Adjusting to life with a urostomy means stepping into the unknown. Not only can big changes to your body take time to accept, there’s lots of new information to absorb about managing life with your stoma.
It’s normal for all of this to feel overwhelming, and your head may be full of questions, including those of the ‘what if?’ kind. You’re probably wondering about what to do should any issues arise.
We hope it reassures you to know that after surgery, many people encounter few problems. However, some do experience difficulties, so we’re covering some of the most common ‘what ifs’ to help you feel as prepared and confident as possible should any of these happen to you.
Early on, changing your bag can feel fiddly. That’s completely normal – after all, it’s a new skill. There’s no rush, so take your time. With practice, it becomes easier and quicker.
If you’re struggling, ask your stoma nurse for a refresher demonstration. You can also try different products to see what works best for you.
Most people find that within a few weeks, a bag change becomes just another part of their routine.
Anxiety about leaks is common among urostomates, particularly those new to living with their stoma. Almost every urostomate experiences a leak at some stage, but while they can be upsetting, its worth remembering that leaks are rarely cause for ongoing concern.
Avoiding leakage
Check the fit regularly: Your stoma may change in size during the weeks and months after surgery. Measuring it routinely and making sure the baseplate opening fits closely around it can help create a better seal and reduce risk of leaks.
Keep the skin around your stoma clean and dry: Clean your skin with warm water and wipes, then allow it to dry completely before applying a new bag. Avoid oily products or soaps that leave residue, as these can affect how well the adhesive sticks.
Use accessories, if helpful: Barrier rings, strips, or paste can help smooth out uneven areas and improve the seal. If your stoma is flush with the skin or sits in a fold, a convex baseplate may be beneficial. Your stoma nurse can guide you on what’s best for you.
Empty your bag regularly: Avoid letting your bag become too full, as extra weight can put pressure on the adhesive and increase the likelihood of leaks.
Take your time: Rushing a change can lead to poor adhesion. Taking a little extra time and applying gentle pressure to the baseplate after fitting can help ensure a secure, reliable seal.
Being prepared can give you peace of mind
* Carry spare supplies
* Keep a change of underwear or clothing if it reassures you
* You may like to use a discreet bag to store your kit
If leaks continue, speak to your stoma care nurse, who can help you find a better-fitting product or help you with your technique.
The skin around your stoma should look much like the rest of your abdomen. If it becomes red, itchy, or sore, it’s often due to urine coming into contact with your skin.
* Ensure your pouch fits snugly around your stoma
* Change your pouch promptly if there is any leakage
* Use products recommended by your stoma nurse to protect your skin
Don’t struggle on with sore skin. Problems are common and very treatable with the right advice.
Because your urostomy is created using a piece of your bowel, it will naturally produce mucus. This can appear as cloudy strands in your urine, and is completely normal.
Drinking plenty of fluids can help keep your urine flowing and reduce mucus build-up. However, if you notice a strong smell, fever, or discomfort, it could indicate an infection, so speak to your stoma nurse promptly.
Following urostomy surgery, the changes in your body may leave you more susceptible to urinary tract infections (UTIs). In most cases, infections are mild and short lived, but they can sometimes become debilitating, affecting your quality of life. Not everyone will get a UTI so don’t worry too much, just be mindful.
Signs of a UTI include cloudy or strong-smelling urine, fever, or feeling unwell. If you notice these, contact your GP.
Helpful habits
* Drink enough fluids (usually around 1.5 – 2 litres daily, unless advised otherwise)
* Empty your bag regularly
* Maintain good hygiene when changing your appliance
Your stoma has many tiny blood vessels, so it is not unusual to see specks of blood when cleaning it. This is quite normal. Bleeding may also occur if your urostomy pouch is rubbing against your stoma, so take care as ulceration of your stoma may develop.
If you find your bleeding is excessive, seek medical help as soon as possible, as one of your large blood vessels may have been damaged. If the bleeding is coming from inside your stoma, do get this investigated urgently. Sometimes urine infections, and stones, can cause slight bleeding.
After your surgery, it’s normal to feel a range of emotions. Relief, frustration, fear and even grief are completely natural.
Adjusting emotionally is just as important as your physical recovery, and you don’t need to go through any of this alone. Share your feelings with trusted family or friends. You can also talk to your stoma nurse or GP, and please remember that the Urostomy Association is here for you too, however you may be feeling.
Many urostomates find comfort in connecting with others who have been through the same experience. We can put you in touch with one of our friendly volunteers in your area. Talking your feelings through with someone who truly understands because they have been where you are can make a big difference.
A final thought
Confidence comes with experience, and chances are, you’re doing better than you think. The early days after surgery can feel full of ‘what ifs’. But with patience, and over time, you’ll find yourself thinking, “I can handle this.”
