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#195142 09-23-2017 12:51 PM
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Does anyone know if a newly put in feeding tube patient can give herself Ensure supplemental drinks along with her prescribed liquid food? We are just over 3 months since surgery thatvremoved her tongue and only 3 weeks home and now have all these questions that you can't call the nurse or doctor for everytime.


Susan M Hawkins
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Welcome to OCF, Susan! You have found the very best place to get info and support to help your sister with her recovery.

Often patients after their treatments feel abandoned by their medical team. Feeding tube users frequently have many questions. Ive had over 10 years experience using a feeding tube so I know most of the ins and outs of feeding tube use. Your sister should be still monitored by her doctor and a nutritionist/dietitian for her feeding tube needs. If you dont mind me asking, why would your sister want to add boost or ensure to their current prescription formula? Over the counter nutritional drinks are similar to the prescription formulas but they could have additives that may not work so well with a feeding tube. The prescription formulas are designed to be used thru the feeding tube, anything else could have a negative impact of greatly shortening the life of the tube. They could cause clogs or might not flush as completely as the prescription formulas. The prescription formulas are specifically designed to give complete nutrition just like the over the counter ones do. If cost is a factor, the over the counter brands can get very expensive when using multiple cans a day. There are several major manufacturers that have programs to assist patients and other sources to get additional products at little or no cost.

Hope this helps you.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #195146 09-24-2017 08:53 AM
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Thank you for your response. We are very new to this entire experience and just looking for answers, ideas and opinions anyplace we can find them. We will ask her doctor about what is correct and what is not, to feed herself and go from there. Again, thank you.


Susan M Hawkins
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You're welcome. We're here to help you. Feel free to ask questions. The search box will bring up many threads with info that has been passed around to many patients and caregivers over the years. Feeding tubes havent changed in the 10 years Ive been here, neither has the formula. Many patients do not have the support they need to pick up on all the ins and outs of tube feeding. After the tube is installed, the supplies delivered and a nurse will overload the patient and caregiver with an overview of the basics then they're left on their own. Theres a million and one little tricks to successfully perfecting the art of tube feeding and all the formulas. Ive been using a feeding tube for far longer than Id like to but for me, its a necessity. Ive learned quite alot of tips to make it as easy as possible.

Im curious about the reason for wanting to add over the counter nutritional drinks to the prescription formulas. By knowing whats behind wanting to add boost, ensure, etc it will help me to gear my reply towards the info you're looking for. Both over the counter and prescription formulas are very similar and give complete nutrition. Ive used several different formulas. Some I can tolerate, others make me feel bloated and sick to my stomach. Usually patients who have issues with a formula can easily fix it by adding water and/or slowing down the delivery rate. Those easy fixes solve about 80% of all feeding tube formula problems. I use a pump that runs overnight while I sleep. If using a feeding pump (small square plastic medical device, often its Kangaroo, Kangaroo Joey or Covidien brand pump), the delivery rate is controllable.

I hope your sisters doctor will be able to help. Not all doctors know much about feeding tubes and all the formulas and problems patients can run into. If you dont find her medical team can adequately answer your concerns please dont hesitate to check in with us and we'll do our best to help you.

Good luck!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Feb 2017
Posts: 67
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My husband had a PEG tube. He was told to use VHC Boost which we ordered off of Amazon. It did not require a prescription. He could not do the hanging feeds at night because he was an aspiration risk. The dietitician told us exactly how many VHC cartons he had to PEG every day. Don't hesitate to ask for a more extensive consult with your dietician or other treatment team members. I really think you have to find what works for your sister. My husband is lactose intolerant and it required some work to find things that worked with the PEG. Our treatment team actually supports putting real food in the PEG, properly prepared, if it is important to the patient. My husband did not want to bother because he could not taste it anyway but our dietitician said to many patients it is a comfort to PEG real food. So take the lead from your sister and your treatment team but watch the calories every day. Intake matters in recovery.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
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During my first round of OC, I added a can or 2 of the VHC to my prescription formula (also ordered online from Amazon). The Boost VHC was twice the calories the formula was so it helped lessen what I needed daily. It used to be around $40 a case which included shipping.

There are now diabetic formulas out there too. Find whatever one of the professionals from your sisters medical team is best with the feeding tube info and formulas then ask them all your questions. Even Speech pathologists can be very knowledgeable about those kinds of things.

Good luck!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
I have exclusively used a feeding tube for over two years to receive my nutrition. I am very comfortable with it. I have many recipes that I blend in a blender to feed myself that is high calorie mixtures. I even blend up a week or two of Blends at once to store in the refrigerator or freezer to use for each meal. I would be glad to help you get started with blending your own food instead of the canned nutrition or to even use it along with real food that is blended. If you have any questions please do not hesitate to get in touch with me.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***


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