This guide provides helpful information to assist you in learning to live with an ileostomy. It is normal to feel apprehensive about having an ileostomy. Every year, many men, women and children have ileostomy 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 ileostomies 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. To help you understand the medical terms, you will find words defined in the Glossary.
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.
An ileostomy is a surgically created opening into the last portion of the small intestine called the ileum, diverting intestinal drainage from its normal route. Medical conditions that may require an ileostomy include:
inflammatory bowel disease (ulcerative colitis or Crohn’s Disease), familial adenomatous polyposis, cancer, trauma, or birth defects.
An ileostomy allows the small intestine drainage to exit the body without proceeding through the remainder of the digestive tract. The type and amount of drainage from an ileostomy varies according to diet, fluid intake and physical activity. An ileostomy may be temporary or permanent, depending upon the reason for surgery.
The visible part of an ileostomy is called a stoma. The stoma is usually located on the lower right side of the abdomen. To create the stoma the surgeon brings the small intestine 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 small intestine.
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 stoma usually protrudes slightly from the abdomen; this makes the pouching system easier to adhere to the abdominal skin. 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 drainage and gas are passed. You cannot control the movement of drainage and gas through the stoma; therefore, a pouching system must be worn at all times.
There are three main types of ileostomies. Your surgeon will discuss the best type for you.
An end ileostomy is located in the ileum. If the colon, rectum and anus are removed, the ileostomy is permanent (Diagram #2).
End Ileostomy with a Rectal Stump
Sometimes the lower part of the rectum will be closed and left inside the abdomen, forming a rectal stump (Diagram #3). Because the rectum has not been removed, the urge to have a bowel movement may occur. Mucus and some old stool, if present, will be passed. If the ileostomy is temporary, a second surgery is required to connect the small intestine to the rectum, once healing from the first surgery is complete.
A loop ileostomy may be created to divert stool from diseased, injured or healing bowel. A loop ileostomy is usually temporary and has two openings. One opening leads to the functioning part of the small intestine through which the drainage and gas pass. The second opening leads to the non-functioning part of the small intestine and allows mucus and old stool, if present, to pass from the rectum through the anus (Diagram #4).
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 #5). Pouches are designed to open at the bottom so they can be emptied as required. The nurse or ET nurse will show you samples of pouches 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 meet a variety of health care providers: doctors, nurses, dietician, anaesthetist and ET nurse. These professionals discuss different aspects of your operation and answer your questions. You are 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, complete cleansing of the bowel and a liquid diet. 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. Discuss any questions and concerns with your surgeon.
It is important that either your surgeon or an ET nurse 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 the anatomy of the individual. 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 the 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.
An intravenous (IV) giving you fluids and medications. A dressing covering the incision on your abdomen. Your incision will probably be closed with staples that are removed at a later date. A catheter inserted into your bladder to keep it empty. An ileostomy pouch over the new stoma.
A suction tube inserted through your nose into your stomach keeping it empty until your bowel returns to normal function. Support stockings or special stockings to help the circulation in your legs. A drainage tube in the abdomen to remove any fluid from the operative site.
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 following surgery, a pouching system is applied over the stoma. Nurses routinely check the condition of your stoma and ensure the pouching system is intact. Your ileostomy probably will start functioning within 24 to 48 hours after your surgery. At first you may have abdominal cramps and then gas starts passing through the stoma, a sign your bowel is beginning to work. The drainage will be very liquid initially and should thicken as your diet is resumed.
If the rectum has not been removed, the urge to have a bowel movement may be felt. Mucus and/or old stool, if present, may be passed.
As you gradually recover from surgery you begin to take part in the care of your ileostomy. You are taught to care for your ileostomy before going home. 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 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 your teaching sessions so they can become familiar with the care. 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 feel confident and independent with your care.
Prior to discharge from hospital, you may have your ileostomy 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 supplies. You must have at least 2 – 4 extra pouching systems when you leave the hospital, along with 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.
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.
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 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…
When riding in a vehicle, protect the stoma from the seat belt. A soft foam padding or a small pillow can be placed between the stoma and the seatbelt to protect the stoma.
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. The following suggestions may help when you are involved in an intimate relationship:
Empty your pouch prior to sexual activity. Wear a smaller “mini” pouch or fold and tape your pouch. Cover the pouch with a pouch cover, cummerbund, fancy lingerie or crotchless panties. Try different positions that are comfortable for you and your partner.
Ongoing concerns should be discussed with your family doctor or surgeon. A discussion with a professional specializing in sexual counselling may be of benefit. Your family doctor or surgeon can refer you, if you wish.
Medications are absorbed in different parts of the digestive tract. You need to review all your medications with your doctor and pharmacist, including birth control pills and all non-prescription medications. Most medicationscan be taken safely following ileostomy surgery. Exceptions include time-released or enteric- coated tablets; they may be ineffective and pass unabsorbed through the stoma into the pouch. If a pill or a part of a pill passes through the stoma into the pouch, contact your doctor or pharmacist. Do not take stool softeners or laxatives. They can result in diarrhea, causing severe dehydration and electrolyte imbalance. Remind your doctor and tell your pharmacist about your ileostomy before taking new medication and discuss concerns with them. Certain medications, for example vitamins or antibiotics, can affect the odour, colour and consistency of ileostomy drainage. At all times carry a list of all the medications that you take. A blank medication record can be obtained from some pharmacies.
