I was born on the 17th December 1982 with the condition Currarino Triad, although at that point it did not have a name. I have lived with the condition for over 21 years now, and have under gone many operations to try and help control the problem. The most successful operation was performed when I was around 13years of age, and is called an ACE (abv). I was only the second person in the UK to have the operation performed. It involved creating a tunnel out of my appendix that would connect to my bowel, and have an opening on my stomach. This would enable me to put a tube down the tunnel and into my bowel. Through this I would perform a bowel washout. I'd put the solution (it varies from person to person) down the tube and sit on the toilet, like normal, and wait for the solution to wash through.
I wear a dressing over the hole that is on my stomach (the opening to the tunnel) which is only tiny. Many people, as I have heard from my doctor, don't even need to wear a dressing, they simply leave it open to the air. Occasionally the bowel washout will not work effectively and will take alot longer to try and get it to wash through, but the good washouts far outweigh the bad ones.
My bowel washout is slightly different to many other children who have an ACE, as the tunnel created is smaller than what is normally created now, this was because my apendix was much smaller than normal. My bowel washouts also seem to last longer than alot of other childrens and the solution I use is quite an old concoction. My washout takes anything from 1/2 hour to 2 hours - depending on lots of factors.
When the washout works properly I am able to do everything as normal, this includes swimming, going on holiday, attending uni, and hundreds of everyday things. I think many people with this condition before having the ACE do wonder about things like swimming, but once the washout has worked I have no problems at all right up until I perform the washout again. So going swimming is no problem.
I am able to live a virtually normal life - obviously you have to bear in mind when you are due to do the washout again you sometimes have to arrange things around it, but on the whole my life runs as any other person's would without the worry of 'little accidents'.
I don't know how the ACE works for other people who have it - that is one reason I wanted to set this site up so that other people who maybe do, or are considering having the ACE can see how it actually works for one person. Without the ACE there are many things that I would have difficulties doing without the risk of accidents happening and the embarrassment that that carries with it.
I have recently been for genetic counselling to find out the possibilities of my children having the same condition. I have been told there is a 50/50 chance of the gene being passed onto my children, but it is not possible to say to what degree my children will be affected. They will be able to monitor the baby when I'm pregnant and through scans will be able to determine if the baby will have the same problems I have had. I have never thought about not having children as I feel that this condition is manageable, and if I have coped aswell as I have with it then my children will be able to do the same. I am very much looking forward to becoming a mum in the future :o)
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