Sunday, 22 February 2015

You wait months for a PEG – and then two come along at once

Those of you who have been following the story of my PEG will have seen my previous two posts:

As described previously it looked like my first PEG had embedded itself into the lining of my stomach after only fourteen days. The general protocol with a PEG is that after fourteen days the PEG should be pushed a short way back into the stomach and rotated. This shouldn’t be done any sooner as the tract needs to form between the stomach and the outside world. Any sooner and there can be complications with the internal layers not knitting together properly and there is the chance of infection.

Last week I had an endoscopy to check that the bumper really was embedded. This has to be the worst thing I have experienced since becoming ill. As I lose the ability to breath if I am sedated and laid flat the endoscopy had to be done whilst I was wide awake with just some numbing spray for the back of my throat. I felt as though I was going to choke as what has to be the largest camera in the world was pushed down my throat. At one point I thought I would throw up, and wearing a month guard and with a camera in my mouth I was not sure where the vomit would go, except back into me.

I cannot praise the nurses highly enough. The one with me kept talking to me, assuring me everything was okay and keeping me as calm as she could while the camera went down. Once the camera was down it was not as bad. Until the camera is brought out and then you have to go through the whole gagging process again.

So we now had confirmation that the PEG was embedding but that for the time being it was still working. I was told to continue using it until I could return for a new PEG to be fitted under general anaesthetic five days later. If at any point I was in pain through using the embedded tube I should go to A&E. This did not fill me with joy as so far this had always meant a four hour wait to then meet a doctor who knew nothing of PEGs and who couldn’t help me.

So I then arrived at the hospital five days later to have the new PEG fitted. The plan for the old PEG? Well they would try and pull it out but if that didn’t work then they weren’t sure what to do.

I had been nil by mouth since 10pm the night before. With a Trachi getting dehydrated can cause coughing and a lot of discomfort. There were three people waiting at 7.30am to see the same doctor and I was the last to be called. I finally went into surgery at 12.30pm. I know there is a list and therefore we can’t jump the queue but at the very least they could have let me have some water or some I.V. fluids rather than leaving me fourteen hours without anything.

Finally I was taken into the theatre and put to sleep. Imagine my surprise to discover upon waking that I now have two PEGs.

It took five hours for the registrar to arrive and to explain that they had been unable to remove the old PEG put hadn’t cut it off and left it in. She couldn’t explain why as the doctor who completed the surgery had already left the hospital to go on holiday.

The next day I was in a considerable amount of pain. I was sent for an x-ray and then doped up on Tramadol. The nurses were going to come and clean the wound and show me how to care for it, but unfortunately they were too busy, so left me with two wounds encrusted in dried blood for another day.

The day after that I was sent for a CT scan and when that didn’t explain the pain they decided to send me home with some pain killers. I have still not spoken to the doctor and there has still been no decision made as to the way forward to stop the second PEG from embedding in my stomach wall as the first did.

The treatment so far has very much been ‘well the first PEG shouldn’t have embedded, so we’ll just hope the second doesn’t.’ I have a doctor who was more intent on leaving for his holiday and who has left no instruction as to then next step with his junior doctors or his registrar. He is going to ring me tomorrow but I won’t be holding my breath on that phone call!

So keep tuned for the next instalment of how not to fit a PEG and remember if you have the choice stick with an NG tube.

Friday, 13 February 2015

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?

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