Bad weekend.

Hi. Mintcake, use your rig if you are having trouble swallowing. Are you having overnight feeds? It's never too early to use it if you need to.

Ray.

Not been given the go ahead to use it for food yet. I am using it for extra water now. 
visit from the rig nurse tmrw, so hopefully the green light to use it from then. 

Mintcake said:

Hoping this is going to get manageable. 

It is. Use your RIG. My NG saved my life. I list little weight and I’m sure that’s the reason I made an uneventful recovery 

 i when you get tge go ahead for diid ti go in dOnt  struggle please use it  My n g was a lifesaver I credit it ti my recovery being like  Dani’s uneventful. n surprised they haven’t made you a priority for using it but all trusts are different as we know. 
Hugs Hazel x

Hi Mintcake, I feel your pain. I went in to A&E at the beginning of week 3. Severely de-hydrated due to 4 days of constipation followed by 3 days of diarrhea after the Chemo. Any fluids in, just went out straight away. Seven hours and 2 litres of saline later, discharged. I too had lost over 6kg. My Oncologist suspended Chemo for the following day but I carried on with the Radio therapy. The golden rule is talk to your team giving every detail you can, as my radio is daily I see somebody from my team nearly everyday. I use my RIG for pretty much all fluid and fueling, with frequent water sips for any food and for tablets. Stuck with it and your RIG will be like your best mate.

Still got RIG tube in 7 months later.  Can't swallow, eat or taste. Now on pump feeding after losting 3.5stone.  Wish I had done it earlier.  Not a lot of help out there waiting for appointments as ever.  Use the RIG try not to lose weight it just gives you other issues otherwise.  I've been in hospital for 2 lots of 2 week stays because of weight, dehydration and defiences.  Ive seen a kinesiologist for the past 5 months and she has helped me rebalance myself. She also put me on Selenium, High dose Vit B complex, Vitamin E and high dose vit D.  Ive taken these for 6 weeks plus now and I really do feel,a lot better.  She says that RT depletes you but nobody tells you and until that balance is sorted we not going anywhere!!!!   I bought all of mine from Vitabiotics who are pretty much the same as the very expensive brands.  Really is worth a try.    X

Have to be honest, that horrifies me. 
really feel for you. I’m on week 3,of RT and cannot eat or drink, all I’ve been given are shakes with as far as I can see, very little nutritious value, just empty calories. They are not going to cut it long term. I have already lost a stone in 2 weeks. 
I wish you well for a recovery and a swift return to a life without the rig. 

Hi Mintcake, the shakes will give you some nutrition, but you really need to start using your RIG for feeding, if you keep losing weight, it will just make things feel worse. You have to tell your team you are struggling so much with eating. You said you were going to have a visit from the RIG nurse, a few days ago, what did she say about using your RIG more?  Sometimes you have to insist on things to get them done.

Ray.

The nurse was showing me how to replace the water in the balloon. Told me I could only put prescribe product from them through the rig. That was about it. 
You are right I have to be more proactive,

Mintcake said:

Have to be honest, that horrifies me. 

Mintcake that situation is uncommon so try to put it away. 
You have to remember that this forum is self selecting and a lot of the folk who post here are in trouble. 
Most of us make an uneventful recover. 
Losing a stone is too much. What sort of shakes are you on? I was prescribed Fortisips and the other common alternative is Ensures. Both are complete diet replacements and provide 2 calories per ml. Mine came in 200 ml bottles and while I was on them I had six a day. 2400 calories daily 

Later I couldn’t be bothered bolus feeding and went on a bigger bottle by pump over night. My NG tube was out six weeks after treatment end 

I hope some of this helps