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Susannah Fraser
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Bladder Health UK
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https://inews.co.uk/news/health/cystitis-bladder-removal
Zara Bough’s painful bladder condition has left her bedridden for months. Claudia Tanner 3 weeks Thursday May 10th 2018 Zara Bough, a 32-year-old woman from Oxfordshire, has shared how she has chosen to have her bladder removed after interstitial cystitis drove her to try to take her own life. She has suffered with agonising pain and has needed to go to the toilet up to 60 times a day since she was a teenager. The chronic condition, which causes the bladder to swell, caused her to be completely bedridden for three months and often leaves her unable to walk without the use of a stick. The condition has severely affected her life She says having interstitial cystitis has caused her depression, forced her to give up her social life and a career working with children and made relationships impossible.
After the annual operations to stretch her bladder she had for a decade stopped being effective, the bakery worker says her increasingly debilitating symptoms led her to opt for the drastic surgery. The procedure will create a replacement bladder from a section of her bowel. A catheter (a thin, plastic tube) will run from the new bladder (called a neobladder) to the skin of her stomach to allow her to pass water, appearing like an extra tummy button. The 32-year-old says interstitial cystitis left her needing antidepressants. Zara says the operation was a “last resort” and is hoping the major operation will give her her “normal life” back. She is now speaking out in a bid to remove the stigma of living with a bladder problem. Zara, from Banbury, told i: “Interstitial cystitis is such a little-known condition. It’s nothing like the common bacterial cystitis many women get.
“Living with it is very isolating and lonely. I felt embarrassed and kept it a secret for years but now I want more people to be aware and understanding of what living with the condition is like. “I’m scared of the operation to remove my bladder and when I first found out about it I was horrified. But things have got so bad now it’s my only option and I’m excited at the thought of having a normal life.” Life wasn’t worth living Zara had suffered with bladder control problems since she was a toddler but doctors dismissed them as a normal part of growing up. But when she was 13 she began experiencing severe pain that left her in tears. After years of tests, she was finally diagnosed aged 21 with interstitial cystitis, also known as painful bladder syndrome, which affects an estimated 400,000 people in UK, the majority women.
The disease causes chronic inflammation or irritation of the bladder wall, resulting in intense pelvic pain, sudden, strong urges to pee, needing to pee more often than normal and waking up several times during the night to go to the toilet. Zara managed to achieve a degree in childhood education but had to give up her nursery job because rushing to the toilet so often meant she couldn’t supervise children properly. She tried multiple instillations – drugs that are introduced into the bladder by catheter – but they failed to provide relief. Zara says the debilitating condition has forced her to give up pole dancing. Over the years her condition deteriorated to the point she felt life wasn’t worth living. “I used to go pole dancing and I travelled a lot, but now it’s so bad it’s a major struggle going to the shops,” she said. “I’ve lost a lot of friends because I miss out on social events. I can’t date anyone because I can’t do the things they want to go out and do. Sex is painful too.
“Last year it all got too much for me and I attempted suicide because I felt I just couldn’t go on like this.”
What causes interstitial cystitis? The exact cause of interstitial cystitis isn’t clear, unlike other types of cystitis. Several theories about the possible cause include: Damage to the bladder lining, which may mean urine can irritate the bladder and surrounding muscles and nerves. A problem with the pelvic floor muscles (used to control urination). Your immune system mistakenly attacking your bladder. An allergic reaction. Source: NHS Direct Hope for the future Zara is now on the waiting list for the procedure, called a cystectomy with a Mitrofanoff procedure.
She also hopes people will change their attitudes towards people with “invisible illnesses”. “I can’t go out of the house unless I plan and know where I can access a toilet. I have a ‘Just Can’t Wait’ Card provided by the charity Bladder Health UK yet people can still be so rude. “I’ve been refused to be allowed to go to the toilet in shops and other people queuing in toilets have told me ‘Well I need to go to the loo too.’ “I work at Co-op Bakery and luckily my boss has been amazing and allows me time off when I need it. “Hopefully my new bladder will mean a new life.” For support with bladder problems, visit Bladder Health UK or call the helpline on 0121 702 0820.
Read more at: https://inews.co.uk/news/health/cystitis-bladder-removal
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