PEG Tube

Hello Ali not a nice thing to be going through I know, difficulty and lack of pleasure in eating is horrible. I did have a PEG fitted personally (as a precautionary measure before treatment started) but I really struggled to get anything down it during treatment as I was bunged up and bloated; was only after treatment was finished and I was given a pump feeder that it became invaluable.

Do you have one fitted already or are you being offered one? If you have one in place then I'd say use it straight away and if you're being given the option of having one fitted I'd advise you to go for it. I was an in-patient for the last four days of RT due to weight loss, which was when they taught me how to use the pump; was my only source of food for several months so I don't know what would have happened without it.

Thanks Mike. Yes I do have a tube already fitted, thankfully the procedure was done before treatment. Your experience sounds awful, no wonder you were admitted. How soon did you get your taste back after treatment, it’s so hard watching my family eat lovely food and not be able to enjoy with them. Keep telling myself it’s only temporary but it certainly is a depressing part of the treatment.

Hi, Ali, I had a RIG which is much the same as a PEG, I started using mine about 3 weeks into treatment and was 100% relient on it for about 10 weeks. So I would say if you need to, use it, anything to help through treatment has got to be a good thing. I was so pleased to have mine. All the best to you.

Regards Ray.

Ali the taste coming back is so hit and miss even now (for me). I used to live on curry but now can take them or leave them, I know when I'm having a good one but it's my brain telling me that rather than my taste buds, and rice (which I used to have with everything) I just don't like anymore. Some flavours really hit the spot though now, mustard being one and pickled onions another.

Strangely though if I was sentenced to death (hopefully unlikely) my last meal now would be sausage and mash with Heinz (other brands are available) baked beans.

So basically things are different, but I'm OK with that because I'm still here.

My main problem is that I almost never feel hungry so my motivation for cooking, I was previously the main cook in the house, has gone. If my wife or one of my kids (or a restaurant) provide me with a nice meal I do enjoy it, and I love watching Masterchef, but it's not the same as it was; though as I say it's a small price to pay after so many people went to so much trouble to keep me alive. The "new normal" is how people often describe it and I'm grateful for it.

Wish you all the best, this is just me and many people fare much better.

Just as an afterthought I was still struggling with any taste about nine months in and my consultant said to me, "I think you've got back all you're going to at this stage". Immediately after that things improved dramatically so maybe there's a mental aspect to it; I was so desperate to get everything back and once I was told it'd gone for ever my brain stopped wanting it so bad and "nature" took over. Don't know, just me.

Morning

My hubby, Ken, started using his PEG in week 3 and by week 4 he used it for everything including medication. He had 6 or 7 Fortisips a day and then sometimes topped up with Calogen to get an extra calorie boost.

Initially he hated the tube but then realised it was an essential piece of kit and resigned himself to the fact he need it.

He still uses it now, 7 weeks post treatment, for 2 - 4 Fortisips depending on what he has managed to eat orally. But of course whatever he is eating orally doesn’t cover all his nutritional needs. He struggles with getting protein in orally cos he now has a hatred of meat.

For his mouth he had Caphosol (which I understand is a contentious topic and some consultants won’t give it), gel Clair for the ulcers and acti balm for the lips. He progressed from paracetamol to co codamol to oramorph to long lasting morphine for the pain. 

I hope this is helpful.

Hi Ali I didn’t have a peg but in week 4 has a nasal feeding tube which I had in for the following 3 weeks then changes as mine has to be changed every 3 weeks I had it I. For a total if 6 weeks .It was t the most pleasant thing but ut did keep me going during g the period that you are now facing. I was told at the start that I may need this as pegs were only put in prior to treatment has during treatment if could be too much to cope with .

i have a piece in my blog details below , from week 4 I took very little orally and all meds were put in via feeding tube. Hope this helps .

Hazel xx

Sorry Ali just read that you have a peg my advise isn’t to use it. Food for a while probably won’t be pleasurable but it will eventually come back ok maybe not to the same extent for a while it may be eat to live as opposed to live to eat. But tonight I’ve just had hime made chips ,rib eye steak rare and salad and onky the salad was difficult to eat.

Hazel xx

Thanks Hazel. I’ve just looked at your blog, very inspirational.  I’m just struggling to cope with the pain at the mo and I’ve only done 3 weeks. So scared of what it’s going to be like and feeling so low. Xxx

Hi Ali thank you the blog was the only thing I could retain any sense of control over. About pain relief best advise take as much as you need don’t be scared of getting dependent on it. Like my oncologist said we are taking it for a reason to kill the pain treatment is tough enough without suffering. When time comes to stop it just do as u did s phased withdrawal dint stop straight away . 

You will get there just baby steps  any help just ask   Kerp in touch Hazel xx

I think I must be different to most, as I loved my PEG

I didn't have any choice about when starting to use it, as I had an operation on jaw before my chemo/radio started, and was using it the day after my operation.

Even when I did start eating I would have 4 or 5 fortisips a day, not only was it easier, it was cheaper too :)