A Guide to Living with an Urostomy
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 Urinary Tract
The urinary tract consists of two kidneys, two ureters, one bladder and one urethra (Diagram #1) .
Urine is made in the kidneys and flows through the ureters into the bladder, where it is stored. The bladder is a soft balloon-type organ that stretches as urine fills it and contracts when it is emptied. The urethra is the tube that drains urine from the bladder to the outside of the body.
What is a Urostomy?
A urostomy is a surgically created opening to divert urine from its normal route. This surgery is necessary when the bladder must be removed or bypassed. Children who have urinary tract birth defects may need a temporary urostomy. Urostomies are usually permanent for adults. Common reasons for performing urostomies in adults include: cancer of the bladder, spinal cord injury resulting in loss of bladder control, and neuromuscular diseases such as multiple sclerosis.
The most common type of urostomy is called an ileal conduit. To create the conduit, the surgeon isolates a short piece (about 10 cm) of small intestine (bowel) (Diagram #2). The small intestine is reconnected and functions normally. The piece of isolated bowel is closed at one end. The other end is brought to the outside of the abdomen, turned back on itself like a cuff of a sleeve creating the stoma and sewn to the skin.
The ureters from the kidneys are attached into this piece of small bowel, which is now called the conduit (Diagram #3). The part of the small intestine known as the ileum is used to make the conduit; therefore, the urostomy is called an ileal conduit (Diagrams #2 and #3). The urine is excreted from the kidneys and drains through the ureters into the conduit. From the conduit the urine drains through the stoma. The ileal conduit is not a storage cavity and urine drains most of the time. A pouch must be worn at all times to collect the urine.
What is a Stoma?
The visible part of the intestine is called a urostomy stoma. The stoma is usually located on the right side of the abdomen slightly below the umbilicus (navel). 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. As healing from your operation occurs, the stoma usually gradually shrinks in size. The size of a stoma varies depending on the individual. The stoma may bleed slightly when wiped or cleansed because many tiny blood vessels are very close to the surface. The stoma usually protrudes slightly from the abdomen; this makes the pouching system easier to adhere to the abdominal skin. There is no feeling in the stoma, it does not hurt when touched or when urine is passed. You cannot control the movement of urine through the stoma. Urine is very irritating to the skin. A pouching system must be worn at all times to collect the urine and protect the skin around the stoma.
The small intestine normally secretes mucus; therefore, the urine will probably always contain some mucus shreds. A large amount of mucus in the urine may be noticed after your surgery, but this decreases over time.
What is a Pouching System?
A pouching system/appliance is made for containing urine and to protect the skin around the stoma. A variety of urostomy pouching systems is available to meet individual needs. A nurse and/or an 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. A pouching system/appliance consists of a pouch to collect the urine and a skin barrier to form a seal around the stoma (Diagram #4).
Pouching systems are…
- Odour resistant
- Low profile – not noticeable through clothing
They may be…
- One piece or two pieces
- Disposable or re-usable
- Pre-cut or cut-to-fit the stoma opening
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.
Urostomy pouches have an “anti-reflux” valve preventing urine from flowing from the pouch back onto the stoma. Urostomy pouches also have a tap-like device on the bottom allowing for emptying the pouch when necessary. The pouch should be emptied when it is 1/3 to 1/2 full to help prevent leakage. At night, a special drainage tubing and bottle or bag can be connected to the pouch to help avoid having to get up to empty the pouch. Try leaving a small amount of urine in the pouch before attaching it to the tubing to prevent a vacuum in the pouch. Make sure urine is flowing from the pouch into the drainage bag before you go to sleep. Prevent kinking and pulling of the drainage tubing. If you have concerns, consult with an ET nurse.
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 (urologist), 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 a liquid diet. Although it is urinary surgery you are having, the surgeon also operates on the small intestine using a small piece of your bowel to make the urinary diversion. 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 questions or concerns with your surgeon (urologist).
It is important that either your surgeon (urologist) 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 anatomy of each person.
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…
- An intravenous (IV) giving you fluids and medications.
- A dressing covering the operative area. Your incision will probably be closed with staples that are removed at a later date.
- A drainage tube in the abdomen to remove any fluid from the operative site.
- A urostomy pouching system.
- A catheter or two stents (tiny tubes) through your stoma helping to protect the operative area for the first few days.
You may have…
- 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.
Your urostomy functions immediately. In the operating room after surgery, a pouching system is applied over your stoma and connected to a bedside drainage bag. The first pouch may be transparent allowing nurses and doctors to assess the stoma colour and urine appearance. Nurses routinely check the condition of your stoma and ensure the pouching system is intact. Nursing staff measure your urine output, which may be blood tinged for the first few days. This is normal.
