Rocking Two Stomas…Rachel’s Story

How many of us when we are younger try to map our lives out? We give ourselves deadlines; by this age, I will be married, be the top or my career and have children! In all honesty how often do these plans actually happen when we want them to?

Well, mine certainly didn’t because I didn’t encounter at 21 I would be hit with chronic illnesses that would impact my life plan. I have been through a journey of utter despair to now accepting my ‘new normal’, appreciating the freedom my 2 stomas; ileostomy and a urostomy have given me and supporting others in a similar position.

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.

When I was first told I would get a stoma I did not want to hear anything about it. However, when I was on the ward, I met another young lady with a stoma, and she was invaluable to me. This was my first taste of identification, and the tips she shared were invaluable.

Rachel with cake

At first, I found it very hard adjusting to this stoma. Before the surgery, I weighed 7 stone and was very thin. I realised some of my pain had gone and I started putting on weight which was brilliant but hard mentally. Also after 6 months my stoma prolapsed which has been a journey in itself with 8 failed stoma refashion surgeries that have not worked. At its worse, my stoma protrudes 8 inches outside of my body, but I have accepted that surgery is no longer an option.

Hello, stoma number 2…

In 2015 I was 28 and I had my SPC for 7 years. I had moved to Bournemouth, and I was given my first cystoscopy since my SPC insertion. The results indicated my bladder was extremely small, damaged and biopsy results confirmed the cells had mutated. I was called into the office and asked to bring a friend with me. Working in the field I knew what this meant, and I am grateful my best friend came along. It was here I was told my cells had mutated and I had no option but for my bladder to be removed and a urostomy formed.

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 live rocking2stomas initially 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.

Since the blog launch, amazing things have happened! I support other people with stomas but I also now consultant for a stoma company and volunteer for charities, work with consultants on research, campaign about urostomies and go around public speaking. When I was in the depths of despair 3 years ago I could never have imagined my life today. It is truly beyond my wildest dreams. Sometimes when we are in something that is painful taking a step back and looking at it from the outside can help.

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.

Having 2 stomas I can see the different level of awareness between the stoma types. When you mention stomas most people would instantly think this is to do with poop, however, this is not the case. When you have a urostomy you can feel a bit left out not just in the general public but also in a hospital setting. There has been amazing work to break the poop stigma however I still feel there is a huge stigma regarding catheters, urostomies and wee. When I had catheters this was one of the worst times in my life, I felt so alone, isolated with no support. Hopefully, this can be addressed with people talking more about urology related problems, living with catheters and urostomies.

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