佐伊，24岁，来自牛津郡和北安普敦郡边境，她告诉《膀胱和肠道社区》，有一天她突然出现了尿潴留，福勒综合征的诊断如何改变了她的生活。
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My name is Zoe and I have had Fowler’s Syndrome since January 2016 (diagnosed 2017) at the age of 18.
Growing up, before Fowler’s Syndrome, I was a National Gymnast who competed all over the UK. I have always been an ‘adrenaline junkie’ and lived life at 100mph! As an adult, I regularly attended adult gymnastics and trampoline parks! Although I was nowhere as strong (or as healthy) as I used to be, I was still as fearless as when I was a child doing gymnastics!
福勒综合症让我失去了这个机会。想到我可能再也不能翻跟斗了，我真的很难过!现在我每周都带女儿去练体操，看到她如此享受这项运动，我的老教练们指导她，我感到非常高兴!
一种突然的、痛苦的想小便的冲动出现了，但我无法排空我的膀胱。我开始慌了!
我的福勒综合症之旅开始得非常突然。之前并没有发生什么重大的事情。在我成长的过程中，我有过几次尿路感染/肾脏感染，但都没有导致我出现完全的尿潴留。虽然我总是害怕“憋”几个小时!
I woke up in January 2016 and I didn’t need my usual morning wee! As the day went on, I still had no urges until about 6pm. A sudden, agonising urge to wee came, but I couldn’t empty my bladder. I ran a small bath, had a tap running, but nothing helped. Then I started to panic! I called 111 and explained the situation. They told me to go straight to A&E.
当我到达的时候，我被直接带到急救室，一个护士进来准备给我插导尿管。她被叫走了，四个小时都没回来!当她回来时，她对我说(我记得这一刻非常清楚!)，“我们喜欢给年轻人看导尿管，等一会儿，因为它通常会吓到人们，他们会突然小便!”我已经等了四个小时了，现在还在苦苦等待，痛苦极了!最后，他们把我送到了“下班时间”的医生那里。我又等了一个小时才被看见。
I remember begging him to catheterise me. He drained over 2 litres.
When I was called in, the male Doctor said he didn’t want to catheterise me without a female chaperone, who was currently doing community visits.
I remember begging him to catheterise me, which he finally did. He drained over 2000mls (2 litres). The relief was incredible and the doctor was in shock with how much he’d drained, telling me he’d never drained so much urine before! He fitted me with a Urethral Indwelling Catheter that I had in situ until May 2016.
我的全科医生拜访了我，关于我的记忆(另一个我永远不会忘记的时刻)，我被直截了当地问:“你吃什么药?”你服用氯胺酮了吗?女孩不会突然失去小便的能力……”但事实并非如此，我离开时太害怕了，不敢告诉妈妈我在留校读书，因为我想她也会认为我吸毒了。等待泌尿科的转诊真的是一段与世隔绝的时间。我经历了几个星期的痛苦和尴尬，直到我告诉了我妈妈发生了什么!
I had my first Urology appointment and was booked in for a cystoscopy. On the day, they performed the cystoscopy, dilated my urethra, removed the indwelling catheter and I was told I have a ‘large saggy bladder’. I was discharged with three boxes of Intermittent Catheters and a google print out on ‘how to self-catheterise’.
不久之后，我被安排去做了一个视频尿动力学测试。一到医院，医生就来了，他对我和妈妈说:“我今天不想做这个检查了。”我推荐你去伦敦。我觉得你得了"福勒综合症"他们会想自己做这个测试。这个医生今天还是我的本地医生!
In January 2017, I had my first appointment in London. A handful of tests (including a video urodynamics) were performed over the coming weeks. Although these tests were briefly uncomfortable, they were over fairly quickly. Over the next few months I fell pregnant with my son. All appointments were postponed and unfortunately took a while to be re-booked in. When I had that appointment, my consultant suggested Sacral Nerve Stimulation. But by this time, I was pregnant with my daughter. My next appointment was January 2020 and we booked in to have my SNS in Summer.
我的骶神经刺激器试验进展顺利，两周后我植入了永久性装置。在恢复的过程中，我挣扎在设备上的设置，电池位置有一种可怕的疼痛。在这段时间里，我和医院进行了惊人的交流，我们决定让我在SNS电池周围注射类固醇，并进行尿道肉毒杆菌注射。在接下来的几个星期里，肉毒杆菌毒素对我有很大的帮助(让自我导尿管插管更舒服了)，但它的持续时间很短，SNS带来的疼痛加剧了。该设备于2021年2月移除，我于2021年3月在当地插入了耻骨上导管(SPC)。
I was given the choice of having a mitrofanoff or an ileal conduit (2 types of major urinary diversion surgery). I am now waiting to have a mitrofanoff in Spring 2022. Until then, I have a cystoscopy and my SPC changed under General Anaesthetic every 4 weeks.
有两个年幼的孩子对我帮助很大。它们给了我每天早上“开始行动”的目标。
Due to my deteriorating health, I have been struggling with my physical and mental health a lot more than usual. I am extremely fortunate that I have an incredible bubble of family and friends around me. I live in a very happy home with my partner; James and our two cheeky children; Leo and Rosie. Having two young children has massively helped me. They give me a purpose to ‘get going’ every morning.
I have recently had a few hospital admissions for days / weeks at a time and the hardest thing about being in hospital is that I cant be a ‘mum’ to my children. Due to Covid19, hospitals don’t allow visitors on the ward. When the children do visit, it breaks me! I have to remind myself that everything is temporary and when I have a mitrofanoff, my quality of life will hopefully improve, massively!
I’m very open about having Fowler’s Syndrome and how it effects my day-to-day life.
I’m very open about having Fowler’s Syndrome and how it effects my day-to-day life. I try and be as transparent to my work as much as possible. I currently have two jobs; I work at a school and I am a community care giver. Both employers have been incredibly supportive.
Although my anxiety goes through the roof whenever I get a surgery date, or an emergency arises and I need to let work know, knowing that I’ve always been honest with my employers helps massively.
Recently, my life has turned upside down. I’ve been unable some days to get out of bed. Work has been minimal, due to an ongoing infection since November – which I hate as I love to work!
我不能成为我想成为的妈妈(当我说到/想到那件事的时候，我马上就心碎了)。然而，当症状和感染得到控制时，情况会很好!我们喜欢外出，伦敦是我们最喜欢的地方之一。我们喜欢去剧院，但我总是有一定程度的焦虑，以防症状突然发作。
如果你感觉没有被倾听，要求看另一个医生。
My biggest advice for someone who’s showing symptoms is push, push, push your local services to investigate! There are a huge variety of symptoms with Fowler’s Syndrome. No two patients are identical. If you don’t feel heard, ask to see another doctor. No doctor likes a ‘Dr Google diagnosis’, but my mum had essentially diagnosed Fowler’s Syndrome before it was ever mentioned by a doctor!
Further Information
导尿管生活有时会让人感到不知所措，这就是为什么膀胱和肠道社区推出了导尿管护理指南，帮助回答你可能有的那些棘手的问题。世界杯2022外围预选赛直播在社交媒体上关注#导尿管周的对话，并参与你可能有的任何评论。
Download your世界杯2022外围预选赛直播导尿管护理指南。
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