Mum opens up about living with infection – and the risks of having sex
A MUM has spoken of her determination to help others through online support groups, despite battling a rare condition that leaves her dicing with death whenever she and her husband make love.
Sam Deakin, from Porthcawl, has Fowler’s syndrome, which makes it difficult or impossible to pass urine because the sphincter muscle in the bladder cannot relax.
It has seen her go from one extreme – where she would pass water 16 times a night – to needing assistance to go at all.
She currently has a catheter, a tube passed into the bladder to drain urine, and if she and her husband Edward, 35 – who she started dating at 14 and is now her carer – have sex, she risks being hospitalised with a life-threatening infection.
She said: “My husband looks after the kids and he is my carer too – he changes my catheter and sorts out my medication and he does all the housework that I can’t do.
“I take my hat off to him. It’s not easy for people to see their partners like this. Not every couple gets through it.
“Edward has been my rock, supporting me mentally and physically. His humour keeps me going and he still compliments and flirts with me despite all of this – which keeps the spark going between us.”
For Sam, 34, who despite her condition continues to run the family business with Edward, difficulties with intimacy are just one of the many side-effects of Fowler’s, which typically hits women in their 20s to 40s.
“I’m never without an infection. My body is always fighting,” she said. “Most work. I was living most of my life pain-free and weeing three times a day.
“To have no pain was wonderful. That was the best year of my life, before it started going downhill again.”
Sadly, a year later, the SNS stopped working properly and Sam now believes its malfunction was because of another rare medical condition, EhlersDanlos syndrome (EDS) – which weakens connective tissues and causes increased movement in the joints – which she was subsequently diagnosed with.
In April 2019, the SNS was deactivated and a catheter was secured to the side of her body and attached to a collection bag, strapped to her leg.
“There is an infection constantly brewing,” said Sam, who takes 48 tablets daily to manage her condition.
“Every day is a battle. At any moment, the infections can turn septic. It’s like a game – you have to reach the hospital before you get sepsis, which is a sometimes deadly reaction to an infection, and things can change very quickly.
“My normal life is different to everyone else’s. I wake up around midday, as I only fall asleep at 3am or 4am – which doctors have advised me to keep the same, as changing my routine could make me sicker.”
Her illness is also extremely costly as Sam says she has spent about £20,000 looking for answers privately, and travelling to and from the National Hospital for Neurology and Neurosurgery in Holborn, central London, for her regular appointments.
And, until she gets a new SNS device fitted in April, she risks being hospitalised with a life-threatening infection if she has sex.
“Without the SNS, I have no sexual function either,” she said. “I can’t feel anything when we make love, so we’ve learned to abstain.”
Also reliant on laxative medication to empty her bowels, in December 2019 she collapsed outside her office as they were dangerously full.
She said: “I went into work to check on our staff and I started to feel funny. It was about 20 minutes between starting to feel unwell and me collapsing outside and being rushed into hospital.
“I was told that my bowels had been about to explode. They were full and I had a severe water infection. Doctors called in my family and I thought I was dying.”
Thankfully, Sam survived, but says her life is littered with medical traumas, to which she sees no end.
If nothing improves, she faces having two high-risk operations on her bowels and may need her colon removing completely.
Yet, despite her daily battles – which also include cyclic vomiting, where she is sick 10 times a day for sixweek periods – she is determined to help other with Fowler’s syndrome.
Keen to break the taboo surrounding catheters, she proudly wears shorts and skirts revealing the bag on her leg, although she wraps it in a bandage to conceal the contents and she regularly posts on Facebook support groups for Fowler’s sufferers.
“Sufferers are often labelled the ‘forgotten group’ and I am determined that this will change,” she added.