Charles
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Charles was diagnosed with multiple sclerosis (MS) in 1986. From about 1996 he had problems with his bladder, finding it hard to control urination. Initially his doctor gave him oxybutynin and Desmotabs®. Then in 2005 Charles started intermittent self catheterisation, which he did about three times a day, and which he found very helpful and quite easy.
Then in 2009 Charles developed brachial neuritis, which meant that he had poor dexterity and which made it difficult for him to pass the catheter. One day he damaged his urethra and had to go into hospital. There he tried a Conveen®, a condom (sheath) catheter, but did not find that very satisfactory. He had a few "accidents" with urine in his bed and at that point his doctor suggested a suprapubic catheter.
Charles now has a suprapubic catheter, with a leg bag, which he changes once a week. He has a flip flow valve, which he says makes life easier because he can shower without the bag. Using the flip flow also means that his bladder has to expand and contract on a regular basis. His consultant recently suggested that he should change his bag twice a week and the valve once every two weeks. The suprapubic catheter is changed every 12 weeks, but his consultant has recently suggested that it should be changed more often.
Charles has never had a blocked catheter, but he sometimes has urinary infections. He manages these by drinking about four litres of water a day. He sometimes takes the antibiotic called trimethoprim, especially when he has his catheter changed. He has tried another antibiotic called nitrofurantoin, but he has had side effects after taking this drug and once had to be hospitalised with breathing difficulties. Since then he has also taken flucloxacillin, which cleared up the infection but which gave him diarrhoea.
Charles is glad to have a catheter because it has given him the freedom to go out with his wife. However, he understands that having a catheter may lead to problems and might even shorten his life, and he would like to have more follow-up care from a specialist on a regular basis. In December 2011 he saw an urologist who ordered an ultrasound scan of his bladder and kidney area, to make sure that there was no back flow of urine.
In January 2012 Charles also had a cystoscopy under general anaesthetic, to make sure his bladder was healthy. The urologist also cleaned out his bladder. At the same time the urologist did a "re-bore" of Charles' urethra, to make it wider. Charles plans to try to pass urine via his urethra so that one day, if technology makes it possible, he can live without his suprapubic catheter.
Over the years Charles thinks that he has had good medical treatment (some privately), but he has not received enough information. He has had to find most of the information about his catheter and care of his catheter from the internet. He also feels that there should be someone responsible for his on-going care, and that health professionals should spend more time on chronic conditions, rather than waiting for acute problems to arise.
Charles had problems with the condom catheter coming off and leaking. He tried it for 2 or 3...
Charles had problems with the condom catheter coming off and leaking. He tried it for 2 or 3...
So I needed a collection method of urine, otherwise I would be wearing nappies or something like that all the time.
Charles said ISC is nothing to be frightened of. It’s important to have the right size catheter....
Charles said ISC is nothing to be frightened of. It’s important to have the right size catheter....
So once you get in the flow it’s not difficult and one shouldn’t be frightened of it. It’s not, I know people will be frightened because it’s inserting foreign bodies into probably a very sensitive place. But actually you don’t feel a lot. Because the catheters are self-lubricated, so you don’t feel a lot.
Charles, who has multiple sclerosis, was worried about the risks of infections and kidney failure...
Charles, who has multiple sclerosis, was worried about the risks of infections and kidney failure...
Charles has antibiotics at home in case of a UTI. He had a recurring infection after a catheter...
Charles has antibiotics at home in case of a UTI. He had a recurring infection after a catheter...
Charles has never had a blocked catheter and puts this down to drinking lots of fluid. He...
Charles has never had a blocked catheter and puts this down to drinking lots of fluid. He...
Having a suprapubic catheter fitted was ‘very simple’. Charles decided early on to have a flip...
Having a suprapubic catheter fitted was ‘very simple’. Charles decided early on to have a flip...
Charles’ wife cleans his catheter site at least once a day with saline solution and a single use...
Charles’ wife cleans his catheter site at least once a day with saline solution and a single use...
Charles’s urologist wanted him to have his suprapubic catheter changed more often than every...
Charles’s urologist wanted him to have his suprapubic catheter changed more often than every...
So he’s suggesting that the catheter be changed more often. And we have talked about it and I need to, I’m probably going to email him in the next, well, next few days to actually to say, “Well, how often?”, you know. “Tell my GP that the district nurse needs to do it, every, you know, six weeks, two months, rather than every three months.”
Charles described how the district nurse changed his suprapubic catheter. It was usually ‘a very...
Charles described how the district nurse changed his suprapubic catheter. It was usually ‘a very...
Charles orders his catheter equipment on the internet. He was told very little at the hospital...
Charles orders his catheter equipment on the internet. He was told very little at the hospital...
If the Foley catheter has been used for over 50 years, Charles said it can’t be a bad design....
If the Foley catheter has been used for over 50 years, Charles said it can’t be a bad design....
Charles described a ‘serious lack of information’. He didn’t know that it was a good idea to have...
Charles described a ‘serious lack of information’. He didn’t know that it was a good idea to have...
Taking responsibility to look after the catheter is important, including cleanliness and drinking...
Taking responsibility to look after the catheter is important, including cleanliness and drinking...