Head & 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?

Plymouth
Posted by

Hi - I had a RIG tube put in on Friday and the cramping post operation was pretty bad for about 6 hours. Had to stay in hospital until sat eve. Tried to go to work today on just paracetamol/ ibuprofen every 4 hours but still not able to stand completely upright, pain when sitting down/ standing up and very sore if i haven't eaten for a while - stomach cramps and it sucks the rig tube back in a bit - probably only a few mm, then it pops back out. My upper abdomen looks distended, as if i were pregnant yet no redness around wound site, no temperature rise or signs of infection or RIG leakage. It is also flushing normally. Is this normal? All the websites i've looked at suggest minimal pain for just a few hours. no one mentions any abdominal swelling. 

Has anyone else experienced pain from a RIG and if so how long does it last? I wish i didn't have it done now, i felt obliged to do it as i didn't want to be seen a 'non-compliant' as the dietitian referred to people who didn't consent. They made it seem like such a walk in the park!

2 weeks today until chemoradiotherapy starts :-( 

JosieFromGlastonbury

Hi Plymouth,

I had a huge amount of pain after my RIG tube was inserted.  The cramping was so bad that it was like contractions during childbirth, and when it hit I was totally paralysed with pain - couldn't breathe, speak or move.  I had both my children at home with no pain relief, so I know what I'm talking about here!  I have a pretty high pain tolerance, but this was something else.

The nurses and doctor in there didn't believe me, and either ignored my requests for pain relief entirely or just trivialised the whole thing, making like I was making a big fuss over nothing.  Every time I changed position it set them off again for two days, and I couldn't even flush the toilet without starting another bout of muscle spasms.  I asked the nurses in the hospital for assistance getting in and out of bed, to be told that they weren't allowed to even lend a supporting arm, and I had to do it all myself despite the fact that every movement involved the very muscles that were causing the pain.

It took about three weeks for me to be able to move fliuidly again, and then the little balloon that holds the thing in place inside burst and I had to have a new tube inserted...

Anyway, all that was pretty rough, but I have to say I REALLY appreciated the fact that I had the tube there when I was going through my treatment, and despite my assurances to everyone that I wasn't going to use it, it was the only thing that kept me alive.

As for the swelling, I did have that a bit, had forgotten all about it till you mentioned it in your post, but it did calm down after a few days.  It is something very new for your body to get used to, so from here on in, expect the unexpected!

Good luck with your recovery from the op, and with your treatment.  Keep posting,

Best wishes,

Josie

Margaret853
Posted by

Hi Plymouth

I had a PEG which I think is similar to the RIG.  I didn't experience swelling myself but I remember a couple of other patients in the ward complaining of bloating which they were told was something to do with air being pumped into the stomach during the insertion procedure. 

I did have pains similar to the ones you described and they came and went for a couple of weeks.  Don't know if you have them with a RIG but my PEG came with two temporary stitches which were fixed down with what looked like shirt buttons.  Once the stitches came out after a fortnight the pain disappeared immediately and from then on I was never aware the tube was in place.  

I was never keen on the idea of a feeding tube but I was glad in the end that I had one.  I went through a few weeks when eating and drinking were very difficult and I think the feeding tube was a big factor in my good recovery.

Best wishes for your chemoradiotherapy and let us all know how you are getting on.  xx

"Life might not be the party we were expecting but while we are here we should dance."

TonyP61
Posted by

Hi, all this is very worrying

I am having one fitted in the next couple of weeks, my chemo starts Friday

Where is everyone going to for treatment, I'm in Brighton?

Tony

Plymouth
Posted by

Thanks everyone, glad to know it's not just me. I spoke to the nutrition nurse today who said my symptoms are normal and I just need to keep taking the pain killers. I have two buttons which feel very tight, hopefully when they fall off it will feel better. 

MikeO
Posted by

Being lazy here and doing a copy/paste job from my blog after I went home from RIG fitting...

"Home....hmmm....over confidence or nonchalance maybe, went to bed Friday night without bothering to take any pain killers because it was a breeze, right? Wrong in spades! Woke up at five in indescribable pain, I say indescribable but I did in fact describe it in many and varied four letter words (few of which were "ouch"). I woke Deb, took two co-codomol and cried on her shoulder on the settee for about half an hour before it eased off. We had a deep conversation during this time which consisted of me saying "Sorry" and her saying "Stop apologising!"

Anyway, the lesson learned from that is always to play on the safe side with drugs....if you're prescribed them, take the damn things."

It'll get easier Plymouth, and it'll get harder too; good luck.

What is a Community Champion?

Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.

http://mike-oldfield.blogspot.co.uk/

chris2012
Posted by

Hello Plymouth, i think i must have been one of the lucky ones as i had a p.e.g fitted during my first operation and can honestly say i did not have any problems with pain etc. The principle of the peg and rig are the same its they way they are fitted that may cause the uncomfortable side affects . All i can say is that i was grateful that i had it fitted from day one as it came in handy during my recovery from the operation ,radio and chemotherapy. I would also ask for a stronger pain killer at this stage as being in pain always makes us fell 10 times worse . Im sure it will all settle down ,good luck with the treatment. Take care

                                               Chris x

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

Andrew999
Posted by

Hi Plymouth.

I have had 2 feeding tubes during my treatment.  Both are put in by same "team", both were extremely painful due to infection.  No one should be in pain!  Always have a reserve of Oramorph - absolutely insist on it!!!!!!

Mapattie
Posted by

Hello,

Good luck with everything. I finished my treatment in 2015. I agree with Josie. The pain after Rig insertion was unbelievable. I was having radiotherapy at the time and found getting into a lying position for the mask to be put on was so difficult. It lasted for a few weeks. I was given buscopan but it did nothing. Like everything else it does pass. I was so grateful later for the Rig so it was worth it but I would have been grateful for pain control at the time. 

In a week or two it won't hurt even when you laugh. 

Pattie

Andrew999
Posted by

Morphine (oramorph} worked for me.  No you won't get addicted - using it for pain as per instructions. 

Plymouth
Posted by

Thank you everyone for your advice. I eventually went back to the ward as kept having leaking and pain. Apparently I have an infection- so given 2 weeks of antibiotics. Also one of the buttons was too tight as spotted by the nurse so she cut it off which felt better. It is still uncomfortable but I can drive now and sleeping better so slight improvement! 


Allicat
Posted by

Hi Plymouth, I'm glad you have found some degree of relief. I had a PEG fitted when having my tonsils removed in February and had more problems recovering from the tube than the tonsils! 

I did feel bloated but didn't have the other problems you describe. After a few days of appalling stomach cramps I ended up in A and E only to discover I was severely constipated, muchbto the amusement of the doctor! Apparently the bowels are well known for going on strike if they detect any kind of trauma. Anyway, easily fixed, but do look out for it if you are getting cramps.

Other than that, I had a lot of soreness around the site where the tube goes in and had to see the nurses every few days to have it dressed etc. I cursed it at the time, but I would have starved to death without it - one week after the end of treatment I now can't take anything orally, so it is a lifesaver! 


Good luck with your treatment - we'll be here for you as you go through it.

Light of the world
Posted by

Hi there Allicat- my husband ended up in a&e after having a peg in- he had really bad abdominal pain-so much so people were letting him go first in the queue when we arrived. The doctor was brilliant-checked him very thoroughly in view of his history I think. The cause was fizzy water- a relief but a bit embarrassing!

Looby27
Posted by

Hi Josie,

Made me cry reading your post. Worse than childbirth and the feeling that no-one believed that you were in that much pain. That's exactly how I'm feeling. I had my PEG fitted 4 days ago and yes, the buttons are tight, but the muscle pain is so much worse.

If my partner wasn't here all the time I'd not be able to sit or stand as I can't use my tummy muscles. He's a star, apart from the fact that he's a funny guy and keeps coming out with one liners that make me laugh....not funny ATM! Ouch! 

I had to go straight back into hospital from my car journey home because I was in so much pain. I don't think I should have been discharged but they didn't have pain relief on the unit I had my op at. Was admitted and stayed 24 hours on oramorph. 

Been home 2 days on paracetamol and ibuprofen and pain is just about manageable. Quite a bit of leakage so keeping an eye on that. And taking senokot for constipation. Large loose clothing a must. Can't wait for buttons to drop off. Radiotherapy starts in 10 days. 

Anyway, thanks for sharing. I don't feel so unusual now, and not a fraud

JosieFromGlastonbury

You are totally not a fraud.  I think that it is unusual for the body to react this way, but thank goodness for this forum because I have seen that it happens to more people than I realised at the time.  I actually wrote and complained to the hospital about this when I was over the first shock of it, and I got a very dismissive letter back from the consultant in charge of the op (not my cancer consultant), reminding me that I had been warned to expect a little pain.

What I had been warned about was that there might be some trapped wind and that might cause some discomfort.  I had not been warned that my muscles around the op site would go into such severe spasms that I couldn't breathe or move - this was something else completely.

I also complained about the lack of pain relief, and the unhelpful attitude of the ward staff, abut as I never went back to that ward I have no idea if anything has changed.  I have a feeling that it was completely ignored.

I have a suspicion that this level of reaction is rare enough that most consultants don't see it during their stint on the wards, and therefore when they do they just don't realise what they are seeing.  Gathering information from a wider group of people, as we can do on the Macmillan forum, makes me realise that there is something bigger here that needs addressing.  I just don't know how.

Anyway, I am very grateful for you that you have a supportive husband, (even if his sense of humour is totally unhelpful right now ), and if you want to talk more about coping methods then I will dig about in the recesses of my memories and see what I can come up with.

Best wishes, and good luck,

Josie