How to wean off feeding tube - or when can I eat real food?
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Ok then. I’ve just gone 3 days, working on the 4th, with no tube feeding. Trying to get enough calories to warrant losing the tube: Smoothies, choking down a waffle, creamy soups supplemented with boost drinks. Now another “minor” problem - obviously not getting enough fiber. Constipation. Help!
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Try Miralax. Easy tO swallow mixed in water.
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Drink lots of water.
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Update:
I’m now 5 months, (or more specifically 23 weeks come Monday) post radiation. Today marks the end of 3 weeks without using the feeding tube! Yay me, but I don’t know if I can keep it up. Smoothie in the morning, coffee wit honey (for the calories). VHC Boost, maybe a regular boost later, or Soylent. Sometime a second smoothie in the afternoon. Mushroom or cream of asparagus soup with the mushrooms/asparagus strained out (sticks to my mouth/throat). I have a poached egg now and then and have been able to choke down a few avocados ( my taste has improved but they still taste off). But I still can’t seem to come up with healthy calories to meet my 1800 calorie target without just doubling up on some of this. And frankly some of these Boost type drinks leave me feeling nauseated. (Why do they have to make these things so sickeningly sweet?) I don’t have all of this every day but some combination and it really gets monotonous having the same things over and over. I’d stopped taking some meds that couldn’t be crushed during radiation but started taking them again a few weeks ago. Now it almost seems that it’s getting harder to swallow them without them getting stuck on the way down.
I had a prescheduled PCP appointment last week and my PA asked if my oncology “team” had a Speech therapist and a dietitian/nutritionist. I told her not as far as I knew. So she referred me to one of each… I had an appointment w/ a nutritionist for the end of next week but she canceled until I could get an OK (to come off the tube) from a speech therapist. I now have an appointment with a speech therapist next week Thursday. So, having made it three weeks without using the tube, I may just go ahead and add a Jevity or two a day until I see the speech therapist next week.
Doctors and people on this forum tell me I’m “doing fine, it’ll pass”. “Don’t rush it, it gets better” but at five months I’m getting frustrated and depressed…The tube is a nuisance, it’s in the way. It either itches or pulls… I want it gone and I want to eat…Maybe another update after I see the Speech therapist next week.
Larry
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Well, Larry sorry you still have the tube yet but it serves a great purpose when needed. We all felt like you do we wanted it gone sooner rather than later but the body's healing and recovery are not to be rushed and no matter how anxious we are this change will happen due to time and healing nothing else. You will get there but every person and case is different some were much longer than you for keeping the tube. So try to be patient just a little more. I have posted this set of weight gain recipes before and you may have seen them but I keep them in my archives for just such an occasion. One is from a member of the forum and one is off the net somewhere. I hope they help it is my 2 cents.
Take Care-God Bless-Russ
These Recipes and Tips Are From Debbiel0 on CSN H&N Section
- Coffee cream ( 18%) 1 cup 480 calories
- Coconut milk 1/3 cup 150 calories
- Greek style yogurt 1 cup 270 cal
- 2 tbsp Ground Flax seed 100 cal
- 3 tbsp Hemp Hearts 170 cal
- 1 tsp nut butter 100 cal
- 1 tsp honey 100 cal
- banana 80 cal.
I would mix all of the above into a shake for my husband. It makes about 3 - 3 1/2 cups and 1300 calories.. he would sip on it all day. Then we would make him soft eggs or oatmeal to top off the calories for the day. Jello or pudding and ice cream are also another easy foods to slide down.
Using coffee cream when making soups, or sauces, cooking oatmeal in it, using it for puddings. Is an easy way to boost calorie intake. The Hemp Hearts and ground Flax can be expensive. If you have access to Costco, they are reasonably priced there. ( at least in canada that is the way it is)
Use honey as much as you can in tea or coffee, or just in warm water.
I think the best advice I got from our nutritionist was to think outside the box and add cream or greek yogurt to what ever you can think of. Throw in a couple of tbsps of flax or hemp seeds to soups, your boost, hot cereal cooked in heavy cream. Mashed potatoes with heavy cream and lots of gooey gravy is always good too.
