The adventures of Mr Burp

When W was a baby and first diagnosed with Hirschsprungs Disease a common theme was 'let's try and avoid giving him a stoma'.  It seemed the worst thing that could happen was a stoma,  one year on in our adventures with Mr Burp and the stoma turns out to the best thing has happened to W. He is healthy and happy, hasn't been sick for MONTHS, has grown like a magic beanstalk and is very cheeky and naughty!  We have got used to the process and the equipment and like the predictability of the stoma and bag.  We are so relaxed that W has a tendency to show anyone his scars and mr burp bag and whip off a leaking bag in the swimming pool changing room without batting an eyelid. I love how relaxed and unselfish conscious he is.

As we wait for a date to have his stoma closed these are the things I should remember.  The things the stoma nurses don't always tell you!

If the bag is going to leak it will happen at 830am, 2.55pm when you have started the latest episode of breaking bad or at a play centre at the top of the twirly thing where you have to climb through the rollers. Or when you have just sat down in Costa with a friend and a cup of tea!

If he says it is leaking ignore him at your peril!  Even if you can't see anything it will break through very soon!

You will never want to smell peppermint again! (they did tell me that actually!)

Stoma paste sticks to anything and needs to be chiselled off!  Actually I might try using it for art projects :) 

You wouldn't believe how much a bag inflates during a swimming lesson, it must be the pressure, the poor thing looks like he has beriberi when he gets out of the pool.  Of course he doesn't notice!

It is easier to give a three year old extra crisps than a sodium supplement :) 

Two part bags meant I didn't have to stay up late just to empty.  More sleep is lovely, wish we'd had these at the start!

Tell people looking after W the obvious things, like roll the bottom of the bag up after emptying it!  

You need space to store all the stuff!  Best £69 we ever spent was our changing table, room for all this and a toddler watching an iPad on top.

I am apprehensive about the future and what will happen after Mr bump goes back inside, but I won't miss the piles of equipment and remembering the bag everywhere we go.