In support of PINNT’s Home Artificial Nutrition Week, we wanted to write about the different ways and means a person can get their nutritional needs fulfilled, when they cannot get enough to sustain them otherwise. Such experiences require one or many of the different devices listed in our library. This is a chance to increase awareness of what they can be used for. What better way to describe the process than a personal perspective…

Enteral Nutrition (EN)

Nasogastric (NG) Tube

Nasogastric (NG) tubes are probably the type of device used for feeding that people are most familiar with (though they can be used for other purposes as well) .Probably because it can be seen externally, so most of us have either seen someone in person or through media with one. This was the first type of tube I had, it’s inserted through the nose, down the back of the throat through the oesophagus until it enters the stomach.

I was fed formula through a pump. (I will talk about pump feeding here for all the tubes I had, as that was the method suitable for me). There are lots of different types of formula, the dieticians choose the formula based on the calorie, nutrient and other medical requirements you have. The formula gets connected to a pump through some tubing know as a ‘giving set’. The end of the giving set would then attach to the end of my tube. The pump would be programmed to the rate of delivery. I don’t remember how long my schedules for NG feeding were exactly, but they took most of the day.

Gastrostomy (G tube)

After a little while with the NG tube, I was given a Gastrostomy. This is where an incision is made on the abdomen through to the stomach wall. The stomach wall is pulled up against the abdominal surface to make a stoma. A tube is then inserted through the stoma. The tube (often called a G tube or PEG) has either a plastic bumper or a balloon on the inside (of the stomach) to be prevent it from falling out. It also has a flange to secure it externally. The advantage of a gastrostomy is that it cannot be seen and the stoma can potentially last a lifetime. The process of feeding was otherwise the same; formula delivered via a pump over a long period.

Jejunostomy (J tube)

Unfortunately for me I wasn’t able to get enough calories and nutrients through being fed this way. The next step was to try feeding further down the GI tract to see if my intestines would tolerate it better. This meant having a Jejunostomy. The jejunum is the second part of the small bowel. Once again, a tube is placed through an incision on the abdominal surface, but this time it led to the small bowel. With a J tube feeding has to be via a pump and it is slower compared to feeding to the stomach. The bowel does not have the same kind of capacity, so feeding can be up 24 hrs a day.

It all sounds straightforward, and it’s certainly true that it quickly becomes the new normal. I felt overwhelmed for maybe the first fortnight or so, when I was first at home with each new stoma/device, without the support of the hospital staff, but after that my confidence in the actual process and troubleshooting built quickly. Nonetheless, it is challenging; ordinary activities from the mundane to the social have to be reconfigured. They can be achieved for sure, but a lot also depends on your overall health. For me, I was still very sick and unfortunately all the methods of tube feeding that I tried were just not tolerated by my body, so I was not getting the much needed calories and nutrients throughout all the many many months of different types of tubes and stomas. My weight and health ended up at a critically low point, at that point I started TPN.

Parenteral Nutrition (PN)

Hickman line ®

I had a Hickman line placed so that I could receive parenteral nutrition. The PN goes straight to the bloodstream via the central veins and the heart, thereby avoiding the gastrointestinal system altogether. For people like me with Intestinal Failure, it allows enough us to gain enough nutrition to survive.

My Hickman line was placed via an incision in my jugular vein, through which the line was inserted, one half threaded down the superior vena cava to the top of the right atrium of my heart, the other half threaded out through another incision about half way down my chest wall. This is where the external section of the line sits. The PN (sometimes refered to us Total Parenteral Nutrition (TPN) or Home Parenteral Nutrition (HPN)), is also administered through a pump system, set to deliver at a particular rate. The initial hospitalisation was lengthy. Unlike formula, PN infusions are compounded to individual requirements. It takes some time to get the prescription right for each person. All connections must be carried out using aseptic technique, as introducing microorganisms has serious and potentially life-threatening consequences. This meant that the process of connecting and disconnecting takes a long time. Even longer at the beginning when I was having to be taught to do the process myself. Added to this, I needed to be treated for refeeding syndrome, having been underweight and deprived of nutrition for such a long term.

Coming home with PN was scary. I was concerned about the risks of a line in my heart. In the beginning, I was fearful of making a mistake in the process. It certainly felt like a lot of responsibility to shoulder. I was used to being responsible for my own life of course, but not for running the gauntlet with it on a daily basis. Initially my homecare company sent nurses in everyday, to oversee my training with it and to check how I was doing, which was helpful. There was also a huge amount of supplies to find space for and a full size pharmacy fridge for the TPN (which has to be kept refrigerated). There were a lot of changes to get used too, even figuring out how to shower with 30cm cable in the middle my of chest that cannot get wet! Like with the EN though, I’d did get used to it over time. Also, the fear of sepsis and the other serious complications that can occur, although still present, became less dominant.  I think it’s a good thing to be a little afraid still. It means I am never complacent about my PN routine. I never rush even when I’m tired and very sick, I just say to myself which would you prefer, a few more minutes ensuring everything is fully sterile or sepsis? A no brainer obviously.

Clichéd though it may be…PN saved my life. I wouldn’t be here today, if some great medics had not persisted in finding an alternative way, to get vital nutrients into people like me who’s intestinal tracts had given up altogether. I was malnourished, severely underweight and very sick. I’m still very unwell – my underlying disease has not left – but my weight and nourishment have improved substantially. It isn’t easy, it requires a great deal of time and commitment, it curtails my freedom, and being tied to a machine all day can be very hard. Going away from home is like a military operation! However, if there is something that is really important to do, then with patience, creativity, planning and a little more patience, it can generally be realised, even if it’s just the once. As with enteral feeding, a lot depends on the rest of your health. PN isn’t a one size fits all thing. The best way to find out about the life of someone you see on enteral or parenteral nutrition is to ask. To those who developed PN and those who have helped me and continue to help me live on it now, I would like to say thank you.

For further information visit PINNT