Hi all
Five year on from First Neck dissection I am going to be fitted with a PEG due to swallowing difficulties (my worst nightmare)
I suppose it had to happen sometime but it was still a shock.
I would appreciate it if someone who is using a PEG could give me some
regards
Michael
Hi Michael. Can't advise on a PEG but just wanted to say hello again.
Seeker posts about his quite often . I think if it's going to stay for a while his advice seems sound. Try to get a Monarch one. chris2012 has a permanent one and I'm sure he will be along to give advice.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Michael,
I had one during treatment. At the time I didn't know which type, but I think it may have been the Monarch type that seeker recommends. You do get used to it. It took me a while to get my head around it, but they are life saving. Once its fitted follow the care instructions. I cleaned, flushed and inserted / rotated daily. Don't panic if it oozes a little to start, keep the area clean and get hold of someone if you need. I had pain for a week or so when fitted, but not surprising really as you adjust. There are belts / loops to help you tuck it away, but again that depends on the type you have. I ended up just tucking the tube into my waistband, probably not a problem if it is a button type.
Take care, Gill
Michael I've had two fitted, the first for about three months and the second for six, and they really do become second nature after a while. As has been said, keep on top of pain meds in the early days and follow the cleaning routine. Some models need to be rotated as well, as suggested, mine didn't.
Both of mine were water balloon models and I had no issues at all with them (actually not 100% true, one broke on Christmas Day but that was an external thing rather than any failure of the fitting), you need to empty and refill the balloons weekly but it's not difficult.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Good evening Micheal, sorry to hear about you having to have a PEG fitted, i have had one since 2009. Once they are fitted and after a few days of settling in you should have no problem with it. I have had a permanent which i was put under for as its fitted from the inside it has a disc that rests against the stomach lining stopping it from coming out, a balloon-type which is where the tube is inserted from the outside and filled with water to inflate the balloon inside stopping it from pulling out. This is the most popular type as they are quick to change when needed. The Monarch is very hard to get because only certain areas are trained to fit them, on this its inserted from the outside and you pull a thin chord that operates a small toggle inside the stomach stopping it from coming out. I strong think you will be fitted with the ballon type because of their popularity. Mine is now an everyday part of my life and i know no difference nowadays, they are very easy to use and convenient to use, i also believe some you can up plug the feeding tube on the outside of the stomach so it does not get in the way so less visible if you are going shirtless during the summer. Please feel free to re-post for further advice, best wishes ,take care.
Chris
Thanks Chris, what is your feeding regime like?
How many hours of feed time is required?
all the best
Michael
Stay strong
I have a RIG fitted with a water ballon as an anchor to the upper part of my stomach. i find it easy to care for. downside was I had my stomach stictched to my abdomen for 2 weeks which meant I couldn't exercise for 2 weeks. I'm informed though that these last around 6 months so are a temporary thing.
Lee
just out of interest....why? I have one of those fitted.
A monarch gastrostomy tube is held in place by a disc rather than a balloon. Some people are intolerant of balloon tubes so these can be better. They need changing less often so are maybe a better choice for permanent tubes?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
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