Sex is a big part of many peoples’ lives, and it’s only natural to worry about what a major operation might do to change it. Having a stoma can change how people have sex, but it is rarely a reason to stop having fun with it. As with so many facets of life with a stoma, there is little that can’t be achieved with some knowledge, a lot of communication and a little willingness to adapt.
If you’ve been together with a partner throughout your illness and operation, it is likely that you will have learned about dealing with a stoma together. It can be important to include your partner in the process: they may often feel just as scared and sad as you, and adjusting to the changes in your life together will make it easier for both. Talking to each other and sharing your worries openly makes them less intense, and seeing adjustment to a stoma as something that can be achieved as a couple can be a way to grow closer than before.
After the operation, some people will feel insecure and may be reluctant to look at their stomachs or see themselves naked. It can be very reassuring to hear a partner make it clear that their feelings have not changed. It may be helpful to take the first look at the stoma together. Getting close to each other again, touching each other and sleeping in the same bed are good ways to regain body confidence and rekindle an intimate relationship after a difficult surgery.
If a partner asks you to show them how to change a stoma pouch, they should be encouraged to learn. This can be very useful if you become ill or if you get pregnant, when it is difficult to see past the baby bump. Some partners even offer to wear a stoma pouch on their skin for a day to get an idea for themselves of what it is like to live with a stoma.
However, sometimes relationships do come to an end after an operation. This does not necessarily mean that the stoma itself is the reason for the break-up; there are countless reasons why people grow apart, and a major change can be a catalyst for other longstanding issues. However, if an ex-partner does claim the stoma is the reason for the break-up, you are probably better off without them.
In general, the same principles apply for gay couples as for straight couples, and there is not a lot of specific information available for gay people with an ostomy (yet). Stoma-forming surgery presents a challenge for people who use their rectum for sex. If it is removed entirely, anal sex is not possible. But even if the rectum remains intact (but disconnected), the NHS cautions against anal sex, as it may cause painful tearing and bleeding. If this is a concern, it is worth speaking to a stoma nurse, who can help you evaluate the risks and enjoy a safe and pleasurable sex life.
If you are single when you get your stoma, or if you break up with an old partner, a point will probably come when you are ready to start dating again. The big question is when to let a prospective date know about your stoma. The right time to tell is different for everybody. It is a good idea to not leave it to the last possible minute before clothes come off, as it risks spoiling the mood or making a date feel left in the dark.
Telling dates about your stoma before meeting up will certainly filter out the wrong type of people straight away. It is an especially sensible strategy when using a dating app that is also used for casual encounters. On the other hand, some people prefer to tell only after a couple of dates, so the prospective partner has time to see that having a stoma does not impact their ability to go out and have fun. You can start the conversation by telling them about your illness and how it led to getting a stoma. To round up the conversation, you can ask them if they know of anyone in a similar situation and if there is anything they would like to know.
Try different positions if you experience discomfort
What to wear
It is important to feel comfortable and attractive, so wear something you like. Some people may prefer to keep a top on, but this is by no means necessary. There are stoma belts available that keep the appliance in place and cover it up, these generally come in skin tones, black or white. For women, high-waisted knickers can be a solution if they want to cover the stoma. These also offer same light support in the early days following surgery. There are also lacey, elastic ‘body tubes’ that cover the abdomen only, which contain a discreet pocket for the pouch. Crotchless underwear (for both men and women) is also an option for those who don’t want to get completely naked. There are some brands that specialise in ostomy underwear, and it may be advisable to look at these products as well. Ostomy underwear does not have to be boring either; there are many regular underwear options that provide enough support, and some ostomates may prefer to pick up needle and thread to make their own customised underwear.
Got a problem, girls?
Stoma formation can affect women in a few ways. Extra dryness is fairly common but can be resolved with a water-based lubricant, suppositories or lubricated condoms, or even saliva. Any impact on nerve paths can alter the sensitivity of the clitoris or vagina. Adapting to these changes may take careful and patient experimentation, potentially through masturbation or with the help of a communicative, understanding partner. After surgery, the body sometimes develops scar tissue, which can affect the elasticity of the vagina. It should be possible to loosen with a finger or a specialist dilator.
Because the rectum supports the vagina during sex, its removal can make the missionary position less comfortable. If this is a problem, there are many other positions to try. It is worth finding positions that do not put weight on the stoma, as this can be uncomfortable. You can also use a cushion or pillow to protect the stoma. Discomfort can be distracting but can be alleviated with analgesic gels and special exercises. If you are concerned about any of these issues, it is perfectly appropriate to speak with a stoma care nurse, who may be able to refer you for other specialised support if necessary.
