PEG decision

Hi Rachael

I was given a PEG tube as standard....proved to be a lifesaver and quickened my recovery....found the procedure to be quite easy on the day...overnight stay in hospital....further 5 days of recovery...moderate abdominal muscle pain well managed by meds.

Peter

I had NG tube fitted start of week 4 it was my lifesaver. They are easy to fit snd I stopped using mine 3 weeks into recovery. Once treatment finished the symptoms do continue anything up to a month or longer in many cases. Nutrition and hydration is vital to aid recovery. They may not fit a peg thus late worth asking  . 
think about it I had 2500 calories every day for months I was drinking 6 ensures a day once tube was out. Plus 2-3 litres of water. 
Good luck 

hazel 

I had a PEG fitted before treatment started.  I was an essential part of my treatment and recovery.  I ate right through to the last day of treatment and then had to go onto pump feeding using the PEG.  However, being at the end of your treatment I am not sure how they would plan to insert the PEG as it requires and endoscope down the throat and if yours is anything like mine was that will be incredibly uncomfortable.  A RIG is an alternative procedure that they could mean to do.  That does not involve anything down your throat and despite the issues some seem to have with the wound (which are just as common with the PEG) that may be an option for you.

I could not face the thought of an NG tube, but others have the same thoughts about the PEG/RIG.  Whatever way you go you need the nutrition and hydration that a feeding tube will help provide if you are to recover in an orderly manner and a reasonable timeframe.

Hiya.     They wanted me to have the peg but I really couldn’t face the thought of it.  
if you are determined enough you can get the supplement drinks down.   Be brave!! The rig tube by all accounts is no fun and constantly needs refitting.   
for me the issue was that the chemo took away my appetite.    Treat the supplements like medicine.   4 a day.    Everyday!!

good luck.    Be safe

Hi Rachael,

Not sure you would be offered a RIG at this point ? I had a RiG fitted a week before my treatment started, you have to have a very large NS tube inserted into the stomach so the stomach can be filled with air. It was painful before treatment,never mind about afterwards ! The Dr then inserts 3 sutures into the stomach with the aid of x-ray. The sutures are tightened to bring the stomach up to place and fixed with 3 buttons. I found the whole procedure very painful and until the sutures were taken out 2 weeks later. Many on here have had issues with a RIG ,many find a PEG much easier going .

Well it all seems a bit grim. The main problem isn't pain really, but I think a combination of psychological and  feeling sick, and that every time I get something down I am sick. Everything I get down for the last few days has come up again, or else I'm just dry vomiting. Not sure a tube will help that really.  It's a quandary. 

I'd quite like an IV but I know that's stupid. And anyway, I am still horrified by cannula's. You'd think I'd get over that one by now! 

Oh well, I'll see if the new anti sickness help!  And maybe not being in car everyday will help! We shall see! 

Thanks 

R,

Try bland ready brek with full fat milk used take me 45 mins and several washes down with warm liquid to eat breakfast gradually moving ontopoached eggs which slipped down. 

Hazel 

Hi Rachael 

So sorry to read your message.

I had a PEG fitted 2 days before treatment  and it saved my life as I couldn’t even sip water or swallow for a long time plus like you i had a real issue with vomitting.Its been in for 14mths not had a problem with it ( just due to have it taken out).

There are various anti sickness drugs they can try I had a few before they found one that worked. 

Have they agreed to fit feeding tube as most people seem to offered aan NG tube after treatment. I realise this may be an issue for you with vomiting so often.

I would speak to your team about your options asap.

Debbie

I have a telephone appointment on Wednesday. Will talk to them then. Or I might leave a message on Monday. 

Firstly, congratulations on getting through the radiotherapy. 

Sorry to hear that you’re struggling.  I was lucky in that my team did not put me in the position you are.  I had a RIG fitted before radiotherapy started and used it from about half way through week 2  and thereafter pretty much exclusively…including for hydration…for at least a month afterwards.  It undoubtedly saved my life.  As it was I lost a crazy amount of weight which even now, 12 months downstream, is taking its time about going back on.

I’m no medic, but I’m not sure I see how a telephone conversation on Wednesday is going to help you.  It sounds to me as if you need to sit down with someone so that they can see as well as hear how you’re feeling and what is happening…particularly as Christmas, with all that means for difficulty in accessing help of any kind for what can be a prolonged period, is just over a week away.  I think I would contact the team as soon as possible and push for a face to face to be clear about what your options are and how they can support you through this difficult phase.  Do you have access to a nutritionist?  Mine was a godsend.

I feel for you with fortisip.  No way on this earth could I have swallowed them.  Smell taste (some better than others but all pretty ghastly) and texture…ugh.  I managed them through the tube.  Once I did start swallowing food by mouth I found that making my own smoothies with stuff I liked the taste and smell of really helped.  My nutritionist also put me onto Nualtra smoothies….a powder which dissolves smoothie style in water…I also used fruit juice to make it more palatable.  I found these so much easier than fortisip.  I’ve no idea about the relative food values, but something was better than nothing!

 I hope you get something sorted out soon and that you feel better.  It’s a long haul but things do, with help and support, get easier.

Liz