There are approximately 11,000 people with a urostomy in the UK and around 800 new urostomies are created each year. Therefore, it is important to understand what a urostomy is and about the surgery involved. Most people who have undergone urostomy surgery have discovered a sense of new found freedom after the operation, as it has given them a feeling of control, which they did not have before.
So, what is a urostomy? A urostomy is a surgical procedure that is performed when your bladder has been surgically removed or it no longer works properly. During this procedure, a stoma is created which will become a permanent opening. This new stoma diverts the urine to the outside of your abdomen hence it being called a uro-stomy. Other terms you may hear it called are a ‘urinary diversion’ or an ‘ileal-conduit’.
The normal urinary tract involves two kidneys, two ureters, one bladder and one urethra. Urine is made in the kidneys and travels through both ureters to the bladder. Urine is then stored in the bladder until it is around half full and is then passed from the body through the urethra. A urostomy/ ileal conduit surgery is the creation of a new exit route for urine through the stoma which is then collected in a urostomy pouch, which sits externally on the abdomen. This surgical pathway through which the urine can travel without any interference allows the kidneys to function at optimum efficiency.
The removal of the bladder is known as a cystectomy. A radical cystectomy means taking out the whole bladder and the nearby lymph nodes. Depending on the reason for surgery, some other organs near the bladder may need to be removed by your surgeon, but this will be discussed in depth prior to your surgery. After the bladder is removed, your surgeon will reconstruct the urinary tract to allow urine to leave your body either by creating a urostomy. Not all people who have a urostomy will have their bladder removed – this is dependent on the reason for the surgery.
Why is a urostomy needed?
There are many reasons why a person may require a urostomy. These are due to a diseased bladder or a defect/problem with the urinary system which needs to be bypassed. Often the social reasons are voiced by many with a defective bladder as patients cannot control the flow of urine, causing them embarrassment and skin soreness due to being constantly wet. Here are some other reasons someone may require a urostomy:
- Diseased bladder such as cancer
- Birth defects in babies such as Spina Bifida which affect the urinary tract
- In conditions such as Multiple Sclerosis, Cerebral Palsy and spinal injury, nerve damage may occur resulting in bladder dysfunction
- Gynaecological issues, urinary fistula, or other conditions where the bladder or sphincter muscles do not work properly
- Chronic inflammation: painful bladder syndrome or interstitial cystitis
- Trauma or injury to the bladder
How is a urostomy created?
As there are different types of surgery available, these options will be discussed with your Surgeon prior to your operation so that you are fully informed and can choose the surgery which will be best for you and your lifestyle. The type of urinary diversion you have depends on different factors such as your diagnosis, your age, prior medical history, previous surgery, how well you can move around and whether you have good dexterity in your hands.
The most commonly formed surgery for urinary diversion is called an ileal-conduit with urostomy formation. It is still one of the most used techniques for the diversion of urine after a patient has had their bladder removed.
This is when the surgeon takes a 12-14cm section of the small bowel (ileum) to form the ileal-conduit. The remaining bowel is reconnected for normal function to continue. The kidneys produce urine, which passes down into the ureters. The ureters are then detached from the bladder and stitched into the conduit. One end of the conduit is closed and the open end is brought out onto the abdominal wall to create a stoma. There is no muscle to control urination so you will need a urostomy pouch to collect the urine. This pouch covers your new stoma and adheres to your abdomen.
During the operation, fine tubes called “stents” are inserted into the kidneys via the ureters. These assist free drainage of the urine until healing has taken place. These stents either fall out or are removed approximately 10 days after surgery. These will be monitored by your stoma care nurse, once you are home from the hospital.
