Urostomy Advice

Learning how to relax

Surgery and any long term changes to your lifestyle can seem daunting. Both the operation and the recovery will be an ordeal and learning to live with an Ileostomy will take time to adapt to. However, the operation is only advised when it is necessary for reducing your current levels of pain and discomfort from disease or an accident. The ileostomy stoma will not prevent you from undertaking everyday tasks that you enjoy and like you, there are over a million other people who are living healthier lives with a stoma.

Here are some tips on relaxing:

  • Find a quiet place where you won’t be disturbed
  • Make sure you are warm, are not hungry and haven’t just eaten
  • Get in a comfortable position, for some this will be lying, others sitting
  • Use cushions and pillows to support your body and give comfort
  • Take time to clear you mind of the thoughts, focusing on your breathing can help
  • Closing your eyes can sometimes help
  • If your mind wanders, try to bring it back to the task of relaxation
  • Take three slow, deep breaths in through your nose and out through your mouth
  • Then continue with slow breathing at a rate that is natural to you
  • Slow deep breathing comes from your diaphragm, so should raise and lower your rib cage
  • Make a commitment to keep practicing, relaxing takes time to learn

Once you have got used to relaxation through breathing, you can add to this techniques, to relax your muscles;

  • Start by getting into your relaxed breathing
  • Think about your body, from the top of your head down to the tip of your toes to check that it is comfortable
  • Shift yourself around to improve your comfort
  • You are now going to think about the different muscles in your body one at a time
  • Start with your hands, clench your fists to increase the tension, feel the tension, then let go and feel the relaxation. If you find it easier, you can do one hand at a time.
  • Take time to focus on your breathing before moving onto the next muscle
  • Now your arms, stretch them out as far as the will go, feel the tension, then relax, letting them go limp, feel the relaxation
  • Shrug up your shoulder and hold them high, close to your head, feel the tension, now drop your shoulders and feel the relaxation
  • Frown and scrunch up your face as tightly as possible, then relax
  • Arch your back, hold it taut and then relax
  • Tense your stomach muscles, pulling them up and in, as though you were going to blow, relax
  • Pull your leg muscles tight and pull your toes up, then relax them all
  • Now point your toes away from the body before letting them return to a natural position
  • Return to any areas where you can still feel tension

This type of exercise may seem strange if you are not used to it, but it is very beneficial and not strenuous, so can be practiced regularly.

What will my new ‘normal’ be?

Initially you and your family will be going through a major period of adjustment. Having a stoma will mean that you have to adapt to a new way of life and you may have days when it is difficult to cope. It is important to access the support that is available, particularly at these times.

Remember that other than the way you go to the toilet, you are the same person you were before surgery. Be reassured that over time you will adapt and become more confident and comfortable with your new lifestyle.

Be patient, make use of the support networks that are available, stay active both physically and socially and find techniques that help you to relax.

How long will I be in hospital?

On the day after your operation, you are likely to be encouraged to get out of bed. Over the following days, you will start walking about and will usually moving around independently after 3 or 4 days.

Depending on your operation, you could be in hospital for between 7 and 14 days. Whilst in hospital you will have the support of the Stoma Care Nurse, so you feel confident about changing the urostomy bag and the on-going care when you are home.

You will have no control over the passage of urine, which may cause you embarrassment at first; however the nurses specialise in stoma care, so are used to it changing bags and helping you to feel more confident in managing the changes.

Before you leave hospital, you will also be given advice on how soon you can expect to get back to doing everyday activities such as driving, returning to work or playing sport. There is no standard time for returning to these activities, as each case is individual, however follow the advice you are given and don’t push yourself too much too soon. Expect not to undertake any strenuous activity for at least six weeks after surgery.

When you leave hospital your GP will be sent a letter detailing any on-going treatment you may require. You will also receive an outpatient appointment that you will need to attend. This check-up is usually a few weeks after your operation and can be a good time to raise any issues that you are experiencing.

Taking care of your skin

It is very important that you take good care of the skin around your stoma. Your Stoma nurse will provide advice and recommend products that will help you, but you must ensure that you take time to follow the care routine.

The main issue is to prevent urine from being in contact with the skin around your stoma. By selecting a correct fitting urostomy bag, you will help to prevent leaks and also damaged caused when the fitting is too tight.

Following surgery your stoma will be swollen, so a larger size will be required. As it heals, the stoma will shrink and you will need to alter the size of the urostomy bag accordingly.

Only use recommended cleaning products on your stoma, as others may contain harsh chemicals which could irritate or harm the skin.

Cleaning can cause a small amount of bleeding around your stoma which is not a cause for alarm. If you experience bleeding from inside the stoma you should see your doctor urgently.

When should I drain or change my bag?

You will not have any sensation as urine passes through your urostomy, but it will continuously work throughout the day. It is often recommended that you change your bag in the morning when the urine output is usually at its lowest at this time, as you haven’t been drinking through the night. The movement created by coughing helps to release any urine into the bag before it is changed.

