Dan asked me today could we put anything down his PEG other than the prescribed formula and water. Our doc said we could use gatorade if he seemed dehydrated, but that was it. What have the rest of you used?

Thanks!

Michelle, I am answering this question but I've recently become aware that PEG tubes vary in width and so in what they will accomodate easily I suspect. So someone else's answers may not be right for your husband.

I put all sorts of juices down my PEG--the only caution being that they have to not have any substantial pulp or be very thick or that can end up blocking the tube. I have also poured lots of green tea down my tube.

Back when my stricture was bad and I couldn't swallow at all, I would every day flush down the tube some V8 juice and some other kind of juice (Bolthouse Farms makes a blueberry/blackberry juice "smoothie" that is thin enough to use which I liked). I swear those juices made me feel better and as though I had more energy than when I was just using the jevity formula alone. Might have just been psychological though.

Nelie

I was not aware that they varied in width. That obviously determines what you get through them.

The external diameter of mine was perhaps a tad wider that a normal pencil. In addition, to water and jevity/benecal etc. I put all kinds of stuff such as vegetables through it. You have to make sure that they are blended well and that the slurry is not too thick, otherwise you will clog the tube and or just make a major mess. Usually you can unclog it by applying pressure (gently) with a syringe and water, with sometimes surprising results.

Except for the clogging issue I see no reason to limit what you "eat".... of course you will not taste a thing... maybe this IS the way to eat broccoli?


M

Michelle- Neil's PEG is smaller than normal because it was put in surgically rather than down his throat. We use the formula and VHC. We're afraid to clog it although when it did clog in the beginning we used club soda to clear it out.
Sue

Ok guys thanks. I'd really rather not put anything else down it other than his meds, water, and the "prescription" formula. But if he pushes I will puree it is as fine as I can and have my plunger part of my syringe and some club soda on hand to take care of clogs.

Regarding diameter I would describe Dan's as the size of a pencil, maybe a tad smaller.

Michelle, clogging it up is not a big deal really. It generally happens at the front end where the connectors are. You can unclog it with the syringe and water (pressure and suction).

good luck with it. This thing is actually quite robust.

M

Again, I'd recommend after pureeing running through a strainer or cheescloth to be sure there are no small lumps the blender missed.

Nelie

What both cheers me up and provides variety is WINE. All of my doctors agree it can't hurt since zero alcohol enters my mouth or throat. Beer foams up too much, but I did do some whiskey at an anniversary party for a toast. I just load up the syringe and do a bolus feeding with the wine. It makes it much nicer to take my wife out to a restaurant since I can order wine which makes it less awkward than not ordering anything. Plus now we can have "happy hour" on weekends at home
Background I wasn't on a PEG tube back when this thread started and thought I would never need one since I had survived radiation & chemo. After the surgery for the Recurrence on Ash Wednesday almost 9 months ago, I have failed 3 barium swallow tests so I am stuck with the PEG. I find it very depressing to just have Jevity but with only a 14FR Peg, soups, blended or pureed veggies, or even juices just clog.

I have not tried a 14 FR. My 20 fr allows for pureed soups and supplements. My nutritionist is not a fan of jevity/isosource so most of my survival is based on supplements - liquids, capsules opened, pills ground, and even melted coconut oil. I had a beer about 2 months ago and the foam was funny. Until I am able to swallow there will not be any fun with the tube. I am focused on healing and consume nutrition for healing and not much else. It helps me deal to have a target of swallowing. Wish me luck with the next throat opening procedure.
Mark - 10 year survivor of SCC.

Mark

good luck with the throat opening procedure. You are already lucky to have a 20FR as I started off with a 12 FR which leaked and they would only bump me to a 14FR which cannot take anything thicker than Jevity.
Have you considered VitalStim? NIH is doing a clinical study on E-stim for swallowing. Here is the link with general overview of NMES therapy plus where they are accepting patients. NIH Estim for Swallowing
I am on my second round of another 12 treatments and while I can do 400 "forceful swallows" of "thickend" nectar, still can't pass the dang Modified Barium Swallow test and aspire both thin and "honey" solutions. Like yourself, I tolerate the PEG while focusing on learning to swallow again.
What is your treatment regime?