongside UC are still relatively rare. To address this gap, VICE reached out to Rosa, who was diagnosed with ulcerative colitis two years ago, and her partner Colby to hear about how they manage sex.
At their request, VICE has omitted Rosa and Colby’s last names in order to protect their privacy. This interview has been edited for length and clarity.
Rosa: I’ve probably had ulcerative colitis for quite a while, but my gut issues were misdiagnosed as the result of stress or Irritable Bowel Syndrome. I think I may have unintentionally kept my condition in check for years, though, because I was vegetarian and ate relatively well.
Then in April 2020 I developed a weird fever and felt a constant need to go to the bathroom, even though sometimes when I went nothing would happen. And sometimes I’d just lose control of my bowels. I was going to the bathroom maybe 20 times a day, and my stomach was bloated and tender. I felt this pain in my abdomen that was beyond what I can describe. I had to wear loose pants because I couldn’t stand any pressure around that area. I felt weak and fatigued. In retrospect, I think the pandemic stressed me out so much that it triggered a severe flare-up.
“In retrospect, I think the pandemic stressed me out so much that it triggered a severe flare-up.”
I realized something was really wrong, but I couldn’t see my regular doctor because of early pandemic restrictions. So, I went to the hospital, and they admitted me because they thought I might have COVID. This was really early on in the pandemic when we still didn’t understand all the symptoms associated with it. They put me through a ton of tests, and eventually, some of them showed that I had both diverticulitis and moderate-to-severe ulcerative colitis. I didn’t know what either of those conditions were, or what they’d mean for my life.
But I got that diagnosis on the same day that I started talking to Colby on Tinder.
Colby: She was up-front from the start. She said, “Hey, if you’re looking for dates or to mess around or anything like that, I can’t do that right now because I’m dealing with a health thing.”
Rosa: My doctor told me my flare-up was so severe that I couldn’t lift heavy things, go cycling, or have sex for six weeks, just to give that area of my body time to heal undisturbed. So, yeah, I was like, “I’m really sick. You don’t have to talk to me.” But Colby said, “Let’s keep chatting. I’ll keep you company.” That was nice, because I was by myself in the hospital due to COVID restrictions—and my family was nervous about my condition. So it was easier to talk to him about it in some ways. I think it was a distraction from the pandemic for both of us as well.
Colby: I didn’t know anything about ulcerative colitis, except what I’d seen in pharmaceutical commercials. So when Rosa told me about her diagnosis, I was like, “Oh, hey, it’s one of those!”
Rosa: [Laughs]
Colby: I certainly didn’t have any firsthand experience or information to contextualize it.
Rosa: We didn’t meet until mid-May, because I was on bed rest. But because of the pandemic, we weren’t in a hurry to meet up in person. So, we had time to talk a lot about the condition.
Whenever I have a full-on flare-up, or just don’t feel great for a day, I’m just too exhausted and uncomfortable to have sex. And I’m really vocal about that; the fact that we’ve been talking about my condition from the very beginning helps me be direct and clear with Colby.
Colby: I do my best to be aware of how Rosa’s feeling as well—like if she mentions offhand that she’s not feeling well, or if she’s going to the bathroom longer or more often than usual. But outside of those times, we both have a fairly high sex drive. It’s actually nice to take a break for a few days sometimes, in order to just recharge and come back to sex fresh when she feels better.
“We’ve learned to relax when I’m sick and do all the fun things when I’m not.”
Rosa: [Laughs] Yeah, we’ve learned to relax when I’m sick and do all the fun things when I’m not. I do still pursue sex when I have low to moderate levels of pain and discomfort, though, because I know that endorphins will kick in and actually help me feel better overall soon enough.
Early on, I did stress out about the prospect of having a sudden moment of incontinence during sex, because I’m in good control of my bowels outside of flare-ups but I have heard of some people who are in remission when suddenly something changes and they just lose control.
Colby: You know, I never really thought about the chance of that happening.
Rosa: I eventually found an ulcerative colitis forum on Reddit. Recognizing that other people experience the same issues and concerns I do helped me stress out less, which then helps me feel more comfortable during sex—and likely helps me manage my symptoms as well.
But my life does now revolve around this condition. I’m not on any medication now, because all the go-to drugs didn’t do anything for me and the likely side effects of the next things to try are all worse than my current symptoms. This may change in the future, but right now I manage my ulcerative colitis entirely through lifestyle changes. I gave up my job as an executive chef because the stress of it was contributing to my flare-ups, and because I need the mornings to myself; I get up at 5 a.m. and spend the next two to three hours in and out of the bathroom. I feel best in the evenings, so that’s when I’m able to work now, front-of-house in restaurants. And I watch what I eat—especially whenever we’re planning a date. I avoid eating things like pasta and tomatoes, which I know aggravate my symptoms, so that I’ll be able to have sex that night.