Learning to Live With a Urostomy
As you gradually recover from surgery, you begin to take part in the care of your urostomy. You are taught the care of your urostomy 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 your 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 feel confident and independent with your care.
Prior to discharge from hospital, you may have your urostomy 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 two to three extra pouching systems when you leave the hospital and a list of the supplies required for your ostomy care. It is preferable to have your supplies delivered to you while 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.
Ongoing Considerations for Daily Living
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 urostomy, discuss your concerns with your surgeon (urologist), 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 a forceful water stream away from the stoma. Soap and water will not injure or enter your stoma, but urine will probably be expelled.
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 care of the skin around the stoma is necessary. The skin around the stoma should be free of redness and irritation and look like the skin on the rest of your abdomen. Check your skin and stoma each time you change your pouching system. The most convenient time to change your pouching system may be in the morning before drinking fluids.
Cleanse the skin around the stoma with warm water. It is not necessary to use soap; however, if you chose to, use a mild non-perfumed soap and rinse your skin well with warm water. Wipe the skin gently and pat thoroughly dry. 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 remover may interfere with pouch adherence. To keep the skin dry around the stoma during a pouch change, hold rolled clean gauze on top of the stoma. Never insert the gauze into the stoma.
Generally it is not necessary to cleanse the stoma. However, if you choose to do so, a small amount of bleeding may occur – this is normal. Cleanse the stoma with warm water; it is not necessary to dry the stoma.
Consult with an ET nurse before using creams or powders because these products can interfere with the adhesive of the pouching system.
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. The use of a razor may cause skin irritation for some people. Discuss concerns or questions with an ET nurse or your doctor.
Skin irritation can be caused by…
- Damage or injury from inappropriate removal of the pouching system
- Incorrect appliance fit
- Leakage of urine onto the skin
- Sensitivity to products
If you experience skin irritation and it does not quickly resolve, contact an ET nurse or your doctor for assistance.
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 to 1/2 full. Minor adjustments in clothing may be required for comfort.
These adjustments may include…
- Wear waistbands above or below the stoma.
- Avoid tight belts directly over the stoma.
- Wear a pouch cover made from a soft absorbent fabric to provide comfort and keep the plastic away from the skin.
- Wear undergarments that cover and support the pouching system. A soft elastic or Lycra® undergarment may be worn. Some specialized pouch covers and undergarments are available.
Weight Gain and Weight Loss
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…
- Take at least double the supplies you normally use. Your supplies may not be available where you are travelling or be reimbursable outside your home province.
- Protect your supplies from exposure to heat and/or cold.
- Keep some supplies in your hand luggage in case your luggage is lost.
- Observe water precautions. Take care with the local drinking water; it may not be safe to drink.
- Ask an ET nurse, your surgeon (urologist) or family doctor or contact the CAET and/or the UOAC about available resources in the area you plan to visit (see Resource List).
- Use every opportunity to empty your pouch even if the pouch is not 1/3 to 1/2 full. The next opportunity may be a long way off.
If you are camping, it is advisable to sleep on a cot raised off the ground allowing the urine to drain into a night drainage bottle or bag. Collapsible night drainage bags are useful. Check with your ostomy supplier or an ET nurse.
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 urostomy may have on sexual relationships. Concerns should be discussed with your partner, surgeon (urologist), 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 (urologist) and when you feel physically and emotionally ready. It takes time to adjust to the changes in your body.
Surgery removing the bladder may damage some of the nerves controlling sexual function. Men may experience difficulties with erection or ejaculation. Treatment options should be discussed with your doctor and/or surgeon (urologist). Bladder removal does not usually have any effect on female sexual function unless more extensive surgery is carried out.
The following suggestions may help when you are involved in an intimate relationship…
- Empty your pouch prior to sexual activity.
- 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 (urologist). A discussion with a professional specializing in sexual counselling may be of benefit. Your family doctor or surgeon (urologist) can refer you, if you wish.
Ostomy pouches are odour resistant.
It is advisable to…
- Change the pouch regularly.
- Prevent pouching system leaks.
- Empty the pouch when it is 1/3 to 1/2 full.
- Keep the tap on the bottom of the pouch completely clean and dry.
- Check the new pouch for pinholes or flaws prior to putting it on.
- Cleanse your night drainage bottle or bag, tubing and adapter daily with warm soapy water; rinse the soap out with warm water, then rinse again with a vinegar and water solution (suggest a 3:1 ratio) and hang to dry.
