Hi folks

An update on John, and a request for help; we’re now six weeks on from his discharge after the second operation, path lab reports is that there was a margin around the tumour removed, the surgeon would have preferred it to be larger, but nevertheless it is a clear margin, so now we get on with enjoying life again. Well, we’re trying to… here’s a cry for help about PEG problems.

We lived with a PEG for six months after the first op, looks like this one is here to stay as swallowing is very difficult, still, as John says “its better than the alternative”.

This PEG wasn’t installed during the op, but done from the outside, about a month after the op (feeding was via an NG tube). The radiologist advised that the choice of PEG was limited when installing under these circumstances, but that we could get an improved model after six weeks, when the opening as established – we went for this ‘upgrade’ on Monday 17th May, but seem to have gone several steps backwards!

On return from the hospital, we set about bolusing a 500ml feed of Jevity, but terminated this at 180ml as John was uncomfortable, so he went for a lie down. He hasn’t got out of bed since then other than to shuffle to the bathroom. He’s been contorted with pain, had sickness and diahorrea (sp?), now its constipation and very scary rumblings. Medical advice has been “”see the folks that put the PEG in”, who advise, “wait and see” as there has been some trauma, the PEG is in the right place, and there are no obvious signs of infection. Just had a visit from another doctor who prescribed Senokot syrup (laxative) and Lansoprazole (to reduce stomach acid) – anybody out there with a PEG used Lansoprazole? Despite being supplied in a sachet, the little beads don’t fully dissolve and it’s a real procedure getting them through the PEG, our dietician was surprised at the gauge of the new PEG, we were hoping that it’d be bigger, so as to spend less time feeding – we had to water down the Jevity to get it through. The radiologist says he will put in whatever John asks for, but how are we supposed to know what to ask for?!

Any help regarding PEG complications, PEG makes and models, experiences about fitting and refitting PEGs, administering drugs through them and so on, gratefully received. If no improvement by 5, I’m going to take John back to the hospital.

Hi Jenbee, just read your posting with some surprise.

As you might know from my previous postings I'm on permanent PEG feed.

Just to run down. My major surgery was early October 2001. I was on NG feed for approx 6/8 weeks prior to PEG being fitted.

I didn't go for PEG fitting until mid-December and it was fitted by a gastro surgeon (Dr. Reynolds at Bradford Royal Infirmary) as an in-patient.

So, I'm a bit surprised to read that John's PEG had been fitted by a radiologist.

I'm also a bit baffled about your comments regarding an """up-grade""".

What type of PEG is currently fitted?

Mine is a """Corflo""" PEG and it's been there since Dec. 2001 with no problems.

Apparently I was started on """Jevity""" via NG, but went on to """Fresubin Original Fibre""" for PEG feed which I'm still on.

Initially I did have bowel problems sort of alternating between nothing to diahorrea to sort of normal.

I was advised NOT to lay down for at least 30 mins after feeding, but preferably to leave it an hour.

Remember the body has to get used to a whole new way of receiving it's nutrition - not easy.

When I initially started on PEG feed at home I tried an intake of 300 ml per hour. This proved too rich for me so I'm now taking it at 265 ml, and I'm doing a daily minimum of 1500ml.

I should point out that I can't take any solid food as a result of my surgery. So I can't take pills (should I need them) everything has to in soluble form which I can drink.

I don't really understand the comments about the gauge, what really matters is John's tolerance to the feed input. Too much too quickly will make him sick etc. (been there, done that). Resign yourselves to having to spend quite some time feeding.

There is a facility on the giving set whereby medication can be administered thru the feeding tube, but do remember that the tube goes directly into the stomach.

Sorry I can't be more helpful, but as an amateur I would suggest trying to do a slower feed.

Really of course you should see your dietician who should be able to give you a full run-down.

Let's know how it goes.

Dear Jenbee
I expect by now you are at the hospital and I do hope things have been sorted for you.

I have taken lanzaparozole since the middle of radiotherapy in September 2002. I initially used the powders and agree they need a vigorous stir to get the granules dissolving well. You could try straining it. It won't be so effective for so long, but would help with clogging. As soon as I was able to I went onto the tablets, but still on odd occasions have to use the powders if I get a very sore throat or heavy oral thrush which tends to close the swallow. The tablets are quite large bullet capsules.

I never had a PEG, but still take the lanzaparozole daily. I sometimes forget as I did yesterday and once it is past midday I wait in the hope that things have improved and that I won't get the heartburn etc. However by 8pm I was looking for a tablet again last night. I just cannot get by an extra 15 hours say without the daily dose.

My GP says I will probably have to take them for the rest of my life. The radiotherapy damages the oesophagus and to prevent further damage the tablets offer some protection from acid attack and possible cancer in that area.

