Having PEG tube on Monday

Hi rich wel, I’ve had my peg in for a year and a month after jaw surgery to remove a stage 4 tumour I went in week before my surgery and I didn’t know what to expect they spray the back of your throat to numb it then partially sedate you it was so quick I woke up with my peg fitted, your then tol d to lay down for a hour or two then if your ok they let you home, be prepared for it to be sore for a few days but as time goes on you don’t even know it’s there, I’m waiting to have mine out once I can eat better x good luck I’m sure it will be ok and it helps a lot with keeping your weight up and the drinks are full of protein everything you need in a small bottle 

If you are sedated, and make sure you are, because it’s not a pleasant experience otherwise, you will be absolutely fine.  Your stomach muscles might feel a bit stiff afterwards, as though you’ve been doing sit-ups, both otherwise it’s painless.

Hi Rich

I have been unsure whether to post a reply. I had a bad PEG experience but that is very rare and you may benefit from the lessons learnt from my experience. The main thing I want to assure you is that the PEG is a positive, amazing, helpful thing to keep up your nutrition and give you medication when you need it. Advice 1 get a pill crusher! 

For PEG insertion try to relax (easier said than done) make sure they talk to you especially let you know when mouthgard is going to be put in as you can't speak when it's in. The nurse should watch your eyes as you get sleepy with sedation. You are aware something is happening but with effective sedation you just don't give a monkey's. At my trust you stay overnight and are NBM for 6 hours before and after so need analgesia written up by another route eg iv paracetamol. If you have severe pain, breathlessness or other signs of sepsis let staff know. (Happened to me so chances are it won't happen to you) Dietician should see you before you go home and peg nurse usually visits you at home. Tape eg hypafix or micropore is good to secure tube. Advice 2 get adhesive remover spray if you're hairy! 

You get into a routine of boiling water each night to cool ready for flushes each day. Don't be ashamed of the tube. I didn't have a pump and did bolus feeds up to X5 a day, about 20mins each time. I put paper sleeves over my feed bottles and wrote on the meal I really wanted and imagined the taste and texture - sounds crazy but helped me. 

I slept on my back and right side (peg was slightly to left) I found a V shaped pillow helped. I used a bread bin in the kitchen to keep syringes and medication etc hidden and had peg feeds at the dinner table as my family ate. 

This reply is way too long already so I'll stop. All the best for tomorrow and the rest of your journey.

Liz x

(ps I'm not hairy myself just aware some people are)!    ... And yes I know a cat on my legs while peg feeding may not be very hygienic to some but I was careful and thought you might like the photo!

Hi Liz

Thank you for your message. It has been very helpful and I will be taking your advise on board! 

Forgot that. Had to stay in over night sorry,but my experience wasn’t frightening I’m just now concerned about them taking it out and how x ️

Hi LG I’m much the same as you it’s been 14 months and. Still have my peg in although I don’t feel it or realise it’s there I can sleep on either side now without discomfort and ive got cats too that often help me x

Liz sorry I need to read through before I send x 

Tiadora said:

I’m just now concerned about them taking it out and how

Have a look here Peg Out Time

I was worried about having the PEG removed but it was absolutely fine. The method depends on whether you have a Corflo or freka x 

Hi Rich

I hope you find the PEG as easy to manage as I did.  I was sedated on 4th Jan and had it inserted, RT started 4 days later.  I remember burping during the process and looking up at the endoscope monitor to see the inside of my stomach.  Other than that I knew nothing of the process.  I don't actually recall taking even a paracetamol after the procedure.  It was painless for me.  Once released from the hospital after an hour or so I actually went shopping...

I never had any discomfort from the PEG, but it was a lifesaver during my treatment.  Just look after it as instructed and get prepared to use it before you actually need to.

I was worried that I would catch the tube on my clothes. I wore a vest 24x7 and that isolated the tube from my clothes and bedding.  I also had it taped to my abdomen to stop the tube flapping around.  I could not get on with the belt they provided as it seemed to pull the tube a little.  I don't think anyone noticed I had a PEG in when I was dressed, even when pump feeding.  I was quite discrete.

I slept mainly on my side and had no problems with the tube.  As I don't like sleeping on my back (from an episode of a broken leg in traction for 3 months) I decided not to feed overnight with the pump.  I found that doing it during the day worked for me and if I went out the provided backpack for the pump was good and safe.

Good luck for tomorrow.