The dietician still seemed a bit unhappy with nothing really positive to say. She said from her perspective she would be pushing for TPN now and that I should consider it further. They always throw it around but I'm never really sure what they really want to do. They always ask me 'What are your thoughts?' and I just don't really know. This time I said that I felt like I hadn't moved forwards for a long time and that I am increasingly struggling and was certainly more open to it this time compared to previously being so cautious and wary of it. She was concerned that I'd needed another admission and that this wasn't very good for my quality of life.
Then I went to have a pile of bloods taken (I mean.. a PILE!) and then I went in to see the consultant on clinic who was a different consultant to the one I saw last time. She was very nice and quite easy to talk to. She was up front with me that they had literally no notes or results other than one piece of paper with a few scribbles on (last time they said to come back once they'd done a bit more 'research' on me which... had obviously not gone well).
Anyway, she said that whilst that I was 'managing' I no longer had any reserves. I can't remember the exact wording of what she said but that with my gut clearly functioning so poorly, there was a feeling that it wouldn't go on like this much longer and would stop? give up? not work? not tolerate anything at all? Something to that implication. She felt that it would be in my best interest all round to start on TPN to get some proper nutrition.
I don't really know how it made me feel. She gave me a very serious talk about the seriousness and risks of going on TPN which was a bit scary and negative and then asked me if I had any questions.
I mentioned that the previous consultant threw up a few ideas such as surgery and a different type of feeding tube, and trying some different feeds (again) and what her thoughts were on that and I just got the impression that 'Do you have any questions?' was actually rhetorical and that the answer she was looking for was 'No thanks that's everything'. She just said that she didn't really know and made some comment about the more of my bowel that I have that doesn't work very well the more poorly its going to make me. I'm not entirely sure what that means but... TPN it is!
I've gone on a waiting list which she said 'may take a few weeks' and in the meantime to go back to Wythenshawe if I get poorly again. The word on the street is that the Salford Intestinal Failure Unit can take a long time for a free bed so I'm not packing any bags just yet and expecting it may be longer than 'a few weeks' before I get in there. She said once they have a bed ready then I will go in and have it for 4 weeks through a PICC line and if we are all happy with how things are going then I will go ahead and have central line before learning how to administer TPN myself at home.
For those of you who are wondering what TPN is, (and there may be a few!) I will do another update on what TPN is shortly as it's now quite late. I'm going on holiday on Friday and I anticipate that I will be too busy to update tomorrow so I will just try and explain what it is in a few words. TPN stands for total parenteral nutrition. Parenteral means going into the bloodstream. This form of nutrition is completely artificial, as opposed to enteral feeds (the ones that currently go through my tube) which are technically still a form of food - a bit like baby formula! The bag of TPN are made up 'bespoke' to fit individual needs and regular bloods are taken to ensure that there is not too much or too little of anything in the bags and that the nutrients aren't causing any imbalances. Unlike the gut, your bloodstream doesn't 'filter out' what it doesn't need. Long term TPN will go through a surgically placed catheter which will sit inside one of the central veins in the chest or upper arm. It does a similar job to a cannula but it will last longer and won't irritate the veins because the central veins are much bigger.
I'm really feeling quite shoddy at the moment so I'm quite looking forward to my holiday to Scotland on Friday so I can get plenty of rest. I thought I'd share with you a picture of tonight's blenderised dinner. Can you tell what it is?
Looks vile but it didn't taste that bad, as confirmed by Mum and Nigel! It's blenderised roast chicken dinner. Mum decided to add spinach in which I'm not a fan of and it's given it that lovely green colour.
The next post I do will be when I get back from Bonnie Scotland. Have a good week, all!
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