Let’s talk poo!


What do you mean it's not ok to talk about poo and whizzpops at the dinner table?! 

When we first talked about HD with Charlie's surgeon Irene, she said you will quickly discover that your conversations will be focused on poo, passing wind, washouts and nappies. She was so right! Davy and I talk about poo alot, even at the dinner table!! 

We've been on one of the shittiest rollercoaster rides of our lives (pun intended!!) We've had lots of lows but we are starting to experience more of the highs!! 

We’ve been through the mill with Charlie, doing washouts for three months prior to his operation believing that once he had surgery he would pass poo normally. As previously mentioned things didn’t go as planned and we ended up back to washouts and trialling suppositories post operation. Finally suppositories have started to work and thankfully things are looking positive at the minute for Charlie with dirty nappies on a more frequent basis.

Davy and I are so used to talking about Charlie’s poo and nappies and giggling when he lets out a massive whizzpop, that I don’t realise how much we discuss it anymore. My mum and dad and Davys parents have also become accustomed to us excitedly telling them that Charlie pooed on his own again. I have even been known to send a photo of the result to my parents, which didn’t go down to well as my dad opened the message quite close to dinnertime!

Obviously we are delighted that Charlie is starting to poo, but there is still no pattern to his bowel movements. The size of dirty nappy varies alot but what I have to keep telling myself is that at least it is poo coming out without any stimulation needed.

After Charlie’s most recent episode of his bowel “huffing” and scaring us all, we realised how good things had been for the last 5-6weeks without washouts. From speaking to his surgeon Irene, we have to prepare ourselves that this will happen again, any infection Charlie gets will impact on his bowel. We will end up back to doing washouts, it is inevitable. Previously I saw going back to washouts as a step backwards, but now it is a backup solution that we can use to help Charlie when the suppositories aren’t working and his bowel is “huffing”.

Things are moving in the right direction and we are hoping that it only continues to improve. Our ultimate goal would obviously be that Charlie can just pass poo and wind on his own without stimulation but for now one suppository a day is good enough for us. 



Xx

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