Having an ileostomy may require some diet adjustments. There is no need for a special diet unless you have another medical condition. Ask for a visit with a dietician prior to discharge from the hospital who will assist you with dietary concerns and management. 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. If you eat slowly and chew each bite well, most foods will be tolerated. Tough meats or high roughage (fibre) foods could cause a blockage in the bowel (refer to the section on Food Blockage or Obstruction for more information). You may find in a few weeks you are able to tolerate foods that bothered you at first. Eat regularly – skipping meals will not stop stoma output.
Following ileostomy surgery, more fluid, salt and potassium are lost from the body and it is important to replace these losses. To prevent dehydration, drink at least 6 to 8 large glasses of water each day. Unless your doctor has advised you to restrict salt, take a little extra with your meals. It is also important to eat high potassium foods such as bananas, apricots, tomatoes, potatoes, and squash or drink orange juice. A more extensive list of high potassium foods can be obtained from a dietician. The following guidelines are designed to assist you in dealing with some conditions commonly experienced by people with an ileostomy. If any of these conditions persist, contact your doctor or ET nurse.
Foods that may promote gas formation…
If you have a problem with excess gas, you may wish to limit your intake of gas-forming foods or eat them on occasions when gas production is not a concern to you.
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. If odour is a concern, consult a dietician or ET nurse for suggestions for odour control.
Normally the drainage from an ileostomy varies daily from liquid to pasty, depending on your food intake, diet and activity. Avoid natural laxatives such as caffeine, prunes, figs or licorice. Fresh fruits, salads, green vegetables and highly spiced foods may also contribute to diarrhea. If you are experiencing diarrhea, your stool will remain liquid and increase in volume resulting in emptying your pouch more frequently than what is normal for you. If diarrhea occurs, you must drink extra fluids (refer to the section on Dehydration for more information).
If diarrhea persists for more than 24 hours or if you feel unwell, contact your doctor.
Foods that may thicken stoma output…
The creation of an ileostomy and loss of colon (large bowel) function may increase the loss of fluids, salt and potassium from your body. Excessive loss of these important substances will lead to dehydration. If symptoms persist, contact your doctor immediately because you may need intravenous therapy. Dehydration may occur during warm weather, after excessive exercise, or if experiencing diarrhea, vomiting or other illness.
The surgical procedure used to make an ileostomy might result in a slight narrowing of the bowel near the stoma. Undigested food may become lodged in this narrowing and cause an obstruction. The stoma may swell as a result.
It may be necessary to gently wash out (lavage) the small intestine using small amounts of normal saline and a soft catheter. Only an ET nurse, nurse or a doctor who is knowledgeable with the procedure should do this procedure.
After your surgery, you usually have follow-up visits at the hospital or at your surgeon’s clinic. When you come for your follow-up visit, bring enough supplies with you for a complete change of your pouching system. Inform staff if your colon, rectum and anus have been removed. This will help them plan your care.
Routine bowel preparations such as laxatives are not necessary prior to procedures (i.e. x-ray, ultrasound or surgery). Do not take laxatives, enemas or suppositories unless directed by your doctor. A clear fluid diet is considered sufficient to cleanse the small intestine. If you have concerns ask your doctor.
If you are being treated for another medical or surgical condition, remember to tell your doctor and all health care providers at the hospital or clinic that you have an ileostomy.
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.
Contact your doctor or ET nurse if you experience any of the following problems…
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.
Catheter: A soft flexible tube used to drain or put fluids into a body cavity or organ.
Dehydration: Condition resulting from excessive fluid loss.
Electrocardiogram (ECG): A test to evaluate the heart action.
Electrolytes: Normal components of body fluids such as salt and potassium.
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.
Familial Adenomatous Polyposis: A rare hereditary disorder that runs in families. It is a condition in which large numbers of precancerous polyp growths are present in the colon (large bowel).
Inflammatory 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).
Resource List (updated September 2007)
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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Marquis, P., Marrel, A., & Jambon, B. (2003). Quality of Life in Patients with Stomas: The Montreux study. OstomyWound Management, 49(2), 48 – 55.
Secord, C., Jackman, M., & Wright, L. (2001). Adjusting to Life With an Ostomy. Canadian Nurse, 97(1), 29 – 32.
Turnbull, G.B. (2000). The Importance of Coordinating Ostomy Care and Teaching Across Settings. OstomyWound Management, 48(5), 12 – 13.
Turnbull, G.B. (2003). A Look at the Purpose and Outcomes of Colostomy Irrigation. OstomyWound Management, 49(2), 19 – 20.
White, C.A. (2002). Positive Options for Living With Your Ostomy. Alameda, CA: Hunter House.