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My feeding tube journey

Updated: Aug 4, 2023

Hello everyone, 

Hope your all well 

It was Feeding tube awareness week on February 4th - 8th 2019, to help spread awareness I am going to be writing about my journey of getting a feeding tube.

So it started at the end of 2015 the doctors and my family were getting worried at how much weight I had lost due to not eating enough I went down to 18kg which is really dangerous. This was due to me finding it hard to eat and finding it a chore because of the amount of time it took, it took me 1-2 hours to eat a meal. I also got regular chest infections because the amount of food that was entering my lungs after each meal. My mum rang the speech and language people at hospital as she was concerned at the amount I was eating, this is when they referred me to have a videofluoroscopy. During videofluoroscopy i had to swallow varieties of food and drink which had a special dye in so they could see where it was going. The results showed that most of it was going into my lungs so they decided that it was to dangerous for me to be eating so the following week I was admitted into hospital and I had an emergency nasogastric tube inserted. The nasogastric tube is a feeding tube which is put down your throat through your nose into your stomach.  In my opinion and my experience it was the worst thing ever, when it was first inserted the tube went in my lungs which made me stop breathing this scared me a lot. The second time it went into my stomach but hospital put an adults tube rather then a childs tube this had left me without a voice for 2 weeks as it was blocking my voice box, I still find it difficult to say certain sounds due to this. I was in hospital for 2 weeks while my family learnt how to use my tube. When I got home my community nurses relised this and immediately changed it to a smaller one. My body reacted well to the milk but the tube made me feel really ill and I couldn’t do anything probably until it was out. The tube broke quite a few times so had to be changed a lot this was the worst part of the journey because it made me feel really sick when they passed it down. 

I had this tube until Febuary 2016 when I had my PEG done, the PEG is a tube which is inserted into your stomach as a easier way to get food.  The surgery was due to be much earlier then this but because of my respiratory needs a I had to have the operation at a respiratory hospital and the beds kept getting used by emergency patients last minute, this was very frustrating as i still had the nasogastric tube in. The surgery went very well and I recovered quickly, I had this tube for about a year and it definitely helped me a lot to put on weight and have all the nutrients I needed. In April 2017 I had the tube changed into a Micky Button for this procedure I was awake so felt them change it, it didnt hurt as much as I expected. To change it they opened the clasp on my PEG then cut it, the bit it my stomach just dissolved in my stomach and the other bit they pulled out and replaced it with a button which is held in place with a balloon. It just felt like tugging in my stomach which felt very strange. I still have the button now and will continue to use it for the rest of my life. I have it changed every 3 months and it feels like tugging in my stomach. The button is a lot easier as the tube is only attached when I have a feed so there is less chance of it being pulled. I don't have any food or liquids in my mouth as it is unsafe but to get flavours I chew certain foods but I have to spit them out rather then swallowing them. At first I didn't like to do this as I was scared I was going to swallow it but now I do it most days. 

I will attach some picture of myself with each tube so you can see the difference.

 Me now                Tube attached     My button          Before feeding        My PEG             My NG tube

                               to my button                                         tube

If you feel that eating has become too hard or you've lost too much wait due to eating don't hesitate speaking to a doctor about getting a feeding tube, it has made me a lot healthier. Also if you have any questions feel free to ask I'll be happy to help.

Thank you for reading

Ellie X                                                                                                                                                                                                                                                                                                                                                                                                     

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