Sex After Stoma Surgery

Sexual relationships after you’ve had a stoma formed can feel complicated. It’s not just physical changes, but emotional changes to factor in too. I spoke to others in the community because I know we all have different concerns and experiences, and I wanted to be able to serve a wider audience.

I tried to cover all aspects of sexual relationships in this blog in the hope that our shared experiences will help fellow ostomates that might be worried heading into it, or that are experiencing any difficulties.

We discussed what our initial concerns were, practical issues after surgery, and how we overcame our challenges. It’s a very frank and honest post with nothing off limits!

Here’s a quick intro to the people I chatted to, including relevant details such as gender and sexual preference for context in the later quotes.

• Andy is a heterosexual male. He lives with an ileostomy and has his rectum intact.
• Dave is a bisexual male. He lives with a colostomy and has had his rectum removed. Dave uses a wheelchair due to a below-the-knee amputation (left) in 99, and a below-the-knee amputation (right) more recently, due to spina bifida.
• Our anonymous male (I’m calling him Mr X) is a polyamorous heterosexual. He lives with an Ileostomy and has had his rectum removed.
• Chris is a gay male. He lives with an Ileostomy and has had his rectum removed.
• Brandon is a heterosexual woman. She lives with a colostomy and has had her rectum removed.
• Sarah is a lesbian female. She lives with an ileostomy and has her rectum intact.
• I am a heterosexual female. I live with an ileostomy and have had my rectum removed.

Initial concerns about sex after stoma surgery

It’s important to take your time, and only proceed when you feel ready. Rushing into things can cause distress, and then that association with sex may cause anxiety in the future. Having a stoma can have a huge impact on body confidence. You might feel shy, embarrassed or awkward. We’re all different, and it’s a huge learning curve!

If you’re struggling emotionally, do reach out to your stoma nurse or GP. If you’re in need of more urgent help, you can find a local NHS urgent mental health helpline (England only) here, or you can call the Samaritans 24/7 helpline on 116 123.

When I had my first stoma, I wouldn’t even take my top off. My confidence was at rock bottom and I didn’t want my bag to be seen.

With my current stoma, I felt a little awkward. For a good 18 months pre-surgery, there was very little sex to be spoken of. This was due to daily pain, chronic fatigue, and the impact that a really long flare of pouchitis had had on my mental health. After surgery, because it had been so long, it felt a bit weird. Like I didn’t really know how to initiate it anymore. I couldn’t remember what we used to do! I was very aware of my bag at first. I thought it was very prominent, and it bothered me.

Andy was the same. He said: “I didn’t want my fiancée to see me naked. I felt incredibly self-conscious.”

Chris had completely different concerns: “It made me feel I was losing half my sexuality at first. I could no longer bottom anymore as a gay man. After getting my stoma I was very scared to have sex again. Psychologically I figured men would turn me away if they knew I had a bag of poo hanging off my belly. I was depressed at first.”

Luckily for Sarah, a supportive partner meant she feels like her sex life remained unaltered. She said: “My wife gave me comfort from day 1, that she would love me whether I had a bag or not which made me feel comfortable and confident.”

Let the sex commence!

Sex doesn’t always go to plan. Vaginal dryness and erectile dysfunction are not that uncommon when someone new to ostomy life tries to begin sexual relationships again. This can be psychological, but if you’re worried, speak to your GP or stoma nurse.

There’s a lot of empty space in my abdominal area. This has led to a tilted cervix, and it appears to have taken my vagina with it! It doesn’t seem to want to stay put in any particular spot, so sometimes a position that was comfortable the last time, suddenly causes pain and/or discomfort the next. It definitely keeps us on our toes, and I can become really frustrated when no position seems to be OK. Then, there’s oral sex. The position of my bag when it’s folded up can sometimes poke him in the eye! He says he’s never noticed, but I’m not sure I believe him!

Brandon also faced some physical hurdles: “Post Ostomy, the biggest challenge we have is the complete change in my pelvic floor due to the absence of rectum and previous hysterectomy.” But, it’s brought about some improvements too! “My Ostomy definitely increased the frequency of sex we were having after the initial surgical recovery, after a slight learning curve. Prior to surgery, I had 2 seton drains, 1 in the anus to my perineum and the other from my perineum through my right labia which made sex very uncomfortable.”

Mr X said: “My abdominal scar used to cramp up after a while. I also felt the need to adapt certain sexual positions to protect the stoma, e.g. if a partner was on top I made sure they didn’t lie on it! Also, I wasn’t necessarily embarrassed at being naked with a new partner, as I made sure that they were comfortable with the bag from the get-go, I was mainly embarrassed at the ‘crinkling’ sound that it made during sex! I suppose I felt a certain ambiguity; yes, I had to get used to things being a bit different and having to consider what my body was doing more than I had previously, but I was mainly just enjoying having sex again after surgery!”

