In 2005 Rachel Jury set off to university to begin a BSc degree in radiotherapy and oncology. She was full of excitement for the adventure ahead, fulfilling a life-long ambition to qualify as a therapy radiographer. But life had other ideas…
For two years, I lived the adventure to the full and was well on my way to starting a career in radiotherapy.
Each year of the degree involved a clinical placement somewhere in Great Britain. Whilst on placement in my third year, I contracted campylobacter and became very ill, spending ten days in hospital.
I had no idea how much this event would impact me, not just during that year, but for the rest of my life.
It took many months before I was declared clear of the campylobacter. Thankfully, once declared clear, I was able to resume my degree, catch up with my clinical objectives and graduate, as planned, with a 2:1 BSc degree in Radiotherapy and Oncology.
“Finding the necessary time to use the ISC’s during a shift was, to say the least, challenging. It wasn’t long before I developed further complications.”
After graduating, in 2008, I began my career as a therapy radiographer. It was around this time that I began to notice that my body wasn’t working as well as it had prior to the campylobacter.
I began having issues with my bladder. At the beginning the damage done by the food poisoning presented itself through numerous UTI’s, which would not clear up with antibiotics. Eventually, I was unable to empty my bladder at all and was retaining urine.
As I had only just begun working in a very busy and dynamic radiotherapy department, I did not want my health to affect my job, so carried on working fulltime regardless of how ill I felt.
I was finally doing the job I had dreamt of and helping people along their journey with cancer. My ‘troubles’ seemed insignificant alongside them. At this time, no-one had connected my ongoing health issues with the campylobacter.
“I confessed to one of my colleagues that if I went off sick, I knew that I would never return to work.”
Finding the necessary time to use the ISC’s during a shift was, to say the least, challenging. It wasn’t long before I developed further complications.
In the end, there was no option but to have a permanent urethral catheter. As bad as this sounds, this actually allowed me to forget I was a patient myself as my time was not interrupted as it had been previously.
Yes, like a stubborn mule, I continued to work as a Therapy Radiographer, with a bag of urine attached to my leg. Slowly, though, I began to realise that this situation couldn’t carry on forever. Having this type of catheter is awful. Trying to live life with it is unimaginable. Working whilst having one, as I was to learn, is impossible.
As well as being only 23 with a catheter and the emotional impact that brings, at times the spasms in my bladder were so strong, it felt as if my bladder was trying to give birth to the catheter.
“So, here I was at the grand old age of 25 with a failing body and two bags to carry around.”
Remaining as a therapy radiographer was no longer an option, but the battle between my desire to work and the reality of my failing health was about to begin.
I remember breaking down at work due to how ill I was and confessing to one of my colleagues that if I went off sick, I knew that I would never return to work. Just two days following this conversation, my body forced me to resign, due to ill health, from the career I had studied so hard to enter and only just begun.
Ultimately, I was forced to walk away from the future I had envisioned. Devastated, does not even begin to explain the level of my despair about having to do this. I felt like a failure and was so angry towards myself, still fighting against what was happening to my body. Fighting to remain the healthcare professional rather than the patient I now was.
Not long after, it was decided that I should have a Supra-Pubic Catheter (SPC). Whilst easier to maintain on a daily basis, this was not a final solution to my ongoing problems. Whilst all this was happening with my bladder, my bowel was beginning to fail too.
”Generally speaking, I have succeeded in making a 360-degree turn.”
The peristalsis had halted completely resulting in an inability to empty my bowel and ultimately, horrific pain. After a few months on Coloplast Persteen Irrigation, my consultant diagnosed me with slow transit bowel and determined that my only option was to have some of my bowel remove and an ileostomy formed.
So, here I was at the grand old age of 25 with a failing body and two bags to carry around.
I had the SPC for a total of seven years. During this time the spasms continued and I struggled with it. A routine cystoscopy revealed that my bladder was extremely small and damaged beyond repair.
Biopsies were taken, which confirmed that the cells of my bladder had begun to mutate and within two weeks, I was having emergency surgery to remove my bladder and all of the surrounding lymph nodes.
A Ileal Conduit, (Urostomy), was formed and during my 3 months hospitalisation, due to various complications, it suddenly dawned on me that I now had 2 stoma bags and was what is known in the ostomy world as a ‘Double bagger’.
Quickly I realised that having this surgery was the BEST decision ever made. I had previously been in constant, horrific, pain, unable to walk, struggling mentally and definitely not living.
Now I am able to see the freedom it has all given me. I still get complications and am regularly admitted to hospital, but generally speaking, I have succeeded in making a 360-degree turn.
I am now living! I have become a health advocate, run a blog, and co-host “The IBD and Ostomy Support Show” live every Thursday at 8pm on YouTube!
I am doing all I can to raise awareness of life as a ‘double-bagger’ and in particular highlighting the work of the Urostomy Association charity.
Now I feel that I have not failed, my body broke, but I am still me and now it is time to give back.
“I am now at a point where I can look back and see the progress I have made.”
I am in the rare position of having moved from health professional to patient. I have an insight into work and life as a health professional, the pressures the staff are under, studying for the degree and applying my training to the benefit of patients.
I also have insight into being a patient, the time it takes to accept the realities of a life-long condition, the frustrations, the tears, the battles and ultimately, the relief and freedom treatments can bring.
My illness has taken away my career and altered so much of the future I dreamt of. My treatment and the stoma bags have given me freedom, space to learn who I am, a ‘degree’ in stoma-management and my life.
I am now at a point where I can look back and see the progress I have made. Far from being a failure, I am able to marry up my training as a healthcare professional with life as a patient and bring the knowledge I have gained to the attention of many, in the hope that it can help someone who is starting a similar journey.
I may have two stomas, but I am still rocking!