John Y
John has spastic tetraparesis of unknown origin. Just over a year ago he developed urinary problems. He had a urethral catheter for a few days and then decided to have a suprapubic catheter, which he likes. He has had very few problems with this catheter.
John has spastic tetraparesis of unknown origin. People with this condition have progressive muscle stiffness (spasticity) and an abnormal weakness in all four limbs. They often have bladder problems. John has had to use a wheelchair for the past four or five years and also has limited use of his arms.
About 2 years ago, at the end of 2009, John found that he was straining to pass urine. He also had urgency of micturition (he had to find a toilet very quickly) so he started using a Conveen (a device that looks a bit like a condom and which collects urine), which he found helpful. John did not know if his bladder problems were due to his neurological condition or due to an enlarged prostate.
Then about 13 months ago, in late 2010 John found that he could not empty his bladder completely. He tried to solve the situation by drinking more fluids, but his bladder became painful and distended. He had to call the emergency doctor. John tried to pass urine again three hours later, but again couldn’t manage it so a nurse came to the house to pass a catheter. The urethral catheter was left in place. The nurse didn’t explain how the catheter could be fixed to the leg so it was dangling and pulling and John found it most uncomfortable.
A few days later John went to see an urologist who thought that John’s problems were due to bladder neck spasm. He suggested that John should have a suprapubic catheter. That day another doctor inserted a silicone suprapubic catheter. It was left to drain continuously. At that stage John was told about the flip flow valve, but its use in stretching the bladder at regular intervals was not explained to him. No investigations were carried out.
Now John wishes that he had tried a flip flow valve because he fears that his bladder is now very small and that perhaps it has some scar tissue. As soon as he has about 70 ml in his bladder it feels uncomfortable. He wishes he had had been told about the significance of the valve and that he had had the opportunity to turn off the valve once a day so that his bladder could stretch regularly.
For about 12 months John did not have any urinary problems and he was very pleased with his catheter. Having a catheter made him feel more relaxed. However, during the past month he has had one partially blocked catheter, which had to be changed by the district nurse, and he fears he may have had a mild urinary infection at the moment but is not sure.
John’s first two suprapubic catheters, which were inserted by hospital staff in the out-patient department, were made of silicone. Since then size 14 catheters have been inserted by the district nurse and are made of latex. They are changed about once every 8-10 weeks. John changes his leg bag once a week. He has a new night bag each night.
John thinks that all the treatment that he has had with the NHS has been excellent. However, he would like to have had more information about catheters and their care.