Hi Danny
Thanks for the message I still use my peg too with the syringe feed like yourself. However I find it a little nauseous and am eager to revert to an oral intake as soon as poss. I know it provides all the goodness and nutrients I need but I just struggle with it. Obviously I will have to stick with it but patience is not one of my virtues! I will definately keep in touch and hope that one day as you suggest it might be me helping someone else this is a great place to meet fellow sufferers and their loved ones I only wish I had found it before my op.

Take care Danny

Peter

Peter - Welcome to the forum. Its good that you are fighting to continue swallowing. Keep it up. Watch your total caloric intake - don't get behind. Make sure you are getting 2500+ calories a day while recovering from tx. Get the closest dietician to help you plan a calorie schedule. Drink more water - or pour it in your tube. Your body needs it even when you aren't thirsty and it really helps recovery.

I fear that you will learn some patience with this disease. Recovery can be very, very slow. Mine took twice as long as I thought it ought. When the swelling has gone down, go get a swallowing study to make sure you aren't aspirating (really important).

Good to have another Brit in the forum. Keep us appraised of your successes and failures. We are with you. Be strong. Tom

Welcome, Peter!

When I was learning how to use my PEG ("Margaret" as my family and I affectionately refer to it), a nurse suggested that if I had nausea or other intestinal distress to try pouring in the liquid and let gravity take over without using the plunger. She said that sometimes the plunger caused more pressure and could instigate the discomfort, especially when pushed too fast (for those of us still working on the patience idea). I found that it takes a little longer to wait for it to go in so I dilute my six cans of Jevity per day with equal amounts of distilled water and it flows in faster and supplies the extra water I need anyway. It still only takes about 5-10 minutes for each feeding, including flushing.

Something to try?

All the best,
Ruth

peter, how are you this evening? I would follow ruth's advice and let gravity do the job instead of using the plunger, I found that I became quite nauseaus when I used the plunger, also remain sitting up for at least 20 minutes after feeding, I found that if I was to lay down right away I would often vomit. Now for a ray of hope my friend, today was my 100th day with my peg tube and thursday of this week I am getting it taken out, listen my friend I am only 7 1/2 weeks from ending radiation (33imrt) and chemo and 4 weeks removed from a radical neck dissection and eating almost normal, not quite as enjoyable and still have some issues with swallowing and taste and the usual saliva problems, however that being said I am trying different things daily, some things work some do not but there is enough to sustain me and keep my weight steady anything to get rid of the dreaded rubber hose affectionatly known as "peg". Hang in there my friend, you are making progress daily.
always lenny

Hi everyone,
special hello's to Tom and Ruth (new messages) I am overwhelmed by all your kind thoughts and encouragement I have my next appointment to check on things at the hospital today will let you know the outcome.
Twice now someone has used the term 'aspirate' it is not used in the UK but is it to take food into the lungs by accident?
Will update my situation asap

Take care everyone
Peter

You have the definition right on. This can happen even without your knowledge. For more than five years I have had chronic lung infections, the most recent one landing me in the hospital with full blown pneumonia. Turns out that without my knowing it, when I drink or eat anything very liquid, my throat does not close off completely and I aspirate some of this into my left lung. There is nothing they can do to stop this, as the physical structures in the back of my mouth are now significantly different from the radiation and surgeries. Dysphagia can be subtle as in my case, or overt as in actually aspirating solids as well with dangerous consequences.

Using gravity to feed through the PEG is definitely the way to go. I didn't discover what a difference that made until I was in the hospital after rad ended--wish I had known during as I was constantly nauseated! The only thing that bothers me about it is how many plastic plungers I have thrown out without even using them! Can they be recycled? I feel like I am HUGELY contributing to nonbiodegradable waste since I've been using my tube......

Hi everyone
Got the o.k from hospital everything so far seems normal but in the words of my surgeon 'I have a size 11 tongue inside a size 10 mouth' which they may have to correct if the swelling does not subside sufficiently. It was a great relief to be given the all clear but very scary sat in the waiting area to be told!!!
Actually found something which was not only tasty satisfying and easy to eat Broccoli cheese and cauliflower bake Yum!! I recommend you try if your at my level of recovery

Regards to you all

Peter

hi peter, iam also from u.k. [middlesbrouh] ive had double mastectomy ,and total laryngectomy in april 2005,you are in the right place here peter it is so informative ,and everyone is one big family ...we have all been along simaler roads and hopfully have helped each other along the way even if it only words of encouragement along the way. this forum has been a crutch for me ...god bless and remain pos;...maz