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Shirley’s Story

    Many people with MS have “bladder problems”, of varying degrees.  MSRRF Service User Shirley
    Price writes her own story of how she solved her own particular “bladder problem.”
Shirley's Story In 2009 I celebrated my 50th birthday although really there was not a lot to celebrate! My MS had finally been diagnosed twenty years previously after two years of all the tests, options and discussions but for the past five years my bladder problems were simply getting worse. The problem had come to dominate my life. I should really say it was taking my life away. An almost constant urge to pass water and get to the nearest loo, the urge to pass  water every time I stood up and feeling that I would really never feel comfortable
going  outside again.

I was a prisoner to this curse when I accidentally happened to see an episode of the daytime soap “Doctors”. The storyline was of a woman with Continence problems who was so embarrassed to seek help that she was virtually housebound. It made me determined to face this demon and I went to my GP who referred me to a Urologist. Initially I was prescribed drugs which did help for a while but after two years my condition deteriorated. The Tena pads were getting thicker, the medication not as effective and the mobility factor remained a constant problem.

I referred myself to a Continence Nurse who was a tremendous help and support and remains part of my support structure even now. I was also referred back to the Urologist. Medications were tried with modest short term success but the problem was undoubtedly getting worse.

I underwent an X-ray, Urodynamics and a Cystoscopy. These tests showed my bladder was going into spasm, that the sphincter did not work properly and that my pelvic floor was “knackered!”

The short term options did not really appeal or would not have worked for me. Medication was failing, Botox was ruled out and, due to grip problems in my hands, the various forms of catheters were not an option. The only real solution was a Urostomy. A once and for all bladder bypass which would leave me with a stoma to pass my water into and a bag to collect it in.

In February 2010 I underwent the operation and woke up with a wonderful new friend called Wynoma (the Stoma) and this great guy called Phil (my urine collection bag!!!). Phil is a godsend and I take him with me everywhere! He is easy to use, never lets me down and never panics!

Nine months on and I am a totally different person. Fit and well after the operation and knowing that I am now in total control of my waterworks is a position I would never have thought possible in those sad and tearful days that now seem a distant bad memory. The stress factor has gone, my time is my own and I am getting out and about again with relish.

Behind the scenes I did contact the Urostomy Association who were a great support and they put me in touch with another MS sufferer about my age, who had gone through the same problems and solution as I have. She was brilliant and gave me all the confidence and determination to beat this demon. That is why I now make myself available to help anyone in a similar position. If you would like to talk to me or email me then ring 0191-3894494 or email shirleyprice@sky.com .

This is the final option. It is my final solution. If you are thinking of contacting me please do so as it may help even just to talk to me! I recently spoke at a Practitioner Forum at Teesside University to an       audience of over fifty professionals of all disciplines. I had never done anything like this before but I think that this is evidence of the change around in mind set.

Shirley Price

 

 

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