Our short video with Andreia Fernandes, a gynae-oncology Clinical Nurse Specialist at the Royal Marsden Hospital, should answer some of your questions.
What is a stoma?
When ovarian cancer is more advanced at the time of diagnosis, it will sometimes have spread to the surface of the bowel (part of the digestive system).
In these cases, in order to ensure that as much of the cancer as possible is removed, your surgery may include removing a part of the bowel.
Sometimes the affected area of the bowel can be removed and the two ends joined back together. But if this isn't possible your body will need a new way to get rid of faeces (poo). In these cases, the surgeon will make an opening through the wall of your abdomen (tummy) and bring the end of the bowel through the skin. This is called the creation of an ostomy or stoma (an artificial opening). Poo is then collected in a stoma bag which is attached to your tummy.
Is there just one type of stoma?
There are two different types of stoma that you might have after ovarian cancer surgery. The type that you have and the name it's given depends on which part of the bowel your surgeon needs to use:
A colostomy is formed from the large bowel (colon) and produces a more solid poo.
An ileostomy is formed from the small bowel (ileum) and produces a poo that is more like porridge.
In both cases the open end of the bowel is sewn onto the skin and is called a stoma.
The easiest way to describe it is, do an 'ooh' shape with your lips and look in the mirror! The shape and pinkness is about correct.
When will I find out if I need a stoma?
Before you have your operation, your surgeon should talk to you about all of the possible outcomes (results) it. This includes the creation of a stoma. During this conversation you will be asked if you give permission (consent) for a stoma to be formed if you need one.
It’s normal to feel overwhelmed or anxious about your operation. Don’t be afraid to ask your surgeon to explain things more than once or in a different way to help you understand.
If you know that your operation will involve creating a stoma (because it’s clear that the cancer is affecting your bowel) you will also talk about where the stoma will be on your body. This is usually on the left-hand side of your tummy for a colostomy and the right-hand side for an ileostomy. Your surgeon will explain things to you based on your individual circumstances. You should then be able to speak to a Clinical Nurse Specialist (CNS), sometimes called a stoma nurse, and ask questions about what to expect.
A nurse came to mark my tummy with a permanent marker on both the left and right sides. When doing this she asked how I wore my clothes – high waisted or low – so some consideration could be given to where the stoma was sited.
Sometimes a surgeon won’t know that you need a stoma until they’re operating. In these cases a stoma may be formed as part of an emergency procedure. These unexpected and unplanned stomas can be particularly difficult to cope with and may come as a shock. You can speak to your surgeon about this before the operation if it’s something you’re worried about.
How does a stoma work?
Your bowel will still work as normal but the poo will come out of the stoma into the stoma bag. Your stoma just means your bowel opening is in a different place from before.
A removable bag (stoma bag) will be fitted snugly around your stoma. This will keep the poo contained as it leaves your bowel. The stoma bag will need to be emptied and/or changed regularly. There are lots of different stoma bags and the type you have will depend on the type of stoma you have.
Your stoma nurse will show you how to look after your stoma. This includes changing your stoma bag and getting rid of used bags. They will also talk to you about how to reorder the supplies that you need to manage your stoma.
One of the biggest things is the worry of an accident in public – it can really hold you back at first but once I had the right bags there was no holding me back. I’ve been swimming, I go to exercise classes twice a week and I went on almost every ride at Disneyland Paris. I’ve never worn any “special” garments for those or any other activities.
Is a stoma permanent?
In many cases of ovarian cancer a stoma is intended to be temporary (only for a limited amount of time). This means that at some point in the future you may be able to have further surgery to reverse your stoma, and that you would no longer have a stoma. It's important to remember that all cases are different and you would need to discuss your individual case with your surgeon and medical team.
How do I learn to cope with a stoma?
Although having a stoma isn't uncommon, having a stoma in addition to an ovarian cancer diagnosis is a huge event for anyone.
Your stoma nurse will support you after the surgery to help you get used to your stoma and how to care for it. They will be happy to answer your questions and will help you to feel as comfortable and confident as possible. You might also find it helpful to get in touch with your community hospital to ask if there are community stoma nurses in your area. A community hospital is a small hospital that provides a range of services to the people living in your area. You can also call our support line and speak to one of our specialist nurses.
I'm coming up to three years with my stoma. Be kind to yourself and give yourself time, you are not on your own. I do everything I did before my ovarian cancer and my stoma. It doesn't have to be a negative experience.
Stoma bags are odour-proof so your stoma won’t smell as you go about your day-to-day activities. There will be a smell when you empty or change your stoma bag – but everyone makes smells when they go to the toilet! If you’re still worried about smell there are odour neutralisers available which can be put inside your stoma bag. These are drops or granules that help to reduce any smell and they can help you feel more confident.
How can I be sure the stoma bag is watertight? What if it leaks?
Stoma bags are watertight and once you find one that suits you, you should have very few problems with leaking. While you’re getting used to your stoma it’s normal to have worries about how watertight your stoma bag is. The thought of it leaking can be embarrassing and upsetting. But there are lots of different types of stoma bags and all of them are specially designed for their purpose. As you recover from your operation, or if you change weight, you may need to adjust the fit of your stoma bag as your stoma may change size. Your stoma nurse will work with you to find the right bag for you.
Is there anything I should or shouldn't eat or drink?
You should be able to eat and drink lots of the same things as before your operation, but everyone reacts to food and drink in different ways.
There may be certain things you’re told not to eat or drink depending on the type of stoma you have. In general, you should aim to eat regular well-balanced meals and drink lots of water, particularly in the first few weeks and months after your surgery. Remember that the consistency of your poo can change and you can still become constipated (find it difficult to poo) or have diarrhoea (loose, watery poo).
Some drugs, including painkillers, can cause constipation so you may be told to eat more fibre (such as wholemeal and wholegrain breads, cereals and pasta) to help with this. You might also find that certain foods or drinks (such as alcohol) produce more wind from your stoma than others. Some foods are also harder to process (such as apple peels or nuts). It might help to keep a food diary to look for patterns and symptoms so that you can work out the best balance of food and drink for you.
Our support line provides confidential information, support and signposting for anyone affected by ovarian cancer.
Colostomy UK provides support, information, reassurance and practical advice to anyone who has or is about to have stoma surgery in the UK. They also have a 24-hour stoma support line, which offers experienced-based support from volunteers, and a closed Facebook group.