Rigg tube discomfort and radiotherapy begins

Unfortunately feeding tubes can cause discomfort and distress. I had a PEG tube in place for around 6 months, bloating, acid reflux, the odd infection at the insertion site and nausea were all par for the course. Talk to your oncology team, they will be well aware of these issues and will offer assistance.

Thanks Micky55. As long as it’s ‘normal’ that’s reassuring. Also, is it normal to get a backflow of stomach fluids into the tube? We have noticed this happening too. Flushing it with water clears it but sometimes there are bits in the end of the tube that need to be washed out.

Yes, I often had to do an extra flush to clear the tube, just another day at the office for us. It was a huge relief when I said goodbye to my PEG tube, but it was a life saver at the time.

Thank you!

Hi, Doramouse, The RIG can take some time to settle, just make sure the entry site is clean, and he flushes it out regularly. I think it's best to have the RIG if it is offered, during and after treatment eating can become difficult, and having the RIG will take away the worry of not eating. There are lots of people on here who will say their feeding tube was their lifesaver, I know mine was for me. Good luck for Monday, take it all one day at a time, always keep his team updated on how things are going for him. You can always ask any questions you have on here; someone will always answer if they can, don' feel alone we're all here to help.

Ray. 

Thank you Ray, that is a huge support. We are doing all we can by the book, but I think in the back of your mind you’re worried you’re not doing it right, or missing something. I clean and flush it daily for him. There’s just so much information to remember. Thanks for your reply 

paula

Our taste and appetite does disappear, usually a couple of weeks after starting radiotherapy, but it does eventually return, this also causes some distress...I'm 2 years out from finishing CRT my appetite and taste started improving 4-6 months after treatment finished, now I can eat most things, I don't touch alcohol, stick to alcohol free ales, many on here do enjoy a little tipple. 

Yes, I’m trying to ready myself for his loss of appetite which will be very strange as he loves his food. We’re you able to keep yourself eating for long after this happens?

No, after week 2 things became pretty tough, relied on Ensure 2cal through my PEG tube to help me survive, but it does not last forever, some fare better than others.

It can be distressing for carers to watch, but it will pass and eating will become a pleasure again.

Thanks. I think that’s what scares me. Feeling helpless when he can’t eat.