How to wean off feeding tube - or when can I eat real food?
I’m really tired of my feeding tube but I can’t seem to find enough food that I’m able to eat. Basically, (and I realize many of you have been here), if it’s not wet it’s not going down my throat!
Today marks four months (17weeks, 3days)since my last radiation treatment for BOT Cancer. My mouth was on fire with swelling and tongue ulcers for 8 weeks… swabbing my tongue several times a day with Lidocaine. Then it stopped hurting, suddenly, 8 weeks and 2 days the pain just stopped! Heavy mucus lingered on for a few more weeks, still builds up some afternoons/evenings. The big thing now is nearly constant dry mouth. Back of my throat feels like velcro so even foods I wouldn’t expect builds up after just a few attempted swallows. I can drink smoothies and creamy (no chunks) soups but as heathy as they may be, I don’t know if I could live on them without the peg. There’s also maybe a laziness factor on my part: as long as the tube’s there, even if I replace a feeding or two with smoothies, it’s easier to just make up the rest with Jevity and not worry about if I’m getting enough nutrition! And, honestly, sometimes the Jevity makes me nauseated… even tho it goes directly into my stomach, I get a nasty taste in my throat like… salty milk(?)
So, I did read somewhere in this forum that a lady just got tired of her peg tube and had it pulled out so she basically had to force herself to eat. Wish I had the nerve!
I don’t really know what I’m asking here, but damn! I really don’t like this tube! ( Side note: My cat doesn’t understand why she can’t lay on my chest like she used to so she lays across my neck until I start to choke and make her move!)
oh… my 3 month post radiation PET scan said the cancer is gone, so that’s good. Now I want to eat!
Larry….
Comments
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Wow -- this new software look is off-putting. Forgive me if I do something dumb.
What I had to do was thin-down cream of wheat and have a spoon of that with whatever else I was eating (if it was something like a bite of steak). I don't know why it worked but it helped me chew and swallow since it kind of "stuck to" the food instead of running off of it like water.
It took a long time for me to be able to clearly communicate that there is a difference between "moist" food and "wet" food.
I was pegless, so I had to do what I had to do and even then I don't think I had many bites of food for most of five months. (Ensure and Glucerna almost exclusively)
You might want to make your own version of that, but I don't think I would have thought of trying anything like that by myself.
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You’re right! There’s a difference between “wet” and “moist”. Trying to keep within my vegetarian diet I thought surely steamed broccoli would go down. The first bite or two, I kinda choked down but as you chew broccoli, those florets become smaller florets but they’re still florets and they start to build up on the velcro of my throat! Breaking the vegetarian diet, at the (implied) suggestion of another poster here, I think Motorcycleguy maybe, I tried scrambled eggs…. Nope! Tasted good but as I chewed (how much chewing do scrambled eggs need?) they got dry and, velcro! So I had a brain f*rt: Poached egg! Goes down great!! For health reasons, I’d given up eggs years ago but I guess if it’d help me get off the tube….. Ensure; I have yet to find an Ensure flavor that I can stand.. yeckk! Strawberry Boost isn’t too bad but I’ve read somewhere that it’s not recommended to have more than one per day?? Maybe that’s for people who are just supplementing their otherwise normal diet. Today I’ll be googling vegetable smoothies to print out and put my Christmas present Vitamix to use….
I don’t know, maybe I’m just overthinking this all.
