Frances started having problems with her health at the age of 35 when she was pregnant with her daughter. She was later diagnosed with multiple sclerosis. About 5 years later, around 1986, when she was aged 40, she was fitted with a suprapubic catheter.
Frances started having problems with her health at the age of 35 when she was pregnant with her daughter. At this point, her symptoms felt like those of a stroke she had no use of one side of her face, no balance when walking, and slurred speech. She suspected she had multiple sclerosis (MS) and was diagnosed when her daughter was about a year old.
MS is a disease affecting the central nervous system (the brain and spinal cord). One of the worst symptoms was incontinence, which affected Frances self-esteem. Frances would often wet herself and wore pads for some time. She was prescribed a tablet called oxybutynin to help stop bladder spasms but said the side effects were grim’ and included a dry mouth, gagging and choking, and dry eyes. The tablets did not stop her bladder spasms.
When Frances GP referred her to a urologist, she was fitted with a suprapubic catheter. This was around 1986, when she was about 40. Frances knew little about suprapubic catheters at the time and felt awful after the operation when she thought about spending the rest of her life with a leg bag of urine strapped to her leg.
After a while, Frances started to wear her leg bag very neatly inside her trousers by her waist. She had a bag with no tube, a short catheter and very little piping. The bag doesn’t show and she is able to wear tight jeans, shorts and skirts. She wears the same bag overnight. Frances said her catheter has not given her any problems in terms of having sex or her periods, and she has also been swimming.
Frances prefers silicone to latex catheters and has hers changed by a district nurse every 4 or 5 weeks because of overgranulation around the catheter site. At the time of a catheter change, Frances uses a spray called Savitex. This is prescribed by her GP and helps stop spasm. She changes her bag every 5 days. She said that the catheter had been a Godsend, and it’s made a big difference to my life.’ Frances occasionally gets a urinary tract infection (UTI) and has been prescribed antibiotics by her GP to keep at home for when she needs them.
Frances has secondary progressive MS, which has slowly progressed over the last 30 years. She has poor bowel control and takes medication for this. She exercises regularly, though can get very tired. She said she takes a medicine called Low Dose Natroxene (LDN) and this has helped her MS to progress less quickly. She buys it privately and found out about it on an MS online forum about 3 years ago. She also takes a high dose of vitamin D.
Day to day, Frances makes sure she goes out on her mobility scooter whatever the weather’ and keeps as active as she can. Walking can be difficult and she has lost feeling in her left hand because of the MS.
Frances said she was happy with the care she’d had from district nurses. She advised other people with MS to find out about the benefits of LDN and high dose vitamin D.
SOme time after her interview, Frances said that she came across a supplement called D-Mannose. She felt it has helped in preventing UTI’s and said she would strongly recommend it to other people.