Managing major urinary problems that do not respond to treatment

Managing major urinary problems that do not respond to treatment

If you have a major urinary problem (such as incontinence or a related worsening kidney problem) that cannot be managed with other treatments, your healthcare professional may offer you an operation called 'ileal conduit diversion' (also known as urostomy). This operation creates a new route for urine to pass from the body, avoiding the bladder. The tubes from the kidneys to the bladder (the ureters) are linked directly to the outside of your body, so the urine can be collected in a pouch without flowing into the bladder.

Your healthcare professional should discuss with you the option of having your bladder removed at the same time to help prevent problems with waste matter building up in the bladder.

Questions about the treatment

  • Why have you decided to offer me this particular type of treatment?

  • What are the pros and cons of having this treatment?

  • What will the treatment involve?

  • How will the treatment help me? What effect will it have on my symptoms and everyday life? What sort of improvements might I expect?

  • How long will it take to have an effect?

  • What other treatment options are available?

  • How long will I have to take the medication?

  • How often will I have to have bladder injections?

  • Are there any serious side effects or risks associated with this treatment?

  • What should I do if I get any side effects?

  • Are there any long-term effects of taking this treatment?

Possible complications related to your urinary problem

Your healthcare professionals should discuss with you and/or your family or carers that you may be at increased risk of the following problems. Your healthcare professional should tell you and your family or carers which symptoms to look out for and when to see a healthcare professional.

Kidney problems

Your healthcare professional should discuss with you the risk of kidney problems such as kidney stones, hydronephrosis and scarring, particularly if you have spina bifida or spinal cord injury. You should look out for symptoms such as loin pain, urinary infections or blood in your urine.

Your healthcare professional should discuss with you that people using urethral catheters may be at a higher risk of developing kidney problems than people whose bladder problems are managed in different ways.

If your healthcare professional suspects you have symptoms of a kidney problem, an imaging scan should be used to check your kidneys.

Bladder stones

Your healthcare professional should discuss with you the risk of bladder stones. You should look out for symptoms such as repeated urinary infections, repeated catheter blockages or blood in your urine.

Your healthcare professional should discuss with you that people using indwelling catheters have a higher occurrence of bladder stones compared with people whose bladder problems are managed in different ways.

If you have symptoms of bladder stones you should be referred for a procedure called cystoscopy, in which a thin telescope is passed along the urethra into the bladder. This allows the healthcare professional to view inside the bladder and check for the presence of stones.

Bladder cancer

Your healthcare professional should discuss with you the risk of bladder cancer, particularly in people who have had urinary problems for a long time or have other factors such as repeated urinary infections. You should look out for symptoms such as blood in your urine.

You should be referred for urgent urinary imaging scans and cytoscopy if you have blood visible in your urine or an increase in the number of urinary infections or other unexplained urinary symptoms that may need further investigation.

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