We are lucky to have another “double bagger” Vikki, who has a colostomy and a urostomy, sharing her story with us all, thank you Vikki.
I’m writing this to help raising the awareness of urostomates. This is my story. It all started to go wrong in 2003 I went into retention and was diagnosed with Fowler’s Syndrome, chronic constipation, faecal incontinence due to over flow and slow transit. I tried to intermittent self catherterisation it was to painful due to the Fowler’s and urethral catheter just expelled with the balloon intact from the bladder spams from the Fowler’s and the urethral pain and bladder pain was referred to UCHL for sacral nerve stimulation for both my bladder and bowel. After several attempts to repairing and replacing that failed. I was diagnosed with 2005 with MS, a neurogenic bladder and bowel we exhausted all conservative treatment. I was sick of been passed from pillar to post, I had no life and with constant sepsis etc I was referred up to Guys and St Thomas in 2013 after lots of testing in and out of hospital for 4 weekly Supra-Pubic Catheter changes, I got what I thought would be my life changing surgery in April 2016.
A colostomy and ileal conduit were formed I spent 10 weeks in hospital with complications. Which have not been without there issues related to my psoriasis and then you get the things that come with my problems kidney disease renal failure and level 2 respiratory failure I know we all have are demons to beat everyday; and life can be difficult sometimes you don’t have energy to do things I walk with a zimmerframe now, sometimes I need a wheelchair. Some days I’m good some days I’m bad but I have learnt to stay positive, strong, fight and walk away from negativity, I have an amazing family who I love dearly they are my rock, my life my everything they make life worth fighting for but somehow being sick has made me better. I really did struggle post surgery and when I first looked at myself in a mirror I cried. What with my skin etc it’s been a difficult process coming to terms with my ostomies.
But with the help of ostomates and ostomy lingerie I’ve learnt to know it’s not important to dwell on the little things I have no control over I’ve got the grace to accept with serenity the things that cannot be changed, courage to change the things I can my motto in life is to be positive. Having two ostomies on a daily bases can have it’s issues but I’ve found that showering in the morning is easier and changing my bags then, as the more fluids I take on board in the day the more difficult it is to change my urostomy. I use the Sensura Mio deep convex for both urostomy and the colostomy and Hollister adapt convex ring on both and a Coloplast protective ring on my urostomy as well. I use the OstoBuddy app it’s a god send the other is a nappy bin it’s safes me having to go in and out with my dirty bags and it help condense the rubbish bin I still leak a lot so and because of my skin and my colostomy pancaking. But despite all this I don’t regret my stoma’s they are call Rosie and Jim although I’m a year post op I’m still recovering and still learning. Over the last few years but especially this year I’ve learnt to love every good second, every good minute, of any of those few good days I might have. I don’t fear death because I’ve already stared it straight in the face quite a few times with sepsis. But I’m still here and I have a positive mind set which help and I’m rocking my stoma’s and still sexy.