Changing the urology stigma, one splash at a time

October 24, 2015  |   News   |     |   0 Comment

UnknownKatie Strong, a patient at UCLH, has suffered a year of turmoil, with complex bladder issues and life threatening infections, but she aims to help change the face of urology and stoma’s, and beat the stigma attached to these conditions and procedures. Her goal is to help young men and women feel proud of their bodies and how far they’ve come, through surgery. So many young men, women and teenagers are embarrassed about their appearance and the medical products they rely on to manage their conditions, but this shouldn’t be the case in today’s society, this has to change.

Katie went into complete retention, at the age of 18, after suffering from recurrent infections and kidney reflux from the age of 2. She was taught intermittent self-catheterisation which became extremely painful and impossible at times due to urethral pressure and spasms. At the age of 21, Katie made the decision to have the Mitrofanoff Procedure- a continent stoma formed from her appendix, which is attached to her belly button and bladder, so she can self-catheterise via an alternative channel. The Mitrofanoff Procedure completely changed her life and she gained her self confidence back. Katie’s infections had settled down a lot and she was able to drain her bladder regularly and successfully.

In January this year, things took a turn for the worse when a catheter got caught through her Mitrofanoff channel and into her urethra. This caused her bladder to start leaking, both through the channel and into the vagina. After months of being constantly soaked, Katie learnt to control her incontinence with pads and urostomy (stoma) bags over the Mitrofanoff site. Although the bags took some getting use to, Katie learnt to manage her life around my bladder conditions instead of her bladder controlling her life.

During June this year, Katie’s body was completely taken over by a severe blood infection, called MRSA bacteraemia. After previous months of IV antibiotics for repeat urine infections, her bodies immune system was weak and the blood infection was multi resistant. A few weeks after the initial shock of it all, Katie was told by the microbiologist who helped her recovery, that she had a 30% chance of beating the bug and surviving. Katie was on IV antibiotics for a month, and oral antibiotics for a further 2 months, as well as daily injections for an acute blood clot in her arm. This year has been Katie’s toughest battle yet, but she was determined to overcome this fight.

During Katie’s recovery, her husband Mike Strong emailed a Charity in Florida, called Clearwater Marine Aquarium. He knew how much a very special dolphin there meant to Katie, and arranged a trip for her to go to Florida to meet this dolphin, a very rare opportunity with a very famous dolphin. The dolphin’s name is Winter, and her story became famous from the Dolphin Tale Films; these movies are huge blockbuster hits, and even stars Morgan Freeman!!

Unknown-1Winter’s story started at only three months old, when she was found stranded in Mosquito Lagoon, near Cape Canaveral, Florida, having become entangled in a crab trap line which cut off circulation to her tail flukes. After disentanglement, she was transported to CMA for treatment of her extensive injuries. However, despite exhaustive efforts to promote healing, her tail deteriorated and could not be saved. Her story is unusual – most dolphins trapped in monofilament and crab trap lines do not survive. Despite overwhelming odds against survival, Winter’s energy and ability to adapt to her new physical form surpassed expectations. She is the only dolphin in the world to have a prosthetic tail, and without this, she would not have survived.

Katie found so many parallels between Winter’s story and her own. They both rely on reconstructions and plastic to survive; Winter wears hers on her tail and Katie wears plastic on her tummy. Katie told us “we’ve had to adapt to survive but that means we’re special and we should be proud of our ability to adapt against all odds, as should other urology and stoma patients!”. Both Winter and Katie have also had major surgery and a severe blood infection. Katie drew strength from knowing that Winter had overcome this, despite the pain and energy it took, “If Winter could survive when her skin is far more sensitive than mine, I could get through it too”.

To say thank you to CMA for letting Katie meet the dolphin that has carried her through the toughest year of her life, she decided to raise some funds of their cause. She managed to raise $1105 from her hospital bed to help save the lives of other Dolphins and wildlife in Florida; all the money raised helps support their rescue, rehab, release campaign. During her visit she had a video made, reaching out to other young patients with complex urological conditions and stoma’s; she also raised awareness of the support groups that helped her through this year. She finished “I hope that my visit to meet Winter inspires other young women to pursue their dreams and they never give up hope; I want them to feel proud of everything they’ve achieved in life and how far they’ve come”. “Be proud of your story, embrace it, you have nothing to be embarrassed about and all to be proud of. Together we will beat the stigma!!!”

If you’d like to get in touch with Katie, please email the Parnell fund at parnellfund@hotmail.co.uk

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