After the pelvic exenteration operation
You’ll be in an intensive care or high-dependency unit for the first few days after the operation, and will probably be in hospital for about 2-3 weeks.
When you wake up after the operation you will have dressings on your tummy. You may also have:
A drip going into a vein in your arm or neck (intravenous infusion). This will give you food and fluids until you are able to eat and drink again. It may also be used to give you painkillers.
A fine tube going into your back (epidural). This may be used to give you drugs that numb the nerves and stop you feeling sore.
A fine tube that passes down your nose, into your stomach or small intestine. This is called a nasogastric tube and it allows any fluids in the stomach to be removed so you don't feel sick. You may need this for a few days.
One or more drainage tubes coming from your wound to collect any extra fluid or blood. These will be removed when the amount of fluid draining has reduced.
A bag covering your colostomy.
A bag covering your urostomy or a tube coming from your urostomy (depending on the type of urostomy).
If you’ve had vaginal reconstruction, you will also have drains and bandages on the part of your body from where tissue was taken to make the new vagina.
You’ll need painkilling drugs for a few weeks after the operation.
To begin with, you’ll be given painkillers into a vein (intravenously) or into the space around your spinal cord (epidural anaesthesia). The painkillers are usually given continuously through a pump. The pump may have a hand control with a button you can press to top up your pain control if you feel sore. This is called patient controlled analgesia (PCA). It is designed so you can’t give yourself too much painkiller (overdose), so it’s okay to press it whenever you’re uncomfortable.
It’s important to let the doctor or nurses on the ward know if you’re in pain, so that the dose can be increased, or the painkillers changed, as soon as possible. When you’re ready to go home, your pain will be controlled with tablets and you’ll be given a prescription of painkillers to take.
You’ll be encouraged to start moving around as soon as possible after the operation. This is an essential part of your recovery. When you’re in bed, it’s important to do regular leg movements and deep breathing exercises. A physiotherapist or nurse will explain these to you.
A few days after your operation, your nurses will help you get out of bed and sit in a chair. Once all your drips and drains are out, you’ll find it easier to move around and take short walks around the ward.
After a few days, you’ll start being able to do more for yourself. Your stoma nurse will teach you how to change your stoma bags. You may feel worried about doing this to begin with, but most people find they get used to caring for their stoma.
Learning to look after a stoma takes time and patience, and no one expects you to be able to cope straight away. Like anything new, it will get easier with time and practice. We have more information about living with a stoma.
When you go home, you’ll need extra help and support for a few weeks as your body heals. If you live alone and don’t have anyone who can stay with you, tell the hospital staff so they can arrange help for you.
A district nurse will visit you in your home to help you care for your wound and stomas. You’ll also continue to see your stoma nurse. They’ll support and advise you while you’re learning to care for your stomas.
Recovery from pelvic exenteration takes a long time. It may take about 8-12 weeks after your surgery before you really start to feel better. Build up your activities slowly and only do as much as you feel able to. Your surgeon or nurse will tell you what things to avoid doing until you have had time to heal. As time goes on, you’ll begin to feel stronger and have more energy.
How long it takes you to return to work depends on the type of job you do. Ask your surgeon if you’re unsure how much time off you’ll need. Many people don’t feel completely healed for up to six months after surgery, and it can take a year or more to fully adjust. We have more information about work and cancer, which you may find useful.
The physical changes to your body after the operation will mean changes to your sex life. You’ll need to make both physical and emotional adjustments. The operation varies from person to person, and the effects it has on sexuality will also vary. Your surgeon and specialist nurse will talk you through the changes you may experience.
Although the vagina is removed during pelvic exenteration, the clitoris (through which women have orgasms) usually remains, and many women can still have pleasure from being touched in this area.
If you’ve had a vaginal reconstruction, sexual intercourse will be possible once you’ve healed. But you may need to try different positions to find what feels most comfortable for you. You’ll also need to use lubricant gels before sex because the new vagina won’t make its own lubrication. Your specialist nurse can tell you about these and can give you advice on coping with any difficulties you may have.
We have more information about cancer and sexuality.
Many people have worries and concerns about sex when they first have a stoma. Your stoma nurse will have experience of helping people through this and will be able to give you advice and support. Stoma support organisations also produce information you may find helpful.
Adjusting to changes in how your body looks and responds takes time. Many people need to talk through their feelings and emotions. Some feel nervous about how their partner will react to their body. There is no right or wrong time, or way, to talk about these issues. You can wait until you and your partner feel ready. You may want to consider seeing a sex therapist or counsellor. Your GP or specialist nurse or doctor can refer you. There are also a number of organisations that can give you information, advice and support about relationships and sexual intimacy.
You may experience many different emotions, including anger, resentment, guilt, anxiety and fear. These are all normal reactions and are part of the process people go through in trying to come to terms with major surgery and with the uncertainty cancer brings. It’s important to remember that many people who have pelvic exenteration are cured of cancer and go on to live full and satisfying lives.
Talking about your emotions isn’t always easy, but it can help reduce feelings of stress, anxiety and isolation. Try to let your family and friends know how you’re feeling so they can support you.
Many people get support through the internet. There are online support groups, social networking sites, forums, chat rooms and blogs for people affected by cancer. You can use these to ask questions and share your experience.
Our online community is a social networking site where you can talk to people in chat rooms, blog your journey, make friendships and join support groups.
Sometimes it’s easier to talk to someone who is not directly involved with your illness. You could ask your hospital consultant or GP to refer you to a doctor or counsellor. Some counsellors are specialists in the emotional problems of people with cancer and their relatives.
Our cancer support specialists can tell you more about counselling and let you know about services in your area.