Over the last 7 years I’ve been on and off full TPN feeds which is where all your calories and nutrition is provided in liquid form and through a central line, in my case a Hickman line in my chest. I was first on TPN after the 2nd part of my j-pouch surgery in 2014 when my bowel didn’t ‘wake up’ and start working as expected. This was when I spent the best part of 11 months in St Marks hospital in London while they stabilised me and got me well after things didn’t go quite to plan after the surgery. By the end of the 11 months I was off full feeds and onto fluids only as my bowel wasn’t absorbing fluids and without fluids through my Hickman line every day I would literally have dehydrated and died.
More recently my bowel has decided to give up the ghost and eating and drinking has become so problematic and causes me so much pain that I’ve basically had to stop. Before I was admitted at the end of December last year I had lost 2 stone in about 6 weeks because I wasn’t able to eat much more than a packet of quavers a day. So my team decided that going back onto TPN feeds full time was pretty much my only option.
But TPN isn’t a quick fix and comes with its own set of risks. Firstly, one I’m very familiar with is infection. To have TPN you generally need a Hickman line and because the line goes straight into the major vessel of the heart getting an infection can lead to sepsis very easily. And sepsis can be deadly. Other complications for those on long term TPN can be osteoporosis and serious problems with your liver and gallbladder. I try not to think too much about the damage TPN feeding does to my body because it is the only thing that is keeping me alive right now. I remember a consultant at St Marks telling me that being on TPN can knock 10 years off your life expectancy but I have to focus on the here and now and let the future stay just that, in the future. I dream that over the next 10 or 20 years there will be medical advancements in either bowel transplants or treatment of bowel disease that could change my life, or if not my life, those of the next generation of sufferers.
Being on TPN isn’t easy; I’m hooked up to my feed 16 hours a day. I have to get my feed out of the fridge a couple of hours before I plan to ‘hook up’ and have to plan my connections and disconnections around everyday life. Being in hospital it hasn’t really mattered but now I’m home I’ve had to set alarms on my phone to remind me to get my feed out of the fridge because hooking up to cold feed can make you poorly; it’s too much of a shock to the body. I have my feed in my rather fetching rucksack which is much better than the bright yellow and blue one (think minions) that I had for the first few years! Each bag of feed weighs 2kg, plus the weight of the pump and the rucksack so when I’m having a bad day lugging all that about can be exhausting.
I also need a ridiculous amount of medical equipment: I have a huge medical fridge to store the feed which gets delivered fortnightly, and then there’s all the ancillaries (posh name for all the stuff needed to to hook up in a sterile way) that I have to store as you have to have a two week supply plus an emergency supply of two weeks worth too.
All of this takes a lot of planning but it does mean I am able to lead some semblance of a normal life. Well, maybe not your kind of normal but normal for me. Without TPN quite simply I wouldn’t be alive and so for all the frustrations and the difficulties it can present I know I’m lucky to live in a country where this is readily available to me, and free too.
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