Understanding what a urostomy is and why it is needed, is so important for those going through stoma surgery. It is also helpful for those who are supporting someone going through stoma surgery.
Adapting to living with a urostomy can take time, but with the right information and knowledge. It won’t take long before caring for your own stoma before second nature and you’re back to doing the things you enjoy.
Some people who have undergone urostomy surgery have discovered a sense of newfound freedom after the operation. It has given them a feeling of control, which they did not have before.
What is a urostomy?
A urostomy is a surgical procedure which 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 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 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.
- 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 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 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 six 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.
Choosing the right urostomy pouch
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 which acts as a protective barrier to your skin. The urostomy pouches have a non-return valve which 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!
When to change a urostomy pouch
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 which will continue to drain the urine away from your urostomy pouch and save you having to empty you 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.
Living with a urostomy
It takes time to learn how to adapt to the changes in your body. Surround yourself with friends and family so they can support you, so that you don’t feel isolated.
Talking to other people about how you feel might help your emotions. Your stoma care nurse is also there for support and advise. The Urostomy Association can also direct you to helpful information and provide someone to speak to who has gone through the surgery.
Work, life, balance with a stoma
You may worry about your job and working life. This should not be affected unless you are doing heavy manual work. Speaking to your stoma nurse for guidance on lifting and ways to prevent a hernia developing would be beneficial to you if so.
Depending on the extent of your surgery, it is not un-common 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.