Home Artificial Nutrition Week – UPDATE

8-14th August was Home Artificial Nutrition Week, organised by the PINNT charity. As someone who has had his life saved twice by different forms of artificial nutrition I should have been fully behind this campaign, but I’m over three weeks late writing this article, sorry! My excuse is good though, I’ll get to that later.

This post might seem repetitive compared to some others. But I get new visitors to this site every week and the aim of Home Artificial Nutrition Week is to raise awareness, so regularly readers will have to bear with me.

Artificial nutrition is a life sustaining treatment for people who cannot eat food normally. There are two main types:

Enteral Nutrition (EN) This is where a nutritional fluid is given through a tube into the stomach or small intestine. It can be done on a short term basis by inserting a tube through the nose. If enteral feeding is needed on a longer term basis a tube is inserted through the stomach wall called a PEG (Percutaneous Endoscopic Gastronomy). The nutritional fluid used is similar to a milkshake. Any person could drink it and gain nutrition from it.

Parenteral Nutrition (PN) This is where a nutritional fluid is given through a tube into a vein (intravenously). So this process bypasses the digestive system, putting nutrients straight into the blood. There are much greater risks associated with parenteral nutrition so it is used far less often, usually on patients who are not suitable for enteral nutrition. The nutritional fluid used is manufactured in sterile conditions in a laboratory. It is usually made to each patient’s individual needs, then stored in a pharmaceutical fridge. It is for intravenous use only, ie. you cannot drink it.

My own difficulties eating food started over 20 years ago. It began with experiencing tachycardia (a rapid heartbeat) after eating foods high in sugar. The problem got slowly worse until 2010, when I reached the point where I couldn’t eat any food at all. I ended up in hospital with dehydration where I stayed for nearly a year. I was fed using enteral nutrition, which continued when I finally went home. Enteral nutrition kept me alive but I found the process uncomfortable. As I could only tolerate being fed very slowly I also had very little time each day when I wasn’t attached to feeding pumps.

I was fed solely by enteral nutrition for about 3 years, but I struggled to get enough calories and had symptoms of malnutrition. Slowly my weight fell to 7 stone, at which point I went into hospital to start parenteral nutrition alongside enteral nutrition, which suited me far better. I received half my calories through parenteral nutrition and half through enteral nutrition. In the first year I gained over 3 stone. Three years later I now get 90% of my calories from parenteral nutrition, as I can barely tolerate enteral nutrition at all. Thanks to both forms of artificial nutrition I’m now a healthy weight and manage to live alone. – Despite the great benefits of artificial nutrition, when I describe to people how I am fed awareness and understanding of the treatments is usually poor. Often people find the very idea of artificial nutrition unpleasant.

A dog ate my blog post

My excuse for the lateness of this article is oddly relevant… Parenteral nutrition is pumped into the body through a tube called a Hickman line. It passes under the skin and enters a main vein in the neck. I’ve had my Hickman line for about 5 years. They have an average lifespan of two years so understandably, like me, my line is starting to show its age. Some weeks ago it became partially blocked. It took two trips to a north London hospital to resolve the problem. First they tried a clot-busting drug called Urikinase (derived from human urine!) but that didn’t work. On the second trip they tried injecting pure alcohol into the line, which thankfully dissolved the blockage. (It didn’t get me drunk though which was disappointing. 🙁 )

A few days after that minor crisis, an infestation of insects arrived in my bedroom! Two of my neighbors have the same problem. We live very near a river which may be where they came from. When you’re fed by parenteral nutrition hygiene is absolutely crucial. All of my medical equipment is stored in my bedroom and I usually set up PN in there. So having insects flying around was a big problem and I was advised to move out of the room. It’s been a lot of hassle and I’m currently sleeping in my lounge. My bedroom has been sprayed with insecticide and cleaned endlessly. The insects seem to have been killed off, but until that’s certain I can’t move back into the room.

For people who are tube fed blockages are a common problem, insect invasions less so! But both are good examples of how careful you need to be when you’re fed by artificial nutrition. Due to the blockage and the bugs I’ve had a hectic few weeks, dull too. I had some fun plans for this summer but I haven’t had time for any of them.

So artificial nutrition has many drawbacks and I miss food every day. However considering I cannot eat food at all and I can only drink a small amount, the fact I’m still alive is really rather amazing. I’ve lived for six extra years and had many happy and memorable days in that time. So despite all the problems I’m very very grateful for artificial nutrition and wish PINNT every success in raising awareness of these vital life saving treatments.

Thanks for reading, Ceri.

ps. To support the PINNT charity and their Home Artificial Nutrition Week I bought one of their ‘Drippy’ teddybears. They are trained to provide companionship and hugs to people receiving artificial nutrition. I’m required to name the bear which will be registered and I’ll be sent an official adoption certificate. Can I have suggestions for his / her name please? – I’ll add a photo of the bear when it arrives. You can see what they look like, or order your own Drippy bear HERE.

Update: Here’s my PINNT bear. I chose the name ‘Han’. It was my sister’s suggestion. It stands for Home Artificial Nutrition. It’s a pure coincidence that it also happens to be the name of my favourite Star Wars character. ?