Hello there,
I am having a PEG fitted on the 25th Feb and I am soooo nervous about it!
I'm interested in hearing peoples stories about having it put in, I've read information about it all but I think I'd feel better hearing peoples personal stories.
I'm also worried about not being able to swallow when I'm having radiotherapy (I have cancer of the larynx) - I just can't imagine not swallowing. But I suppose I'll get used to it?
Hayley

Hi Hayley,
My Dad had his PEG fitted about 2 weeks ago. He was already in hospital. He said the nurse asked him several questions first, like did he have dentures, did he want something to calm him down (sedative) etc. He then went in to the doctor who told him everyone gets a sedative. I do not know the exact procedure as we have not talked about it fully yet so many things have been going on. However i saw him about an hour after it was fitted and he said it was a little painful but he had painkillers. That night they ran water through it and started on the feed the following day. He stopped having the painkillers for that after a few days and turns it and pushes it in and out slightly as instructed by the nurse. We have got used to his pump and are doing ok with the feed. His op was front of mouth but he's not been able to swallow without aspirating since before the op and starts radiotherapy soon. I would imagine if you can swallow before the radiotherapy then you will get it back as they say there is no reason Dad won't eventually and so many people here seem to eventually.
Good luck
Angela

Hi Hayley, I'm new to the site, this is my first post.

I had a PEG tube fitted in March last year, and used it up till October.

I was already in hospital having had surgery to my neck and tongue. The PEG was fitted under local anaesthetic, but I really didn't feel anything. Seem to remember it was a little painful afterwards (as Angela said), but nothing major.

I got used to it fairly quickly - when I got home I fed myself overnight, as I found it too limiting being hooked up during the day.

You get into a routine fairly quickly of using it, after a couple of weeks it becomes second nature - so I found anyway.

When I had the PEG removed I was amazed how quickly it healed up - wasn't painful at all, apart from a the few seconds it took to remove. It does look a little like a second belly-button at the moment! I'm not sure if that changes over time.

I had a lot of surgery to my tongue, and I did lose the ability to swallow during radiotherapy. It came back a few weeks after the treatment finished though. I was quite slow to get back to swallowing and eating, so chances are you'll have less problems than I did.

Hope this answers some of your questions, good luck with your treatment!

John

Good luck, Hayley.

Best wishes
Vinod

Hi! Hayley,
I had my first PEG fitted on the 20th of August 2007 and it was fitted on the day of my 14th RT treatment ( a little late ) I had started to have problems with my feeding and the PEG could not have come at a better time as I was losing weight rapidly and needed the extra calories and the 2CalNH feed was full of the necesary vitamins and calories. I staid on the PEG feeding for 4 months and had the PEG removed on the 24th of December 2007, however I did have a new one fitted on the 15th of October 2007 as the original one was blocked and they had to remove it and replace it with a new one ( it had turned side on in the stomach wall and nothing would go down ), as for pain with it being put in and removed there was hardly any and when the first one was removed it was over so quickly that I missed the actual removal, but the second time I was ready for it and when the Doc pulled it out I felt a little pain and within 2 days the wound had closed up and stopped bleeding. It looks like a bullet hole, gives me a yarn to tell the Grand Kids.
So as I said there is nothing to worry about and I am sure it will go fine.
Hang in there Hayley and keep up with the contact with the forum, we are ALL friends here.

Stay Strong

Love TREV

Hi Hayley,
My peg was inserted in 2000 and have just celebrated its eight birthday. Its takes a bit getting used to but once you do - its really a life saver. As you are given local anesthesia (which I was not!) to ease the pain as they insert it its hell if the ansethesia is not used.During the last eight years - I have had to change my peg only three times. Once because it had been used so much that it looked like nothing like the original tube with plaster and bandages with gauze stuck all over. When my doctor saw the tube he was mad and hence I had to go for a change, The new one however, did not pian on insertion and it is not done thorugh the mouth but directly into the "stoma" with the help of a guiding wire. The other time I had to change it was when I was at a meeting and stupid thing popped out and I never realised it till I began feeling by T.shirt getting drenched. I was wearing a jacket. When I put my arms in to see if the tube has opened out - it was a shock to see it was out of the socket. I had no option but to call my wife and order a new tube and as it would take about six hours to get it - I stayed on for the meeting (not trying to be brave but there was nothing else I could have done) holding the wound tightly with a towel. The moment I got a call that the tube was there - it just took a few minutes to insert it and since then no problems till once again the state of the tube became so bad that the doctors would have a great laugh whenever the saw it.
Now I have a special peg tube - one that fits directly into the stomach and only when I have my meals or am thristy - I have to attach the upper tube - other wise one cannot even see the peg as its flat against the stomach. Its something new and as usual am the official tester of all new remedies. I think I am going to kill my self one of these days!!!

However, Hayley - you can take heart that more then often (mine is a rare case as I am a rare guy!!) its only put on temperorily till you can start feeding orally again. So dont worry about it as its perfectly fine to keep your strength up and build up until such time you start eating orally again.
Lots of love,
Ananth