Today for #UroStories we have my good friend and double ostomate Vikki Palmer, 48 from Minster Near Ramsgate sharing her story...
- 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.
- 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.
- 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.
- 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'
- 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.
- 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!
- 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.
Thank you, Vikki, for your honesty and answers. I really appreciate all your help with raising awareness!