Hydration obviously is probably one of the most important things for all of us to keep on top of as we go through our treatments, (no pun intended). The myriad of drugs and in the case of those of us with PEG tubes, the food suppliments, all lead to one thing, constipation.

I know that if I had a port in place that I could use it to infuse IV fluids to help with the problem. That likely would be the best of all worlds. Unfortunately I do not have one. As a chronic kidney stone maker, I have for years been drinking a large amount of water each day. I just cannot do that any more. In the past couple of weeks water has developed the most vile taste I can imagine. It is extremely difficult to swallow it. Yes, I am well aware that some how I must get it into me.

As dumb a question as this may sound, not knowing the answer, I have to ask it. Is there any kind of a problem with taking it in through the PEG? I do use several hundred ccs to clean the PEG following taking in my Carnation HVC. I am just wondering about taking in water for the sake of water using the PEG.

Has anyone else run into this problem with water having such a vile taste? Actually there is not anything that tastes as it used to any more. Most things have no taste at all. I sure wish water fell into that class.

TIA
Bill

Bill
I was compleatly nil by mouth for 4 weeks, so all my water went in my peg, when the weather became very hot and I was worried about dehydrating I put more through the PEG, I really cannot see a problem, just remember to syringe it in very slowly..
Sunshine...love and hugs
Helen

Bill,

my MIL has said the same thing about water having a nasty taste. Not that she can swallow more than a couple of sips a few times a day, but even that she says is too much given the taste of it. What I might suggest is putting a small amount of juice (like 1/4 strength, or even less) so that it is very dilute, that would not only flavor the water a little bit, but would also give added nutrients to the water. There are lots of different things you could try to flavor it, even liquid ice tea mix! (I use that myself, it comes in raspberry, lemon and even peach).

As for water in the tube in order to get enough hydration, as far as I am concerned if you have the tube, use it for anything you dont care to put in your mouth! There are far worse things you could be doing than tubing your hydration... I know lots of people who use it for hydration only (though most end up using pedialyte as it gives added benefits to prevent dehydration so long as you are not getting too much sodium etc....)

Has you tried taking in extra fiber, or using a formula with added fiber? that can also help with the constipation angle. My son uses a formula that has benefiber added to it (his formula actually is made from real food, chicken, cranberry juice, beans, peas, etc) and it has helped him.

I hope that helps, a little...

Heidi (Sean's mom and DIL to the bravest woman I know, oral cancer 6 yr survivor, esophageal 3 yr survivor, and recently re-diagnosed with oral)

Bill,

my MIL has said the same thing about water having a nasty taste. Not that she can swallow more than a couple of sips a few times a day, but even that she says is too much given the taste of it. What I might suggest is putting a small amount of juice (like 1/4 strength, or even less) so that it is very dilute, that would not only flavor the water a little bit, but would also give added nutrients to the water. There are lots of different things you could try to flavor it, even liquid ice tea mix! (I use that myself, it comes in raspberry, lemon and even peach).

As for water in the tube in order to get enough hydration, as far as I am concerned if you have the tube, use it for anything you dont care to put in your mouth! There are far worse things you could be doing than tubing your hydration... I know lots of people who use it for hydration only (though most end up using pedialyte as it gives added benefits to prevent dehydration so long as you are not getting too much sodium etc....)

Has you tried taking in extra fiber, or using a formula with added fiber? that can also help with the constipation angle. My son uses a formula that has benefiber added to it (his formula actually is made from real food, chicken, cranberry juice, beans, peas, etc) and it has helped him.

I hope that helps, a little...

Heidi (Sean's mom and DIL to the bravest woman I know, oral cancer 6 yr survivor, esophageal 3 yr survivor, and recently re-diagnosed with oral)

Bill,
Hydration through the PEG can meet your hydration needs. I used my PEG almost exclusively for four months during and after radiation and chemotherapy and never had a problem.

Ditto. Before I sytarted using my PEG for most of my nutrition, in fact, I began to use ot for hydration because I had the same problem with water tasting funny. I too have potential problems with kidney stones(a CT scan of my liver that I had when I was diagnosed with oral cancer just happened to also show several LARGE stones--probably too large to pass through which can be a good thing but I don't plan on taking any chances) and so I need to be sure to get lots of water and other liquids. I put a lot of water and tea and occassionally juice and other sorts of liquids--through my PEG every single day.

Barry started to complain about water tasting badl and I started to invesitigate different bottled brands -- the bes two were Poland Spring (from Maine) and the house brand from Trader Joe's (which is from a Pennsylvania spring). He can drink these with no problem. Also, the suggestion to dilute juice with water also works -- he likes mango juice diluted about 1/2 and this is 70 calories/8 oz. so good for both caloric intake and fiber. Mango seems the mildest and least apt to cause mouth pain)..

Gail

Thanks for all the responses. You people are the absolute finest anywhere!

I have been using Welch's Grape just and cutting it almost 3 to 1 to reduce the acidity. I had not given any thought to any other juices, or even tea. I must persue that avenue.

Hi Bill,
I have been on the peg for over four years now - four years and seven months to be more precise. I have no options regarding even tasting what water tastes like as I have not had a sip of it in all these years and months. However, as far as dehyderation is concerned - I have never faced a problem and I " drink" a lot of water in the form of plain water, juices, soya milk and other healthy mixes.
The only thing that surprised me in one of the postings is saying that one must be careful to see how much you syringe at a time. I too use modified syringes ( one I which developed at home) and there is no limit or speed through which I have to pour the liquid down the peg tube.
_____________________________________________
Ananth

Hi Bill,
I just asked our MD this week about hanging bags of water for John through the peg rather than getting IV fluids once or twice a week through the port. I had done this once or twice early on in the treatments without asking. He discouraged me saying he could drop his sodium too low and have problems. He did not want me give extra water through the peg other than the amount they recommended. He's starting to drink again so hopefully he won't need the IVs much longer. Maybe Gatorade will hydrate you and not be a problem since it has electrolytes - don't know for sure though.
Peace,
Janet