Hi

Katrina - posted on 09/09/2013 ( 8 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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Katrina - posted on 09/13/2013

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Thank you so much luludi :) ye my parents are my heroes and best friends also my two sisters and brother, il never be able to do anything as amazing as what they did for me but I am eternally grateful for there courage and faith, xx

Luludi - posted on 09/13/2013

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Meeting a person like you is a priviledge and a great lesson, actually I cannot find words. And as a parent of 2 very young kids I also imagine how your parents must have felt and what a strength they gathered to contradict doctors and take you to adult age. What an amazing story! THANK YOU

Katrina - posted on 09/11/2013

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I am very happy to have virtually met you too :-) thank you for your kind words xx

Mrs. - posted on 09/10/2013

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:-D Most people in your shoes cant even smile, or stand happiness. You are blessed and I am grateful to have virtually met you ♥

Katrina - posted on 09/10/2013

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No not at all that's not rude.. I guess I know ok never be 100% well so I can't mope about and feel sorry for myself as I was one off having spina bifida too which I couldn't imagine having, when I was a baby they told my parents we don't know what it is so put it on a special home and let it die I was not even a sex to them my parents took me home I taught myself to walk at 3 years old and as they say the rest is history so I think because of my parents strong too my parents just always taught me to make the most of what I have because it might not last, I'm a lot happier now I'm older I hated myself for a good few years but I was always ill so fell behind in school and college so that was hard but I went back to college and re did all my exams, I'm not sure where strength comes from I guess you know you have to get on with it and do the best you can , somebody said to me in the hospital the other day how can you still be so cheery you have renal failure you've just had 2 operations coz one failed but honestly it's all I've ever known I've never been well so I wouldn't know any different and in all honesty now I wouldn't change my life and struggles because it made me strong xx

Mrs. - posted on 09/10/2013

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I just have to ask, I hope that you don't find it rude because im not trying to be disrespectful or rude in any way. I just like hearing, and im sure others would like to hear also. what is it that motivates you. I would like your perspective on strength. What is it that puts a smile on your face, and even more, what makes you upset. Just out of curiosity. With strength like yours, you have to be prepared for pretty much anything. That being said, what is it that keeps your head up?
Elsie ♥

Katrina - posted on 09/10/2013

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Aww your welcome, I guess I'm strong because I have this condition I did have a breakdown at 21 I had my first bag put on and I was left to handle it alone I couldn't cope it kept falling off and leaking I ran away from home and put my parents through hell but I wasn't mature enough to handle it all, I think that people are strong in other ways we all have difficulties in life maybe it's not medical but you will get through :) kee your head up xx

Mrs. - posted on 09/10/2013

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Having a medical condition, I'm sure, is one of the most difficult things in the world to live with. But you, and many others amaze me. I am healthy, and I have a problem with thinking that I cant do things. I know it may sound wrong, but you give me a reason to try even harder. Because I fail to realize that I don't have the obstacles that you have and yet you seem to be stronger than I am. I just have to say, thank you for sharing, and being an inspiration.
Elsie ♥

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