Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Pain and stomach swelling after RIG tube - anyone else experienced this?

Marieandian123
Posted by

Some very good advice mike . I'm sorry you went through the pain I described. But I also don't want my experience to make anyone afraid of the procedure. I agree with you in that you advise anyone to make sure you get adequate pain relief. I found paracetamol on its own didn't work but combined with codeine worked really well. Thankyou for replying ..

Marieandian123
Posted by

Thankyou Chris for replying. I'm sorry you had to experience that ignorant doctor. Whilst most of the doctors and nurses I have encountered have been very kind, this particular one made me feel like a fraud. Which is why I suffered in silence for a long time. We trust our doctors but they're not always right and sometimes we have to speak up and make them aware that we know our own body's and they should listen to us. A lesson I have learned. I hope you're keeping well. Take care xx

Marieandian123
Posted by

Please don't be afraid madaboutmutts, although my experience was not the best.I would go through it again. Not everyone has the same reaction. Im sorry for all you've been through I'm sure it has been really hard for both of you.My advise would be make sure you get adequate pain relief. Do not be afraid of asking for it if you need it. Take care xx

chris2012
Posted by

Hi Ron , I have had a peg for 10 years now and hand on heart I have not suffered any severe pain , I was asleep when they fitted first time in 1978 and again a year later when the cancer returned . These tubes used to last two years and when they changed I was always asleep , recently I had the old style one replaced with a balloon one as they reckon its cheaper to change . Personally I prefer the older ones as I  knew that it would last and is less bulky plus you could syringe the food supplements through quicker as the inner diameter is bigger due to the fact there is no tube to inflate and deflate the balloon , lastly they had a clamp on them so the tube could be clamped shut when not in use making it less likely to leak . 

                                                                                       Chris

Its sometimes not easy but its worth it !                Click here to find out more

Ron51
Posted by

Chris I had the non balloon one and it wasn't a problem apart from if I did it to tight and as you said it had a clamp and I didn't have any problems with leaks, the only other thing was something started turning out of it and I was given some impregnated tape to put around it and it went back, Strange that some say they were awake. Just out of interest did/do all yours go in the same hole?.

chris2012
Posted by

Hi Ron , I had my fist one fitted but it was removed as I was able to eat well enough but I had to have another one fitted about a year later , I believe they used the same place as it was still visible .

                                                                              Chris 

Its sometimes not easy but its worth it !                Click here to find out more

Alichapp
Posted by

My husband had a PEG for his tongue cancer treatment (RT + adjuvant chemo) and it was a very easy process, and a real lifesaver. He was sedated but not 'out', and experienced very little pain indeed. 4 years on the scar is tiny. Please don't worry about it - most people have very little trouble and get a lot of benefit, not least from being able to take medication via the PEG or RIG, which can get difficult orally.

NB this is not to negate the experience of those who have had an awful time - pain is a strange and unpredictable thing and only the person suffering it can say where it is on the scale. My husband actually found the tongue biopsy the most painful part of the whole treatment process. They took a huge lump, gave him no pain relief, and also did not give him any expectation that it might be painful. He even had to drive himself home, whilst virtually screaming in agony, because he had been led to believe it was an almost painless procedure. Maybe it is for most people! For all the other treatments he did get good, appropriate pain relief, so nothing came close to the pain of the biopsy.

chris2012
Posted by

That's interesting what you have said about pain , I was never in bad pain during or after my operations and the first time I was prescribed strong painkillers (oxy-codone ) was what I had a biopsy done on my lower gum around my teeth . As you say we all look and cope with  pain in different ways . Hope all is well, take care .

                                                                                                        Chris ,x

Its sometimes not easy but its worth it !                Click here to find out more

Looby27
Posted by

Hi madaboutmutts, I hope your husband is ok following his RIG being fitted. My thoughts and best wishes are with you both. The tube I had fitted was a MIC Gastrostomy Tube which, when fitted, has 3 stitched anchor points around it with buttons on the outside to hold it in place while everything settles down. I realised afterwards that it was these buttons that were giving me the awful pain. The stitches dissolve after a week to 10 days and the buttons pop off. Once this had happened all my pain stopped. I had to have codeine until then. It was awful, but I emphasise what everyone else has said, it was worth it. None of us want to be in the position of dealing with cancer, but we dig in and get on with it because we have no other choice. I finished radiotherapy to base of tongue at the end of November and unfortunately my PET scan in February wasn't clear, and the follow up PET wasn't either so my consultant is doing a biopsy tomorrow. He's not expecting to find anything as my recovery has been good so far, but I've kept my Tube in just in case - it's a lifeline I don't want to lose just yet. Good luck, Linda xx