For Dave, the main issue has been when to tell prospective sexual partners about his ostomy: “I’ve always had to explain my colostomy to sexual partners and choosing the point at which to ‘come out’ about it has always been tricky. I’ve often bundled it with other explanations related to my disability as there are practical issues around sex. It’s been a problem for some partners and not for others. Men tend to be more matter of fact about it and the women tend to ask more questions about it.”

Chris likes to be upfront about his stoma too: “Whether it be a sexual meeting or the start of a relationship, I always try and have the conversation beforehand, but sometimes (especially with hook ups), I just forget to tell and I dare say some never noticed lol.”

Overcoming barriers to sex with a stoma

I think it’s important to remember to take things slowly. Keep communicating with your partner and remember that intimacy doesn’t have to mean penetrative sex.

For me, it was simply a case of time. As I gained some of the weight I’d lost, the stoma bag felt less prominent. I got used to it being there. We had to learn about other again, including the fact that some positions that used to be OK, aren’t anymore.

My partner always reassures me when I start getting stressed that every position is not working this time, and he manages to stay calm. He is more than happy to switch to non-penetrative sex instead. We usually laugh about how disastrous it was afterwards!

Brandon has had similar experiences. “At first, I was frustrated because I thought it was more of the same from pre-Ostomy but my husband has been with me since pre-diagnosis and we’ve figured out the correct angles and new ways to make things work right. If anything, it was like my husband got to sleep with a brand new person without cheating. Lol. We sometimes have angling issues, but having communication is always the key to a fruitful sex life with this disease and surgery.”

Andy said: “With reassurance, I regained my body confidence. It took my fiancée a while to convince me the bag wasn’t an issue.”

Dave found another tactic that helped him resolve his body confidence issues: “I’ve done things like life modelling which has helped me get comfortable with my body and the scars etc. The surgery to form my stoma left a 12-inch scar on my stomach.”

Mr X said: “I realised that the crinkling isn’t going away, so I just have to get on with it! Wearing a tight t-shirt helps if I’m with someone new, but that soon comes off. I suppose I’m just thankful to be able to have a second stab at life since the cancer diagnosis, so my attitude to the little things that I would have found annoying/embarrassing in the past has totally changed. Carpe diem! 2 years post-surgery and I am back to enjoying every second of my sex life.”

Chris told me: “The older I get, I see gay men don’t care. Some may ask questions but few ever turn me away. Some gay men are wired differently; some are top, some are bottom, some are versatile. I considered myself very versatile. So for me the transition to only being a top wasn’t too jarring.”

Tips for people worried about sex after stoma surgery

I asked, what would be your top tips for someone worried about sex after surgery?

Mr X said: “Don’t be! Yes, you might have to adapt a little, but that is a tiny hindrance when you remember the reason why you have had the surgery in the first place, and that you are out the other side. Sex is also massively important to mental health; it boosts serotonin and dopamine, and gives us a feeling of elation. Not only that, it’s a great workout for those abdominal muscles. My top tip for someone worried about sex after surgery: have sex – it aids recovery!!”

Andy said: “Trust in people when they say having a stoma isn’t an issue and just enjoy the life you’ve got.”

Brandon said: “Don’t be afraid to talk out your fears, say ouch, that’s not working. It doesn’t take away from the experience, it just grows a deeper intimacy.”

Dave said: “I think my main tip would be to talk about it with a partner and find out any concerns they have and help resolve them.”

Chris said: “When you have an ostomy, go beyond what you knew before it, and don’t be afraid to top.”

Sarah said: “Be open with your partner, if they have issues then it’s on them and not you. Having a stoma is a part of you and should be loved just as much as you are.”

I understand that building confidence takes time and that having those initial conversations, especially with someone new can seem very daunting. When I was dating with my ileostomy, I chose to be upfront about it right from the start. I didn’t want to waste my time going on dates if my stoma was going to bother them.

Sometimes, it’s simply a case of practice makes perfect. The more conversations you have, the easier it gets. The same with actually having sex and figuring out what works and what doesn’t.

If your bag continues to bother you and you think you’d be more comfortable keeping it covered and flat, it’s worth considering using waistbands or ostomy intimacy underwear (available for women). I just make sure my bag’s empty and fold it in half. Mine has Velcro to keep it folded, but hair grips and paper clips work too!

To summarise, open communication is key, and don’t be afraid of change; oral sex, lubricants, sex toys, different positions etc can all be part of a healthy intimate relationship. So can cuddles and holding hands!

It’s important to note that the stoma opening should never be used for penetrative sex. This could lead to infections, or even further surgery.

I’d like to say a big thank you to my fellow ostomates for sharing so openly with me.

I hope this blog has been useful to you. If you’d like to discuss any of the elements in it (or anything else), do pop over to the Fittleworth Ostomate Group on Facebook.