More TMI

[nebrhahe53]

OK you said it was ok to ask anything.
We have been trying to increase my tube feeding but have run into a stone wall. At about 2 cans of Jevity 1.5 I get really bad gas and then just have to keep going to the bathroom. We have tried to go up a little at a time, but no go, at 2 cans bam. I need 8 to maintain my weight, and eating by mouth is harder and harder not because of swallowing per se but because of damned mucus. I swallow it with food, it helps food get caught in my throat, it makes me feel like I'm choking...
We've tried lemon, papaya, herb tea, nothing seems to help. They told me to keep the mucus thin to help atelectasis but this is unbearable. I wonder if I should go back to the drying formulations like Claritin d and scopolamine.
Any better formulas than Jevity? Wifey does not want to blend natural food. I think she's afraid the tube may clog. Does boost plus cause mucus buildup?

 

[Nikki J]

Formula is trial and error. My sister could not tolerate jevity at all. The next thing she had we were told that it was essentially predigested. She tolerated that and was able to up to a stronger version. She gained back weight and did well but always felt hungry on it. Now she has another compleat which is supposed to be derived from real food. Do you have a nutritionist? Who prescribes this for you? Jevity is standard for ALS but not right for all. You need to tell whoever and it may take a few tries to get the right one for you. How fast are you taking it? As you go up on the number of cans you may need slow feed by pump and do it overnight

 

[gooseberry]

Steve does glucerna. Its only occasionally but he gets a container at room temp with 30 seconds in the microwave . Then its down the peg. Neil if you can still suck and swallow try smoothies. You can get various protein powders and mixes that are non dairy, add in some fruit and digestive enzymes, some juice to thin it and yummmmmm. I buy Steve the wider diameter tervis straws from bed bath and beyond because otherwise it is too hard to suck up fluids in a regular straw.

He also likes fresh pinapple with oj and a touch of half and half, a greek yogurt, or ice cream. Depending what you put in you can always add ice and your digestive enzyme. Great way to stay regular and keep comfortable.

 

[AKjo]

Gary had those same results with Jevity 1.5. That was with bolus feedings. When he was in the hospital they started him on Peptamen 1.5 using a Kangaroo pump, and it is working well. He gets 100 cc and 50 cc flush of water per hour. He complains about feeling full all the time, but the diarrhea is gone. I give him that powdered fiber stuff and liquid stool softener twice a day; this combination of formula works for him. He is hooked up to the pump all night, then free during the day. They prescribed 5 containers of Peptamen daily, but he says he is too full and doesn't want the last box, so a couple times during the day I mix up some high calorie surprise stuff and give him during the day. Even those 5 boxes doesn't give him adequate calories for someone with ALS!

 

[Janie H]

I am also new to tube feeding, I use Isosourse, I have to do one container at a time. I drink 2 cans of Ensure a day also.

Janie

 

[Grumpy'sWife]

It took Grumpy almost a month to get adjusted and it was trial and many errors! We do 1 can of Jevity 1.5 and 4 ounces of water every 3 hours. He gets 5 cans a day. This maintains his weight and keeps him from feeling too full. If we don't keep the amount of water correct then he said it makes a difference but he can't explain it. I flush with 2 ounces and then the warmed Jevity and then 2 more ounces of water.
The only other ALS patient we know in our immediate area can't take Jevity and he does Boost Plus. I am not sure of the amounts though.
I hope you find something soon, I can't imagine how frustrating this must be! ~Kaye

 

[BlueandGold]

All dairy can cause an increase in mucus. I have had this issue all of my life but up until now I've just dealt with it because I am an ice cream fiend! Now, with weakness in my throat muscles the mucus is even harder to deal with so I'm cutting back on the dairy. I'll have to find other non-dairy ways to increase my calories.

Vince

 

[MaxEidswick]

>I'm cutting back on the dairy. I'll have to find other non-dairy ways to increase my calories

yup, had to give up choc milk :-(