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

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.

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!

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 ️️

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

Thanks Josie xx

I had a RIG fitted in 2015 as part of my treatment for tonsil cancer. I can honestly say that the pain afterwards was the worst I experienced. I was on a Ward overnight & repeatedly asked for something for the pain. It was only the presence of the other sleeping patients that stopped me crying out. I was given nothing. My radiotherapy started that week & it was so difficult - excruciating to go from a sitting to a lying position to have my mask put on & vice versa. I am well now & most of my treatment was superb. Many things I’ve forgotten but not the pain I experienced with the RIG fitting & for a few weeks afterwards. 

I'd like to hope that the more people who flag this up, the more notice will be taken and understanding and pain relief will improve. Pleased to hear the rest of your treatment was good Mapattie xx

I had a Rig fitted on Tuesday and have had difficulty using my stomach muscles since. Can move around very slowly, but need assistance to move from a prone position. It's reassuring to hear its not just me, as the suggestion was I'd be fine after a couple of days.

The nurses on my ward were very supportive and helpful and I was given codeine to manage my pain when discharged from hospital. 

Some people are lucky with the Rigs and they don’t experience pain after a few days. I was like you so I kept takung regular cocodamol as well as  laxative. I can’t stress how much I needed those. Take senna and lactulose if you have them. You don’t want to put additional strain on those muscles going to the loo. Trust me! 

i live alone so didn’t have any help getting up off the sofa or out of bed, however, I did grab the mattress or back or the sofa to prevent any additional strain on the muscles to get up. 

I held the rig down with tape so it was immobile when moving and I wore loose clothes. It should settle but I/we on here, really feel your pain

best wishes 

try make friends with it, it’ll be useful to you at some stage. 

I named mine Dianna 

take care 

Carrie 

Thanks Carrie

Dianna Rig .... Love it

I had the tight button cut off after 5 days which improved everything beyond belief. Stopped all pain relief the following day and another 3 days later I'm feeling much better. A second button dropped off today so just one holding on with my PEG now. Radiotherapy starts on Monday 5 days a week for 6 weeks. 

Great to have the support from everyone xx