PEG concerns

Hi Guy, I had a RIG fitted, which is very similar to a PEG, not sure if the surgery to fit is the same. However, having it fitted was quite quick, and a couple of stitches are put in to hold it in place, while it heals. I had to stay in hospital overnight, the next day the nurses showed me how to flush it through with water, which you have to do every day and after every use. It was a bit painful for a few days, which is controlled with painkillers, during the next ten days the district nurse came to the house a couple of times to check it, the on the tenth day, she took the stitches out. I would advise anyone to have a RIG or a PEG, the few days of discomfort, are well worth having it, I was 100% reliant, on mine three weeks into my treatment. I hope this helps, if the fitting of a PEG is different from having a RIG fitted, I'm sure someone will say. 

Ray.

Hi Guy,

It isn't bad at all.Stayed overnight in Raigmore.Just feels like you've got a strained muscle when you try to sit up and lie down.One of the nurses will show you how to flush it.One of the nutricia team will come to your house and go through feeds etc with you.They are very good

Turi 

Hi Guy 

Had my PEG fitted is early April 2023....overnight stay in hospital for monitoring....some abdominal muscle pain at site for next 5 days.

PEG hygiene, daily rotation, weekly advancing and rotation are vital to avoid complications and site infections....I had a couple of antibiotic courses to clear up minor infections....keep a tub of Sudocrem handy

I made up a little PEG gizmo with cord and a small plastic alligator clip to keep PEG from dangling annoyingly....plastic below PEG 'Y' joint is a weak spot and can break/will break....I was sent 3 replacements...used 2....a fiddly wee repair....but very necessary.

PEG removed September 2023....straightforward....very little pain/discomfort...20 min procedure.

Take care 

Peter

Hi Guy

I had my PEG fitted on 4th January this year.  I started radiotherapy on 8th January.  We are all different but I personally did not have any problems with the fitting or recovery.  It is a simple procedure in the endoscopy suite and they sedate you.  I really did not know anything about it but I know I was not totally knocked out.  It took about 15 minutes to fit and around a further 30 minutes before I was fit to go home.  I had no stiches or anything.  I still have the tube in.

You will need someone to drive you home as you will be a little unsteady from the sedation.  I guess each hospital does it differently but I had a bag fitted to the end of the g-tube (that is the tube that comes out of your stomach, PEG is the name of the process that puts it in) to remove the air used to inflate my stomach.  That worked really well and I did not suffer bloating.

The following morning the community dietitians visited me at home to check it and teach me how to clean it.  It is around 14 days before you need to do something called "advance and rotate".  That process ensures that the bumper at the end of the g-tube that keeps it from coming out does not get stuck to the stomach wall.  It sounds unpleasant but generally you do it each day in the shower and it takes a painless 30 seconds.

From the day following insertion you have to run some water through the g-tube using a syringe each morning and evening to keep it clean.  That is good practice for when you will need to use it for real.

Later on you will get training on how to pump feed.  Again not a problem, it is just a long process over many hours.  However, it may become a lifesaver for you as treatment progresses.

Healing time for me was a matter of days.  Certainly by the time I started RT It was not causing me any issues.  I've had no pain from it at all.

You can eat anything you like orally with the g-tube in place.  If you feed through the g-tube then you will be given special foods designed to keep your weight stable (that is essential with the mask) and provide all the nutrition you need.

I use mine to supplement my water intake as I still find swallowing large amounts  of water difficult and tap water tastes like salt water to me as a side effect of RT.  Bypassing the taste buds helps!

I wear a close knit vest under my clothes and in bed at night to try and insulate my g-tube from getting pulled accidently.  I've not had any problems in that department.

I tried the waist belt they gave me to hold the tube in place under clothing, but I found the slit in the back to allow the tube to come through into a pouch got caught on the fixation plate (that is a little plate on the outside of your skin to hold the tube in place) and pulled it so I got some sticky catheter pads with Velcro tabs (from Amazon) which I put the end of the g-tube in to hold it in place and stop it flopping around.  Works for me.

A bit long but hopefully it gives you an idea of insertion and living with it.  Come back to me if you need anything more.

