Feeding Tube decisions

The decision to have a feeding tube is a very personal one, but the bottom line is if you can no longer eat and drink because of difficulties with swallowing and inadvertent choking, you’re going to lose weight rapidly, become weak and more frail, and eventually you’ll fade away. Given the bulbar presentation of my MND it was pretty clear to me that speech and swallowing were going to be badly affected quite early on. Probably before I’d lost all ability to use my arms and legs. Would I want to die early, given that a feeding tube could give me months (or even years) of ‘extra’ life to enjoy?

My choice was to go for a feeding tube early, even if I didn’t need to use it for many months. The routine maintenance is quite minimal once a tube is placed, so there didn’t seem to be too many reasons why I shouldn’t. Another consideration in favour of early placement was that my breathing isn’t great and already is being affected by MND. So it might easily be possible to leave it too late and then find that doctors are reluctant to carry out the procedure because of compromised breathing.

From the reading I did, I discovered there are two choices of feeding tube – a PEG (Percutaneous Endoscopic Gastronomy) or a RIG (Radiologically Inserted Gastrostomy). My personal assessment was that a PEG can be a more robust solution, but it needs to be placed when you are reasonably fit. If a PEG isn’t recommended, the option of a RIG is fine, but the way in which it’s secured means that it can be a bit more vulnerable and may need more attention and maintenance. But my view is mine alone – better to read about the subject on the MND Association website.

My PEG was placed in March 2021 and the procedure is covered in my diary post. It’s very early days; I’m not using it for eating and drinking, but the job is done and I’m now ready for the next stage when I can no longer enjoy food and drink in the normal way. However, I am using it to take Teglutik (Riluzole medication in suspension). It tastes vile and I’m very pleased I don’t have to put up with that any more.