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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 a normal opening or passage in the body is blocked by a tumour or changed by cancer treatment.
Different types of ostomies may be needed for different types of cancer.
A tracheostomy makes an opening in the trachea, or windpipe, through the front of the neck. It is used to help a person breathe easier. A tube, called tracheostomy tube or trach tube, is placed through the opening, or stoma, to create a new path for air to reach the lungs.
Some people may need a tracheostomy to help them breath during or after surgery. Others may need a tracheostomy if a tumour blocks, or cancer treatment removes, part of the trachea.
Find out more about living with a tracheostomy.
Gastrostomy or jejunostomy
A gastrostomy makes an opening, or stoma, into the stomach through the abdominal wall. A jejunostomy makes an opening into the jejunum, or the middle part of the small intestine, through the abdominal wall.
The doctor can place a tube into the stomach or jejunum through the opening in the abdominal wall. This tube can be used to give liquid nutrition when cancer or its treatment makes it difficult to eat or drink. Giving liquid nutrition through a gastrostomy or jejunostomy tube is called tube feeding.
Find out more about tube feeding.
During a colostomy, the doctor brings part of the coloncolonThe 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. (also called the large bowel) out through an opening, or stoma, in the abdominal wall. A colostomy can be temporary or permanent. If it is permanent, the rectum and anus are removed and that area is stitched closed. 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.
After colostomy surgery, 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. This pouch is odour-proof and usually can’t be seen under your clothes.
During an ileostomy, the doctor brings part of the ileum (the last part of the small intestine) out through an opening, or 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. This pouch is odour-proof and usually can’t be seen under your clothes.
Colorectal cancer is often treated with a loop ileostomy. The surgeon brings a loop of the ileum out through the abdominal wall and creates a stoma with 2 openings. Stool passes through one opening and mucus passes through the other. A loop ileostomy is done so the intestines can heal where the surgeon removed the cancer or if you need more cancer treatment.
After a loop ileostomy, it is natural to feel like you should have a bowel movement through the anus. But stool will only pass through the loop ileostomy stoma and into the pouch.
The urinary tract includes the kidney, ureters, bladder and urethra. The ureters are tubes that carry urine from the kidneys to the bladder. The bladder stores urine and passes it from the body through the urethra.
A urostomy is a type of urinary diversion. This surgery is used when the bladder is bypassed or removed because of cancer or other diseases. The most common type of urostomy is an ileal conduit. The surgeon removes a piece of the ileum (the first part of the small intestine) and uses it to create a passageway, or conduit. The ureters are attached to the conduit (the piece of ileum). Then the surgeon brings the conduit out through an opening, or stoma, in the abdominal wall. A pouch that collects urine is placed over the stoma and stuck to the abdomen. This pouch is odour-proof and usually can’t be seen under your clothes.
The stoma is the opening on the outside of the body created during ostomy surgery. The stoma:
- is round or oval
- is red and moist like the inside of the mouth
- often sticks out a little above the skin surface
- doesn’t hurt because it doesn’t have nerve endings
- can bleed easily because there are many tiny blood vessels close to the surface
- may release some mucus
- will be slightly swollen just after surgery but will get smaller after about 6 weeks
Specially trained registered nurses will teach you and your family how to care for and live with your ostomy. These nurses are called enterostomal therapy (ET) or wound, ostomy, continence (WOC) nurses.
If you have a colostomy, ileostomy or urostomy, a pouching system is used to collect stool or urine from the stoma. They may be 1- or 2-piece systems. They can also be closed-end or drainable.
Pouches are odour-proof even if full of urine or stool. You can’t see the urine or stool in the bag because it is opaque or covered with cloth. The pouch can’t be seen under your clothing.
Different manufacturers make different pouching systems. You can buy pouching systems and ostomy supplies at drugstores or medical supply stores. Prices vary, but your provincial, territorial or private healthcare plan may cover some or all of the costs.
Changing the pouching system
Your ET/WOC nurse will teach you how and when to empty or change the pouch. When you need to change your pouching system will depend on the type of ostomy stoma you have and your stool or urine output. On average, drainable pouching systems are changed every 4 days. 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.
