When you were talking to your surgeon about getting an ostomy, hopefully they told you you can do anything with an ostomy that you did before. Dating and sex are included in that blanket statement. Along with thousands of other people, I’m living proof that you can meet someone after you’ve had your surgery and fall in love/be fallen in love with. No relationship is perfect, but I’ll tell you one thing – none of the imperfections of my relationship have been because of my ostomy. If my vague story isn’t enough to convince you, I encourage you to read It’s In The Bag and Under the Covers by Brenda Elsagher. It’s a collection of stories told by ostomates and their partners about dating and intimacy and it’s really encouraging. All that is proof that you can date and find love with an ostomy, but despite that, dating can be scary in itself and you’ll be doing it with a big “secret” to reveal at some point so here are some tips and things to remember about sharing the news. I compiled this from my own experience as well as from conversations with ostomate friends and strangers (I asked for advice in some social media based ostomy groups). I asked people their opinions on when you should share the news and what kinds of tips they had, as well as how they would do it. Here’s what we all came up with:

 

Things to Remember:

  • If you accept your ostomy, others are more likely to accept it to. Telling your new partner about it and coming off as grossed out is most likely going to be a big turn off.
  • If you go on a somewhat active date, then they’ll already be aware that you can do active things so when you do choose to tell them about your ostomy, they likely won’t be worried that you’re fragile and incapable of an active life. Plus, activities are bonding and fun!
  • An ostomy is pretty much a built in jerk repellant. If your partner immediately rejects you or acts immature when you tell them about your ostomy, that’s a huge red flag and you should be glad you discovered it early.
  • Telling someone about your ostomy is a test of their character. It’s important to remember this if you’re rejected, they might not have been a very supportive partner if other health challenges arise.
  • Not everyone can deal with the intensity of someone with a chronic illness or disability, that’s not your fault or problem, it’s theirs.

When to share the news:

Everyone has different opinions about when the ostomy “secret” should be revealed and have their reasons:

  • Let the person learn who you are before applying a label to yourself. Once a person develops strong feelings for you, they’re more likely to be accepting when you tell them about your ostomy, if they are a good person. (Though this was advice given to me, it was also my experience so this one has my vote)
  • Tell them after the first date (if it went well). That way they’ve met you and think you’re cool, but you aren’t totally invested and won’t waste anymore time if they don’t handle the news well.
  • Tell them when you trust them to be able to handle it.
  • Tell them before getting all handsy and intimate – while they might not be a person who would care if you have an ostomy, presentation matters, and finding out by accidentally ripping it off or seeing it randomly during a hook up is likely not the right presentation.
  • Try and try again. If you tell someone on the first date and they reject you, find someone else and try something different with them. People without ostomies get rejected too, remember?

How to share the news:

  • Start from the beginning. “When I was xx age, I was diagnosed with xx disease…I had my xx (fill in the part that was removed depending on which ostomy you had) removed and live with an ostomy.” Person probably hasn’t heard about what an ostomy is (but we’re working to change that right!). Explain it. Giving some depth and detail to your story helps them understand where you came from. Your ostomy saved your life and makes you who you are so it’s good to try to get that point across. Assuming you want a healthy relationship, you don’t want them to pity you for what you’ve gone through, you want them to admire you for your strength and love your ostomy for saving your life. (This is what I did – it was successful.)
  • Tell them over time. Maybe you mention you having IBD or having had cancer on one date. On the next, you mention that something was removed or that you had abdominal surgery, but neglect to mention the ostomy part of the story. Some people immediately realize you can’t poop out your butt without your colon or pee without a bladder, but others aren’t so quick. Then if you think you’re going to be intimate, mention by the way, remember when I said I had xx removed, well the other half to that is that I have an ostomy now. Maybe doing it this way tests the waters if you’re not sure how they’ll respond.

Obviously when and how to share about your ostomy is a personal decision, but I hope these perspectives help you a little in the dating (and friendship) world. Bottom line, don’t feel like you have to act any differently than you would have before your ostomy. If things don’t work out because of your ostomy, thank it, because you want to be with someone who is as strong as you and can be supportive.

 

The UOAA has put together a really in depth and informative guide for intimacy with an ostomy. It covers sex and how our bodies work during sex, common sexual problems, talking with your partner, effects of medicines on sex, and has other helpful hints. It’s very comprehensive and to try to relay all the information here wouldn’t do it justice. I think it’s important to point out intimacy includes sex but is so much more. And that you can have your cake and eat it too – in most instances, you can have sex all you like.

The UOAA also put together some fact sheets per gender that really briefly summarize the intimacy guide I mentioned above. If you’re a guy, check out the Male Sex Fact Sheet. If you’re a girl, check out the Female Sex Fact Sheet.

Adult Thong Diapers MemeRemember to keep a positive attitude in the bedroom and include humor in your life. If your stoma farts or you have a leak in bed, try to laugh about it with your partner. Life happens to everyone, ostomy or not, and you don’t always have control over what is going to happen, but you do have control over how you react and laughter is the best medicine.

Communication in the bedroom is really important. Tell your partner what positions are more comfortable and experiment with different positions to find the ones that work for you. Let your partner know that your ostomy doesn’t make you too fragile, they’re might be worried about hurting you or your ostomy.

With every surgery comes possible complications. These are some of the risks ostomy related surgery can have on your body:


Males:

Your ability to obtain erection and ejaculate may be compromised. From all the reading I’ve done, it seems like it’s not always permanent and in fact, the ejaculation part is often more a response to anxiety than an actual physical problem. It does not matter what kind of ostomy surgery you had, you will not lose your ability to orgasm. Orgasm and ejaculation are separate actions, so while your body may be on board with the orgasm, it may take some work to get your mind there.

The more intensive your ostomy-surgery was in your pelvic regions, the higher the risk for surgical damage to occur. This can include nerve damage that leads to the inability to achieve erection and can affect potency. The damage is not always permanent, though it can take years to get your function back. If you are interested in having kids after surgery, it doesn’t hurt to talk to your surgeon about options for saving your sperm, just in case. Remember – these complications don’t happen to everyone, but it’s good to be aware of them. For a nice chart that breaks down the level of risk for each complication associated with which surgery you had, check out page 13 of the UOAA Intimacy Guide.

Females:

Way less research has been done on sexual complications in females. When the rectum is removed, it is possible for the uterus to tilt slightly. It seems the most common problems for females are painful sex and vaginal dryness. Painful sex can be a problem, though if you keep trying, it might (and probably will) get better. There are tons of lubricants on the market and other natural ones you can research to help with vaginal dryness.