This guide provides helpful information to assist you in learning to live with a colostomy. It is normal to feel apprehensive about having a colostomy. Every year, many men, women and children have colostomy surgery and most resume their previous lifestyles following surgery. Resource people are available to assist you and your family as you prepare for and recover from surgery. These resource people can answer questions and address concerns that you may have. One of the resource people is an Enterostomal Therapy Nurse (ET Nurse), who specializes in the care of people with ostomies. The United Ostomy Association of Canada (UOAC) is a support group for people who have colostomies as well as other kinds of ostomies. The Association can also provide both information and volunteer visitors who have experienced similar surgery. A local chapter may be near you. As you read this information, make notes where you have questions or would like to discuss something further.
The digestive tract consists of the mouth, esophagus, stomach, small intestine, colon (large bowel), rectum and anus (Diagram #1). The process of digestion takes place over several hours and begins in the mouth where enzymes in the saliva start breaking down food as it is chewed. The food passes through the esophagus into the stomach. In the stomach, food is churned and mixed with gastric juices. The food slowly passes from the stomach into the small intestine. The small intestine consists of three sections: duodenum, jejunum and ileum and is approximately 6 meters (20 feet) in length. Digestion and absorption of nutrients from ingested food takes place in the small intestine; this process is almost complete before waste products pass into the colon. The colon is approximately 2 meters (6 feet) long and ends in the rectum. The colon absorbs water and salts; and the rectum stores waste products (stool). When the stool moves into the rectum, reflexes occur and a person receives a signal in the brain for the urge to have a bowel movement.
A colostomy is a surgically created opening into the colon, diverting stool from its normal route. Medical conditions that may require bypassing or removing part of the colon include: diverticulitis, cancer, trauma, inflammatory bowel disease, or birth defects. A colostomy may be temporary or permanent, depending upon the reason for surgery.
The type of stool from a colostomy varies depending where in the colon the colostomy is created. A colostomy created toward the right (ascending) side of the colon will have looser, more frequent stools. A colostomy created toward the left (descending) side of the colon will usually have more formed, less frequent stools.
The visible part of a colostomy is called a stoma. The location of the stoma on the abdomen varies; depending where in the colon the colostomy is created. To create the stoma, the surgeon brings the colon to the outside of the abdomen, turns it back on itself like the cuff of a sleeve and sews it to the skin. As a result the visible part or stoma, on the abdomen is the inner lining of the colon.
The stoma is soft, moist and pinkish – red in colour, similar to the tissue inside the mouth. Immediately following surgery the stoma is usually swollen and larger than it will be after healing takes place. The size of a stoma varies depending upon the individual and the nature of the surgery. The stoma may bleed slightly when touched since many tiny blood vessels are very close to the surface. There is no feeling in the stoma; it does not hurt when touched or when stool and gas are passed. You cannot control the movement of stool and gas through the stoma; therefore, a pouching system must be worn at all times.
An end colostomy is usually located in the lower left colon (sigmoid). If the anus, rectum and part of the lower colon have been removed, this type of colostomy is permanent (Diagram #2).
End Colostomy With a Mucous Fistula
If the anus, rectum and a portion of the lower colon have not been removed, two stomas may be created. One stoma leads to the functioning part of the colon through which stool and gas pass. The second stoma opens into the non-functioning portion of the colon and rectum and is called a mucous fistula (Diagram #3). The second stoma is usually small, flat, pinkish – red in colour, moist and produces only mucus. When the rectum remains in place, the urge to have a bowel movement may occur, but only mucus and possibly some old stool, if present, will be passed.
End Colostomy With a Rectal Stump
Sometimes the end of the lower non-functioning part of the colon and the rectum is stapled or sewn closed and left inside the abdomen. This piece of bowel left inside is called a rectal stump (Diagram #4). If the colostomy is temporary, once healing from the first surgery is complete, a second surgery is required to reconnect the two ends of the bowel.
A loop colostomy is most commonly created if the colon is blocked. This type of colostomy is also used to divert stool from a diseased, injured or healing colon. The stoma site is usually located high on the abdomen above the waistline. If the colon was blocked, the stoma may be very large immediately after surgery but usually shrinks as the blockage is relieved and healing occurs. A loop colostomy may be temporary or permanent and has two openings. One opening leads to the functioning part of the colon through which stool and gas pass. The second opening leads to the non-functioning part of the colon and allows mucus and old stool, if present, to pass from the rectum through the anus (Diagram #5).
