Help regarding tube feeding

ali90h7
ali90h7 Member Posts: 19 Member
edited December 2023 in Head and Neck Cancer #1

Hello all,

The peg tube ligation was completed today and shortly before we were discharged from the hospital. Tomorrow I have an appointment with the nutritionist.But I ask you about the products that you used and got good results from.I ask you, should I just continue feeding with ready-made formulas, or can I make mixtures at home.I am looking for an answer from anyone who has experience regarding nutrition. Find resources that help me with good recipes and products

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Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,217 Member

    Hello, Ali, I would like to let you know that many on here used ready-made products like Boost and also their homemade recipes. Either or both is fine as long as it is tolerated by the patient and they get the necessary calories in. Ali, especially check in the Superthread at the top of the page there is lots of info in there under the header NUTRITION / HEALTHY EATING / LIQUID NUTRITION TIPS:

    Superthread link...

    https://csn.cancer.org/discussion/261072/superthread-read-only-contributed-by-sweetblood22#latest

    There are products out there to grind food up into a tube feed consistency and a couple come to mind I have seen on here, one is the Vitamix and the other is the Nutri-Bullet. I believe the Nutri-bullet was favored if you traveled because it was smaller. Search them both on the net, there is lots of info and buying opportunities and tons of recipes. I think people have turned almost anything into a tube feed with the right food grinder.

    I searched here CSN on the Nutribullet and there are lots of results check it out...


    Nutribullet...

    Vitamix...


    Here is a search I did on this site CSN for weight gain recipes check out the many results...


    Ali I hope this helps, if I think of anything else I will post it.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • goffrey
    goffrey Member Posts: 26 Member

    There are formulas like Kate's Farms or Boost or you can go the real food route like Real Food Blends or Functional Formula. When I had a feeding tube I felt the real food was easier on the digestive system. Tube feeding can cause very loose stools or diarrhea so banana chips which can be bought on Amazon will nip it in the bud quick. You see less of that using the real food tube feeding versus formula. If you do a Google search it will bring up the the Real Food blends website and some other ones. Also if you are using a health care company for your supplies they can send them to you.

  • Suez39
    Suez39 Member Posts: 162 Member

    Hi Geoffrey, I'm on a permanent FT, and so far the formula food has been very hard on my digestive system. I have loose stools and diarrhea like you said. For the banana chips can you put them in the blender, as I cant swallow anything by mouth? And what functional formula works the best? I've tried some that aren't nt agreeing with me.

  • goffrey
    goffrey Member Posts: 26 Member

    The banana flakes can go right in the tube feeding, no need to do anything to them and it will get rid of the loose stools in a day! Here is a link to them https://www.vitalitymedical.com/prebiotic-nana-flakes.html?gclid=Cj0KCQiA4NWrBhD-ARIsAFCKwWsyTDd4LU4a9uuR7GehG4aqxSTmmjnKCI6fGP5VHIWTkEVu1AKbjn8aAv4gEALw_wcB

    Real food blends was a good tube feeding food, they also have snacks you can tube feed. I did a mixture of this and a little of the Boost high calorie.

    Also functional formularies Liquid Hope is great for tube feeding and well tolerated, you can buy it off their website I bought mine off ebay cheaper but here is the link

    https://www.functionalformularies.com/?gad_source=1&gclid=Cj0KCQiA4NWrBhD-ARIsAFCKwWvP14Z_f6oIMQMVS1ofc5MO6cr8w0K2bt-KknRYAZLSwwXlCxWY-CAaAnWWEALw_wcB

  • Suez39
    Suez39 Member Posts: 162 Member
  • MGC
    MGC Member Posts: 72 Member

    If your going to be on a tube feeding for any length of time I highly suggest you make your own food. Formula's like Ensure and Kate Farms are great for supplementing and also I personally use Kate Farms for the liquid portion of my home made feeding blend. I am almost 5 years now unfortunately 100% tube fed and I make all my own food. Basically you eat what you would normally eat everyday. I load my Vitamix with Protien, Starch, Fruit and vegetables every day. Dont forget the starch or you will not have energy. My Vitamix keeps me alive. The Nutri Bullet is also excellent but smaller so i use it when traveling and It works well. Also the containers on the Bullet work for storage. I usually make a full blender in the vitamix and pour it into 2 of the bullet containers and throw em in the ice chest for short trips. Prior to using home foods I used formula but its just not what what you want for long term. As soon as I started on regular foods my stomach went back to normal as did my over all health and my weight went back up also. Real Foods Blend is also another option available pre- prepared option that I have used for convenience of traveling. Complete brand is another similar brand but I have yet to try that one.

    Hope this helps.

    Dealing with Hyper granulated skin around the G-tube is a pain.


