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

Good news Tricia, onwards and upwards!

Thanks for sharing this Tricia , its good to know that there are drugs out there that can help. All the best to you and your husband, take care.

                                                                 Chris x

Josie I was so relieved on seeing your post. I had my peg fitted last Wednesday. I was told I might have mild discomfort after it was done. 

Well if that was a joke it wasn't funny. I had terrible muscle spasms and could hardly breathe as they came thick and fast.Now I consider my pain threshold pretty high.But I was writhing in pain for 24 hours . The nurse finally realised and topped up my paracetamol with codeine. It was such a relief to be given some respite from the pain.

When I told the dr, her reply was"well you have to expect some pain" I could see she wasn't a bit sympathetic and I felt like nobody believed me. That really upset me and I cried, then I became angry. The nurses were lovely but that doctor was ignorant. So thankyou for telling your story, I could so relate to it. I'm at home now and I havnt had any severe episodes, thank god. But I won't forget that pain for a long time.

PEG/RIG tube pain is such a difficult one and seems to vary so much from patient to patient; think this is also somewhat down to the different "models" available. For me (putting aside the discomfort of having it fitted) my first night pain, as an in-patient, was minimal. However it turned out that I was a bit of a "guinea pig" because lots of people came to have a look at it in the short time I was there because it was a new type and I was only the second person to have one fitted; they said that many people (using the "old" type) needed morphine and a longer stay. When I came home I got complacent and didn't take suggested pain killers because it wasn't hurting and had a terrible time in the small hours in absolute agony.

Then when I had district nurses out to check and clean/do the balloon once a week they refused to believe what I'd been told, that the type I had didn't require "turning"; it took a long time for them to accept the fact. More recently I've found out that my hospital no longer use the model I had because although it was good, it was also very expensive so the powers that be put a stop to it.

Hello Marieandian , sorry that you encountered a lot of pain , I had the old type peg fitted ( not balloon ) when I had my first operation and did not have any pain , I think the difference between a peg and rig is the way they are fitted . I would strongly advise you to report this Dr to your consultant as the Dr should not treat you like this . I once had a stubborn drain tube in my neck and the nurse could not get it out so this Dr gave it a hard yank and it came out , I cried as I could not swear due to voicebox removal , the nurse comforted me and could see I was upset . The next day I saw my consultant on his daily visit so I reported this lady Dr who was severely reprimanded , Im afraid you do get these sort of Drs and sometimes nurses . I hope you are feeling better now . Take care .

                                                                                          Chris x

Hi Marieandian,

It is something far beyond mild discomfort, and I wish that one or two of these dismissive doctors could actually experience it for themselves ratherthan writing us off as histrionic.  I wish I'd pursued it further now, but you could indeed make a complaint about this doctor.  As far as I know, those of us who experience such a lot of pain are quite rare beings, and so she may not have come into contact with this consequence before, or not appreciated what she was seeing. 

That is no excuse for her trivialising your experience though - in another context this is now known as gaslighting, and is illegal!  She needs to understand that she has to listen to her patients, trust their descriptions and believe their words, because they are the only ones who actually know what they are experiencing.  It is not her job to cram everybody's experience into neat little boxes, and tell the patients that they are mistaken, lying, making it up or being over dramatic if they react differently to the way that she was taught that they might.

After that, any pain that the treatment brought was small in comparison, though longer lasting, so different.  I had a tonsillectomy before radiotherapy started, and afterwards I spoke with the surgeon who carried it out.  He was very miffed when I told him that the tonsillectomy was more painful than the radiotherapy, but on a straight scale of absolute pain, it really was - it was just over faster, thank goodness!

I'm glad that your pain has eased now, and really sorry that you experienced it at all.  I hope that the rest of the treatment goes more smoothly, and my suggestion is to keep ahead of the game and ask on here at every stage so you know the real truth about what to expect.

Best wishes,

Josie

Ok, I now have questions as I didn't get pain from my PEG and the first time they tried I was out with sedation and came round in a different room, the same with removal I was out of it, from reading on here it would appear that others are not sedated when they have them fitted and that there are different types of tubes that are fitted, an explanation would be useful as reading some of the comments on this thread I would be very worried about having one fitted and that to my mind is a bad thing as they can be a life saver. Just an aside my first attempt they couldn't get the thing in my mouth with a hole in the middle as I couldn't open my mouth enough to get it in because of my opturator (plate thing in front of my mouth) so they did it when I had the first opturator removed and a removable one put in (the first was fixed) and I was well out of it, this was about 3 weeks after OP and 6-8 weeks before radio.

Second is the pain with radio, is this to do with where the operation is as it got very uncomfortable for me but not painful, my OP was top of mouth and that wasn't radiated as they were happy with the margins and the radio was from the chin down.

Hi Ron,

As far as I can tell, the main difference is in how the tubes are inserted.  PEG tubes are put in place using a camera down a throat tube, while RIG tubes use X-rays to locate the right place, and a naso-gastric tube to put in barium or air, depending on the procedure.  From what I have read, both are usually done with the patient sedated but not out cold. 

Personally, I was completely conscious and could feel far too much, to the extent that when the surgeon made the incision I whipped my knees up to my chest, knocking all his tools on the floor, and refused to let him do anything else to me until I had been given more local anaesthetic.  I didn't realise until some weeks later that I am completely immune to opiate painkillers, so effectively I had been through the procedure with nothing more than a few jabs of local and a woozy head from the muscle relaxant element.

I know, from reading on here and elsewhere, that most people do indeed only experience a relatively small amount of discomfort or pain after having one of these tubes inserted.  However, there seem to be a small proportion who have much more pain, and because the doctors are not expecting it they dismiss it - if they haven't been taught that it can happen, in their world therefore it doesn't exist, no matter how much evidence they are shown to the contrary.

I was made to feel like a freak, a weakling, a cry-baby, an attention-seeker by the hospital staff when I was trying to deal with it.  If you read back through my posts on this thread, you will see that I am perfectly able to handle pain, having had two babies at home with no pain relief, but this was extreme.  All I wanted at the time was for someone, anyone, to validate my experience.  I wanted to know that I wasn't making it up, that this was more pain that I should have been experiencing, that the fact that I couldn't cope with it was not some defect on my part but because it was off the scale of what they were expecting to see.  I wanted to be believed, and I wanted to know that I was not alone. 

I am sorry if anyone is scared by this post; that was not my intention.  My intention is to inform, to reassure, to show that such an extreme reaction is unlikely but possible, and then if it does happen it is not so frightening and isolating an experience.  Nothing about this treatment is pleasant, and some bits can be downright awful.  Knowing that fact would have been very helpful for me, and would have meant that I could have spent less time trying to cope, firefighting the unexpected symptoms, worrying about whether it was supposed to feel like that, and more time making my life more comfortable in whatever way I could.

Best wishes,

Josie

My husband is having a RIG fitted tomorrow on day 1 of radiotherapy and after reading some of the experiences we are both dreading it - he took a lot of persuading to have it done and is now wishing he hadn't.

I hope he doesn't get the pain but it is a must as at the end of radio he could well be hard pushed to do anything let alone eat. If the RIG can be a problem I don't see why the don't just fit PEGs though the daily turning can be a bit of a nuisance (was going to write pain then thought better of it) as I think someone said you don't have to turn them.