As I said I did not have a PEG, but I did have a nasal feeding tube for some weeks. I found bolusing made me feel sick if I attempted more than 1 syringe of fluid like freshly made carrot juice or liquidised then strained home made soups.

I know I've not really answered your question, but someone out there may also be struggling with nasal bolusing. I was told nasal bolusing must be done slow and steady to avoid nausea so maybe it is the same with the PEG. I also found when cleaning the nasal tube where you have to bolus in water also used to make me feel sick when certain nurses tried to do it too quickly. When I did it myself I took it that bit slower and it always felt better.

By now I hope John has had some serious attention for this.
Kind wishes Pauline

hi
just got back, IV fluids and lotsa antibiotics and wait and see, the x-ray shows no obstruction, but abdomen is very tight and leaking from PEG site.
It was a corflo PEG that was fitted monday, I find it hard to believe that we were previously bolusing in a 500ml feed (watered down to 750 as the narrow guage wasn't happy with the viscosity) with no problems and now we are unable to tolerate any further intake, I think there must be some blockage somewhere. We tried using the patrol pump at a rate of 30ml/hour, but this also resulted in unbearable pain. Stuff goes in, but doesn't work through his system, and also leaks out at the PEG site.
Dietitian was amazed at size of PEG, saying it was the sort used on children and that a french 14 would be the sort of PEG she'd expect to see on a man John's size - anyone know what a french 14 is? This is the third PEG John's had, and by far the worst - apart from the pain and apparent malfunction, when this is resolved there will still be the problem of no clamp, so you get an overflow when swapping syringes.
We have had no information about what sort of PEG is fitted, how to look after the PEG, other than if it comes out stick it back in quickly and get to the hospital! Flies in the face of some of the NICE stuff that Dr J posted links to.
Crikey, I feel for the staff in emergency admissions on Saturday night - I think John was the patient of choice - wasn't drunk, can't talk, lots of interesting scars... I feel like telling those with 'self-inflicted' problems to grow up, my tolerance levels are pretty low at the moment, and the doctors and nurses have enough to :bomb: do , ah well, it wouldn't do for everybody to be the same...
sleep tight folks

Just read your postings!!
Mines a French 14!!! It's a P.E.G. that has no wings and is very small. I used to have a 16 gauge one but pulled it out by mistake!!

When I first changed ovr P.E.G, I was in absolute agony on the first feed for about two hours!!!

Can't say enough Jen,if John's having probs get in touch with Mac nurse, speak to his Doctor and hold your ground till you get sorted!!

I'm trying. John's in intensive care, the PEG wasn't in his stomach, but in his abdomen, he's had a laparotomy and is having lots on anti-biotics. On my way to hospital now.

I know what he is going thru that is what happened to me the second time I had Cancer, they put in a feeding tube same thing, I also ended up in the hospital..Very painful,,,My heart goes out to you both, God Bless Always Vicki Lynn..

Hi Jenbee

Hope John is getting better. Our thoughts and prayers are with you. I have put together some info on PEGs that may be helpful.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

wha-hey, he's out!! got home about 4 this afternoon, with John walking ward to car, he's been too fragile/weak before. Despite hospital staff trying their best to create a restful, healing environment, there's no place like home.

We'll have to feed through an NG tube for 4-6 months until the stomach recovers enough to install a new PEG. Interesting head gear, and we thought there was a few askance looks before - try walking around with what looks like a piece of spagetti out your nose and wrapped round your ear.

We tried a bolus feed through the NG tube, but the stomach (?) fought back, maybe try again with a smaller volume tomorrow, will use the pump overnight at 125ml/hour.


He'd just accepted life with a PEG, now life with a PEG is something to aspire to...

Hi Jenbee
Glad your beloved is back home in your loving hands.

If it is any use knowing I did not bolus feed for about 2 weeks with the naso gastric tube.I just used the straightforward feed for two weeks. I had a week NG feeding in hospital and it was a week before the nurse came out to see me and told me about bolusing. A small amount of one syringe of fresh carrot juice or fine soup was usually all I added.

I was also given flesh toned nose plasters that seemed to match my exact skin tone and managed to very successfully disguise the tube taping the tube with the same cut up nose plasters in several places at the side face and shortened off the tap to the back neck when not in use.

I assume you have been given a tap with it which makes it a bit easier to shorten the tube, close it all off and disguise it.

There is a portable version of the machine available in a back pack and that is handier for moving around in the kitchen etc., but I think too heavy to take out shopping. Ok for going to someone's house though as feeding all day is long job. I was not given the portable version for a month though.

With the flesh tone plaster you can easily walk past most people without them noticing anything. It's only when you need serving that people really look at you.

For some reason when I wore mine out I got a real sympathy vote from people who had not seen me since before the weight loss. One bonus with an NG tube in place is that if you ask for a chair to sit down they get you one pronto from somewhere.