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

Hi madaboutmutts,

Please see the last paragraph of my previous post.  The tube is a life saver, and having it fitted is a case of balancing a few days of discomfort and maybe pain against weeks or months of not being able to eat properly or get enough food and energy inside your body.

When people say to me that I must have been very brave going through the cancer treatment, I don't think that is true at all - I did it because I had to.  If bravery came into it anywhere it was in submitting myself to all the procedures even when I knew they would cause me pain, but doing it anyway.  I had to have four teeth taken out together under local anaesthetic, whereas usually it would have been done under general.  That was bravery for me!

It might help to keep the bigger picture in mind.  Like I said before, it might be painful, but that pain will go within a few days and now if it happens at least you will both be prepared for it, not completely blindsided by it as I was.  The certain benefits far outweigh the possible problems.

Best wishes,

Josie

Thankyou Josie. Its such a relief to know someone else understands. I realise now I should have asked for pain relief sooner. But after being told that I would only have mild pain and discomfort, I didn't want to look histrionic. I really appreciate your kind words.

I've commented on this several times before but I'll throw in my experience and thoughts again; first one being I would go through with it again despite the discomfort and pain involved.

First "difficulty" is the insertion for which, as it was explained to me, you can't be sedated from the start as you need to use your swallow mechanism to get the NG tube into place. I found this very difficult but not everyone does; once the NG is in place they sedated me immediately and I don't really remember the rest of it though I certainly felt no pain.

The pain post insertion again varies from person to person; mine was awful on the second night but I'd gone to bed without taking enough (if any, can't remember now) pain killers so my fault really.

So I think if you're having it done you basically need to be prepared for some possible short term discomfort (minute or two) during fitting and then make sure they give you some proper pain killers to take home with you, then take some before bed even if it isn't hurting.

This won't cover everyone obviously and somebody posted in the last day or two that the docs had "forgotten" the sedation, which is not good. Hopefully it's a rough guide though; and I agree with Josie, they can be a life-saver, I used mine exclusively for 3/4 months and don't know what I'd have done without it.

Thank you. We know its essential but I think he is dreading it more than the radiotherapy.  He has had a rough ride as had 5 teeth extracted pre radio and got a dry socket which has been very painful.  He also had a major rta in December when he had every bone in his face broken and 3 haemhorrhages in his brain.  He was in hospital for 7 weeks but made an amazing recovery until the cancer appeared in April ( I feel the trauma if the accident precipitated this).  A trailer shed its load and a breeze block came through our windscreen hitting him full in the face, so as you can see the last 7 months have been hard - the RIG just seems to be the last straw!

We are under Southampton which is a 100 mile round trip every day - but they saved his life before and we have a lot of faith in the hospital.  They dont use PEGs there for head and neck cancers apparently.  Anyway, onwards and upwards!

B

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 ..

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

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

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

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?.

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