Feeding Tube problems

Hi Katgi welcome to our community. I was never fitted with a PEG but wanted to say hello anyway. Our other community champ chris2012 has been living with a PEG for some years and I’m sure he’ll be along with some advice soon. I know there are different types so maybe that’s the way to go? Persuade your consultant to try something else. 
I see you have truly been in the wars. I hope you can find a way out 

Good luck

xx

Hi,Katgi, I didn't have a PEG I had a RIG which is a similar thing, I did get  soreness around it, my wife  bathed it with warm water then put Germolene on it. This is what the district nurse told us to do, it worked very well.

Regards Ray.

I could have written this, I had mine fitted in July too and it always gets really mucky round it, I’ve had antibiotics twice as they said it was infected, but it’s always been quite weepy. Just this week it’s gone a bit red around aswell so I wonder if it’s infected again but I just spoke to the hospital on Monday about having it taken out anyway so I’m awaiting an appointment for that, be glad to see the back of it now.

Good evening Katgi, yes the PEG is a blessing and certainly has been a lifeline to me and have had one since 2009. My first one was one that had a disc on the end of the tube which nestled against the inside of my stomach to stop it from coming out, i never had any leaking and had it changed every 18 months as the start to break down. The last 4 years i have had the balloon-type fitted where the tube is inserted from outside and pushed in a certain distance and then 4ml of water is injected through the tube to inflate the balloon, the balloon then stops the tube from falling out although the water has to be changed every 4 weeks and reinflated. These balloon ones are nowhere as good as the disc ones as they do leak, i have brought it up many times with my dietitian and Abbott nurse because i feel i need a larger diameter tube , but to do that they have to make the hole bigger in my stomach lining, once the Covid virus has gone i will look into it.or even as for the original type to be put back. The balloon types last about 6 months and can be changed by a nurse at home so this is why they use them nowadays. 

I never go overboard in cleaning it as i find it makes the area very tender at times, i just wipe it with a baby wipe, and that's it , if it becomes sore or itchy i normally put hydrocortisone cream around it as i have found it helps quite a bit. If it becomes really sore and tender it's a sure sign it needs to be replaced as they start to break down causing an infection, so the six months is just a guide. I normally let a gentle shower clean around my site without to much prodding and probing. I do believe there is a new type out where it pushed into the stomach and two arms pull out ,again stopping it from falling out. 

    If it is giving serious grief then ask the nurse to replace it with a new one and maybe wait until this covid has gone then ask for the more permanent type.

   Sorry about the length of the reply as i do get carried away sometimes Wishing you all the best,take care.

                                                                                                Chris x

Thank you so much, I also have the balloon type and have already had it changed twice and about to have it changed again because I now have thrush around it. I am hoping that new tube doesn't bring a new infection like it did last time!I have now had at least 4 courses of antibiotics, I say at least because I am loosing track!

Thank you, and congratulations on being able to have it removed

Not a lengthy reply at all Chris.  Very informative as always.

Linda x

Who is it who posts now and again describing the best PEG tube to have? 

Linda has signposted me to a forum member  who has posted that the best gastric tube is THIS ONE

It looks like the "new type" that Chris describes.

Worth running that past your consultant? 

Yes I have posted about it. If you are in London or can come here, the Royal London will provide and fit it for you, even though you are not a patient there. They will also use silver nitrate to stop the infection round it. I can provide the phone number for the nurse there.