This is the simplest and most straightforward form of urinary drainage following surgery to remove the bladder (cystectomy). You may see it referred to as a urostomy, an ileal conduit or urinary diversion. Summary: the surgeon will create a channel from the tubes which carry urine from your kidneys to an opening in your abdomen urine will flow continually through this channel to the opening you will wear a bag, attached to your body, to catch and hold this urine After the operation our stoma nurses will teach you how to look after you stoma, including when and how to empty and change the bag. Page 1
What the surgery entails After removing your bladder, the surgeon will make an opening in your abdominal wall. A piece of bowel is taken out of circuit from the rest of the bowel, and joined to the pipes that drain the kidneys (the ureters). This is brought through the opening to form a stoma. Urine will drain continually through the stoma into a watertight bag that fits around the piece of bowel, and sticks to the skin by an adhesive plate. Page 2
Going home with a stoma In hospital The first days of your recovery are covered under Recovery in hospital Going home You will need to empty your urostomy bag several times a day and change it every two to three days. You may have some problems to begin with, especially at night when the stoma may leak. A district nurse will visit you at home to give you help while you get more familiar with your stoma and the way it works. You may have difficulties with leaks or skin rashes, which may mean that your bag isn t a good enough fit. Your stoma nurse will be able to give you different bags to try until you find one which works best for you and will also be happy to give you any further support and advice you may need. As your stoma is made from bowel tissue, it will produce thick white mucus, which will collect in your bag along with the urine. The amount of mucus that the stoma produces will probably reduce over time. Check up At around five weeks after your operation, you will need to come back to Addenbrooke s to Page 3
have a scan to make sure your kidneys are draining correctly. We will also check on your progress and discuss the results of your surgery. If you do need any further treatment, we will also be able to make appointments for you. Page 4
Side effects The majority of patients don t suffer any side effects following a radical cystectomy with stoma. However, you should make sure you are aware of the complications which could occur so that you can ask for extra medical help if you start to feel unwell. You should contact your doctor immediately if you develop a fever or vomiting, especially is you also have unexpected pain in your abdomen. Common side effects You have around a one in ten chance of developing one of these side effects. Men should also be aware that they won t be able to ejaculate or have children after the operation as their sperm sacs will have been removed. Common side effects include: the cancer has not been cured you may find it difficult to clear your bowel in the first few weeks after your operation (this may continue in the long term for five to 10% of patients) your fertility is likely to be affected for women: discomfort or difficulty having sex menopause may occur if the ovaries have been removed for men: a high risk of impotence (lack of erections) one in three chance of unsuspected prostate cancer being found Occasional side effects There is between a one in 10 and one in 50 chance that you may develop one of these side effects. Occasional side effects include: a reaction the anaesthetic or cardiovascular problems which may need intensive care infection in the abdominal cavity or in the wound blood loss which needs repeat surgery Page 5
developing a hernia which needs further treatment a decrease in kidney function over time scarring or narrowing of the stoma opening Rare side effects You have a less than one in 50 chance of developing one of these side effects. Rare side effects include: diarrhoea or a vitamin deficiency (due to the shortened bowel) bowel and urine leakage scarring of the bowel or ureters accidental injury to the rectum during surgery leading to the need for a colostomy Page 6
Living with a stoma Most people who have a urinary stoma are able to return to a normal life. Having a stoma is not a bar to working or most activities, even swimming. People will not be able to tell that you have a stoma. The bag is flat and will not be visible through your clothes. However the first few months after surgery can be very difficult. You will need to learn how to take care of your stoma and use the bags and fittings. In addition, you will have had major surgery and will be dealing with changes affecting, for instance you sex life and ability to have children. Many people find that they have difficulty adjusting emotionally and in terms of their body image. It is not unusual to feel quite depressed in the weeks immediately after surgery. You will probably find it takes a little time to get used to living with a stoma. It can take a little while to find the bags and fittings that suit you and you will need to learn new routines around emptying and changing your bags. Your specialist nurse will advise you about how to obtain supplies of bags and fittings. Although many people are able to go back to wearing the clothes they did before the operation, the position of your stoma may make it difficult to wear certain items. Clothing which may cause problems includes pants, skirts or trousers, with a tight waistband or belt which presses directly onto the stoma. Other patients are often the best source of information about sources for comfortable, practical and stylish clothes. We operate a buddy system and are happy to introduce you to other patients who will be able to help and advise about the practicalities of day to day life. It's important to know that there many lines of support open to you to help you overcome the difficulties you may experience. These include: your stoma nurse buddies - other patients who have been through the same experiences the Urostomy Association Page 7