A well needed update- although one I didn't ever want to have to write.

Well, Since leaving Bristol my feeding hasn't been going great. With more and more nausea and vomiting we had to reduce and reduce my fluids so  I could at least tolerate my main feed (even this we now realise wasn't enough and my weight should have been monitored more closely.) I began passing urine less and less frequently to the point I was only going for a wee every two days. My bowel became unresponsive to my normal regime of picolax, lactulose and senna. I came to the realisation that maybe things weren't as 'stable' as we first thought.

Then I began not tolerating my feeds also which had to be reduced and THEN....Then came the pain. The uncontrollable excruciating agony when Mum tried to flush any medication down the tube. The vomiting got worse, everything got WORSE. This then progressed to pain when the feed went through and no matter how much the amount I was just in agony and vomiting strong acid for at least a few hours after the tube was used.

In the end I called my dietician over at Warwick (the only contact we have), who made the decision to turn  my feed off and send me to my doctors (who couldn't have been more useless!) So the following day we then made the decision to come back to A+E at UHCW. It was a good job we did. The triage nurse took my obs and rushed me straight through, got me on drips and told me never to listen to my doctor (who told me I would be fine until I stopped passing urine) and in the future go straight to A+E so my blood sugars don't drop so low.

Because I was unable to tolerate anything via the tube I missed my steroids- meaning my blood sugars could not regulate themselves and were dropping very low very quickly. The A+E doctors told me that the Gastro team wouldn't see me that night so to come back the next day to the acute medical clinic and they would arrange for someone from Gastro to be there. So we did. We waited ALL day. Did we see anyone from Gastro? No. So we came back the following day. Mum had to kick and scream which we hate doing, just to get me seen by a Gastro doctor- who admitted me.

But for a week I have received awful treatment, I have been left with low blood sugars because I have had no cannula or they have put me on the wrong bag of fluids. I have been left with no medication for 9 days with no sense of urgency. Mum had to ASK for me to be weighed. Just as she had to ASK for my blood sugars to be checked in acute medical clinic. It really does make me wonder who the doctors are sometimes.

I am now back under Dr. B's care. Who thought it would be a good idea to pass an NJ tube, incase it was nerve damage from my JEJ tube operation causing my pain. I wish that I could say it all worked fine and dandy with the NJ tube because it just hasn't. The NJ tube gives the EXACT same symptoms as the JEJ tube and it was completely intolerable.

Dr. B the consultant was away yesterday, and I was panicking I would be left with no plan for the whole of the weekend. BUT luckily my old Registrar, Dr. S was on the ward. He took one look at me and was in shock at how much weight I have lost just since discharge and says something needs to be done. Which is where the next plan comes into play.

TPN

Total Parenteral Nutrition 

TPN is an alternative to using the gut for feeding, It involves having a central line placed and being drip fed, a bit like an IV. This is hopefully going to give my gut a break so they can explore more what is going on and hopefully get my JEJ back in action. If this doesn't happen I will stay on TPN.

TPN has it's risks. Infection is a big one so the line must be kept very clean and sterile techniques must be used. It obviously isn't natural for the body, but it is a much better option that starving, which is what is currently happening to me right now. I should be getting my line placed in theatre on Sunday ready to be used Sunday/Monday. I have already started vitamin infusions to stop re-feeding syndrome and make sure the feed isn't too much of a shock to my system. 

I am scared, but I know as with everything else I have been through- I can do this. I have been scared with a lot of things but I have also achieved them! I think once I start having proper medication again I will feel a whole load better, and of course nutrition will make a huge difference too. 

I just can't thank the people that have stuck by me enough. So many people have left me on this journey and I am forever grateful to those who haven't.