Continent urinary diversion:
Continent urinary diversion such as the creation of a Neobladder or Mitrofanoff Reservoir is classed as urinary reconstruction and is an alternative to ileal conduit surgery. To undergo these two surgeries, there must be a low risk of cancer recurrence. Following either surgery, you are taught how to self-catheterise as this will be required on a long-term basis to drain the urine. Therefore, you must have good dexterity and a clear understanding of what is required for a prolonged period of time. You may also experience some level of urinary incontinence (dribbling) for the first 6 months and need to wear a pad.
For a Neobladder procedure, your surgeon uses a larger piece of your intestine to create something like a substitute bladder. It is attached to the urethra so you can pass urine like you used to, but you won’t have the normal muscle reflexes that kick in when the bladder is full. You may need to self-catheterise to empty the bladder completely.
A Reservoir is created from a section of your intestine into a holding pouch inside your abdomen. There is a small, continent opening (stoma) on the surface of the abdomen, through which you insert a catheter to drain this internal reservoir about 6 times per day.
Following Urostomy Surgery
It is normal to feel very tired in the weeks following surgery. Be kind to yourself and remember you have undergone major surgery and your body will take time to heal and adjust. During the first six to eight weeks, take things slowly but it is important to keep mobilising. Each week you will notice you are able to walk a little further. Try not to bend over or lift any heavy objects.
It takes about 8-12 weeks to feel fully recovered from stoma surgery.
Caring For Your Stoma
The stoma itself will be red in colour and feel moist to the touch. The section of bowel used to create the conduit will produce mucus to help lubricate the bowel, therefore your new conduit will produce mucus that resembles a white-jelly like substance. The amount varies from person to person, but should slowly reduce over time.
The stoma does not have any sensory nerve endings and therefore has very little sensation, it does not cause any pain to touch but may be a little tender around the edges initially. It is very vascular with a rich blood supply and may bleed readily whilst it is being cleaned. A few spots of blood when you clean your stoma is nothing to be concerned about and it simply reminds you to go gently.
- Wash the stoma and surrounding skin with warm water before applying your next stoma pouch
- Try to avoid using soaps or any fragranced body washes
- Take the time to check your stoma and the surrounding skin for any irritation
- Gently dab the skin and stoma dry before applying your next pouch
Your stoma will slowly reduce in shape and size during the first 6-8weeks following surgery. Your stoma care nurse will help guide you in sizing your stoma and getting the correct fitting and aperture size for your stoma pouch. Further down the line, if you lose or gain weight, your stoma may change shape or size, again it is worth checking if the fitting of your stoma appliance is good.
There are many different types of urostomy pouch. Your Stoma Care nurse will help you to select one that you feel is comfortable and is aesthetically pleasing. All pouches are waterproof, odour proof, have a skin-friendly adhesive that acts as a protective barrier to your skin. The urostomy pouches have a non-return valve that prevent the urine in the pouch from flowing back over the stoma. The pouches have taps or bungs at the end to enable the person to drain the urine down the toilet.
Empty the pouch often, usually when it is one third to one-half full. A urostomy pouch will hold the same amount of urine as your bladder did, so you will only need to empty it the same number of times you used to urinate before your illness or surgery!
Change your pouch every alternate day or every second day. This will be dependent on how well the pouch adheres to your skin, whether you experience any leaks and also how active you are. Some people find that using a seal or washer around their stoma gives their pouch a longer wear time, as urine can be corrosive to the skin barriers for some.
There are options of night bags that will continue to drain the urine away from your urostomy pouch and save you from having to empty your pouch overnight. Night bags and leg bags tend to be a personal preference and are certainly not compulsory.
If you experience any leaks or sore skin, reach out to your Stoma Care Nurse. They can help support you and get both of these elements under control again.
Depending on the extent of your surgery, it is not uncommon to experience physical changes to sexual function. Your surgeon will discuss the risk of this before your operation.
Be patient with each other, intimacy with a stoma is still possible and will not hurt your stoma. Yet, comfort could be an issue after surgery. Nerve damage may affect both men and women. If you do experience any sexual difficulties, discuss these with your Surgeon or Stoma Care Nurse.