Female fertility is not usually affected by the removal of the rectum or bladder, but a pelvic extenteration (which removes the bladder, rectum, ovaries, uterus, colon and, sometimes, parts of the vagina) does lead to infertility.
After stoma formation, when you start having sex is entirely up to you and your partner. However, it is wise to make sure that you have completely recovered from the operation and that the wound around the stoma has healed. People can feel pressured to live a ‘full’ sex life, but the only expectations for a healthy and normal sex life should be to do what you and your partner feel comfortable with.
A major shock, especially illness and an operation, can hamper libido, and it is perfectly normal to not have the same sexual appetite as before. As people recover, many will find their sex drive recovers too. There is no need to resume an active sex life immediately, and it can be eased into gradually when you are ready, perhaps by starting with intimate activities that do not involve penetrative sex. The best way to start may be by just cuddling, kissing and stroking, and then seeing whether or not things naturally go further from there.
After stoma surgery often comes the essential challenge of accepting and connecting with a changed body. For some, sex can be a way to achieve this, and being sexually active can feel like a key part of returning to a normal life. However, it is important not to put too much pressure on the act itself, or on successfully completing intercourse. As the cliché has it: our primary sexual organ is the brain. Sexual problems often stem from anxiety and insecurities, and so, if you want to get back to business, the most important thing is to be able to do it in a relaxed frame of mind.
After an operation, your partner may be scared of hurting you during sex. This shouldn’t be interpreted as rejection, as it is unlikely to be anything of the sort. If you are concerned or feel your partner is being overly cautious, the best thing is to talk openly about it and reassure them of how far you feel safe and comfortable. One safety concern that does need stating is that the stoma itself should under no circumstances be used as an orifice for sex.
Got a problem guys?
After a stoma-forming operation, temporary problems with getting and maintaining erections are fairly common. Some men will experience erection issues for up to 2 years after the procedure, but this does not mean nerves have been damaged, and typically all functions will return to normal. Erectile issues are often to do with blood supply and nerve endings in the penis, and there are many treatments that can help, particularly medications, as well as support condoms and vacuum pumps.
This is something you should feel comfortable talking about with a stoma care and/or sexual health nurse, as it can be an important part of your holistic health and wellbeing.
As the nerves controlling genital functions are located near the bowel, men undergoing stoma surgery face an extremely small risk of impotency. There are no known cases of this happening after an operation for ulcerative colitis and only very few following an operation for bowel cancer. Changes around the nerves can make certain sensations more or less intense.
For men, operations to remove the bladder (such as a pelvic extenteration, which also removes the colon and rectum) will typically cause infertility. If possible, this should be discussed with the hospital team before the operation.
It is always a good idea to try and empty or change your pouch before initiating a sexual encounter. It may feel like this takes the spontaneity out of the act, but it will help you feel more at ease. The new, empty pouch can be tucked in or taped to the body, so it does not flap about. Using a smaller pouch means it is less likely to get in the way, which may more than make up for having to empty it sooner.
Some ostomates will worry that their pouch will come unstuck during sex, or a partner might be worried they will hurt them. If properly sealed, a stoma bag will not come off the skin easily, but trying different sexual positions, such as side-to-side, can alleviate these fears and will also ensure the edges of the pouch do not chafe the partner’s skin.
Most modern pouches are made from materials that keep in odours, so there shouldn’t be much need to worry about smell. However, if you want to make extra sure, there are deodorants available that can be either placed in the pouch or swallowed.
If you have a colostomy and you can be sure there will be no output for a while, you can wear a stoma cap instead of a pouch. These are very small and look just like a big plaster. They are also very handy for oral sex, as they ensure the pouch does not get into your partner’s face. Stoma caps have practically no capacity to hold any output, so be careful when using them.
When ostomates engage in sex, it is helpful to have a sense of humour. There may be occasional noises. Even if you are unlucky enough to have a leak, a willingness to laugh and shower it off together can provide a new opportunity for intimacy and make the leak only a temporary interruption to the encounter. With a partner, communication is key.
Sexual health is often a key part of overall wellbeing, and it is always appropriate to reach out to a stoma care nurse or other relevant health professional for support and advice.
Pauline van Roijen is the editor of Nursing and Residential Care
This article has been reviewed by Julia Williams, Lecturer at Bucks New University