There may be some odour when you empty your pouch. If you notice an odour stronger than what is normal for you or a darker urine colour, your urine may be concentrated or you may be developing an infection.
Eating asparagus may give the urine a foul odour but this will not permeate through the pouch.
To help reduce odour…
- Drink 8 to 10 glasses of water each day unless a medical condition restricts your fluid intake.
- Drink cranberry juice as it may help to decrease odour (this remains debatable in the literature).
- Consider attempts to keep your urine acidic. Vitamin C tablets may help to keep the urine acidic. Vitamin C from citrus fruits and juices, such as oranges and grapefruits, will not have the same effect. Some people who take vitamin C supplements may develop kidney stones. The benefits of Vitamin C to acidify urine remain controversial. The dosage and the benefits for you must be discussed with your surgeon (urologist).
Medications are absorbed in different areas of the digestive tract. The effectiveness of medications is unlikely to be altered by your urostomy. You should discuss all your medications, including non-prescriptions medication, with your family doctor or pharmacist. You may notice some drugs, such as antibiotics or vitamins, may discolour your urine or cause a strange odour. Antibiotics may alter the balance of the normal bacteria on your skin, resulting in skin irritation under the pouching system. If you take antibiotics and skin irritation occurs contact an ET nurse or doctor.
Certain medications, such as Vitamin C, may cause urinary stones to form (refer to the section on Odour Control for more information). Check with your pharmacist, surgeon (urologist) or doctor when you begin any new medication or if you have concerns about your drugs.
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 with a urostomy usually requires little or no change. There is no need for a special diet unless you have restrictions from another medical condition.
To maintain healthy kidneys, it is important to keep your urine diluted; therefore, you should drink 8 to 10 glasses of water each day. If this is not possible for other health reasons, talk to your doctor.
The first weeks after surgery are a period of adjustment. Following any type of surgery involving intestine or bowel (remember your bowel was also operated on), 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…
- Grain products
- Vegetables and fruit
- Milk products
- Meat and alternatives
Everyone differs in the foods they can tolerate. If you wish to see a dietitian, ask your family doctor or ET nurse for a referral.
Post-Surgical Hospital or Clinic Visits
After your surgery you usually have a follow-up visit with your surgeon in his/her clinic. When you go for your follow-up visit(s) with your surgeon or ET nurse, take enough supplies with you for a complete pouching system change.
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 about your urostomy. Be sure to inform staff if your bladder was removed.
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.
Concerns to Report to Your Doctor and/or ET Nurse
Contact your ET nurse, surgeon (urologist) and/or doctor for the following problems…
- Urine flow has slowed down or stopped
- Excessive bleeding from the stoma
- Marked change(s) in stoma size or appearance
- Blood in the urine
- Persistent problem(s) maintaining a good seal with your pouching system
- Irritated or red skin around your stoma
- Swelling near or around your stoma
- Appearance of a gritty white substance on or around your stoma
- Excessive mucus in the urine
Signs and symptoms of a urinary tract infection, including…
- Back pain
- Nausea and vomiting
- Unusually foul smelling and cloudy urine
- Generally feeling unwell
A urine sample for culture and sensitivity (C&S) is sometimes ordered by your doctor to check for infection. This sample should not be taken from your pouch. Urine from the pouch likely already contains bacteria, which may lead to a false reading or result. Your skin and stoma are also covered with bacteria. To obtain a urine sample, a nurse, ET nurse or doctor knowledgeable in the procedure inserts a small sterile catheter gently through your stoma into the conduit. If no one has been taught how to do this procedure, put on a clean pouch and obtain fresh urine for a sample from the new clean pouch.
If your bladder has been removed, never allow anyone to try to insert anything into your urethra. If your bladder has not been removed, you may need the bladder rinsed out or irrigated occasionally. Your surgeon (urologist) or doctor will discuss the care you require.
Anaesthetist: A medical doctor who specializes in giving medication to put people to sleep so surgery can be performed.
Bacteria: A one-celled organism some of which can cause disease.
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.
Conduit: A channel or passageway.
Divert: Take a new route or direction.
Electrocardiogram (ECG): A test to evaluate the heart action.
Irritation: Skin that is red, sore, moist or has a rash; may be caused by urine on the skin or a reaction to your pouching system.
Laxative: Medication used to stimulate the bowels to move.
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.
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).
Umbilicus: More commonly known as the navel or belly button.
Urologist: A surgeon who specializes in the medical and surgical care of people who have urinary system problems.
Resource List (updated September 2007)
Canadian Association for Enterostomal Therapy (CAET)
P.O. Box 48069
Mississauga, ON L5A 1W4
Web Site: www.nswoc.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
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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