Use only warm water and a soft cloth or paper towel to clean the skin and stoma. Don’t use soap, alcohol or baby wipes because they can irritate the skin.
Showering or bathing
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.
Talk to a dietitian about your diet and how to maintain proper nutrition with an ostomy stoma. They can help you with any concerns you have.
You don’t need to change your diet if you have a urostomy stoma. You might notice that some foods and medicines change how your urine looks and smells.
Talk to your doctor about any foods you should avoid. Most people can slowly return to their normal diet (usually within 3 months). Chewing your food thoroughly will help your intestines break it down so it can easily pass through the digestive tract and the colostomy stoma.
Talk to your doctor about any foods you should avoid. Most people can slowly return to their normal diet (usually within 3 months). Chewing your food thoroughly will help your intestines break it down so it can easily pass through the digestive tract and the ileostomy stoma.
When you have an ileostomy stoma, you need to be careful with stringy, fibrous foods that are not easy to digest such as corn, nuts, cabbage and coconut. If you aren’t sure about a food, try eating a small amount, chewing it well, to see how your body tolerates and digests it.
Talk to your ET/WOC nurse or healthcare team about any concerns you have about returning to your activities of daily living. They can help you adjust and manage your ostomy stoma during your normal activities.
Today’s pouching systems are designed to lie flat against your body so you should be able to wear the same clothing you did before surgery. If you want to, you can buy clothes that are specially designed for an ostomy, including underwear or swimsuits.
An ostomy doesn’t get in the way of normal physical activities. Your healthcare team will tell you to slowly resume your normal activities over time.
Don’t do heavy lifting for a few weeks after your surgery to allow your abdominal muscles and incision, or surgical cut, to heal. Lifting something the wrong way or lifting heavy things can cause a hernia around the stoma. A hernia is when the large intestine or other organs stick out through a weak spot in the abdominal muscles. Talk to a physiotherapist if you have questions or concerns about how to safely strengthen your abdominal muscles.
You can do a variety of activities with an ostomy, such as running, swimming, biking, yoga, hiking, martial arts and other sports. Talk to your healthcare team before starting strenuous physical activities again.
Once you recover from ostomy surgery, you can go back to work. Some people with an ostomy may not be able to do jobs that require heavy lifting. Talk to your surgeon or ET/WOC nurse if you have questions or concerns about returning to work after your ostomy 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 take along about twice as many supplies as you would normally use at home. Carry these supplies with you. Don’t check them in with your luggage.
Ostomy supplies should be stored in a cool, dry place. You can call your ostomy product manufacturer to find out where you can get any supplies you need while you are away from home. You may also want to know where to contact a local ET/WOC nurse during your travels.
Sexuality and intimacy
You can have strong, supportive relationships and a satisfying sex life after ostomy surgery. Some ostomy surgeries can change sexual function, but you can adapt to these changes.
Talk to your ET/WOC nurse, other people who have an ostomy or a professional counsellor if you or your partner has questions or concerns about sex and intimacy. To find out more about intimacy after ostomy surgery, see the guide published by the United Ostomy Associations of America.
People who have ostomy surgery cope with both physical and psychological changes. They need to adjust to changes in their bladder and bowel function, which they have been controlling since they were 2 years old. Having a pouch to collect urine or stool on your abdomen is a big change to your body image. Bodily functions, urine and stool are usually private topics, so you might not feel comfortable talking about them openly. This can lead to the feeling that you are the only one with an ostomy.
In Canada, more than 60,000 people live with an ostomy. Neighbours, doctors, hairdressers, teachers, police officers and many other people in your community may have an ostomy and you would not know. You can’t see their pouch and they fully participate in life.
Talk to your ET/WOC nurse to find out more about resources in your community that can help you adjust to emotional and mental changes that come with an ostomy. Your ET/WOC nurse can also tell you about support groups that have trained volunteers who have been through what you are going through and can give you helpful hints.
Local or national ostomy groups and associations give support and information to help you and your family adjust to life with an ostomy. Ask your ET/WOC nurse for more information about these groups.
Great progress has been made
Some cancers, such as thyroid and testicular, have survival rates of over 90%. Other cancers, such as pancreatic, brain and esophageal, continue to have very low survival rates.