Living with an ostomy
An ostomy is a surgical procedure to create an opening from an area inside the body to the outside. The opening created by ostomy surgery is called a stoma. People with cancer may need an ostomy if an opening or passage in the body is blocked by a tumour or changed by cancer treatment.
Types of ostomies
Different types of ostomies may be needed for different types of cancer.
A tracheostomy makes a stoma into the trachea (windpipe) through the front of the neck. It is used to help a person breathe. A tracheostomy tube (trach tube) is placed through the stoma to create a new path for air to reach the lungs.
Some people may need a tracheostomy to help them breathe during or after surgery. Others may need a tracheostomy if part of the trachea is blocked by a tumour or removed during treatment.
Find out more about living with a tracheostomy.
A colostomy brings part of the colon (large bowel) out through a stoma in the abdominal wall. Stool and gas pass out of the body through the stoma. A pouch that collects the stool is placed over the stoma and stuck to the abdomen.
A colostomy can be temporary or permanent. If it is permanent, the rectum and anus may be removed or left in place, depending on the surgery. In both cases, the area is stitched closed and no longer passes stool or gas.
If the colostomy is temporary, the rectum and anus are not removed. Once the colostomy is no longer needed, the colon is reattached to the rectum and the stoma is closed.
An ileostomy brings part of the ileum (the last part of the small intestine) out through a stoma in the abdominal wall. Stool and gas pass out of the body through the stoma. A pouch that collects the stool is placed over the stoma and stuck to the abdomen. It is common to pass some mucous and drainage from the anus.
A urostomy makes a stoma in the abdominal wall and redirects urine when the bladder is bypassed or removed. A piece of the ileum is often used to create the passageway. The ureters, which carry urine from the kidneys to the bladder, are attached to the passageway. Urine passes out of the body through the stoma. A pouch that collects the urine is placed over the stoma and stuck to the abdomen.
Gastrostomy or jejunostomy
A gastrostomy makes a stoma into the stomach through the abdominal wall. A jejunostomy makes a stoma into the jejunum (the middle part of the small intestine) through the abdominal wall.
A tube is placed into the stomach or jejunum through the stoma. The tube can be used to give liquid nutrition when cancer or its treatment makes it hard to eat or drink. Giving liquid nutrition through a gastrostomy or jejunostomy tube is called tube feeding.
Find out more about tube feeding.
The stoma for a colostomy, ileostomy and urostomy is round or oval. It is red and moist and often sticks out a little from the skin. It can bleed easily when it is cleaned because there are many tiny blood vessels close to the surface. It doesn’t hurt because it doesn’t have nerve endings. The stoma is slightly swollen after surgery but gets smaller after a few weeks.
Caring for an ostomy
Specially trained nurses will teach you and your family how to care for and live with your ostomy. These nurses are called wound, ostomy and continence (WOC) nurses. They may be part of an association called Nurses Specialized in Wound Ostomy and Continence Canada (NSWOCC).
If you have a colostomy, ileostomy or urostomy, a pouching system is used to collect stool or urine from the stoma. The system may have 1 or 2 pieces. They can also be closed-end or drainable.
Pouches are odour-proof even if they are full of urine or stool. There are many different pouch options to try. The pouch can’t be seen under your clothing.
A WOC nurse will help you find the system that suits your needs. They will teach you how and when to empty or change the pouch, depending on the type of stoma you have and your stool or urine output. On average, drainable pouching systems are changed twice a week. Closed-end systems are usually changed daily. It is important to change pouching systems before they leak. Don’t use tape to patch a leak because it can lead to skin problems around the stoma.
Your WOC nurse will teach you about cleaning the stoma and the skin around the stoma. Use only warm water and a soft cloth to clean the skin and stoma. Don’t use soap, alcohol or baby wipes because they can irritate the skin.
Showering or bathing
Your WOC nurse will teach you about showering and bathing with a stoma.
If you have a colostomy, ileostomy or urostomy, you can shower or take a bath with the pouching system on or off. The water from the bath or shower will not loosen the pouching system. The pouching system will not fall off if it gets wet. You don’t need to cover the pouching system in plastic to protect it from the water. If you have a tracheostomy, you can bathe or shower as long as the stoma is covered.
You don’t need to change your diet if you have a urostomy. You might notice that some foods and medicines change how your urine looks and smells.
You may have to make some changes to your diet if you have a colostomy or ileostomy. Talk to a dietitian about your diet. They can suggest foods to eat and help you maintain proper nutrition.
Adjusting to daily life
Talk to your WOC nurse or healthcare team about questions and concerns you have about returning to your daily life after ostomy surgery. They can help you adjust and manage your stoma during your usual activities.
Pouching systems are designed to lie flat against your body, so you should be able to wear the same clothing you did before surgery. You can also choose to buy clothes that are specially designed for an ostomy, including underwear and swimsuits.
An ostomy doesn’t get in the way of most physical activities. Don’t do heavy lifting for 3 months after your surgery to allow your abdominal muscles and incision (surgical cut) to heal. A physiotherapist can help you safely strengthen your abdominal muscles. They can also help you return to your usual activities over time.
You can go back to work once you recover from ostomy surgery. Some people with an ostomy may not be able to do jobs that require heavy lifting. Talk to your WOC nurse or healthcare team if you have questions or concerns about returning to work after surgery.
You can travel as you usually would after you have ostomy surgery. Travelling by airplane doesn’t affect the pouch because the cabins are pressurized. It is a good idea to travel with about twice as many supplies as you would normally use at home. Carry the supplies with you – don’t check them in with your luggage. You may also want to know where to contact a local WOC nurse during your travels.
Sex and intimacy
You can have strong, supportive relationships and a satisfying sex life after ostomy surgery. Talk to your WOC nurse, a counsellor or other people who have an ostomy if you or your partner have questions or concerns about sex and intimacy.
To find out more about intimacy after ostomy surgery, see the information published by the Ostomy Canada Society.
Emotional and mental adjustment
People who have ostomy surgery cope with both physical and psychological changes. They need to adjust to changes in their bladder and bowel function or breathing and speaking.
You may have a pouch to collect urine or stool on your abdomen or a visible trach tube. Body functions are usually private topics, so you might not feel comfortable talking about them openly. This can make you feel like you are the only one with an ostomy. But many people in Canada are living with an ostomy. Doctors, hairdressers, teachers, police officers and other people in your community may have an ostomy and you would not know.
Talk to your WOC nurse to find out more about resources in your community that can help you adjust to the emotional and mental changes that come with an ostomy. They can also tell you about support groups with trained volunteers who have been through what you are going through.
The longest part of the large intestine that receives almost completely digested food from the cecum (the first part of the large intestine), absorbs water and nutrients and passes waste (stool or feces) to the rectum.
The colon is made up of 4 parts. The ascending colon starts at the cecum and goes up the right side of the abdomen. The transverse colon goes across the upper abdomen. The descending colon goes down the left side of the abdomen. The sigmoid colon is the last part of the colon that connects the descending colon to the rectum.
Sometimes called the lower intestine or large bowel.
The long, tube-shaped organ in the abdomen that receives partially digested food from the stomach, absorbs nutrients and passes digested food to the large intestine.
The small intestine is the first part of the intestine. It is made up of the duodenum, jejunum and ileum.
Also called the small bowel.
Now I know that I will help someone with cancer even after I’m gone. It’s a footprint I want to leave behind me.
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