Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Peg problems

seeker1
Posted by

I had a balloon peg fitted in ...... about five weeks ago and complained that it was hurting me. The peg nurse said I should just keep taking pain killers till they have time to treat me.
I had a lucky break last Wednesday at 7.30 that, during refilling, the peg came out so now I became an emergency since it has to be put back within three hours or the hole closes I went to the Royal London arriving about 8.30 to A & E. Since I had a 'window' till 10.30 I was only seen then and although I had a new balloon peg with me the doctor only put in a balloon catheter (I have no idea why).
He then said I have to stay the night since an uninhabited bed cannot be reserved for me and I may not have one the next day. (I should have brought a dummy with me). At 3.am a bed was found for me in a ward with two empty beds. Do patients really leave at that time or does it take so many hours to prepare the bed. I asked for ear plugs to be able to sleep and was told that we are not the rich ..... my regular hospital (and cant afford them). So I ended up not sleeping with all the noise going on. The next day a junior doctor came and I had an x-ray to see if the catheter was in the right place. This to my mind is totally unnecessary since one just has to take juice out of the catheter and see if it is stomach bilge. Then two nutritionists came to see me and since I cant talk I tried to explain to them what I considered the problem in writing.
My peg had previously been going in and out giving me acute pain which they knew about and had seen pictures of. So where was the peg going into, when it went in. I consider it could be two places. Either it was going further into the bowel or the bowel was moving and dragging the peg with it. They didnt understand me at all and kept saying the bowel moved all the time. If they meant up or down or sideways or back and forth then it could very well drag the peg with it. Or did they mean the contents of the bowel. Since they didnt explain I dont know except that they said it definitely went into the bowel further. If the bowel could not move why did I have the x-ray in case the catheter went into the wrong place. I dont know how the bowel is held next to the abdominal wall. If it is only held by the peg then the same as the peg can move further inside the bowel, the bowel should be able to move away from the wall. If it is held otherwise then why should I be needing an x-ray to know where the peg went into. It is a very remote possibility that it should be held by the peg and the peg should move without the bowel being able to. Maybe someone can explain to me, not being a doctor what is really going on. The nurse afterwards showed me the report saying that I needed a doctor to speak to since we dont understand each other. I asked for a printed copy and was told that I had to make a written request. This sounds illogical, if I am allowed to see it why not also be allowed a printed copy. A junior doctor came to see me but he said I knew more about pegs than he did.
Like what silver nitrate is used for.
After another sleepless night a doctor came to see me in the morning with two students. He told me he had seen the unnecessary x-ray pictures and I was in order. I asked him if he really thought there was a possibility that the catheter was in the wrong place like the cavity it would be dangerous to put the pint of liquid that had been put in, to show up on the x-ray. He said that this is his problem and I shouldnt worry (whose body is it?). Then after some time of trying to understand each other I said I am the patient and what about my problem of where the peg is going to. He replied that this is not his department and left one of his students for me to explain again the simple thing of where the peg, when it goes in, is going to. I wonder why he came at all.
Afterwards one of the student doctors came and put in a canula. I still have no idea why since it wasnt used. She wasnt very expert at it, and the only reason I can think of is to give her practice. I am quite happy to oblige to helping the free NHS train their doctors and wonder if this is common on all Royal London patients. Then the nutritionist came back, with again saying the bowel moves all the time. I realised that what I wanted which was to find out where the peg was going is either impossible or very difficult, so I relented and said she should imagine it was just going further into the bowel like she wanted and if it was wrong I would come back. She agreed I should come back but not to Royal London but to ... my regular hospital (and wait for months or forever). She put in a different kind of peg without using a wire, similar to nails used for holding cupboards on false walls where the ends upen up on the other side to hold it. Since this is not a balloon it wont be dragged down in the bowel. She tested to make sure it was in the right place without an x-ray but by extracting juice to make sure it was bowel bilge. It didnt take her long at all and seemed simple enough although looks can be decieving whereas the .... my regular hospital say all the time it needs a doctor who cant find the time in five weeks to see me for a few minutes.
So far my peg has not moved at all. So it seems I am ok. So I have to thank the Royal London even though it took to starving me out and depriving me of sleep for two days at least now I seem to be ok. Why they make balloon pegs is beyond me. So if someone has a balloon peg causing problems he should take it out and create an emergency, go to the Royal London take with a dummy, ear plugs and perhaps instillagel. Expect an unnecessary x-ray and canula. Use the instillagel if you dont like sharp scratches it may help. And expect a two day stay of starving and sleepless nights. Or because of learning of my experience they may do it on the spot after waiting three hours since having taken the peg out, to make sure it really is an emergency.

seeker1
Posted by

Thank you for taking the time to email and I am glad the tube change on 1st March has resolved your issues finally. Can you please confirm your name?
My team reviewed a gentleman on Friday with the initials Mr ........ is this you ?
I look forward to hearing back from you and answering some of your questions.
Kind regards
Lead Nurse in Nutrition Support
Barts Health NHS Trust

seeker1
Posted by

Apologies if you have felt that we were not doing enough for you at ......
The recommendation of your taking painkillers was based on you reporting not taking any.
The case was discussed with your surgeon Mr D.. that felt there was no reason for the reported pain therefore a tubogram was requested to confirm the tube position.
Unfortunately the only tubes that are suitable for jejunal placement are surgically placed and the risk of such surgery is higher that the use of a non-licensed balloon tube hence the use of those when the original surgical one brakes or comes out.
Peristalsis / movement of the small bowel will allow for movement of the tube and therefore the balloon inside; that would probably create some discomfort but this is more often than not managed with paracetamol
The reason that we do not use monarch tubes is not its price but because we do not have them as part of our regular stock and the method used to remove them (by traction)
We are always looking to improve our service so we appreciate your comments and feedback
Many thanks
Kind Regards
E...

seeker1
Posted by

I consider the above disgusting I cant think of a better word, because they dont have monarch pegs and for some reason dont know how to take them out (when I want to put them in) they dont stock them, so they want me to live on painkillers. I am happy to say that since the Royal London has put in a Monarch peg I am perfectly happy.