A pouching system/appliance is made for containing stool, odour and gas and to protect the skin around the stoma. A wide variety of pouching systems is available to meet individual needs (Diagram #6). The nurse or ET nurse will show you pouch samples prior to or after your surgery. Your preferences and lifestyle are important considerations in pouch selection. Sometimes more than one pouching system is tried before a person decides which pouch is most comfortable and best meets their needs.
Pouching systems are…
They may be…
Length of wear time varies, depending on individual needs and type of pouching system. The pouching system needs to be kept clean and free of leaks. The stoma usually shrinks for approximately 6 to 8 weeks following surgery. It is important to measure the stoma each time you change your appliance and to use the appropriate size. You need guidance in selecting the pouching system that is best for you. Enterostomal Therapy nursing services are available in most major cities in Canada to provide this guidance. If ET nursing services are not available in your hospital or community, ask your doctor or nurse where you can find further information, or see the Resource List. Canadian provinces may have health care plans to help offset the cost of ostomy appliances/pouching systems. Specific information can be obtained from your surgeon, ET nurse, medical/surgical supplier, pharmacist or social services.
If your surgery has been planned, you may be seen in a pre-admission clinic where you will receive pre-operative teaching and a medical assessment. You may find it helpful to ask a relative or friend to accompany you to ask questions or take notes. You will meet a variety of health care providers who may include: doctors, nurses, dietician, anaesthetist and ET nurse. These professionals discuss different aspects of your operation and answer your questions and address your concerns. You will be given specific information about your surgery, bowel preparation and pre-operative diet. Preparation for surgery may include: x-rays, blood tests, urine test, electrocardiogram (ECG), medications and complete cleansing of the bowel. The bowel needs to be empty before surgery can be performed; this also decreases the risk of infection. Bowel preparation includes taking laxatives, following a clear fluid diet and possibly taking antibiotics. It is important to drink extra water at this time to replace the fluids being lost during bowel cleansing. You will be given instructions about fasting. It is important that either an ET Nurse or your surgeon examine your abdomen before surgery and select the best location for your stoma. This decision is made with your input. The site is chosen and marked taking into consideration your lifestyle, clothing and specific needs. Every effort is made to situate the stoma in the best possible location. Sites vary depending upon the circumstances and anatomy of each person. If your surgery was an emergency, some of the steps of preparation may have been omitted.
Immediately after surgery, members of the health care team look after your physical needs. Medication is given to relieve post-operative pain. You are guided and encouraged to do deep breathing exercises. You are assisted to move and walk usually within the first 24 hours. All of this helps speed your recovery from surgery.
You will have…
You may have…
If your rectum and anus were removed, you will have an incision where the anus was located (perineal incision). This incision is covered with a dressing and a drainage tube may be placed in this area. In the operating room after surgery, a pouching system is applied over the stoma. Nurses check the condition of your stoma and ensure the pouching system is intact. Your colostomy will probably not function for a few days after your surgery. At first, you may have abdominal cramps and then gas starts passing through the stoma. Passing gas is a sign your bowel is beginning to work. In the beginning you may have a large amount of noisy gas, which may be followed by loose stool. As you return to your usual diet the gas will probably become less noisy and the stool should become more formed.
If the anus and rectum have not been removed, the urge to have a bowel movement may be felt. Mucus or old stool, if present, may be passed from the rectum.
As you gradually recover from surgery, you begin to take part in the care of your colostomy. You probably will be taught the care of your colostomy while in hospital. It is important you become as independent and comfortable as possible with the care and management of your stoma. With time and practice as you recover from surgery, you develop confidence and the care becomes routine. Support and understanding from family and friends are very helpful during your recovery. If you wish, a family member may be included in the teaching sessions so they can become familiar with your needs. Never hesitate to ask questions. After discharge, home care nursing support and ET nursing services may be available in your community to assist you until you are feeling confident and independent with your care.
Prior to discharge from hospital, you may have your colostomy supplies ordered for you or you may be given the name(s) of a pharmacy or medical/surgical (ostomy) supply store where you can purchase your ostomy supplies. You need at least one extra pouching system when you leave the hospital and a list of supplies required for your ostomy care. It is preferable to have your supplies delivered to you in the hospital before discharge, ensuring you have the correct pouching system.