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Larry check out Boost VHC (Very High Calorie) 530 calories per 8 ounce serving. During my last recovery, I was eating small meals and adding a boost each day as a supplement to gain the weight back I had lost after 36 days in the hospital and 10 days in a rehab hospital. I came home with a feeding tube but did not use it because I was able to eat enough. my swallowing was compromised but I managed to get enough in. Within a month or so I could get the feeding tube out but due to the onset of covid I had it another 5 or 6 months till I got it removed. This was my second feeding tube. You can drink more than one a day if you need more. I believe they only come in vanilla but you could add your own ingredients like choc syrup etc. I just drank them as they were and found the flavor fine for me, your mileage may vary. I was buying them from a vendor on eBay but there are many places to get them on the net and I believe they come in a case of 27. I was paying around $43 a case but I see now due to inflation they are up to about $48-$49 on eBay from a vendor. The reason for mainly buying online is I have not seen the VHC in stores only the regular Boost. I hope this may be a possible solution for you or at least a help. Take care-God Bless-Russ
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Larry here is something I saved off the forum that was posted by a lady but I can't remember her CSN handle. I don't know what you can use from the saved posting as per a vegetarian diet but you will have to pick and choose. She also has some encouraging words for people still transitioning back to regular eating. Take care-God Bless-Russ
Windmill Welcome
To the forum glad to have you. I too ended having a small nodule on my lung and liver but they are just being watched for now and I believe unless they start growing nothing will be done. My sister had one for years they were watching and it finally started increasing in size and I believe they used a cyberknife on it and it is gone. I would imagine your case is similar with a watch and see approach.
The 2 times I had substantial treatment for cancer I had a feeding tube and both times when it was finished it took a while to gain the weight back. I think now I am pushing to be a bit overweight but I found through my experience it is good to have a little reserve. To gain weight, for now, don't worry about any certain I recommend eating food that has a substantial amount of calories and or fat also. Like bacon and eggs, or sausage and eggs and or pancakes, waffles, etc. with lots of butter and syrup. Cheeses are good to add also such as cheese topping on a bowl of chili. Also after my last bout out of the hospital, I had lost a good bit of weight also and had a bit of trouble putting it back on so I purchased Boost VHC (Very High Calorie) and was drinking one in the morning with breakfast including trying to eat at least 3 meals a day of some size. This boost is 530 calories per 8 ounces serving and you can drink more than one a day till your weight picks up. This is a quick easy drink to pack in 530 calories. Usually, the Boost VHC is mostly available online unless you can find it locally mostly regular boost is in the stores. Here is a link showing the product made by Nestle https://www.nestlenutritionstore.com/boost-very-high-calorie.html I bought it by the case on eBay but you can buy it online in many places like Walmart online etc.
Also eat a bunch of snacks like candy, cupcakes, peanut butter crackers, etc. you can fit one in anytime your sittin around. Also, nuts like peanuts, cashews, almonds, etc. have a lot of calories and are even good for ya.
Also here is a weight gain recipe that 2 ladies shared that I found a long time ago related to cancer and gaining weight afterward--
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
And here is another communication shared recently with me by a lady on this forum concerning weight gain after cancer treatment and I am sure she would be glad if I would share it—It is from debbiel0
- 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!
I too and most folks on here had trouble swallowing and getting some foods down but it will come just be patient but for now eat what goes down easiest with a high calorie count. You may have to add liquid as you eat whatever you prefer. Try donuts and coffee. Eat in small bites and be patient. With my 2 cancers and 2 radiations to this day, I am thankful I can still eat but it is just a slower process. but in your case, it will probably come back completely. get with your speech therapist and do your swallowing exercises. I assume you have had contact with a speech therapist on this journey because most of us have it is standard procedure in this Head & Neck cancer game. if not contact your doc and get one assigned to you.
Lastly I highly recommend that you Do Not have your PEG removed until you can have a stable weight or have some slight gain in weight going on but it is your choice. I know after my first cancer they would not remove my PEG tube until I could maintain a stable weight for 2 weeks.
Be patient and Eat, Eat, Eat.
I hope some of this rambling helps you in some way-Wishing You The Best-Take Care-God Bless-Russ
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Tnx, Russ - all good information, some I’ve tried.. couple exceptions tho’, I used to put 3 tbsp of ground flax seeds in my morning smoothie before this all started, afterwards the flax was too rough so I stopped (although I haven’t tried it in my Vitamix yet, maybe that’ll smooth it out ) and.. who thought split pea soup would have that gravely texture? But yup, there it was. One other thing, speech therapist.. didn’t/don’t have one! My “team” was ENT sent me to RO who did the radiation and sent me to get the tube (which I got little to no instructions for) I wish I’d had time ti get into this forum beforehand, but it all happened kinda fast. I feel like Doctors here coulda done better but I’m in the home stretch now, so….
