Me and My PEG – two weeks in

Two weeks ago I wrote a blog about the difference between NG and PEG feeding tubes from my point of view. If you missed it the link is here.

After that blog I was asked to update people as to how I was getting on once I was used to the PEG.

I decided to wait until it had been in two weeks as after two weeks the PEG has to be advanced and rotated. What this basically means is that the bumper on the outside of your skin is released and the tube is pushed back into your stomach and rotated through 360 degrees. This is to ensure that the internal bumper is not attached to your stomach lining.

I am not sure why you have to wait two weeks but that is what is recommended.

So as of yesterday I was getting ready to write this blog and talk about how I was no longer in pain with the PEG. How it is easier to shower. How I look more normal, no longer having a feeding tube sticking out of my nose and how I can have water whenever I like as I no longer have to check the location of the tube using a pH test.

That was what I was going to write until the nurse turned up to advance and rotate the PEG. The problem you see is that after exactly two weeks the PEG won’t advance. Yes that is correct, having done everything I was supposed to do the PEG has managed to get stuck in my stomach lining any way. This could never have happened with an NG tube.

Because of this I got to spend four hours in A&E waiting for an endoscopy nurse to try. The thing is no one in A&E knows what to do. You can’t blame them. My tube not rotating is neither an accident nor an emergency but the ridiculousness of the NHS dictates that I have to go there first to get treated.

When I finally got seen the nurses from Endoscopy where very caring and concerned but they still could not get the PEG to rotate. The doctor who fitted the tube also turned up and could not get it to advance. And that is where we left it.

Today I am going for an endoscopy so they can try and pull the tube from the inside of my stomach. If this doesn’t work they will just fit another one and leave the one that is embedded in my stomach lining there for the rest of my life. Oh and by the way there is no guarantee that the next PEG won’t do exactly the same thing.

So yet again can someone explain to me why PEG’s are so great and NG tubes are so dangerous?