A follow-up appointment with your surgeon should be arranged prior to your discharge. If you have received care from an ET nurse while in the hospital, it is important to receive follow-up care and maintain contact, if possible. If you have not seen an ET nurse while in hospital, ask your surgeon if ET nurses are available in your community or contact the Canadian Association for Enterostomal Therapy (CAET) listed in the Resource List below.
Following surgery, it is normal to have concerns about your altered body appearance and the altered elimination process. It takes time to adjust to the changes in your body. Each “new” experience you master helps you feel more comfortable and confident. It may be helpful to tell those closest to you how you feel. However, not everyone needs to know you have an ostomy. It is your decision about whom you wish to tell. If you feel you need help adjusting to living with a colostomy, discuss your concerns with your surgeon, family doctor and/or ET nurse.
Discussion with a visitor from the United Ostomy Association of Canada (UOAC) who has experienced similar surgery as you is helpful for many people. Inquire from your doctor or ET nurse if a local chapter and visitor are available in your area. When you are away from home, it is advisable to carry a spare pouch and changing equipment in a purse or pocket or briefcase.
Some people with a colostomy in the descending or sigmoid part of the colon (Diagram #1) may choose to manage their colostomy output by irrigation. Irrigation is similar to an enema. Water is put into the bowel through the stoma to regulate stool passage from the colon. This method of colostomy management is optional and may be inappropriate and contraindicated for some people. Consult with your surgeon. An ET nurse should instruct you in the correct technique and necessary supplies.
Your surgeon will advise you when you can return to work determined by the progress of your recovery, reason for surgery and your type of employment. Keeping extra supplies at your workplace is a wise idea in case an unexpected pouch change is needed.
The activities you enjoyed before surgery can usually be resumed after recovering from your operation. Avoid strenuous activities such as lifting, vacuuming or golfing for at least 6 to 8 weeks. Your surgeon will advise you when you can return to your activities. Swimming, hot tubbing and saunas may be resumed once your incision(s) heals completely. Prolonged exposure to water may cause the adhesive seal to loosen your pouching system.
Applying surgical tape around the four sides of the adhesive seal of your pouch (i.e. like a picture frame) may help protect the seal. Smaller pouching systems are available and may be an option for wear during some activities.
Some swimwear have patterns and various panels that may help to conceal the pouch. You may find a selection at retail outlets and at some medical/surgical (ostomy) supply stores. Boxer trunks for men are an option.
Your pouching system may be left on or removed when you bathe or shower. Showering with your pouching system off is a good way to cleanse the skin. Direct the forceful water stream away from the stoma. Soap and water will not injure or enter your colostomy, but stool may be expelled. With time, you probably will be able to predict the time of day when your colostomy is least likely to function and you can bathe or shower at that time.
Avoid using bath oils and lotions on the skin around your stoma because they may prevent your pouching system from adhering. If you use a two-piece pouching system and choose to wear it when bathing or showering, keep the pouch secure to the wafer. This may prevent the water from loosening the adhesive seal. Remember to thoroughly dry both sides of the pouch to avoid skin irritation from moisture.
Meticulous skin care around the stoma is important. The skin around the stoma should be free of redness and/or irritation and look like the skin on the rest of your abdomen. Check your skin and stoma each time you change your pouching system. Cleanse the skin around the stoma with warm water. It is not necessary to use soap; however, if you choose to, use a mild non-perfumed soap and rinse your skin well with warm water. The skin should be wiped gently and thoroughly dried. Adhesive residue remaining on the skin from your pouching system/appliance should be removed preferably with an ostomy adhesive remover. Use warm water to cleanse the remover from the skin as the remover may interfere with pouch adherence. If you cleanse the stoma, a small amount of bleeding from the stoma is normal. Consult with an ET nurse before using creams or lotions because these products can interfere with the pouching system adhesive. Hair on the skin around the stoma can be carefully removed by trimming with scissors or electric clippers. Wet electric shavers for use in the shower are an option. Commercial hair removal products should never be used. Use of a razor may cause skin irritation for some people. Discuss concerns or questions with an ET nurse.
