#UroStories - Toni

#UroStories - Toni

Good morning and welcome to another #Urostories where we have the lovely and inspiring Toni from Warwickshire sharing her story.

  1. Can you tell me a little about how you got your urostomy?

 I had a condition called Interstitial Cystitis and a diseased bladder. In March 2017 I underwent surgery and had something called an ileal conduit urine stoma (urostomy). This has been an absolute godsend to me!

  1. What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?

Don’t get me wrong it has its ups and downs like leakage but this is why the stoma nurses are there to help and support you.

  1. What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?

One piece of advice I will never forget which was of great benefit was peppermint cordial I took it into hospital as I was told this would help with the wind pains. I don’t remember much about my op I just know I had great care and 10 days later I was home.

  1. Are there any support groups, associations or online groups that have helped you live and accept your urostomy?

Before my operation, I did a lot of reading and I found online support groups that really helped me. One Facebook group, in particular, is Urostomy Awareness where I could chat online and ask questions.

  1. Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?zs

The Health Care Professionals do a fantastic job. I’ve not met one yet who has treated me any differently from anyone else with another kind of stoma. I believe they have a hard job keeping up to date with products to suit all needs and I think we should bear this in mind when we go and visit them.

  1. How do you feel we can raise awareness for urostomies within the general public?

I think if I had to raise any kind of awareness regarding a urostomy it would be a calendar!

  1. When you are having a down day what one thing do you do to keep positive that you find helps?

12 months now have passed and if I ever get a day where things look a little grey I just remind myself how lucky I am to of been one of the lucky ones that I was offered an opportunity to change my life for the better!

Thank you, Toni, for sharing your story and I am really glad your urostomy has changed your life for the better!

Next Monday we have Wilma Gray Sharing her story!

Written by : Rachel Jury

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