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

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

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

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

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. 

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.

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

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!!!!!!

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

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

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!