Hope some of these ideas help. Another well balanced change from boost is Soylent. I cant remember the calorie count, but it is a very good meal replacement.
I know I am kind of rambling... but hope some of these ideas help, or at least give you a variety. It is hard to get excited for a meal that is same as the last one!
Split pea soup and baked beans with honey are great for calories..
The flaxseed and hemo hearts dont change the taste all that much..just a way to sneak another 100 calories in. I had never ventured into that type of food either. My daughter in law is super healthy, and introduced me ( young ones, ya know!)
Almond butter or cashew butter is just another alternative to peanut butter. Change up the taste a bit.
I have a long list if food allergies, no dairy, no cheese, no chocolate, so finding calories was really tough for me. Example, geek yogurt can be up to 270 cal, my non dairy yogurt is 60 calories. So, when my husband was going thru his treatment it was actually fun for me to keep finding new things to make for him. Cheese is another good source of calories, melt it and add it to soup, potatoes.
Take care Russ. Maybe sit down and try to enjoy a slice of pumpkin pie with whipped cream!
And this one I picked up off the internet somewhere
Deb,
So sorry I’ve taken so long to get that receipe for your dad! I checked with our nurses and here it is:
1 box (3.4oz) of instant pudding
3/4 cup half & half cream
1/2 cup of water
1 cup of carnation evaporated milk (use canned not powdered etc.)
Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This receipe makes 4 servings. We use it to help individual’s we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories etc. Let us know how your dad is doing!
Karen
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Dang I read these posts from you wonderful Canadians and I'm just in shock. Ouch. I'm now two weeks after radiation and chemo and I have a nasal feeding tube installed. I put 6 Kale Farms organic 1.4 or 1.5 boxes of nutrition in my tube throughout the day. There is a large area on my throat wall on the left that is excruciating to pull that liquid past right now. I'm thinking another week and that area will be okay to test Cream of Wheat on. Before I lost my ability to consume liquid foods I was drinking one Kale Farms blended with a scoop of protein powder along with a couple of tablespoons of MCT oil. Each of those babies is 150 cals! My secret weapon. The rest of the day I sipped on a Strawberry Hulk from Smoothie king. (I know, not the healthiest choice but I needed the cals). I'm so looking forward to eggs. I'm predominantly vegetarian but I'll bend for some soft eggs if I can. I cannot believe the pitch to consume waffles and syrup. Wtf? Morbid obesity is killing humans off way too early these days. Eat healthier please.
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“I'm predominantly vegetarian but I'll bend for some soft eggs if I can. I cannot believe the pitch to consume waffles and syrup. Wtf? Morbid obesity is killing humans off way too early these days. Eat healthier please.” I agree 100%…but this crap is like a double whammy! Gotta get the calories but good like finding healthy food that will actually go down your throat… I quoted your last few lines but I could’ve written it myself. I swore off meat, poultry, dairy and eggs years ago but now all I can get down besides my soy milk, banana, strawberry flax smoothies, is eggs (poached only) and milk base supplement drinks. I can choke down waffles but yeah,, nasty! I can get avocados down if I take it slowly. But basically if it’s dry or remotely healthy…. Nope!
I’m off to an appointment with a speech therapist today to see if she can teach me how to swallow with this velcro in my throat.. Wish me luck, and same to you.
I hate this feeding tube!
Larry
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Some great information everyone, I am having surgery soon so this is all helpful for me. I have been preparing early, met with a nutritionist, my speech therapist and discussed some food prep options. I tried Boost and Ensure, not for me, to much sugar for me, my GI system didn't like it. Was suggested to look at products "Organics" and "FairLife" and also Nesquick. The Organics and FairLife can be shelf drinks and then refrigerate. I love Nesquick and they have high protein versions too. I have been told I can expect a feeding tube and that it will probably be a "Nasal" tube. Initially they would give me a formula with enough nutrients to keep me going.
