Saturday, 28 April 2012

Here we go again

So, here I am, back in hospital, on a ward where the nurses know you so well, that the banter starts from where it was left off. It's better this way, other wards don't always understand the complexities of someone like me. Here they have the equipment I need, the knowledge, and the doctors are based here.

I've been in since last Wednesday, and am living on IV fluids, which isn't much fun- starting to lose strength and the ability to sit up, but still smiling and managing to josh with the nurses, which makes things nicer.

The obvious question is, why am I here? Well why not?! I've spent about 40 weeks in the last 2 years in hospital, so there's always a fair chance I'll be here. I'm not bitter about this, I know it's for my own good, but it  can be frustrating- I want to live and have a life but I get so far and I get reeled back in by the NHS.

I've been having problems with my surgicial jej for months, it's never been right since my first nasty infection in October, but since January I've been in increasing amounts of pain with both the stoma site and my abdomen more generally. I got to the point last Tuesday night where I just couldn't take the pain any more and switched off my pump- a machine I'm attached to 23 hours a day. There was therefore no option but to send me to Hotel NHS. I was very lucky, I happened to be looked after in A&E by a doctor I had met before on his gastro rotation, so he managed to sort me out with a PCA, and fluids, without too much difficulty.

I then did the fun trip of CDU so that I didn't breech- just got to sleep there and was moved to another ward, but not the gastro one. Somewhere in the process my shoes have been lost in this, which I'm not that impressed with, it's a good job I don't walk anyway!! I didn't realise until Friday night when I was being transferred to the gastro ward.  Must ring CDU and see if they have my shoes actually, one of the HCA's was going to ring, but I don't know if they managed to do it. I can't imagine there's much call for size 9's with an orthotic insert in them hehe!!

I had my old surgicial jej removed on Tuesday, via endoscopy- my first in over a year, which is amazing for me.  My consultant did consider just cutting it off and pushing it in, but decided that thanks to my dysmotility it probably wasn't the best idea, to be fair the idea of having to pass it was something I wasn't looking forward to so was quite relieved he opted against it.

I have some fantastic nutrition nurses, who were not happy that I was getting no nutrition, so pushed for me to have an NJ put in, so I had one put in yesterday lunchtime, it didn't even last till tea time, oops!! I think that's a record for me!! There was some discussion about PN, but the nutrition reg decided that it was too much of a risk for a few days of nutrition especially as I grew some water borne infections on my last stoma swab.

So here I am living on IV fluids, in limbo again. There are serious concerns by my team that this new tube will cause the same pain, nobody is entirely sure why it's happening, but there are a few postulations of neuropathy and hypersensitivity.  We're avoiding the "what if?" talk as I think both the gastro and I know what the answer will be, but don't want to think about it.

This of course means my MSc won't be finished this academic year- I'm getting closer to finishing it, but never quite getting there, I sometimes wonder if it'll ever happen. Most people could have done a PhD in the time it's taken me to do this!! It'll be worth it in the end though, I could have given up years ago, but I'm more stubborn than a mule :D

To add to the fun, they started my IV's this lunchtime and my vision has gone blurry- the Doctor is hoping that it's just a different presentation of one of my other conditions, so I've treated it and I'm going to try and have a nap now I've finished my essay.

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