    I have lots of experience and happy to share

    Mark

  • Suez39
    Suez39 Member Posts: 162 Member

    Hi Mark,

    For now I have to use liquid formulas, since my insurance pays for it. And I realize that using real foods would be much better for your body. I also cant put on weight and I'm down to only 108 pounds. I have a new dietician who put me on Iosource 1.5 with fiber that I just started. I looked up Liquid Hope which stated insurance would cover it. Have you ever tried that? I tried Kate Farms but my stomach did not tolerate that formula.

    I feel so stupid, cause I would not even know what setting to put on the blender on to make sure food is like a liquid so it wont block my g-tube. What foods to buy, what recipes I can use on a daily basis etc. Being on a permanent FT is life changing, and definitely not easy. I feel bad that you are in my shoes. I also have a permanent trach in my neck so I can breathe. So I have daily maintenance on that also. No fun! And I have to strain to speak. Most of the time I cant. I communicate by writing on paper.

    And granulation tissue is troublesome. And I agree, a big pain. Thank you very much for responding to my post. Didn't think thier was too many people on permanent tubes.

    Best wishes,

    Susan

  • MGC
    MGC Member Posts: 72 Member

    Hi Suzan, Glad i could be of a little help. Your right about not lots of support out there but there is. Sounds like you have many similar issues and some that don't have also. My voice has forever changed and is getting worse. I do have some radiation side effects that I see next to nobody else having all the while my expert team at Stanford claim 1 in 5 have the same results. I don't see them. Anyhow, moving on, As for the blender, there's only 1 setting and there is only 1 blender and that is the Vita Mix. ANY OTHER is a waste of money. I have used several over th eyears and had a Vita Mix long before i ever had Cancer. It can liquefy an avocado Pit. It doesn't need to be that thin for the G-tube either but liquid is a must and I use Kate farms which is paid for by insurance. Also like I said previously the same exact foods that you normally eat. Steak, baked potatoes, bacon and eggs, sandwiches of all sorts, chicken, fish, you name it. Lately I throw in a can of sardines for extra calories and hi protein quality fat as well. There is no end to what you can use an no constraints because of g-tube. The vitamix takes care of all of it. Let me tell you the difference is night and day. Formula for survival is fine but long term would be a slow death for me. I usually drink a kate farms or an insure enlive for a snack but its not always easy because drinking anything is very challenging. As for products I have only used one and that is Real Food Blends as the ingredients are hands down the best with zero added crap. Their shelf life is also incredible and no refrigeration needed. I keep a case or 2 in my closet always for unexpected travel. I even convinced TSA to allow them on an international flight recently. Also Real Foods Blends are covered by many insurance co's. Also the Nutri Bullet is just as powerful as the Vita mix but much smaller. I have one and my kids have them also so when i travel it helps. They work just as good but just smaller amounts at a time

    I try and make a full blender with vitamix and it will last usually a day and a half. then i can add if choose depending on what my wife and I are cooking for dinner that day. I really didn't gain much weight with real food but I stopped losing weight and that was great. Also my stomach went back to normal and my energy returned.

    Hope this helps

    I have tons more of info. Good Luck

    One other thing I forgot. The Oley Foundation does have some helpful info. https://oley.org/

    Its not the best website but there is some value there.

    Mark

  • ali90h7
    ali90h7 Member Posts: 19 Member

    Hello Susan, my father also had a tracheostomy for more than a year and we wanted to put a valve in order to speak, but we were surprised that there was a tumor under the left jaw near the esophagus, and here we turned to other options and began another journey of chemotherapy, then radiation, and his problems with edema and others, and now he is also taking chemotherapy with... Yesterday I took the second course.

    I also put him in a peg tube 10 days ago. He used it after chemotherapy because he suffers from vomiting, intolerance to food, and loss of taste.

    But on other days, he eats from his mouth normally. There is some difficulty in swallowing, but the nutritionist calculated the calories he eats from his mouth and said that they are sufficient for him.


    I clean the area around the tube on a daily basis. I just use normal saline to wipe with a small piece of gauze, then cut the piece of gauze from the middle and place it under the plastic piece of the tube. I also wash the tube with water once or twice daily to avoid blockages.

  • goffrey
    goffrey Member Posts: 26 Member

    Liquid Hope is awesome! I used it and the ingredients are great and it is easy for your body to digest.

  • Suez39
    Suez39 Member Posts: 162 Member

    Hi Mark, thank you for your feedback. My dietician put me on the Iosource formula a week ago which I'm not crazy about. I will mention the better formula like Real Foods Blends and Liquid hope, just until I get a handle on using a blender with regular food. You mentioned Stanford hospital. I read that is one of the best medical centers in California. Glad you should be getting good medical care there.

    Also, why did you say that long term formula would be a slow death for you? Is it because of the intolerance on your digestive system?

    You gave me great info which I will try to put to good use.