Skin irritation can be caused by:
If you experience skin irritation and it does not quickly resolve, contact an ET nurse or your doctor for assistance.
If you have a mucous fistula, it requires similar care as the stoma. The frequency of cleansing will depend upon the amount of discharge. Usually a non-sterile, light dressing is sufficient covering. If you have a perineal incision, keep this area clean and dry to promote healing.
Pouching systems are lightweight, discreet and low profile (not noticeable through clothing). Your pouch will probably not be visible when worn beneath undergarments and emptied when 1/3 full. Minor adjustments in clothing may be required for comfort.
These adjustments may include…
Weight gain and weight loss can create new creases in the skin around the stoma. If this creates a problem with appliance management, contact an ET nurse for advice.
Yes, you can travel; this may require some extra planning. Potential problems may be avoided by the following suggestions…
Following surgery, it is normal to have concerns about your altered body appearance and altered elimination function. People may have concerns about the effect the colostomy may have on sexual relationships. Concerns should be discussed with your partner, surgeon, family doctor and/or ET nurse. Open discussion with your partner will help you understand each other’s feelings and help in your adjustment. Sexual relations may be resumed when approved by your surgeon and when you feel physically and emotionally ready. It takes time to adjust to the changes in your body. If the rectum has been removed, depending upon the reason, there may be some degree of sexual impairment due to possible nerve damage in the perineal area. This damage, if present, may be temporary or permanent. Discuss concerns you may have with your surgeon.
The following suggestions may help when you are involved in an intimate relationship…
Most medications can be taken safely following colostomy surgery. Most medications are absorbed in the stomach and small intestine. Certain medications can affect the odour, colour, and consistency of stool. Inform your doctor and pharmacist about your colostomy before taking a new medication and discuss concerns with them.
Regular use of pain medication can cause severe constipation. If you experience constipation, consult with your doctor or ET nurse for preventative treatment with stool softeners and laxatives.
At all times carry a list of all the medications you take. A blank medication record can be obtained from some pharmacies.
The diet of a person who has a colostomy usually requires very little or no change. You should be able to eat the same foods you ate before surgery. A special diet is not required unless you have restrictions for another medical condition.
Following any type of bowel surgery, there is a gradual progression in diet from clear fluids (e.g. juice, broth, Jell-O), to full fluids (e.g. milk, ice cream, cream soup), to a light diet (solid food that is low in spices and fibre), to a regular healthy diet based on Canada’s Food Guide for Healthy Eating.
A regular diet should include a variety of foods from the following food groups:
Everyone differs in the foods they tolerate. Foods that caused you constipation, diarrhea or gas before surgery will probably continue to do so after your surgery. Experiment with a variety of foods. Try one new food at a time so you can identify the foods that may cause difficulty. Give foods a second and third chance before eliminating them from your diet. You may find that in a couple of weeks you tolerate foods that previously bothered you.
The following guidelines can assist you controlling some conditions commonly experienced by people. If any of these conditions persist, contact your doctor or ET nurse for assistance and guidance. A visit with a dietician may be helpful to assist you with dietary concerns and/or management. Ask your doctor or ET nurse for a referral to a dietician.
To help decrease gas formation…
Foods that may promote odour…
If you have problems with food-related odours, you may wish to limit your intake of these foods or eat them at times when you are less likely to be concerned about odour. Foods that can be included in your diet to help control odour are parsley, yogourt and buttermilk. Pouch deodorants are available. Also special tablets may be taken by mouth that may help reduce odour. If odour is a concern consult with a dietician, ET nurse or your doctor for suggestions.
Foods that may promote diarrhea…
Limiting intake of these foods may reduce diarrhea. Including cheese or buttermilk in your diet may also help decrease diarrhea. Try drinking fluids half an hour after meals, rather than with meals.
The causes of constipation are varied and may include the following: decreased activity, low fibre diet, inadequate fluid intake and certain medications. Suggestions that may help prevent constipation are…
After your surgery, you usually have follow-up visits at the hospital or at your surgeon’s clinic. When you go for your follow-up visit…
Wearing a Medic Alert® bracelet informs health care professionals of your colostomy in case of an emergency. Discuss with an ET nurse or your doctor the information to include on the Medic Alert® identification. Application forms are available at many pharmacies across Canada. Medic Alert® identification is also available for wristwatches.
