Monday, 24 May 2010

Poor Will...

Apologies for venting rather a lot in my last post. What I didn't really say was that poor Will is suffering quite a lot with this bug. I think things are getting better, but MAN is the progress gradual. We have graduated from peppermint oil capsules for gut cramps (yes, I was sensing a whiff of sandals and patchouli too, but apparently there is good control trial evidence that these help) to codeine for cramps and to slow down the gut (made Will's mind go crazy, he was trying to poo out Dorothies in threes - shouldn't have let him watch the Over the Rainbow final on Saturday) and now we're trying immodium. We have to be very careful with this as the CF gut is prone to blockages. The worry now is that one of Will's immunosuppressants - the mycophenolate - may be contributing to the diarrhoea. You're not supposed to take it on an empty stomach and, although we're trying to get food into Will at the same time as taking it, it's probably not really enough. He certainly seems to feel worse after taking his hefty pill dose in the morning. We're also trying to get enough liquid and electrolytes into him, but dioralyte really is foul stuff and doesn't help the nausea.

Anyway, apparently Jas is now keen to see Will, but they are "chocka" at Papworth at the moment. So looks like we'll head to clinic on Thursday for a probable admission. I guess this would be to take him off the mycophenolate for a while in controlled conditions. I'm now slightly panicking - being told the consultant wants to see Will but can't cos there aren't any beds freaks me out rather. But rationally I guess they'd find a bed if it really was an emergency.

So, we plod (and poo) on. Can everyone send Will some healing and constipating vibes please...

4 comments:

  1. Poor Will!!! And poor Vicky too!!! Getting the squits in this heat is not good :(

    My Mum used to swear by Kaolin and Morphine mixture for the trots when I was little, and you can still get it (despite the morphine bit), but susepct it may be contra-indicated with all the crazy "sweets" Will is on ;)

    Chin up!!! We're all thinking of you xxx

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  3. Try orange squash (not sugar free) with salt in - 1 level tsp per litre. And a banana (not mixed in to the squash...). Won't cover all the salts Will is losing but perhaps will give him a couple of sessions off the yucky stuff. Apparently flat coke is good at stopping the squits but I've never tried it; it's not very appealing, is it?!

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  4. Hi Will and Vicky, sorry your'e having such a horrid time, especially after both your moving and detailed posts re. the op!
    I don't know if this would be OK for Will to have but linseeds are supposed to be good for bowel function, both to get it going and to stop it up! You need to soak a dessertspoonful for about half-an-hour in orange juice and then drink it and it bulks up nicely inside you, at least that's what it says on the packet! It works for me!!
    Love, Claire V.

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