Rocking Two Stomas…Rachel’s Story

我们中有多少人在年轻的时候试图规划我们的生活?我们给自己设定最后期限;到这个年龄,我将结婚,成为我的事业的顶峰,并有孩子!坦白地说,当我们希望这些计划发生的时候,它们实际发生的频率有多高?

嗯,我的肯定没有,因为我没有在21岁的时候遭遇慢性疾病,这将影响我的人生计划。我经历了一段完全绝望的旅程,现在接受了我的“新常态”,欣赏我的两个气孔的自由;回肠造口术和尿路造口术给了我,也支持了其他处于类似位置的人。

So, when did it start…

10 years ago I was in my 3rd year of University studying Radiotherapy and Oncology at Cardiff, and I got campylobacter (food poisoning) from cooked chicken purchased from a supermarket. I was very poorly and was in the hospital for 10 days. Little did I know at the time how much this event would change my life. After 5 months it left my system, and I was allowed to go back on clinical placement and by some miracle managed to qualify and get a 2.1. I got a job in Bristol Oncology Centre as a Band 5 Therapy Radiographer treating cancer patients.

It was here I started suffering from many urinary tract infections that kept recurring. It wasn’t long until I was in full retention and I was unable to empty my bladder. I didn’t know what was going on, I was desperately trying to make my bladder empty but it wouldn’t. I was taught to self-catheterise (ISC) and struggled to do this working in a busy department. I found the clamping difficult and was still in retention. It wasn’t long until my specialist nurse decided to give me a urethral catheter. This was even harder to continue working and being active. It wasn’t long before I had to leave my dream job and I felt like a failure. This catheter was then changed to a Supra-Pubic Catheter (SPC) which was easier, but I still struggled with severe bladder spasms.

While this was going on my bowel also started failing, and the peristalsis had halted completely. I was extremely constipated, and even with interventions and Peristeen Irrigation this still did not work.

At the time I had no idea why my body was not working, and neither did the consultants. It took 5 years to get a diagnosis and 5 years of me thinking this was all in my head. I think that was the worst part of this journey not knowing why your organs are failing. Eventually, I got diagnosed in a specialist London hospital with Autonomic Neuropathy – in particular, Pure Autonomic Failure which may have been triggered by the campylobacter food poisoning.

In 2012, I was 24/25 my Peristeen specialist nurse said enough was enough and I needed a long-term option. She couldn’t understand why this was not working and spoke to my surgeon. I had a marker test which revealed severe slow transit, and the markers had not moved at all. Within 2 weeks I had an ileostomy formed.

当我第一次被告知我将会有一个造口时,我不想听到任何关于它的事情。然而,当我在病房时,我遇到了另一位有气孔的年轻女士,她对我来说是无价的。这是我第一次体会到身份识别的滋味,她分享的技巧是无价的。

Rachel with cake

起初,我发现很难适应这个气孔。手术前,我重7英石,非常瘦。我意识到我的一些疼痛消失了,我开始增加体重,这很聪明,但很困难。6个月后我的造口脱出这本身就是一段旅程8次造口修复手术都失败了。在最糟糕的情况下,我的造口伸出身体外8英寸,但我已经接受手术不再是一个选择。

Hello, stoma number 2…

2015年,我28岁,我做了7年的SPC。我搬到了伯恩茅斯,在植入SPC后我接受了第一次膀胱镜检查。结果显示我的膀胱非常小,受损,活检结果证实细胞发生了突变。我被叫到办公室,让我带一个朋友一起去。在野外工作时,我知道这意味着什么,我很感激我最好的朋友出现了。就在这里,我被告知我的细胞发生了突变,我别无选择,只能切除膀胱,进行泌尿造口术。

That night I was staring in the mirror at my ileostomy and leg bag, and I thought ‘how on earth will I cope with 2 stomas?’ I didn’t particularly like the one I had which was prolapsed, and I felt devastated.

2 weeks later I had the surgery, and all went well. I was in ITU then HDU then I was on the ward. When my stoma nurse first came to change my urostomy it squirted all over her and made me laugh. It was this moment I thought ‘yep me, and you are going to be friends’. I started to see glimmers of hope, gone were the horrific spasms and slowly I began to realise I was actually happy my cells had mutated because finally the offending organ had left my body. After 10 days I was due to be discharged but caught c-difficle off a patient. I was very ill, nearly died had sepsis, TPN feed and had to be in isolation. However 3 months later I left the ward with a smile on my face.

My ‘New Normal’

When I got home, I put my first dress on in 7 years with my legs bare. That feeling was indescribable, and in that moment I vowed to no longer be a victim of my circumstances, to help others and to embrace this second chance of life.
So that is what I did! After that admission, I have been in the hospital a lot with the prolapsed refashion surgeries and in 3 years I have had sepsis 10 times. During my admissions, the nurses would get me to speak to new ostomates and share my story and tips. I loved it and realised there weren’t many people with 2 stomas. This made me feel quite lonely, and at the time I had no idea there was a stoma community online. I felt like I was the only person in the world with 2 stomas. So this was when my blog was born…

So in January 2017, my blog went liverocking2stomasinitially I started this to help new ostomates and to share my experience of living life to the fullest with 2 stomas. However, I had no idea how much my blog would help myself in my own acceptance of my stomas and illnesses. I have met amazing friends and a community I belong in. Before my blog, I had no idea Facebook groups existed, and these groups have been detrimental to my acceptance.

自从博客发布以来,神奇的事情发生了!我支持其他有造口的人,但我现在也是一家造口公司的顾问和慈善机构的志愿者,与顾问一起做研究,开展关于泌尿造口术的活动,并四处发表演讲。3年前,当我陷入深深的绝望时,我无法想象我今天的生活。这真的是我做梦都想不到的。有时候,当我们身处痛苦之中时,退一步,从外部看会有所帮助。

Rachel attending a meeting

Who would believe it that now I have done a 360-degree turn career-wise? I had to give up a career I loved, but now I am back working in that environment but in a completely different capacity…as a patient. I help be a voice for others who may have lost theirs, and I enjoy advocating. I am also an official voluntary Macmillian Cancer Advocate which is extremely rewarding.

有两个气孔,我可以看到不同类型的气孔之间的不同认识水平。当你提到气孔时,大多数人会立刻认为这与便便有关,然而,事实并非如此。当你有一个泌尿吻合术,你会觉得有点被冷落,不仅在公众,而且在医院的设置。已经有了惊人的工作来打破便便的耻辱,但是我仍然觉得关于导尿管,泌尿吻合器和小便有一个巨大的耻辱。当我使用导管时,这是我生命中最糟糕的时期之一,我感到如此孤独,孤立,没有支撑。希望这个问题可以在人们谈论更多泌尿相关问题时得到解决,在使用导尿管和泌尿吻合术时。

I could never have planned that this would have been my 20s, that I would never be able to have children and robbed of my career. However, something magical has happened because the life I have today is truly miraculous. I have been in intensive care many times and nearly died many times, but I am still here fighting. I now love my body more than I ever did before I got ill because I see just how amazing it is. Yes, I have scars and 2 bags on it, but they are my badges of honour. They tell a story of my resilience and strength. Many of us have these badges whether physical or mental.

I honestly am grateful for my 2 buddies they have saved my life and have put amazing people in my path. Where it truly changed for me was when I embraced them and my situation and vowed to help others and life live!

Rachel on holiday