Anaesthetist: A medical doctor who specializes in giving medication to put people to sleep so surgery can be performed.
Bowel: Also called intestine and colon. It is the part of the digestive tract that lies between the stomach and the anus. There are two parts, the small intestine and the colon (large bowel). Often these words are used interchangeably.
Diverticulitis: A diverticulum is an abnormal little sac or pouch that may occur in the lining of any hollow organ of the body. In the colon (large bowel), these may become inflamed and cause diverticulitis, a condition that may require surgery.
Electrocardiogram (ECG): A test to evaluate the heart action.
Enzymes: Substances in the mouth, stomach and small intestine that cause the breakdown of food. Enzymes can also irritate the skin if stool, which contains enzymes, remains on the skin. nflammatory Bowel Disease:
Inflammation of the bowel. Symptoms vary, depending on the area of the bowel affected and the degree of
inflammation. This refers to both ulcerative colitis and Crohn’s disease.
Ostomy: A surgically created opening into the digestive or urinary system, diverting stool or urine from its normal route. Sometimes the word ostomy is used as a shortened version for the word colostomy.
Perineal: The area located between the genitals and the anus (rectum).
Stoma: The part of the bowel that is seen outside of the body on the abdomen following ostomy surgery.
Trauma: Injury or damage (e.g. car accident).
Canadian Association for Enterostomal Therapy (CAET)
P.O. Box 48069
Mississauga, ON L5A 1W4
Web Site: www.caet.ca
United Ostomy Association of Canada Inc. (UOAC)
P.O. Box 825
50 Charles Street East
Toronto, ON M4Y 2N7
Toll Free: 1-888-969-9698
Web Site: www.ostomycanada.ca
UOAC Chapters Across Canada: www.ostomycanada.ca/chapters.htm
UOAC chapters have been organized in all ten provinces, and are meant to provide an opportunity for persons who have had or may have ostomy surgery and their families, partners, caregivers and friends to meet, provide support and understanding and share information.
Canadian Cancer Society
Suite 200, 10 Alcorn Avenue
Toronto, ON M4V 3B1
Toll Free: 1-888-939-3333
General Email: firstname.lastname@example.org
Web Site: www.cancer.ca
Canadian Medic Alert® Foundation Inc.
Suite 800, 2005 Sheppard Avenue East
Toronto, ON M2J 5B4
Toll Free (English): 1-800-668-1507
Toll Free (French): 1- 800-668-6381
Web Site: www.medicalert.ca
Crohn’s and Colitis Foundation of Canada
Suite 600, 60 St. Claire Avenue East
Toronto, ON M4T 1N5
Toll Free: 1-800-387-1479
Web Site: www.ccfc.ca
Canadian Society of Intestinal Research
855 West 12th Avenue
Vancouver, BC V5Z 1M9
Toll free: 1-866-600-4875
Fax: 1-604 875-4429
Web Site: www.badgut.com
Familial Gastrointestinal Cancer Registry
Attention: Terri Berke, Clinical Co-ordinator
Mount Sinai Hospital
Suite 1157, 600 University Avenue
Toronto, ON M5G 1X5
Phone: 1-416- 586-4800 Ext. 8334
Or write to:
Dr. Zane Cohen
Digestive Disease Clinical Research Centre
Familial GI Cancer Registry
60 Murray Street, Box 24
Toronto, ON M5T 3L9
IDEAS (Intestinal Disease Education and Awareness Society)
1859 Napier Street
Vancouver, BC V5L 2N4
International Association for Medical Assistance to Travellers
Suite 1, 1287 St. Claire Avenue West
Toronto, ON M6E 1B8
Web Site: www.iamat.org
Wound Ostomy & Continence Nurses Society
Suite C, 15000 Commerce Parkway
Mt. Laural, NJ 08054
Toll Free: 1-888-224-WOCN
Web Site: www.wocn.org
United Ostomy Association of America (UOAA)
P.O. Box 66
Fairview, TN 37062
Phone: 1-949 -660-8624
Toll Free: 1-800-826-0826
Web Site: www.uoaa.org
General Information Email: email@example.com
World Council of Enterostomal Therapists (WCET)
P.O. Box 48099
Mississauga, ON L6A 1W4
Web Site: www.wcetn.org
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