#UroStories - Vikki Palmer

#UroStories - Vikki Palmer

Today for #UroStories we have my good friend and double ostomate Vikki Palmer, 48 from Minster Near Ramsgate sharing her story...

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

It all started to go wrong in 2003 when I went into retention and was diagnosed with fowlers syndrome, chronic constipation, faecal incontinence and slow transit. I tried to self-catheterise but it was too painful due to the fowler's syndrome and the urethral catheter just expelled from my bladder due to the bladder spasms. I was referred to UCLH for sacral nerve stimulation for both my bladder and bowel but after several attempts, this failed. I was diagnosed in 2005 with MS and a neurogenic bladder and bowel and it seemed we had exhausted all conservative treatment. I was sick of being passed from pillar to post where I had no life and constantly had sepsis. I was referred to Guys and Thomas Hospital in 2013 after lots of testing in and out of the hospital for 4 weekly Supra-pubic catheter changes I got my life changing surgery in April 2016. A Colostomy and Ileal conduit were formed but I spent 15 weeks in hospital due to complications.

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

 I think body image was the hardest for me to deal with especially with my psoriasis around my stomas. After getting home the first time I looked in the mirror and cried and thought how can I be attractive. I went home with a transparent bag and I hated seeing my wee.

Then I met some amazing and inspiring ostomates who were body confident and I thought well they are beautiful and so am I! The first thing I did was order some ostomy knickers from vanilla Blush and contacted Coloplast who informed me that they did a grey Sensura Mio Deep Convex Urostomy pouch so no more seeing my wee.

  1. What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
  • Give yourself time because this surgery can have a massive psychological impact.
  • Experiment with different bags so you find out what works for you.
  • Never leave the house without a change of pouches.
  • Before surgery, speak to other urostomates.
  • I change my urostomy pouch first thing in the morning.
  • Keep hydrated is the most important tip for all urostomates.
  1. Are there any support groups, associations or online groups that have helped you live and accept your urostomy?

I joined the Urostomy Association but I find Colostomy UK are amazing at raising awareness. I also found the Facebook group 'Making Ostomies Cool' was a great support especially when I met Shell lawes and she helped me find Calum Lyon a dermatologist specialising in parastomal skin. I also met Rachel aka Rocking2Stomas she is passionate about urostomy awareness. I am happy to help because there is little awareness out there for urostomies. I am also an admin for the 'Double Bagger Ostomy Support Group'

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

Yes, I believe there is a massive difference in awareness for urostomies in the hospital setting compared to how much awareness there is for colostomies and ileostomies.

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

We need to raise more awareness for urostomies but I think this is a great idea sharing stories and speaking to companies!

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

I think of how far I have come and all the battles I have been through. I also meditate, adult colouring in and write my thoughts down which help. I also have the blog 'Double Trouble Stoma Girl' to help raise awareness.

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Thank you, Vikki, for your honesty and answers. I really appreciate all your help with raising awareness!

 

Written by : Rachel Jury

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