    Susan



  • Suez39
    Suez39 Member Posts: 162 Member

    Thx Goffrey! Going to mention it to my dietician. I had a friend who passed away from severe radiation after affects. She had base of the tongue and tonsil cancer. They blasted her with cisplatin and taxol. Long story short, I sent her few cartons of my formula which she said was no good. At the time it was the Osmolite 1.5. She was on a FT short time but used Orgain which is plant based with no added junk. She swore by it. Think it's on the same lines asxLiquid Hope and Natural foods blends.

    Susan

  • Suez39
    Suez39 Member Posts: 162 Member

    Hi Ali, I'm sorry to hear your dad had a tracheostomy tube also. But was good to hear he could at least eat by mouth which is a big plus. I had a friend who was only in her 40's who died from severe edema on her neck just under her trach. She told me she did not even wear her canulas for several months. I told her she should at least wear them at night and periodically during the day, as the canula traps the mucus which will never go away once you have a stoma opening. Her constant mucus drove her nuts, but I tried to help her with tips to try and regulate it. I met her and other close friends on this site. And she was struggling financially from being sick and not able to work anymore. Like they say cancer is the gift that keeps on giving. So i even sent her some of my medical supplies to help her. She lived in a rural area inIndiana and sounded like she had poor medical care. Was happy to help her as much as i could, was sad to hear of her passing. Im not a doctor, but wanted to try and save her. She was depressed about having a permanent trach, but tried to cheer her up since i have both trach and FT permanently. Does the trach bother your dad?

    As for the g-tube I have split gauze that I put on it. It has a cut already down the middle making it easy to put on. I too, clean the tube daily, they are expensive to replace. The hospital I go to, changed the extension tube, which the new one takes forever to complete a feeding cause the tip is different. So I buy my own ext tubes online, and use them for as long as I can.

    Thank you for reponding!

    Susan

  • MGC
    MGC Member Posts: 72 Member

    No that at all. I can tolerate the formula no problem but I just can not see living on all those chemicals VS real whole foods. There just is no comparison. Also, bowel movements are perfectly normal on blenderized foods. On formula long term while it didn't bother my stomach it bowel movements could be challenging.

    When you get to that place i would be happy to help on the blenderized foods and the Real Foods Blends have ZERO added ingredients. Just pure food and usually only 3 or 4 ingredients. Very clean.

  • goffrey
    goffrey Member Posts: 26 Member

    The only issue with Real Food Blends is it is not meet all dietary needs and it states that on their website and on the packaging so you have to add certain things to it. Liquid Hope on the other hand meets all dietary requirements and does not need to be supplemented. Both are great options but using just Real Food Blends with no supplements or formula would not meet all our dietary needs long term.

  • Suez39
    Suez39 Member Posts: 162 Member

    Thx for the clarification. Real food the best for your your nutrition. I agree with you. Does liquid Hope have zero added ingredients and clean also?

  • Suez39
    Suez39 Member Posts: 162 Member

    Thank you Goffrey. I was leaning more on Liquid Hope formula. I just transitioned to Iosource 1.5. So hopefully, my dietician will listen to me transitioning again. Then I might try to use a blender with real food.

  • goffrey
    goffrey Member Posts: 26 Member

    Liquid Hope is clean and all organic. It is a bit more expensive but it is complete nutrition.

  • Logan51
    Logan51 Member Posts: 464 Member

    Ali

    Been FT dependent over 4 years and have only put, daily, 4 Jevity 1.5s and 1 Boost VHC into me. Your body needs 30grams of fiber/day for regularity, so I've only been getting 24 but have done okay with my stools- but could be better if I just did the Jevity, which also has all the other things you need for a balanced diet. I thought about the blender route with this and that, but who knows the actual fiber content I'd be getting and if all the other vitamins and minerals? It's law that Medicare has to cover eternal feedings that are Dr. approved, and my Supplemental picks up the rest, so a no-brainer for me.

  • MGC
    MGC Member Posts: 72 Member

    OK so the formula. As mentioned by others Real food blends not perfect. But is whole foods and its not liquid. I rarely use it as I do mostly blenderized. I take a few Real Foods packets when i travels and mix with Kate farms. Also I take a couple containers of blenderized as well. You just cant beat blenderized food. The same exact food you would normally eat in a blender. No-body will convince me that a **** ton chemicals thats in formula will give you the same quality of life. I am 63 years young and super healthy luckily. I just cant swallow my own saliva let alone food. As mentioned above by some if Real foods blends is not 100% then use a supplement and use the blenderized.

    I use an Ensure Enlive or a Kate farms almost every day and sometimes two. But always one of them in the blenderized food to provide the needed liquid for food blender consistency. Coming up on 5 years now and wouldn't change for anything. I am 63 years young and originally got scc hbot stage 4 cancer in 2010 when i was 49.

    Didn't really think I would still be alive now. Long ago the medical field didn't have long term survival for our types so now that people have survived they are learning more and more but limited info for us long term survivors.

    Especially the long term radiation effects.


    Mark









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