https://urostomyassociation.org.uk/
Since being diagnosed with Fowlers Syndrome in September 2014, I have endured 6 months of self cathterisation, 18 months with a suprapubic catheter, 15 operations under general anaesthetic and goodness knows how many outpatient appointments and embarrassing tests etc.
My mental health has suffered every bit as much as my physical health and it’s become increasingly clear that going on like this for the rest of my life is simply not an option.
A couple of weeks ago, I had an appointment in Edinburgh to see a highly specialist urologist about a long term plan for the management of the illness in my case.
Ultimately, it’s been decided that there is only one way forward – I need a urostomy, and it’s happening very quickly.
A urostomy entails the ureters being disconnected from the bladder and diverting urinary output to a stoma created using a section of bowel. The stoma sits above the skin on the abdomen and requires a stoma bag to be worn at all times.
In some cases the bladder is removed entirely, but this can cause risks to the uterus therefore in some cases it’s left in situ but completely disconnected and redundant.
It’s an absolutely huge operation, physically, and I’ll be in hospital in Edinburgh for at least ten days but potentially far longer. The initial three months post op are extremely tough and will be a bit of a write-off. (Amazon to the rescue for Christmas shopping this year!)
A urostomy is irreversible, and very much a last resort.
It’s taken me the best part of a fortnight to finish writing this post because it’s been a lot to get my head around, but I know it’s something that has to be done.
I’m fortunately in contact with a couple of other Fowlers girls who have been through this procedure already and in particular I want to publicly thank the beautiful Polly-Anna Mason for her support, answering pathetic panicking messages at all times of day and night.
It’s just under two years since I was diagnosed with Fowlers and a lot has happened in that time, but I ultimately need to have faith in the medical team around me and be grateful for the support I have from friends, family and Fowlers girls alike.
K x
fightingfowlers 
I am facing a very similar dilema and yes-the damn bag!! End of the road for me and this bladder-its caused me nothing but bother so can’t say I’m gonna miss it x Starting a blog has helped me, and continues to help me as my journey to ostomy continues. Can’t say it hasnt caused me some dark days but living with a chronic condition has been far worse-I’m in a good place and have lots of support-have a look at my blog, as I will yours, we ostomates have to stick together!
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