Feeding tube question

Hello,

This seems like a silly question after looking around this site but... my wife went to see about getting a feeding tube today - she has oral cancer and can't eat solid food, swallowing liquids is also quite painful.

The doctor told her she'd only be able to use commercial formulas like ensure or the tube would get clogged up.

Has anyone heard information like this before? The main reason to get the tube is so she can make her own healthy food to help her fight the cancer.

Thanks for any answers.

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Andy, I don't know if your wife has any other issues but there are many people who put their own food through the tube. You do have to be careful - I don't do it but there are others who can reply to you who do. I would say your wife should be free to put whatever she wants to in it - she just has to make sure it is really a liquid consistency (blended well) and then flush really well.

I hope she does ok with this.

Lynee

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Hello Andy, & Wife,

I'm Lesley and the mother to Nina Marie. Nina was born without an esophagus so she received her G-tube at 4 days of life. Nina is now 11.5 year's young and still has her G-tube which I'm in love with.

Since Nina was 15 month's old I've been doing Blenderized Diet with her using real whole foods. From 15 month to 3 years I used her formula as a base. Since the age of 3 Nina has been 100% formula FREE.

Some health care professional don't know about doing Blenderized Diet and don't know that it can be done via a G-tube. There is NO right or wrong way to do Blenderized Diet. If you would like to know more about Blenderized Diet please visit my website at: www.BlenderizedDiet.com

Understand I'm NOT a doctor, nurse, RD and I'm NOT suggesting your wife go on Blenderized Diet without the support of her medical team.

Blenderized Diet is NOT a cure for any type of medical condition.

Prayers, & Blessings,

Lesley - a/k/a NinaBean

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Hello there.

I wish you well in getting things sorted out to meet your wife's needs. It sounds as if your doctor may be underinformed about feeding tube nutrition.

As you are making decisions just know that if you do go with formula, there is a long list of medically prescribed formulas that provide full nutritional needs. A doctor should be able to refer you to a hospital or clinical dietician who can help you sort out best options for your wife's needs. I have lived on formula for 4 years and am nutritioally more healthy than pre-tube.

There are no cut and dried right answers. Best wishes in finding what is best for your wife.

Cheers for life and breath! Marie

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andy-sgf,
Not sure what kind of tube your wife is getting. But I have been eating a blenderized diet for more than two years now and have never plugged my tube. Yes my nurses told me that my tube was not compatible with real food. But I had to change from formula because I was nauseous all the time and lost 60 pounds in 3 months on formula. On food I am maintaining my svelte 200 pound figure with no problems.

I know that the first tube I had was one of the real long tubes that terminated in a pigtail fashion in the stomach. I would expect that that kind of tube might have problems with food that wasn't completely liquidized. But the smaller buttons or low profile Mic-Key or AMT mini one buttons work very well with real food.

If you need more info I would be happy to correspond with you regarding this issue.
Steve

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Hi Andy:
Alot depends on the type of tube she has placed. If she has a gastrostomy (gtube) which goes into the stomach she can use real food. If she has a Jtube placed which goes into the intestines she should use predigested formula.
Please do some online research before you agree to either tube. A jtube usually involves using a pump and can tie you down.
Good luck and keep us posted, feel free to ask us anything.
Holly

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My 15 year old son has a G-Tube, (Mic-Key). He uses Elecare formula at 54 ml/hr for 22 hours a day. He uses an ZEVEX Enteralite Infinity pump. It does not hold him back from anything, or slow him down. We need to have 2 pumps so one can always be charging, and 2 backpacks so one can always be cleaned. Unless you are really looking and paying attention, you most likely would not notice anything other than his backpack, (which looks like a normal backpack)

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Thanks to everyone for your responses - this has been a big help.

Jean gets her gtube on Thursday, hopefully that will go smoothly.

Thanks again.

Andy

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Thanks to everyone for your responses - this has been a big help.

Jean gets her gtube on Thursday, hopefully that will go smoothly.

Thanks again.

Andy

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Some resources on blenderized tube feedings is posted on the Oley Foundation web site's Tube Feeding Tips page in the Formula section http://www.oley.org/tubetalks.html

You may be interested in other tips on this page as well.

If you'd like to receive these tips on a regular basis through the Oley newsletter, sign up online at (everything is free of charge for patients and families) http://www.oley.org/join.html or call the Oley office at (800) 776-OLEY.

Best of luck!

Roslyn Dahl
Oley Foundation Staff
dahlr@mail.amc.edu

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