Tube feeding, my experience by Sam

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Tube feeding, my experience by Sam

February 12 2020

14 year old Sam shares his experience of tube feeding and how it has impacted on his life.

Tube feeding – first an NG tube

I was 7 yrs old when I had my first feeding tube, this was because my body couldn’t absorb all of the essential nutrients that I needed in my diet, and I was permanently ill with pain and I was always so tired.

At 7yrs old I was fed up of the constant pain and other problems, so I agreed to have a nasogastric (NG) tube. This a tube that goes through your nose and down your throat into your stomach. This was incredibly uncomfortable, and I wondered if the discomfort was worth it. The feed that went into my tube was already digested so I could get the essential nutrients into my body while my gut could rest.

This photo was me the day I got my first NG tube. It was 31/10/2012. You can see I looked very unwell:

After a couple of weeks I still hated the NG tube but I started to feel better in myself so I realised it was probably working. My health and my energy were improving.

Tube feeding – from nose to stomach

After a couple of months of having my NG tube, my Dr recommended a tube that went through my stomach.

This was life changing. It improved my life in every way possible. This was because I was more comfortable with having a tube through my stomach, much less painful and people didn’t stare at me. After a few months I was looking extremely well.

Tube feeding – getting on with life

Now I could go to school more and feel like a normal person like the rest of my friends. My life wasn’t perfect, as I still had some symptoms and pain, but it was good enough for me.

I have my feed overnight only. I am able to eat normally in the daytime, I need to eat a lot of food though and I have allergies.

A young Sam in bed with an NG tube and the apparatus next to the bed that feeds him overnight. He is cuddled up to his toy monkey. — Sam having his feed overnight.

Tube feeding and secondary school

As I reached secondary school, I went through a period that I wanted to lose my feeding tube as it was holding me back from the things I liked to do most, like football. I also didn’t like being different to everyone else and I started to dislike my tube. I persuaded my Dietician and Doctor to let me try to lose my tube but when we reduced my feed I started to become more unwell again. So I had to accept that the tube feeding was the best thing for me.

Now I am 14. I am very comfortable with my tube and not shy about it, it makes me more confident being open about it. I recently went to the Netherlands to speak about my life story to important Doctors from around the world. One Doctor told me afterwards that he would change part of his practice after listening to what I had to say. It was so good that the Doctors were happy to listen to the patient.

Here is an old photo of me and my brother with our Gastrostomies.