Eating again following treatment/NG tube

Good evening Joanne83, so sorry to hear of your recent complications, it sounds as if everything has gone wrong in one hit. I know the Ensures are not the best tasting drink, why they don't improve them, ie savoury ones I will never know, however, he must try and get more calories inside him otherwise he will end back in the hospital due to dehydration which I'm sure he will be told by his consultant or dietician. What he has to remember is that it's only for a short period of time until his swallowing improves. In a way, the amount of sugar could be a problem as they are extremely sweet. I have a tube in my stomach (PEG)as my swallowing is very poor and rely on the PEG but I do drink cup a soups to give something to taste it's a bit messy but worth it. I understand how difficult it must be for you to get your point across and maybe if he is told by the professionals he change his mind. If he has to be tube fed for a long period of time then maybe a PEG is the answer as it is out of sight and easy to use. Wishing you and your family all the best, take care.

                                                                               Chris x

Hi Joanne. Sadly as yucky as the ensures are and I assure you they are or were vile they were the key to me getting  tomSpain 8 weeks after treatment finished. I treated them a food was fuel it was part of my mindset. As for appetite sadly that can take several weeks or even months  again it become eat to live not live to eat. If the dieticians have given him 5 days I am afraid they will possibly re admit him as he needs the calories to thrive and survive.inwas told 85 gram and 2000-2500 calories each and every day for in my case a year. I understand the sugar thing i really do  I spent 5he previous 40 years shopping avoiding high calorie foods , i had  to change my mindset to get enough calories in to me. I was  on 6 ensures a day from week 3  of recovery which allowed me to concentrate on trying foods. Poached eggs and crumpets were some of my first food. Ps. I’m afraid to say there’s no magic fix. My blog below might help you and if your  hubby  if he would read it.  . There is  also an article below written by a cancer consultant it explains what happens after treatment .

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

I did  get to Spain  but took ensures with me.

Hope this helps Hazel 

Hi Joanne 

Welcome back and so glad that your husband managed to get to the end of the treatment which is doubly hard for people with diabetes. It really is a good sign that he has no pain swallowing....pity there is just no inclination.

To be truthful I could easily have not bothered eating for months after my NG tube came out. I had no interest in food that tasted of nothing or worse, tasted awful. I remember cooking myself a lovely steak at 12 weeks plus....just to prove I could eat it. I managed but it tasted of absolutely nothing. If sweet ensures are driving your husband to not eating then might I suggest you get some protein shakes made. there are loads of recipes on the internet. A banana milk shake fortified with peanut butter (put in slowly as you liquidise the rest) adds masses of calories and protein with not too much sugar. Add an avocado and you can practically survive on that. Then it's a question of just getting it down.

Taste and smell are so intertwined. One thing I did regarding taste is to blow the air in my mouth back up through my nose while I was chewing. It's amazing how you can improve the taste of something by doing that. It's worth trying.

It's been a struggle, I know but it will get better. Get out and enjoy that holiday but a word of caution. It won't be a normal holiday. Your husband will get absolutely knackered trying to be the husband and dad he ever was. He will in time but at the moment his battered body and soul need rest. Some sunshine and good fresh food and he'll be on his way to being a new man. 

Hope you have a good time

Hi Joanne. The only way I could tolerate ensures was to mix it gold top milk, it made them taste more like milk shakes. I didn’t have that option whilst I was in hospital and they tasted so vile I just couldn’t drink them. See if your husband likes them any better that way. As Hazel said they will help with his calorie intake. 

I loathed the Fortisips drinks, except for the mocha flavoured one which was unexpectedly pleasant, perhaps because it was reminiscent of coffee. It may be worth trying different flavours to see if there is at least one that is palatable. I also found that if they were very cold from the fridge I could manage the Fortisips better, but I could even fancy the mocha one at any time now I can eat more normally.

Hi Joanne

i had loads of double cream with the weetabix and pure organic collagen protein powder  I had this 3 times a day    The cream does not cause any discomfort. hope this helps

lizzie

This is my favourite one as well Cathy hope all is well.

                                                                    Chris x

It is a tough one, i remember the fortisip was disgusting and i completely lost my appetite too, everything was tasteless or vile for some time after treatment. I had to force myself to eat them and i didnt get the recommended calories either.

The appetite does return, i eat too much now and need to lose weight.

Thanks so much everyone for your help and advice, I really do appreciate it. Chris probably hit the nail on the head with the fact that everything that could go wrong, went wrong last week and all throughout his treatment, I’ve pretty much just been on auto pilot and done what’s needed done and not allowed myself to wallow or feel sad about this whole situation. Probably only now that he looks better and feels better after a horrendous few months, are my thoughts drifting to how our lives once were and all the goals we had that are no longer but I just try to refocus my mind on the main objective now which is to get good results following his appointment on Friday and other good results after his PET scan at the beginning of June.

Anyway, we had a good chat with his dietician and diabetic nurse and both agreed he needs the drinks to continue without the tube. So they have switched him from the milk based ones to the fruit juice ones to see if that’ll help. So far, he had 1 yesterday and another today but he really needs 3 per day so we’re working on it. He just says it so hard to eat when not hungry, plus he has some oral thrush just now which I don’t think is helping but he’s treating this with medication the doctor gave him. He is managing lots of water though which is good, we just need to try and up the calorie/protein intake which is hard when he has no desire to eat. 

So our holiday is 3 weeks tomorrow and I’m nervous about the appointment with his Consultant this Friday - she has the final say on whether he’s fit to fly. I wanted to say to the Consultant that he’s attempting something for breakfast, lunch and dinner plus having his 3 drinks but I don’t think that’ll be the case; I think we’ll be advising that he’s eating 1 weetabix for breakfast with a drink, attempting lunch (mainly half a bowl of soup) with half a drink and attempting something for dinner (but not much) with half a drink and pray this is enough.

thanks again everyone

Joanne

Hi Jo the oral thrush will also be effecting his eating. Hope he had been given flucozonole for it as radiation thrush only responds to that medication. Nystatin isn’t effective I know from experience. 
Hope you do get away.  Try to get scan shakes from g p in  powder form  ti take away . If you are going to Spain the chemists sell meritene powder which you mix with water or milk you can use fruit juice but that could  irritate him even more. 
Hope this helps 

Hazel