Anyway, thanx again for the suggestions.. all good
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Dont do rice, or lettuce.. think of food as what clumps or is hard to chew.
Rice is very "clumpable" it gets stuck real easy same with salad.
Fish is an easy eat, it flakes easy
What you have to do is practice a hard swallow. Thats like.. in a cartoon, where they go "GULP" when you swallow, really force your tongue to the roof of your mouth.
Ask for an appointment with a speech therapist, they do the swallow stuff also.
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Yes, Larry now that SuzJ brought it up if they haven't set you up with a speech therapist she is right it would be a good idea. I had one during my 2 major cancer events including my most recent. Since you are having some issues the speech therapist can prescribe swallowing exercises to fit your particular situation. They may have you do a swallow test also to see exactly what is happening during your swallow and it is good to have one as a baseline of where you are at anyway. When done it is a video of your swallow function in action. Below is a posting of an example of swallowing exercises that I received last time with personal info blacked out. A speech therapist can tell what specifics will help you in swallowing and concentrate on those areas. This will help you to get off the feeding tube and have it removed and get back to normal. I also posted the links to a couple of videos that I keep the links of handy. Wishing You The Best-Take Care-God Bless-Russ
Swallow test--
Also here is a video of our amazing swallow function step by step--
And here is a video on swallowing exercises for H&N cancer patients--
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Larry,
I remember the first few months out of treatment. For a while, it was just eggs - over easy. I was on a construction job up in Canada, and the waitresses would just ask if I wanted "the usual". For some reason, they were very easy to eat ... unless they were over-cooked (then I would choke on them).
After that, came chicken soup broth (had to skip the chicken .. too dry, then). Slowly, I kept trying new things, and sometimes they'd work.
Then the magical day came . I was still up in Canada, and I ordered a couple Molson's and chicken wings. It seemed unbelievable, to be eating real food again!
Keep trying different foods. It's tough ... I've been there. But, I don't know if I've ever seen anyone on here who didn't struggle. You'll get it back .. keep trying!
Curt
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Curt
Yes.. the eggs. I’d sworn of meat, poultry, eggs and dairy years ago. (Long story - but “health reasons”) So after mentioning I’d read your earlier comments about eating scrambled eggs, my daughter suggested “JUST Egg”, a plant based egg substitute. Tried it. Scrambles like egg, looks/smells like egg.. taste like egg. NOPE, can’t swallow it! What the heck, I’ll try real eggs. Scrambled. I’d never thought about eggs drying out as I chewed, but… maybe cooked too hard?. Then I tried poached. Bingo! That’s when I had the realization “If it’s not wet, it’s not going down my throat”. I’ve been trying different smoothies. Some work. Some, not so much. I just need to figure out what I can eat (enough of) to get rid of this tube!
To get my prescribed 5 Jevitys per day, I’ve developed the habit of “feeding” about every 2 1/2 hours. A habit I need to break, but here’s yesterday:
Morning- soymilk, banana, strawberry, blueberry smoothie. Noon- a 400 calorie Soylent (nasty, like Ensure, Boost, et al). 3PM, give or take - Broke down and did a Tube feed. Later on - I tried a “Carrot” smoothie”, basically a fruit smoothie with a carrot. It went down but even tho the carrot was well blended it still had that wet sand texture in my throat! Around nine PM I had a cup of “Imagine” brand Tomato Basil Creamy soup. I probably could have done without the tube feed but that’s only one day… I’ve lost between 20 and 30 pounds since this started. I’m actually at a good weight right now but I don’t want to loose any more… except maybe the weight of the g-tube!!
I think the first time I posted here, I was about 4 weeks out of radiation. Then it was all about the sore mouth, which went on for 8 weeks before it started to calm down. Now I’m over 4 months out of radiation and while my mouth doesn’t hurt, the dry mouth is still there and I have what I’ve dubbed “velcro throat” which seems to catch everything that has any kind of texture or isn’t wet.. I’m trying to stay positive but it’s not easy.. but your comments are encouraging.
