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:

NG v PEG feeding tubes & My PEG two weeks in.

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.

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?

NG versus PEG feeding tubes – This patient’s view

For the last two and a half months I have been fed through an NG tube. For the first two weeks much of this was done for me by the nurses at my local hospital and I had time to observe and get used to the feeding regime. For the last one and a half months my consultant has been trying to organise switching me to a PEG. For various reasons the procedure kept getting moved and finally on Thursday I had a PEG fitted under general anaesthetic. On Friday I returned home and now have to manage feeding myself with a new system that I have only seen used once in a hospital setting.

Everyone I spoke to assured me that the PEG was far better and easier to care for than the NG tube but having managed with the NG for nearly three months I have my doubts and I am not sure I would have switched if I had known then what I know now.

In an attempt to put things into perspective here are my pros and cons for the two systems.

NG tube

Pros

1.       It enters your body through your nose and a new stoma (hole) does not have to be created to accommodate its insertion

2.       It can be tucked discretely behind your ear and therefore doesn’t get in the way when not in use.

3.       The way my tube was set up there were two taps which could be used to insert feed, meds and water into the tube. This meant if you need water during you feed your could stop the feeding pump and flush water without needing to disconnect anything.

4.       Tap water can be used to flush the line and for ‘drinking’.

5.       If the NG falls out a new one can be inserted into your nostril relatively easily. It is uncomfortable but the hole is already there so no cutting new ones is needed.

Cons

1.       The tube has to be taped to the side of your nose and possibly to the side of your face to ensure it doesn’t fall out. This tape leaves your face sticky and difficult to wash and has to be replaced every few days.

2.       The tube coming out of your nose means everyone knows you have one – although if you’re looking for a sympathy vote this is actually a pro.

3.       In order to use the NG tube your first have to check it hasn’t moved. It is possibly that it could slip into your lungs. This is unlikely, but possible, so every time your use the tube from scratch you have to aspirate. This involves drawing fluid from the tube and testing it on a pH strip. The fluid should be stomach acid and should turn the strip red. There are a number of problems with this:

a.       Sometimes you can’t draw any fluid. In this case it is recommended that you lie on your left side and wait. Hopefully in about twenty minutes you should be able to draw some fluid.

b.      You draw fluid but it turns the pH strip blue. This could be for a variety of reasons but it means you cannot use the tube as you cannot be sure that it is in the right place. Again you are recommended to lie on your left side and wait, trying again later. If this still doesn’t work there are a number of ways to check the tube is in the right place but they all involve a trip to the hospital.

 

PEG

Pros

1.       It can be tucked down your trouser leg when not in use. Hopefully it will not get tangled in my trouser when they need removing but this has yet to be seen.

2.       You do not need to aspirate to check it is in the right place and it is sticking out the side of your stomach – there is no place else it could go.

3.       No one knows you have one.

4.       My throat needs to heal so being fed through a tube which isn’t going through your throat is a good thing.

Cons

1.       It goes directly into your stomach and therefore a hole has to be cut through your stomach lining to the outside world. This hole has to be cleaned and maintained – by rotating the tube – to ensure the tube doesn’t get embedded in your stomach lining.

2.       My tube only has one tap. In order to take on water whilst feeding I have to stop the feeding pump, remove the line and then flush water. This is not a difficult task but does require at least three hands in order not to have to put anything on a surface that may not be totally clean.

3.       I have been advised to use sterile water as the PEG misses out some of your stomach.

4.       It the PEG gets pulled out I need surgery to refit it.

5.       My PEG is very long and dangles down by my knee. This seems too long and has the chance that I may roll onto it in the night or sit on it during the day and displace it. I have been told I can cut it but I am not sure about this. If I do it wrong, it is surgery to get a new one fitted.

6.       Currently my PEG hurts. This is mainly because I have had surgery and a hole cut into the wall of my stomach less than three days ago. I am assuming this will stop soon.

7.       After fourteen days you have to push the PEG in, twist it round and then pull it back out again. This is to stop the thing holding it in your stomach from embedding in your stomach lining and sounds relatively straight forward. However, you have to make sure that when you pull it out it is in EXACTLY the same place as when you pushed it in. There are marking on the tube to help with this. I didn’t really understand the consequences for not doing this right but I do remember it sounded bad. Back to google for me on this one.

8.       The PEG has to be cleaned daily and checked for discharge and rubbing behind the plastic plate that holds it to your stomach. If it gets infected you need to contact a medical professional straight away.

 

I know I have only had my PEG two days so I still am getting used to it, but I do not yet see how it is so much better than an NG. Yes there are things you have to do to look after an NG which are difficult but it seems to me there are just as many things that have to be done to a PEG, and with a PEG if you do it wrong you need surgery to put it right.

Do you have experience of either of these devices? How did you find them? Did you switch between the two and if so which worked better for you?