My bladder removal saved my life

I was diagnosed with a rare condition called ‘Autonomic Neuropathy’, which means that the nerves that supply the bladder and bowel function incorrectly and affect my bladder and bowel from working properly.

What caused it?

My problems started 10 years ago when I was in my 3rd year of university studying Radiotherapy and Oncology. On placement, I ate chicken from a well-known supermarket and contracted campylobacter food poisoning that made me very poorly and landed me in the hospital for 10 days. Little did I know how much this event would be the start of a 10-year struggle with the functioning of my bladder and bowel.

My Urological Symptoms

I was 21 and working in Bristol Oncology Hospital as a Therapy Radiographer when II started having lots of Urinary Tract Infections (UTIs) As soon as I finished one course of antibiotics the infection would return and I would be on another course. I was unable to empty my bladder properly and was retaining urine. After an ultrasound scan the retention was confirmed and under the care of the urology department, I was advised to start self-catheterising a few times a day.

Giving up work

However trying to self-catheterise whilst working in a very busy radiotherapy department was very challenging. I struggled and failed to empty my bladder successfully so it was finally decided that I needed to have a urethral catheter. I really struggled with this type of catheter. The spasms were horrific, like my bladder was giving birth to it. At this point, my bowel issues started where the peristalsis completely halted and I could not go at all. Dealing with this and the immense pain caused by the catheter, I had to resign from work. This was difficult for me to deal with after working so hard to qualify but I was not fit to work. This was exacerbated by the fact that the cause of why my bowel and bladder were not working properly was still unknown.


In 2012 my surgeon decided to perform an Ileostomy (where the small intestine is diverted through an opening in the tummy .The opening is known as a stoma.) I took a while to adjust but it didn’t take me long to realise the benefits and I started putting on weight. I adjusted with the stoma but it took its toll on my bladder. In 2015 a cystoscopy revealed my bladder was extremely tiny and very damaged and a biopsy revealed the cells had started to mutate. It was decided that the bladder had to be removed and an Ileal conduit (urostomy) was formed. (This is where a small segment of the small intestine, usually the ileum, is used as a conduit for the urine. The ureters are attached to it and the surgeon brings the segment to the surface of the abdomen to create a stoma where the output is collected by a pouch.) When I was first told I was concerned how I would cope with two stomas, but looking back now it is so much better than one stoma and a catheter.

Having this surgery and having my bladder removed was the best decision I have ever made! Previously, I was in horrific pain, unable to walk, struggling mentally and was just existing, not living my life. Now my life is 1,000 times better with my urostomy. Naturally, there is an adjustment period but once you learn how to look after your stoma and begin to slowly accept it, it is easy to see how much your life has changed for the better.

Raising awareness

Recently this year I started my blog and advocating in the ostomy community. I cannot put into words how much helping others has helped me take myself out of self-pity and accept my disease. I am also part of “The IBD and Ostomy Support Show” with three other ladies and Steve who all have an Ileostomy.

We are live every Thursday at 8 pm or you can catch up on You Tube anytime. We talk everything stomas and cover all topics in a friendly informal setting. I am also helping to raise urostomy awareness with a charity which is very rewarding. I have found a new lease of life and bizarrely it is still in a medical, but not professional, setting. At the end of the day, my stomas saved my life and they have given me a purpose and a focus.

Do you have a story to tell? This email address is being protected from spambots. You need JavaScript enabled to view it. and help raise awareness of urology health

Find our more from Rachel by visiting her blog Rocking 2 Stomas


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