Sounds like you have yourself, your husband and his treatment under control as much as is possible. With support and words of advice from this forum, you will be looking back as a co-survivor in no time.

Yes, TwoCal and Jevity are high calorie drinks as well as Ensure Plus which are all pretty much the same in cal/mL and nutrition (although be aware they have no fibre). Supermarket or chemist bought ones are not "complete" enough and tend to offer extra protein without all the other essentials. They tend to be complementary rather than supplementary.

Good that you have a variety. Alex went through a few before settling on Ensure Plus which made him feel slightly less ill than the others. TwoCal was impossible for Alex and now, the smell of Vanilla (the only flavour we could get) makes us both sick. There is a juice type of one as well (Enliven)if your husband is struggling with the creaminess of the others. It didn't suit Alex, but your husband may prefer it.

Watering down worked for Alex as well although he hated doing this as it prolonged the process (which is part of why he ended up in hospital).

I don't know if we can get Carnation through the dietician here. Certainly it was never offered to us although I did not try the net at the time as I hadn't found this website yet. My early forays onto the net, uncovered a confusing array of body building style high protein drinks which were no good for us and cost a fortune.

That your husband is still eating is a very positive thing -Alex was entirely dependent on drinking or PEG administration from the beginning due to tumour damage and pain. Don't forget the hydration either. Flat soda water may help cut through the mucous - first mouthful may be swished and spat then he can drink the rest. There are many stories here of people relying on flatish fizzy drinks - usually soda or mineral water to help.

Re what finally motivated Alex? It was never about himself or fear of dying which blew me away when I finally twigged. The turning point seemed to be the day I told him I could not bear to be left alone after waiting for him half my life. He took that as his challenge. What motivated me? Research, knowledge and breaking each issue into a series of steps to solve the problem. Using Alex as a guinea pig to try out all the potential solutions. Drove Alex insane but kept him alive enough to start paying back the 649 cups of tea he owes me (currency used for each solution found)

Laura

First, I really sympathize with your husband. EricS had it right on the money about the different viewpoints of patients and caregivers. Jevity 1.5 is much much better for him than Ensure Plus since Jevity 1.5 actually does have fiber in it, in fact it's a special blend of oat and soy fiber that is chemically treated so after it hits the stomach it turns into 3 grams a can with 75% insoluble (what you need to avoid diarrhea). It's pretty cool, although it falls out of solution with wine so you can not mix the Jevity.
Hint to get more down easily: make a nice cup of coffee and add the jevity cans, they mix fantastic and the smell of the coffee plus the caffeine is a tonic. Of course this has to go down the feeding tube but it gets him in the habit of using it. For breakfast, I always have two full cans (474 ML) and coffee. For lunch, I do two more cans, For snack, one can in afternoon and then the Vitamix for real food.
Last but not least, please consider just telling your husband that you are counting on him to be here for you and the children. I know that if my wife had not broken down and said how much she needed me to tough it out and be here, I would not have bothered to do what was needed to be done. It really really hurts to eat, drink and the feeding tube is pure hell (still is for me). I've had a great and wonderful life and the struggle was simply too too much to deal with except that I realized that I would be abandoning my wife and son. As EricS posts, if you have a Why, you can do anything.
You can even do it tangentially by mentioning to him that when you read one post, you couldn't help but think that maybe he does not realize just how much you need and want him. Because if he does, then he needs to man up here.
Sad to say, what he is feeling is so normal, but that is no excuse for not dealing with it. Oh, and despite what everybody says, if he gets 2,000 calories down a day, he will make it. I was only 56 kg when I ran marathons and I am taller than your husband so his weight seems okay to me especially since I went down to that during my first TX.
Charm

Hi Charm:
Where do you get your Jevity, and how many calories does it have in a can? Can you get different flavors? Thanks, and hope you have a wonderful New Year.
julieann

Jevity is gotten ffrom a medical supply company. It is a prescription formula prescribed by the gastro doc, a nutritionist, or one of the other many doctors we have. There are several strengths to Jevity or any of the other high calorie nutritional formulas. There are probably over 100 different ones a person can be on. Usually the calories in these formulas range from 175 to 575 with most being 375 per can. These are completye balanced nutrition some with fiber and some without. Im sure someone could drink these things if they really wanted to but the smell of it is like baby formula. Mine is put into a feeding bag with a can or 2 of water and run thru a feeding pump while I sleep.

julieann

Your post lets me clarify my advice to Laura. Christine has summed up the options. IMO Jevity can only be tolerated with a feeding tube - it has only one flavor: "Yuck". Jevity 1.5 has 355 calories per 8 oz. can. My medical supply house delivers 8 cases plus 30 syringes each month per my prescription. The can says it can be drunk, but I think you would have to be very drunk to be able to drink it.

Laura

Since your husband already has a feeding tube, I pushed the Jevity 1.5. However since he can still swallow, it is important that he keep doing so and Ensure Plus (I also could only stand the Vanilla ) or Carnation VHC are " better" than jevity to drink. IMO, You caregivers have it so much harder than the patient. I hope his weight stabilizes.
Charm

Ah ha, my memory is coming back. I remember that is what I had delivered to my house when I was taking my treatments and had a feeding tube - I believe my insurance paid for it. Thanks guys for the information - I still have trouble swallowing after 4 years, and thought I'd try something different than the Carnation VHC, but I sure don't want to try to drink the Jevity. I knew the name sounded familiar
julieann

I cant drink my formula either. Just the smell of it is enough to make me gag! I use Nutren 1.5. Both my type and the Jevity are pretty popular liquid formulas.


Lsura, keep encouraging your husband to use the feeding tube as a tool to help him get thru this. If you dont have a pump ask for one. This way you can do the feedings like Angie's caregiver did. Everything they went to sleep she hooked up the feeding pump and let it run.

I hope your husband is beginning to take more in so he feels a little better. Try printing out all these responses and showing them to him. He will realize he is not alone and we have given tips on how to help him get thru this.

I had a PEG tube for 3 � years. For many months at a time I was totally dependent on the feeding tube. It is a tough situation to be in, both physically and emotionally. There were many times my medical team and I thought I might require the feeding tube permanently. The PEG is a useful tool that can prevent malnutrition, dehydration and consequently ending up in hospital. The times I could swallow throughout treatments, I could not drink those canned products. The smell makes me puke. IMO permanent PEG uses deserve a medal!

Ensure is the supplement of choice through the Victorian hospital system. A couple of years back I asked if they could supply, or put me in contact with a supplier of the Carnation product mentioned here. The nutritionist looked into it through the hospital contacts. Unfortunately at the time it was too expensive to get in Australia. It might be more accessible now.

Karen

Ron use to add either Hershey's chocolate or Strawberry flavoring to his cans of plain vanilla Ensure or Isomil is it called? I can't remember it's been awhile since he used that stuff they sent and I think we have alot left too. I'll have to check on that.

The canned formulas expire. There are many needy patients who arent lucky enough to get the prescription formulas paid for. For anyone who has formula or supplies left over there is a great organization that will help you get it to someone needy. Ive been caught without insurance for the past 6 months and have used them with great success. For example, someone doesnt have insurance, medical supply companies charge $10 per feeding bag. They are free with your formula. This is an exchnge program where the person who needs the supplys send a money order to cover S&H to the person who is donating it. There are also many manufacturers who will give donations of free formula for needy patients. Please IM me for any further info about ither program.

Oley Supply Exchange



(Sorry, I cant find the Nestle info right now but will later when I have more time.)