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?

Looby27
Posted by

Thanks Josie xx

Mapattie
Posted by

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. 

Looby27
Posted by

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

Falcon74
Posted by

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. 

missFitz
Posted by

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 

Looby27
Posted by

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

Looby27
Posted by

Pleased you had pain relief. Hope you feel better soon. I found it worse if I was standing or walking. Rest really helped. All the best. 

chris2012
Posted by

Yes Carrie i was lucky with my P.E.G and have never had any trouble what so ever with it , it was i bit uncomfortable waiting for it to settle down yet i had no pain and still dont after nine years . I sometimes find people over cleaning the area around the P.E.G ,making it sore . I dont clean around my site unless is leaked a bit  . Agreed on the laxative front as it can be very uncomfortable if not used as i have found out ! Take care .

                                                                      Chris .x

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