Hi

Katrina - posted on 09/09/2013 ( 2 moms have responded )

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Hi I'm not a parent but I do have a cloacal exstrophy to my knowledge I am the eldest in the world still living with this condition I'm now 29 I've had my large intestine removed so have an ileistomy and also my bladder removed because I was completely incontinent so have a man made pipe from my last remaining kidney to a urostomy bag illeal conduit , last week my kidney started to fail I'm now down to 6% so had to haves fistula made it didn't work so had another one done for the dialysis machine, I've never met or spoken to anybody with this rare condition but I would like to say we have some amazing strength and can get through anything I've reached 29 30 in march next year :) it's a hard life and difficult decisions will have to be made but I'm proud of all I've achieved and gone through and I'm ready for some more lol I wish you all the best of luck and if anybody has any questions I'm happy to help all my love ... Katrina xx

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