My Urostomy Story

Doing the toilet dance for many years

“Mum’s doing the toilet dance,” could be heard issuing from my sons - yet again - as they pointed me in the direction of the nearest facilities. We were out for the afternoon at the beach, so I danced off together with my bag full of pads and clothes as they headed to find a good spot on the beach with the rest of the family.

I have had bladder issues for many years. After trying many non-invasive treatments, in 1995 I underwent a bladder coloposuspension. This was only partially successful and unfortunately left me with chronic pain. Further surgery followed over the next few years to reverse the coloposuspension and my bladder symptoms returned with a vengeance. I was also diagnosed with an overactive bladder and had to carry out ISC several times a day. I reached a point where simply standing up would result in me becoming wet.

I was a primary school teacher for more than 30 years, but work became more and more difficult. Leaving the classroom at short notice was very tricky and I frequently had accidents. Try explaining to observant children why I had changed clothes yet again! I loved my job, so it was with a heavy heart that I took ill-health retirement. 

My Ileal Conduit transformed my life

Eventually, in 2011, I was referred to Mr Hamid at University College London Hospital (UCLH). After yet another bladder function test he suggested that he put an Ileal Conduit in place for me. This was done on 2nd April 2012.

Having an Ileal Conduit has transformed my life. I am extremely fortunate to have excellent support from the urinary diversion nurses at UCLH – knowing that they are just a phone call away is very reassuring. My oldest son Paul married his lovely Jenny in 2013. It was a magical day that I enjoyed all the more for not having to worry about being wet and smelling of wee!

There have been a few ups and downs since I had my surgery. I have recurrent UTIs that the doctors are trying to resolve and I am awaiting further surgery to repair a parastomal hernia, but I don’t for one moment regret having it done.

I joined the Urostomy Association, which has provided me with a wealth of knowledge and support and last year became a member of their NEC. It’s been interesting meeting others who have urostomies and it’s good to be able to give something back…which I hope to continue doing by sharing my urostomy experiences with you all via my blog here on the SecuriCare website!