When your normal changes

Apologies for the absence, this post follows on from "Here we go again".  The PEJ was no better than the surgical jejunostomy, but the consultant on the ward wasn't particularly helpful and discharged me on the Friday, I saw my own consultant on Tuesday and he decided I needed admitting to get this sorted.


I finally got a bed on Wednesday night, and have started TPN. TPN is Total Parenteral Nutrition, which basically means that I am fed directly into the vein, avoiding my digestive tract completely.  This is a big step as it comes with many complications such as line infections, liver failure, blood clots. About Parenteral Nutrition.


I start my training on how to administer my treatment myself on Monday. As I had trouble with infections around my jejunostomy, I'm very conscious about the greater risk of infections with a central line, so I want to be administering it myself as soon as possible. The less people that touch the line, the less chance of infection. I've been told it's best to do it myself as the skin flora is common to you already so it reduces chance of infection.  I met up with some people from PINNT yesterday, which was fantastic timing so I could discuss with them the pros and cons of a Port v a Hickman line. The main appeal of a Port to me is that I can go swimming, which would be fantastic as I miss swimming greatly and it would be great for cardio training- you may gather that I have a one track mind, most things revolve around my ability to row and train!! I know some people swim with a Hickman, but again given the problems I have with my Jejunostomy and infections I think it would be riskier to have a Hickman.  It's also not going to get in the way when I'm doing exercise etc.. I know some people who manage it with their Hickmans, but I'm going to give a Port a go as I think it'll suit my slightly bizarre lifestyle better!!


I'm hoping to get my Port fitted on Tuesday. We have a fantastic unit here, the Vascular Access Unit, which primarily puts in various lines for all sorts of medical conditions. The sooner I get my Port the sooner I can get home :)  I've set a deadline of the end of the month as I have to go away the first weekend of June.  I've already been told that I'm mad going away so soon after getting out of hospital with a new way of life, although in many ways it's very similar.


My main concern is how I'm going to get my medication as pretty much everything goes through my tube, so my team need to do some thinking about how they're going to get around that.  Although I'm looking at the benefits. I was on jejunal feeds for 24 hours a day, and will be halving that, which would be nice.


So, my normal has changed again, which is kind of what's normal for me. 

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.

Tube Tales

I've had most type of enteral nutrition tubes, and rather than ramble on about the reason why I need one, I thought I'd share some of the highlights of my experiences.

The award to the shortest tube life was 4 hours- don't give a gastric tube to someone who's stomach doesn't work properly!!

Most of my nasal jejunal tubes were vomited out, I'll never forget having to pull them out of my nose covered in sick.

Two peg-j's that need mentioning are the one that had its balloon retainer fallout, and me watching as my tube slowly wiggled out of my stomach, strange sight!!

The story I really want to tell is the peg-j that got lodged in my throat. Now if you're sitting comfortably I'll tell this bizarre tale.
A regular, at least daily occurrence in my world is vomiting, and I don't quite know how this happened, and no-one I have spoken to in the tube feed world has heard of anyone else have this happen. Anyway, back to the story, so this fateful evening, I throw up and feel something stuck in the back of my mouth, assuming it's a piece of food, I go to clear it out. Unfortunately this isn't the case, and I realise it's my jejunal extension stuck in my throat. I hope it has returned to my stomach, and work out plans for a weekend in hospital- I always break my tube on a Friday or the weekend. Unfortunately I'm sick again, and again my tube pops into my mouth. This time, i can feel something there, I'm pretty sure it's not psychological and test this, handly with some retching that again brings into my mouth. Reckoning that the forces aren't so strong with that, probably means my tube is in my throat. I decide that it's definitely going to be a weekend job at the "Hotel NHS", and turn up at A&E.

Here I see the nurse and explain my situation, she peers into my mouth, but can't see the tube, and looks at me like I've completely lost it. The doctor then turns up. He again is rather dubious of my story. He does, however, send me for an x-ray. This was the start of me being proved right clinically.

The radiographer takes the x-ray, and then asks if I know there's something lodged in my throat, and asks their colleague if they should take an image of my neck. To which I helpfully explain that as long as you can
see something in my throat that's fine, as we know what it is, just wanted to make sure it was really there.


They looked rather bemused by my calmness and nonchalance about it all. The doctor returned to explain that I was right. but didn't really know what to do about it. Thankfully the cubicle I was in, was near the doctors station so I could hear him discussing it, to a lot of disbelief by his colleagues and intrigue as they saw the x-ray.

Unfortunately they weren't sure what to do with it, and opted for the safe option of leaving it there and putting me on IV fluids. This meant a very uncomfortable weekend for me. My throat was progressively getting more and more uncomfortable and eventually managed to get someone to take it out on Monday, which was a weird sensation.

Having had it removed another problem developed when I went to endoscopy. There were no more of that type of tube available, so they suggested I had a nasal tube again!! I was not impressed with this, but managed to convince them to give me the first type of pegj I'd had, which thankfully my consultant agreed to.

It was also decided at this point that pegj's weren't working for me, and it was decided that I should have a surgical jejunostomy placed. So, that's my tale of the wandering tube. I have heard of others who managed to get theirs into their mouth, but none who got theirs stuck there. Well, I have to be different;-)