Saturday, 21 March 2009

Let me explain...

If you are at all squeamish or of a nervous disposition please don't read this. 

For those of you who are wondering what I'm on about when I mention Willow's bowel washouts, let me explain... Willow has a congenital condition called Imperforate Anus, which basically means that she was born with no anal opening. The bowel ended in a blind pouch with a fistula (narrow tube) that connected the bowel to the vaginal opening and this is where her poo was coming out when she was first born. Obviously this is going to result in infections and so can't be left like that. So when Willow was a day old she had to have a colostomy. This is where the intestine is cut and the end coming from the stomach was brought to the surface so that waste could be expelled into a colostomy bag. The other cut end of the intestine was also brought to the surface to form a mucous fistula - this is so that the mucous present in the intestine can clear and doesn't stagnate within. A dressing is placed over this mucous fistula and changed regularly.

Willow had to have another operation when she was about 10 days old as she had developed adhesions on her intestine and it was causing a blockage.

When she was 8 months old she had the operation to form an anal opening, this operation has to be done first so that the opening can heal before the colostomy reversal, otherwise the waste could cause infection.

2 Months after that Willow then had the colostomy reversal operation, this is where the 2 cut ends of the intestine are rejoined, allowing waste to travel to the rectum and out the new opening.

I have left loads out, but I don't see that its necessary to go into great detail here. Anyway, Willow has no bowel control and we have to perform bowel washouts every 2nd day. This is so that (in theory) she will be clean all day in preparation for starting school in August. Now, the washouts need a bit of explanation. We use the Peristeen System  and what happens is we fill the bag with warm saline, connect up the tube and hand pump, then insert the catheter into her anus and pump a certain amount of the saline into her bowel. Its a bit like colonic irrigation. Once we have done this, Willow has to sit on the toilet for up to an hour so that she can empty her bowel completely. She usually needs a couple of nappy changes before bedtime, as we don't think its really fair on her to sit her on the toilet for more than an hour. 

So we need help to do this, as its not exactly pleasant and Willow fights a bit. It really needs two people - one to use the system, and one to restrain Willow. And with Graham away for 2 weeks out of 5 I need help when he's away. It took several months, and various assessments from the local Social Work dept but we got the help in the end. 


dawnmarieg said...

Oh god Debs, poor wee soul, and poor wee mammy! Is there nothing else they can do for her?

Macpurp said...

will Willow gain some bowel control or is this a life long condition?
love teen xx

Mar G said...

& Willow never lets any of this stop her! ;-)
You & Graham just get on too, I'll never forget staying with you & you both changed 11 nappies within 30 minutes!
We do tend to just get on with it when our kids have additional needs, to others its awful but to us they are our kids & its normal?! x

angeljakki said...

The hoops you have to jump to get the help that kids and parents need does my nut in. Sorry to read the problems you are enduring but So good to hear you got the help needed to make your day alittle bit more managable x x x

Love to Doodle! said...

Hoping technology moves on and things can be improved even more for Willow in the future...and for you too...xx

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