Having a stoma
A stoma is a surgically created opening in the abdomen that allows faeces to leave the body. The end of the bowel is brought out through the opening and stitched onto the skin. Some people need a stoma after bowel surgery.
Types of stoma
The two types of stoma are a colostomy (made from the colon in the large bowel) and an ileostomy (made from the ileum in the small bowel). A stoma may be temporary or permanent.
A temporary stoma is needed only until the newly joined bowel has healed. In this situation, a loop stoma is often used. A loop of the bowel is brought out, and then opened and stitched to the skin. This creates two openings. If you have a temporary stoma, you will have another operation, usually after 3–12 months, to close the stoma and rejoin the bowel. This is called a stoma reversal. The process for reversing the stoma will depend on the type of stoma you have. Less than 10% of people with bowel cancer need a permanent stoma.
Like the inside of the mouth, a stoma is soft, moist, and red or pink in colour. It may be level with the surrounding skin or slightly raised. The stoma itself doesn’t have any feeling, but the skin around it does.
Stomas vary in size and can change shape during the weeks after surgery. A stomal therapy nurse (see below) will usually see you before any surgery which may result in a stoma. They will also see you after your operation to teach you how to look after the stoma and give you advice about any changes to your stoma or the skin around it.
How the stoma works
When the bowel moves, wind and waste matter (faeces, stools or poo) come out through the stoma. You cannot control when this happens, but a small disposable bag is worn on the outside of the body to collect the waste. This is called a stoma bag or an appliance. Stoma bags have adhesive on the back so they stick firmly to the skin and provide a leak-proof, odour-proof system. A filter lets out any wind (but not the odour), which should stop the wind inflating the bag. The bag usually can’t be seen under clothing.
Attaching the bag
A stomal therapy nurse will help you choose an appliance that suits your body shape and the stoma, and will explain how to attach it securely.
Emptying the bag
Stoma bags can be drainable (able to be emptied) or closed (discarded after each bowel movement). With an ileostomy, you wear a drainable bag because the waste matter tends to be watery or soft. With a colostomy, the bag may be drainable or closed, depending on the consistency of your waste matter. A drainable bag has to be emptied down the toilet when it is about one-third full. A closed bag should be put in a rubbish bin after each bowel movement (not flushed down the toilet).
Some people don’t like to wear stoma bags. If you have a colostomy in your descending colon, you may be able to learn how to give yourself a type of enema (colostomy irrigation) to remove the waste every day or two. Talk to your doctor and stomal therapy nurse about this option.
Living with a stoma
Having a stoma, even temporarily, is a big change in a person’s life and takes some getting used to. However, thousands of Australians have a stoma and most lead a relatively normal life.
The stoma may sometimes affect your travel plans, social life and sexual relationships, but these issues can be managed, especially with some planning. Unless your job or hobbies are particularly strenuous, you should still be able to participate in your usual activities.
You may worry about how you will look. Although the stoma bag may seem obvious to you, most people won’t notice anything is different unless you tell them. The stoma’s location may make some clothes less comfortable (e.g. tight waistbands or belts), but you will generally be able to continue wearing your normal clothes. You might consider buying underwear designed for people with a stoma.
Many people with a stoma worry that the stoma will affect their ability to give or receive sexual pleasure. In women, if the rectum is removed, there may be a different feeling in the vagina during intercourse. It may be uncomfortable, as the rectum no longer cushions the vagina. In men, creating a stoma usually involves removing part or all of at least one organ in the pelvic area. This may affect the nerves controlling erections.
For people with a stoma, some foods can cause blockages. This means solids, fluids and gas can’t move through as they normally would. To help the stoma settle and to avoid blockages, you may need to make some dietary changes. Over time, most people find they can eat a normal healthy diet.
A stoma blockage can be uncomfortable and cause a bloated feeling or nausea. If you experience symptoms of a blockage for more than two hours or you start vomiting, contact your nurse or hospital. For tips on avoiding blockages, see managing bowel and dietary changes.
Support for people with a stoma
See a stomal therapy nurse
If there is a chance you could need a stoma, the surgeon will probably refer you to a stomal therapy nurse before surgery. Stomal therapy nurses are registered nurses with special training in stoma care. They can talk to you about the best place for the stoma to be located, answer questions about your surgery and recovery, and give you information about adjusting to life with a stoma. For more details, visit the Australian Association of Stomal Therapy Nurses at stomaltherapy.com or call Cancer Council 13 11 20.
Join a stoma association
With your consent, the stomal therapy nurse will sign you up to a stoma association. For a small annual membership fee, you will be able to obtain free stoma appliances and products. Stoma associations also provide assistance and information to members and coordinate support groups for people of all ages. The Australian Council of Stoma Associations represents stoma associations across Australia. Go to australianstoma.com.au.
Register for the Stoma Appliance Scheme
The Australian Government’s Stoma Appliance Scheme (SAS) provides free stoma supplies to people with a temporary or permanent stoma. To apply for the SAS, you must hold a Medicare card and belong to a stoma association.
The first sign of the bowel cancer was that I had a little bit of bleeding when I went to the toilet. I thought it might be polyps, but when it became more frequent and heavy, I decided to go to the GP.
My GP put me onto a specialist who used a little camera to have a look inside when I went to have a colonoscopy a week later. Right away, my doctor showed me a picture of a large tumour in my lower bowel.
The cancer was aggressive, so my medical team wanted to start treating it right away. They recommended a short course of radiation therapy followed by an operation.
I had a week of intense radiation therapy. I experienced some nausea, so I’d have to take some medicine for that about an hour afterwards. The treatment also caused some stomach upset. Before the operation, I saw a stoma nurse who talked to me about what to expect.
The surgeon planned to make a temporary stoma, but halfway through the operation, he saw that the tumour was all the way down the bowel and he had to make a permanent one.
I’m used to the colostomy now, but I have my up and down days. I feel self-conscious sometimes because I think the bag is noticeable under most fitted men’s clothing. Other people say it’s not noticeable, but I don’t wear the same things I used to.
I have learnt to live with the stoma. It took some time, but I worked out which foods went through easily.
Having a colostomy hasn’t stopped me travelling – I’ve been able to holiday in Bali a couple of times.