Living with VACTERL Association
Urethral Catheterisation in Adults Born with Anorectal Malformation
People born with Anorectal Malformations who also have nerve-related bladder problems need lifelong monitoring to keep their kidneys healthy. The aim is to protect the kidneys and the tubes that carry urine from them.
If the bladder cannot store urine properly or does not empty fully, pressure can build up inside it. This pressure can push urine backwards toward the kidneys, causing swelling and, over time, damage.
When the bladder does not empty properly, urine can sit inside for too long, allowing bacteria to grow more easily. This increases the risk of repeated urine infections, which can further harm the kidneys.
Another problem that can occur is vesicoureteric reflux (VUR), where urine flows backward from the bladder toward the kidneys. Even if it does not cause obvious symptoms, it can increase the risk of infections, kidney scarring, high blood pressure, and long-term kidney problems.
For these reasons, careful bladder management and regular check-ups are essential to detect problems early and prevent long-term kidney damage.
Management is usually non-surgical at first.
This includes clean intermittent catheterisation (regularly emptying the bladder using a small tube), medicines called anticholinergics that relax the bladder and reduce pressure, and sometimes botulinum toxin (Botox) injections into the bladder to help it hold urine at lower pressure.
If these treatments are not enough, surgery may be considered. This can include enlarging the bladder (bladder augmentation) or creating a special channel that allows the bladder to be emptied more easily.
Monitoring your health
Regular monitoring is very important. Healthcare providers will ask about symptoms such as urine infections, blood in the urine, or pain in the lower back or sides.
A urine test is often done to check for infection, blood, or protein. These symptoms may sometimes indicate repeated infections or a blockage in the urinary system.
Checking your blood pressure
Blood pressure is regularly checked because high blood pressure can damage the kidneys over time. Detecting and treating it early helps protect kidney function and reduces the risk of long-term kidney disease.
Blood (laboratory) tests
Blood tests are used to check how well the kidneys are working and whether the body is maintaining the right balance of fluids and minerals.
Imaging tests
Imaging helps doctors look at the structure and function of the kidneys and urinary system.
This may include:
-
Renal ultrasound: to check kidney size and look for swelling or blockage (hydronephrosis)
-
Voiding cystourethrogram (VCUG): used if backward flow of urine (reflux) is suspected
-
CT scan or MRI: in selected cases for more detailed imaging
-
DMSA or MAG3 scan: specialised scans that show how well each kidney is working and can detect scarring or blockages affecting urine flow.
Red flags in renal care
It is important to watch for warning signs that need immediate medical attention. Seek care right away if you notice:
-
Sudden decrease in urine output.
-
Persistent pain or swelling in your sides or back.
-
Repeated fevers with urinary tract infections.
-
New high blood pressure.
-
Symptoms such as unusual tiredness, ankle swelling (oedema), or nausea may indicate that kidney function is worsening and should be evaluated promptly.
Key clinical principles:
-
Clean Intermittent Catheterisation (CIC) involves passing a small, clean tube into the bladder several times a day to empty urine fully. It helps reduce the risk of urine infections compared to leaving a catheter in all the time.
-
It also prevents the bladder from becoming too full or overstretched.
-
Indwelling Urethral Catheter - may be used when CIC is not feasible
-
Suprapubic Catheter (SPC) - often preferred over long-term urethral catheter
-
Every person’s anatomy may be different, especially in those with Anorectal Malformations, so care needs to be planned in advance.
-
Protecting kidney health is the main priority, as long-term bladder problems can damage the kidneys if not managed well.
-
Good understanding and cooperation with treatment is very important, including learning how to manage the bladder properly and following the care plan consistently.
Further information
DISCLAIMER:
By using our website you acknowledge that you are accessing information and peer support only and not professional medical healthcare advice.
If you are unsure about any aspect of your health or treatment, please consult a healthcare professional immediately.