Lately, we’ve been talking about what our relationship will look like if I have to stop drinking, because going out to breweries to taste new beers was a big part of our dating life. But I took a few months off drinking at the start of this year, then had a full beer a few days ago, and soon after had a flare-up. We actually just had to cancel a date night because of that.
Colby: When we have to cancel plans like that, or just suddenly can’t have sex, it’s not a big deal because we know we’ll be able to have sex another time. We can always reschedule things. And we can still spend time together to maintain a sense of intimacy. Planning sexual things for later helps us stay sexually engaged with each other mentally even when we can’t get physical.
Rosa: I have noticed that, during sex, I like doggy style more than I did before I got diagnosed. I think that’s because it helps keep pressure off from on top of me, which is often uncomfortable.
Colby: I’ve also tried to adjust the things I do during sex, especially when I know Rosa’s not feeling at her best but still wants to be intimate. I go for positions that don’t require as much motion and effort on her end if she’s feeling fatigued, and I sometimes go a bit easier during sex. And when Rosa’s not feeling well enough to have sex but still wants to be sexual, I can still do things like hand stuff, or giving her a sensual body rub—although I try not to get her too turned on because then we both know that we won’t be able to act on that, which can be frustrating.
Rosa: [Laughs]. Yeah, that is an issue. We also do mutual masturbation when I don’t feel great but still want to be sexual. I get to control my own pleasure, and only do what feels right for me.
We both used to enjoy anal sex, as well. But my doctor made it very clear from early on that if I have a flare-up or any type of pain, then anal is off the table because it can aggravate any inflammation within the walls of my rectum, and there may be a risk of perforation as well. We have had anal sex a few times when I’ve been feeling totally fine, and it was great! But we do it less and less because I’ve gotten a bit paranoid about the risks—in part because there’s just so little information out there on what’s safe with anal play, and when, for people with this condition. I just don’t want it to accidentally lead to a major health problem later on in my life.
I’ve also recently developed this issue where, whenever I eat something high in fiber, my pain gets so bad specifically around my backside that even water in a shower hitting my behind hurts a lot.
“I’ve gotten a bit paranoid about the risks—in part because there’s just so little information out there on what’s safe with anal play, and when, for people with this condition.”
Colby: Yeah, even if we weren’t having full anal sex we still did a little general anal stimulation until recently. But with this new bad pain, it’s harder to pursue that, so we’ve stepped it back.
Rosa: Anal play takes too much prep work for me now. I mean, it takes prep work for everyone, but I think it takes even more for me because of this condition. So, there are just diminishing returns given the amount of time I have to put into making it work. And we already have to do so much planning around sex, so we prefer things we can do more spontaneously in the moment.
Colby: I feel like we’ve checked anal off of our bucket list, though, so it’s just like…
Rosa: Yeah, actually one of the reasons we started dating was that we both wanted to explore new sexual things, like new types of anal play. But once we’ve tried them, we’re usually good.
We’ve talked about what we’ll do if things get worse with my ulcerative colitis. One of my chef friends actually had it too, and it got so bad that she had to have her colon removed, so we’ve discussed that possibility specifically. When I’m having particularly bad days or feeling very emotional, sometimes I tell Colby that he should remember that he can see other people who don’t have these issues. Because I used to be poly and date multiple partners, so I’m comfortable with that, and I don’t think it’d be fair for him to not be able to have his sexual needs met in the future just because my condition gets worse. I always tell him I just want him to be happy.
Colby’s monogamous though, and he doesn’t want to be poly. I was always willing to consider monogamy with the right person, and for me that’s Colby. I used to think I’d likely be totally polyamorous for my entire life, but I chose to stop pursuing non-monogamous relationships because of the progression my condition. It’s an emotionally exhausting disease and trying to navigate it with one understanding person is easier than with five people. Another of my friends with colitis was poly and chose to go monogamous for the same reason.
Colby: We’ll probably evaluate this more in the future, but right now I don’t want to see other people just to fulfill my own sexual needs, because if I know Rosa’s not able to do anything similar for her own sexual needs while I’m out pursuing that then I think I’m not going to like it. If we find one person we’re both attracted to and they can meet Rosa’s needs in some way as well, then I might be into it. But that seems like a pretty tall order to fill, so I’m still not sure.
Rosa: Overall, we’ve decided that we’ll deal with new issues that come up in our sex life whenever they arise, because we have confidence in our ability to communicate through them.
Colby: There’s only so much you can plan for in the future. Because how you think you’re going to react and how you actually react are often different things. So, we handle things as they come.
