Shelley: Sex and Intimacy

Shelley received compensation from Coloplast to provide this information. Each person’s situation is unique so your experience may not be the same.

Shelley, takes a candid look at the subject of ‘Intimacy’ and shares her experiences.

When I looked up the term ‘intimacy’ I came across the following descriptions: acquaintance, affection, affinity, close relationship, communion, confidence, confidentiality, experience, familiarity, friendship, inwardness and understanding. These are all positive words and that’s how I feel the topic of intimacy should be discussed. However, when researching information or discussions about intimacy with an ostomy; I rarely, if ever saw any of these words above and I wondered why?

I believe that there remains a lack of information for ostomates when it comes to sex. Even using the word ‘sex’ is often overlooked. It is what it is; we don’t simply wish to be intimate, we wish to copulate, pro-create, fornicate...make love. It’s a perfectly normal part of life and ostomates should be able to enjoy a healthy sex life.
I also believe that many avoid the art of communication, which can in fact alleviate much of the fear and anxiety around issues such as intimacy post op.

For me, the following were important when it came to intimacy with an ostomy;

Allow your body time to recover

Any trauma to the body is going to need a certain amount of healing time and particularly after major surgery. Due to the anatomy of ostomy surgery, it could cause pain if you were to engage in penetrative sex too soon. I found that the best thing to do was to listen to my body & assess the physical healing both myself and with my Stoma Care Nurse. Don’t be embarrassed to show the nurse your wounds, especially if you’ve had your rectum removed. Any additional healing needed, will be noted and treated and you can then make sensible decision about intimacy from this.

I waited 5 weeks to have penetrative sex, as this was when I began to be more active in my daily activities. You shouldn’t just take the wounds into account, but also the fatigue that one can experience post op or the effect from medications. Take all of this into account when assessing how you feel physically.

There’s no time scale on when you and your partner can get close.

I believe this is very important in building those stepping stones up to full intercourse. Spend time together, try gentle touching and even engage in foreplay. Keep your partner informed throughout your recovery, so there’s no unnecessary awkwardness or harm caused. My partner and I believe the key to a good relationship is communication and so he was very much part of the entire surgery & healing process. I tried my best to not shut him out and discuss any fears I had. For example, ‘will you be gentle on the first time’ or ‘can you not do a, b or c please until I say so’?

If you are single, give yourself time to adjust and be confident to discuss your ostomy with potential new partners. It’s very much a personal choice as to whether you tell a partner from the beginning of dating.

Anxieties are natural

Having major surgery is difficult enough but having such a personal form of surgery can be particularly traumatising. Anxieties are natural and you may wonder if you’ll a) have sex as before, b) feel attractive and c) get aroused or reach climax. These are all perfectly normal thoughts and all require time, patience and support from both your partner and care team.

For me, I felt that yes - there are few reasons (out of your control), as to why you shouldn’t be able to have sex as before, I believe how you feel about your body depends on how you approach and work on accepting your ostomy. I faced my surgery with positivity and vowed it wouldn't hold me back, so this gave me a fear-free approach to my sex life. I saw it as no different from before. If you are struggling to accept your ostomy I'd seek support from your partner, family, friends, support groups (community or online) or Stoma Care Nurse. You are not alone and grief is not always straightforward, so don't rush acceptance and seek support via the available channels. Then again unless you had a surgical complication or problems prior to surgery, there is no reason why you cannot achieve arousal or reach climax. Ultimately relaxing and enjoying yourself, without worrying about your ostomy, will help these aspects. Again, acceptance is a big part of this and knowing that your partner isn’t fazed by your ostomy, so keep those communication channels open and seek support where necessary.

How will it affect my partner?

My partner was very open about his feelings. From day one, I asked him to tell me of any fears he had, and he did have a couple. He feared how he would feel about my body changing. Not because he wouldn't find me attractive but because he hated the idea of someone cutting me up. I am glad he told me because I could reassure him and remove any ongoing fear that may have festered and affected our intimacy. I discussed the procedure, we looked at photos of the procedure, he attended my appointments and was free to ask questions and he joined support groups to learn more from other ostomates.

He also said he wondered if he’d still feel needed and wanted in the same way after surgery, because I would get better and find some freedom in wellness. Again, a perfectly understandable emotion and one I could again reassure him on and let him know he had nothing to worry about. That really helped our post-surgery sex life because we trusted each other to be open and discuss concerns as they arose.

I feel that remembering your partner has needs is very important too. Having surgery isn’t just about you but about them as well. They may have insecurities like those mentioned above and even if you are not physically ready to have full intercourse, remember that talking, cuddling, kissing & gentle touching are just as important. Don’t leave awkward moments and periods of silence. This will only make it harder to return to your pre-surgery sex life. Keep them updated on how you’re feeling both physically and mentally.