Faye
In 2007 Faye became ill and found it impossible to pass urine. She had intermittent catheterisation until 2009, when she had an indwelling urethral catheter for a while. She now has a suprapubic catheter. Faye often has urine infections and feels unwell.
When Faye was aged 24 she became ill, with fever, sickness and abdominal pain. She found it very difficult to pass urine. She was admitted to hospital where a urethral catheter was passed to release the urine. Intermittent catheterisation continued while she was in hospital for those six weeks. She had many investigations; including MRI scans, CT scans and blood tests, but doctors didn’t have a diagnosis.
Faye was sent home after six weeks, but still found it impossible to pass urine, so had to go back to hospital. She tried self catheterisation, but found this very difficult because of other problems, such as arthritis in her knees. Faye went home and managed self catheterisation once a day, but eventually the continence nurse arranged for the district nurse to call twice a day to pass the catheter. During this time Faye often had to go back to hospital with suspected urine infections, which caused fever and sickness.
One day Faye decided to visit her brother in Scotland, so asked for an indwelling catheter. She had a urethral catheter for a while but hated it, partly due to its position, and partly because she kept expelling it and it had to be replaced about every three days. After about six months Faye suspected that the nurses got fed up with having to replace the catheter. They arranged for her to have a suprapubic catheter. Faye wasn’t involved in the decision making process and thinks that it all happened too fast without enough time for explanations. She doesn’t remember being given any information about catheters.
After the operation to insert the suprapubic catheter Faye went home again. Since then she has had numerous urine infections and finds it hard living with a catheter. She often feels ill which makes her tired and depressed. She takes oral antibiotics all the time, and quite often ends up in hospital having intravenous antibiotics too. She also takes Buscopan® to prevent bladder spasm.
Faye finds it hard to get doctors to listen to her. In the out-patient clinic they seem to be in too much of a rush. However, she says that her consultant does spend time with her when she is an in-patient on the ward. Faye’s catheter sometimes gets blocked, so she has weekly bladder washouts at the hospital. She goes to the local hospital to have it changed every 4-8 weeks. She changes the valve at the end of the catheter every week.
Faye has had other investigations, such as urodynamic investigations, tests that assess the function of the bladder. Most urodynamic tests focus on the bladder’s ability to hold urine and empty steadily and completely. Faye has also had more MRI scans, and doctors have found something abnormal on her spinal cord, but they are not sure if this is related to her urinary problems. Faye is going to be referred to another hospital to see another urologist for a second opinion and for advice. The continence nurse will go with her to give her support. Faye also finds support from family, friends and contacts she has made on Facebook. She has had to give up work due to ill health which she finds upsetting. She receives incapacity benefit, but finds life a struggle.