The regularity that you need to change or drain your bag will vary for every person. At first this may seem stressful, but you will soon get into a regular routine. During your time in hospital, your stoma nurse will be able to give you advice on how often you need to change your bag. It’s recommended that you empty the bag before you remove it. Then seal the bag inside a disposal bag and place in the dustbin. The bags are not designed to be flushed down the toilet, so never do this as the toilet, as it will cause a blockage.

At night a urostomy bag can be attached to a night bag so you don’t need to wake up to drain your bag.

No need to be alarmed

Following surgery, you are likely to come round from your general anaesthetic in an intensive care unit and remain there for a couple of days after your surgery, so the medical team can keep a close eye on you in the early days of your recovery. You are likely to have a heart monitor connected to you and an intravenous drip to provide you with fluids until you are able to eat and drink again. You may also have additional tubes to support your recovery.

There is no need to be alarmed if any of the following occur:

  • You have one or more tube in the operated area. These are wound drains that remove excess fluid that collects
  • There is a tube down your nose, as this will drain fluid and prevent you from feeling sick
  • There is a tube going into your back. This (epidural) is providing pain killers into the fluid around your spinal cord
  • A catheter is fitted to drain urine away
  • Your stoma is covered by a Urostomy bag

Be aware that initially your Urostomy stoma won’t work, as your body recovers from the operation. It usually starts to work after 2 to 3 days. It will be swollen following surgery, but will get smaller as it heals.

At first the Stoma Care Nurse will manage the emptying of your stoma pouch and then they will show you how to do it.

The urostomy bag is designed to stick onto your abdomen where it collects urine from your stoma. It’s waterproof so you can wear it while showering or bathing.

A urostomy bag has special features including a non-return valve to stop urine from washing over the stoma, which helps to prevent urinary infections. There’s also a tap or bung at the bottom of the bag to make it easy to drain the contents into a toilet.

Suggested questions to ask

When you are pre or post operation, it can be difficult to think of the questions you need to ask when the opportunity arises. Write down any questions that come to you when you have time to think. We have compiled a list of common questions, which may also help you to get the information you need.

  • Where will my Urostomy be?
  • What will my Urostomy look like?
  • How will it work?
  • What will be the output?
  • How often will it discharge?
  • How will I know that it has discharged?
  • How do I clean the Urostomy??
  • Can I go in the bath?
  • Will it be visible under my clothes?
  • What does the pouch look like?
  • How do I change the pouch?
  • Does the pouch leak?
  • Where can I get supplies?
  • How much will they cost?
  • Will I need to change my diet?
  • When can I go back to work?
  • Will I need to make any changes to go out socially?
  • Will there be any restriction on travel?
  • How will it affect my sex life?
  • Where can I get support and advice?
  • Will my medical insurance cover any care costs?

What is a stoma nurse?

When you are in hospital for an operation there will be a team of people responsible for your health. For Urostomy patients, one of this team will be a Stoma Care Nurse. They are responsible for helping you to learn to cope with your stoma, making you aware of care routines, as well as guiding you in choosing the supplies you will need and where you can purchase them.

Stoma Nurses (also known as Enterestomal or ET Nurses) are specialists who will help you pre and post op. They will be able to answer any questions that you have. Prior to surgery, they will also ask you lots of questions about your lifestyle and needs, as this information may influence the best position for your ileostomy stoma. The position is important for you future comfort and ability to properly care for your stoma. The nurse may mark your abdomen so the surgeon can see where to form the stoma.

If you would like to meet with someone who is currently living with a stoma, so you can discuss issues such as what measures they have employed to best cope, your Stoma Care Nurse can arrange this for you.

Urostomy stoma aftercare

It is vital that you take good care of your Urostomy stoma. This app provides you with details on how best to care for your stoma and support services.

Your Urostomy stoma will look like a small spout sticking out of your abdomen and is red, like the inside of your mouth. The stoma has no nerve supply, so it will not hurt, but you need to take extra care not to injure it, as you will be unable to feel if you do any damage.

Urostomy stomas explained

As you await your surgery, you may be worried about what a Urostomy stoma is. As part of your pre-op information, it should have been explained to you, however you may not have been able to take this information in at that point in time. The pressure of the situation may have also made you too anxious to ask questions.

A Urostomy is a permanent surgical procedure which diverts the natural flow of urine through the urinary system into a specially created stoma. To create the stoma the surgeon will isolate a short piece of your small intestine from which he will create a tube or spout (known as an ileal conduit). The two ureters will be plumbed into this section of intestine, which will be brought to the surface of the abdomen. Following the operation, urine will pass through the stoma, completely bypassing the bladder. This surgery may be required even if the bladder is not removed.

There are a number of reasons that all or part of the urinary system may need to be removed or bypassed. It may be down to a defect at birth, meaning babies need to be operated on. For adults the need for this surgery usually related to disorders that cause severe incontinence, or the removal of bladder cancer.

To help explain further, we will describe your urinary system and how it works:
On a daily basis approximately 2 litres of urine is produced in the kidneys and is passed down the ureters to the bladder. The continuous flow of urine gradually fills the bladder and when it is partially full, you have the sensation of needing to pass water. When appropriate the balder then contracts to push the urine out through the urethra.