Good evening Guy, i have had a PEG since 2009, having a PEG fitted rather than a RIG is a bit more straightforward and does not require any stitches, it is only a 30-minute procedure and you should be allowed to go home the same day in most cases, it takes about 5 days to settle down but should not give you any problems, some consultants give an antibiotic just in case it becomes infected. You should be able to use it for food supplements (I have Ensures) , meds, and cold boiled water, please do not put any liquidized food or soups as the dieticians do not recommend. As the others have said you should get a visit from a nurse who will explain everthing about how to care for it , rotating, cleaning, and changing the water in the balloon that holds the tube in place. Good luck with the fitting im sure it will all go well, take care.

                                                                                   Chris  

Cheers Turi, that local knowledge is really helpful

I had to stay overnight. I was allowed to eat my last meal at 6am.  The peg was inserted under local with sedation. They wanted to numb my throat so they could push the tube down but I declined this and swallowed it instead.  Yes, I did gag but it was preferable to a numb throat. 
It took all of 8 minutes. I was not given any food for a good 6 hours afterwards . A long day without food 

i had a lot of pain and was told because I had a well developed core this can happen. It took me about 4 days to be able to stand upright without too much pain. And it took me about 2-3 weeks to become friends with it. For the longest time I had a pulling   sensation  to the left of the tube but I found exercise and walking eased it. It’s the only time I took oralmorphine  during my treatment. 

Hi my husband had his peg fitted a couple of days before his treatment, he was kept in overnight for observations. They gave him sedation and he didn’t feel a thing, he was amazed at this as they put it down your throat yet he didn’t even notice this… he didn’t have to prepare really, just the usual no food from about 8 am, he was eating normally the next day. He had ALOT of wind but they pump your stomach full of air so it has to go somewhere lol. He is 3 weeks into chemo and radio now. He has to flush the tube every day with just tap water and rotate it however you will have someone go through all this with you. Overall it isn’t a bad process although he does hate having it and can’t wait to be rid of it. More psychological though than anything physical. Good luck with your treatment and procedure x 

Hello Guy

I had a RIG fitted, which, as others have said, is a similar device to a PEG.  I’ll be honest, I was horrified when my oncologist suggested having the tube….but I lived to bless him for having insisted as about 3 weeks in to my radiotherapy I was dependent on it for all nutrition and hydration.  I don’t remember much about the actual fitting of the RIG.  I was out for the count.  I found it mildly uncomfortable for a couple of days, and was nervous of knocking it but found managing the hygiene of it ok after a couple of times of flushing it myself.  It was quite a weird sensation flushing water through it the first couple of times, but ok thereafter.  My biggest problem with the thing was that it was situated quite high…just where the lower edge of my bra sat….but I’m guessing that won’t be an issue for you ( unless I’ve misgendered you, in which case I apologise profusely).  
I imagine you will be offered support from your community nurse and dietitians.  I found this really helpful.  The only thing which upset me with the tube was that it became coated withresidue from the fortisip liquid food  was using and flushing it wouldn’t shift it.  District nurse recommended soda water which worked a treat.  The only other thing was that the stopper from the feeding tube came adrift.  Did a temporary fix using a sawn off feeding syringe and clear mastic prior to having the RIG replaced.

The only thing I wish I had done differently is that I should have persevered with at least trying to swallow and do swallowing exercises during the period I was dependent upon the tube for feeding.  It would have made the transition back to ‘proper’ eating much easier.  I struggled a bit.  In some ways it was just easier to use the tube for everything.

i wish you all the best with your treatment.

Liz 

Guy - I had a PEG fitted in 2018 and a RIG fitted in July 2022. I am now RIG dependent. Having a tube during Head/Neck treatment in my opinion is essential because of the likelihood that your throat will get ruined if you have radiotherapy. Radiotherapy will cause severe trauma inside and outside the treatment area and for many, that can cause swelling, scar tissue and soreness that precludes the ability to eat/drink. I agree with many others in this thread - I was full of dread at the prospect at having a PEG fitted but it saved my life as my throat was affected so badly that I couldn’t even sip/swallow water. Better to have had it and not needed it. Could not have imagined getting a tube fitted during treatment so great to hear your team have suggested you have one fitted. Keep us updated on your progress.