18/3/18 - I am currently selling raffle tickets for the Easter Fundraiser' (information on how to purchase tickets can be found here).


3/3/18 - I am currently going through the process of redesigning this blog so that 'Bravery Bottles' is separate from my personal blog; where I post about my illnesses and life updates..this means that sometimes, my blog may be closed from time-to-time, but I’m always available to be contacted at

Tuesday, 13 February 2018

Feeding Tube Awareness Week

As last week was 'Feeding Tube Awareness Week'; the purpose of which obviously being to raise awareness of living with a feeding tube, something that doesn’t happen by itself. Living with a feeding tube isn’t how people usually perceive it, and amongst everything else in terms of my health, nutrition and feeding is something that I don’t talk about as often as the rest of my tubes. My feeding tube is just 1 of the 4 long term medical adaptions which essentially keep me alive, yet my feeding tube is one which I don’t tend to focus on as much as the others.

I think that it’s crucial to begin by saying that firstly, there are lots of different forms of artificial nutrition, and secondly, which is perhaps of bigger importance, is that there are lots of different reasons to require a feeding tube. Obviously, ultimately, it’s to enable proper nutritional intake, but the reason for not being able to take nutrition orally differs from one person to the next.

Without going into too much detail, there are 2 different types of tube (each having different sub-types however); nasal tubes, and surgically placed tubes. The destination of these tubes (e.g. stomach, bowel etc.)

Personally, I’ve had a variety of different tubes since becoming ill. For the first few years, when my diagnosis wasn’t clear, I dipped in and out of being fed by tubes temporarily; when I was going through a bad flare in hospital. For a long time, I was fed through a naso-gastric tube (also known as an NG tube) when I was particularly unwell, but could always go back to food as the flare started to pass.

As my gastro-intestinal problems got worse, and eating became more painful and brought on more symptoms, so did the NG feeds. I went through times of needing a tube to aspirate (drain) the contents of my stomach, using a tube called a Ryle’s tube - which is essentially a thicker NG tube that takes contents out of the stomach as opposed to putting it in. The problem with this then turned to nutrition again, and as I could no longer be fed through my stomach, I had an NJ tube placed. This is still a nasal tube, but it goes to the Jejunum - the start of the small bowel - by passing the stomach but still providing adequate feeding.

Nasal tubes aren’t a long term solution, and when a diagnosis points towards malnutrition being a long-term problem, surgical tubes are usually placed. This can be done via endoscopy or x-ray, and again can be placed in a few different places, but ultimately the difference wtith these tubes is that it does not get passed through the nose, and instead via a surgically made stoma.

In December 2016, my consultant decided that a surgically placed tube was the best option for me going forward, and it was then that I had a RIJ placed. This stands for ‘Radiologically Inserted Jejunostomy’, and in simple terms, is a tube that is placed using X-Ray in the Interventional Radiology unit at the hospital, and is placed into my Jejunum (small bowel), bypassing the stomach.

This is the tube I have today, although it still isn’t as straightforward, nor successful as you’d assume. I find feeds hard to tolerate still, meaning I have to feed at a very slow rate (the equivalent of 4 teaspoons of feed per hour). This isn’t ideal because, to meet my nutritional requirements, I have to feed over 20 hours per day with only a 4 hour break. In an ideal world, the usual protocol is to feed overnight so that I could be tube free all day, but unfortunately for me currently, I can’t withstand the higher rates of feeding condensed into a shorter time frame.

Looking forward, I hope to reach a point where the RIJ becomes a successful way of feeding for me, but, as things stand, the prospect of requiring TPN (Total Parental Nutrition) - a way of administering nutrition that is tailored to your exact requirements through a central line) is becoming more real. I hope to be able to avoid this, but, it’s a waiting game to see how much my body can tolerate as the volume of feed I am given through my current tube is gradually increased.

My feeding tube, apart from nutrition, is a way for me to gain the hydration I need (water can be run), but more importantly, is the way I receive the majority of my medication given that my stomach doesn’t work efficiently. Without my tube, not only would I not have efficient nutrition or water, but I also wouldn’t get my meds - some which are vital to keep me alive.

It’s another situation in which another tube in my body is not something I want, but it’s something I need, and know that without, I would be in a much worse position. I’m grateful that medical advancements and our National Health Service means that I can live a fairly normal life, albeit with a tube, but a tube that keeps me alive.