The nutritionist emphasized to stay hydrated and not to lose more weight. I was on Nutrisystem for 8 months before this hit me. I went to a very soft diet over the last 30 days as things were hard to chew. I am stocking up on liquid drinks I like, puddings, etc. I'll see if Oatmeal and Cream of Wheat will be options later, great to know about the eggs, I like eggs (at least I do now, will see).
From what I hear in reading this, the important part is you are trying options, you are figuring out what works for you now. I am sure as your body continues to heal, you will be able to expand to other foods. Key, keep trying. Stay positive, for yourself and those around you.
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Wishing You The Best, it sounds like you are getting very well prepared. I hope you do not need the nasal tube very long they can be very annoying. If your care team expects this to be in for an extended period of time you may want to ask them about the possibility of a G-tube. I had the nasal tube for a bit the last time and when they found out I was possibly going to have one for a while they put in a G-tube. I was glad to be rid of it. Hope things go well for you-Take Care-God Bless-Russ
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Thank you Russ. I had a huge leap forward today. Actually guzzled down a chocolate flavored boost without the feeding tube. Of course the feeding tube is still installed but I drank past it. It did not hurt. Conversely, I did try to drink a very good organic citrus drink and it burned the s*** out of my throat. I was wary about drinking anything else but my wife said here just try this and see if it soothes it. It was no problem. I drank with a straw but it was 250 calories and then I followed it with 750 calories through my feeding tube. I'm stoked. I think one week from now this thing is going to be coming out and I will be moving forward. Thank you for all of your support. I'm going to try some cream of wheat probably this evening just to see
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Hello Larry449,
I've been interested in your situation because we have something in common--an area in the throat that will not allow food to pass.. I can gulp large amounts of thick smoothies. And I can swallow small pills. But I cannot swallow a gel capsule, let alone bits of solid food.They get stuck at the base of my tongue (where the radiation was aimed). I always end up coughing up anything solid that is bigger than a pencil eraser. It just will not go down. My ENT looked at the base of my tongue during a naso-oropharangyl endoscopy. He said the base of my tongue was smooth (no more tumor), but it was badly swollen. He said I would just have to be patient until the swelling went down. I am also still hoarse because of the inflammation and swelling. Like you, I miss solid foods terribly. I thought for sure I'd be eating solid foods by now, especially since I started doing tongue exercises before I started treatments. And I chose not to have a feeding tube. I did have to have IV fluids for dehydration during 3 of my 6 chemo treatments. But other than that I survived without the tube. It's been 3 months since my last radiation and chemo treatments. I am wondering if I will spend the rest of my life drinking my meals. I am praying that one day I'll read that YOU are finally able to eat solid foods again. That will give me hope. Best Wishes!
Boston Bunny
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Bunny,
I am 5 1/2 months past radiation, had no chemo and still can’t swallow anything thicker than a smoothie. I often wish I had opted out of the feeding tube but there were times when I probably would’ve been in a bind. There were some pills that I crushed for the tube and others I had to just stop taking for awhile. I am swallowing the most important pills I need now but they don’t go down easily, I worry about aspiration but so far, so good. My PCP Nurse referred me to a speech therapist who I saw last week and she (speech therapist) has me going to a Modified Barium Swallow Study this week Thursday, (4 days from now) to see whats going on and determine what to do next. In the mean time I’m doing about 70% oral, 30% tube because I just can’t find enough healthy food with enough calories to keep me going. I’ve lost just under 30 pounds since this started but I’m at a good weight now so I’d like to stay right where I am without losing any more.. but need enough healthy calories to maintain it. I’ll post again after my swallow test.
Larry
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Man I'm so sorry about all of you. Truly my heart goes out. I took a risk as my wife made a great chicken and vegetable soup. She initially gave me a cup of veggie broth and it tasted so good I decided that maybe if I mushed the carrots and the zucchini I could eat it. I dug a little further in the pot and fished out some chicken skin and then...some actual chicken. I ate it all! I'm so glad I prayed to God every one of my 33 radiation treatments to protect my healthy tissue and only kill the cancer. This is a miracle.
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Thank you for your reply. I would be interested to know what your swallow test shows.
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