Larry
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Canada! Two questions, one not related. First, I assume you’re a US citizen?? I had a big hassle in 1986 when my boss sent me to work in Canada - without a work permit and without telling me I needed one!!
Second, You were still working while you couldn’t eat? (Please tell me you didn’t still have a tube!!) I at least have the advantage of being retired during this.. I can’t imagine!
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Larry,
I am a U.S. Citizen. I work for an electrical construction company. I rushed it, heading up to that project. I was still coming home for a couple of follow-up chemo sessions. But, I wanted to "get off the bench", I guess.
I did have feeding tube, but never used it. I got rid of it (probably too early). I had no idea, follow up 5FU was going to be worse than the chemo/radiation I had before that...
Anyway, it was up in Canada, that I ate eggs two times a day and it took 3-4 months, before the Molson/Chicken Wing incident was able to occur. In the meantime, I dropped another 30 pounds!
All I'm saying, is that it does take time, and the only answer is to keep trying different things, until you find something that works. Something soft, well lubed (like eggs) just happened to keep me going.
I wish you the best of luck, buddy!
MG
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Curt, I gotta say you’ve got more chutzpah than I do!
I never had chemo, “only” radiation. (Maybe because of treatment for another condition the MO decided the side effects of chemo outweighed the benefit I’d get from it)
Again, Thanx for the encouragement
Larry
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Larry,
Somehow, you strike me as a guy, stock full of chutzpah!
The treatment hits all of us differently. One person's radiation may be worse than another's chemo.
In the end, it doesn't matter. What matters is: we're all survivors, and we all help each other down the road of life!
I'll be looking forward to hearing that you've found something that works for you now - and then when you eat that food that seems so impossible to you now (whether that's Molson and chicken wings ... or something different)!
Hang tough!
Curt
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Are we alLowed to ask about the formula products for a G Tube/ feeding tube? (by product name?) I’m just getting a G tube installed today and I want to order 1 or 2 proDucts to start that are easy on the stomach because I have reflu’x.
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Ronnie,
Well, I'm not a Doctor, but my Oncologist recommended Boost or Ensure. I would suggest that you check with your medical team (which may happen to have a Nutritional Professional on it.
In my case, my girlfriend made smoothies for me, and I was able to chug them. So, if you have a "Nutritionist" in your corner, somewhere - you may want to check into that route, too.
I hope you find something that works for you, and that you handle treatment, reasonably well.
But, most importantly, I wish you the best possible outcome!
Curt
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Yes. My medical team has recommended. I was just looking for additional info on what people’s “preferences “ and unique experiences were for the many G Tube nutrition formulas . I’m also more into organic options like Kate Farms. Thank you.
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My husband has many issues with eating, not only from the cancer, but also Sjogrens syndrome. He has very little saliva & no teeth on lower right. He had a PEG tube for many months. So glad to get rid of it. My mini- food processor and large blender have become my best friends. He eats nearly anything if it is soft enough. I use a lot of canned gravy to moisten his food. I also add butter or oat milk to make it easier to swallow. Using a small plate and using a spoon instead of a fork also helps. He basically eats what I do, only ground up - meat, starch, and several veggies at dinner. Breakfast is cream of wheat or oatmeal mixed with peanut butter, honey and oat milk topped off with a soft cooked egg, juice and coffee. There are many good soups and shakes in the refrigerated section of the grocery. Panera lobster bisque is a favorite for lunch. Bolton Farms & Naked put out great protein shakes. Night-time is topped off with a homemade shake that is usually made with frozen yogurt, whey, fruit, peanut butter and whatever else sounds good. Very high calorie and delicious. Hope this helps. Getting that feeding tube out will make you feel better.
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Just had the G tube put in because I gave a bot ulceration and have trouble swallowing. It will be a few weeks before it can come out but thanks for your post.
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