I sm a new tubie - 3 days home from hospital and trying to learn

I ended up with an infectinfection from my PICC line - was in hodpital om IV amtibioantibiotics for 5 days now 14 days of pill form antibiotic

before surger for petmanpermanent feedfeeding tube, I was taking Benefibre daily as I was on a lsoft food diet and wad not getting en finrfibre

ok. My questquestions

1. Does anyone add Benefibre to flushing water or “free water”
2. Does any have a morning coffee in peg bag - say 2 cups coffee plus lactose free milk and let it drip? My rstionrationale is that it is all liquid and eould be mice to wake up and have a coffee
3. Does anyone use a probiotic if so which one and why?
4. How do you deal with cravings - cooking smell etc.
5. Dors anyone add say, some vodka to a bolid syringe I am not hooked on alcohol - just looking at moving to my “new normal”

pleade feel free to send as many answers as possible I thank you for youtyour assistance and time

donna b Aka. Pandora

I sent you a PM answering more than this. But here are my answers to your most specific questions

Your specific questions.

I have coffee in my tube every morning mixed with my breakfast. You can't taste it so throwing it all in together works fine. I have green tea in the afternoons.

If you are eating real food, getting backed up and needing benefiber isn't necessary. Part of the formula is prune juice, for this purpose, but it has lots of oats and other high fiber things in it. If you want to you can put benefiber in it, but you probably won't need to if you are getting fiber in the foods you eat.

Probiotics can be an additive if you want. I buy a greek yogurt that has lots of cultures in it, but there are some that have even larger flora content probiotics. Part of that industry is a rip off. The number of different strains of bacteria in a health gut are in the hundreds. The stuff they sell is lucky to have half a dozen, and how many of those are alive when you buy them is anyone's guess. Eating some fermented foods, which Ed does is where he gets his. So there are lots of ways of doing this. But If you are buying probiotic things that are not refrigerated, and you are not sure that in transit they were refrigerated, or stored properly, you might be sending $$$ for something that has no value to you.

We all miss eating, the tastes, the smells, the textures. Sooner or later you just have to come to acceptance. There is no trick. You are not going to get away from the smell of food, and years later I still have cravings. I just try to ignore them because I will never get to eat like that again or enjoy food like that. It's part of your history. The sooner you accept that the sooner you can get on to more important things in your life.

Alcohol isn't a pleasure anymore. YOU can put whatever you want into your tube. It's a waste of calories and getting drunk or high no longer interests me. I'd like to have a beer with friends. I might put one in my tube while with them, but its not enough to give me a buzz, and I no longer see the purpose in it. Not judging if you want to, go ahead in moderation. But the pleasure of it is gone.

I do miss certain foods..and always will.
My favourite ( before treatment) was curried shrimp, fish & chips ( I'm English) and spicy pizza.
People with little, or no understanding of oral cancer will simply suggest tossing those favourite meals into a blender, and drinking them..
Is it surprising that l find that thoroughly disgusting. ???

I would not find that disgusting. Remember we ear with our eyes and our nose first. Particularly that nose! I find eating real food by blending it is quite satisfying. Perhaps I am just delusional-but if so, I am good with that. Why not try one of your spicy dishes in the blender - then say how you felt?

Donna (aka Pandora99)

Thank you for your reply and opinion..
However, l believe that eye appeal is foremost when it comes to food..at least it is with me.
Happy 4th. !!!

I am Canadian so we had Canada Day on July 1st. Happy 4th to you. I would again suggest - try it - what’s the worst that can happen. Lots of upside here. I certainly find my nose and how the meal is described pre blending defines how I view my blended meal.

I had 68 years of eating whatever I wanted so I have no problem with getting my memory to help recreate a taste!

I will have a tube for the rest of my life so I am finding ways to make it fun for me. I do not envy others food - for which I am very grateful - so for me I need to make the best of it.

Donna (Pandora99)

I just saw this, I have been absent for a bit. I so squirt coffee in my PEG. And I blend my food in similar ways as Brian, not as complex though. But plenty of fruit vegies and meet, as well as olive oil and actually lots of protein power, I am very active. I do ocationly squirt some beer or vodka in, just a bit, not to ever get drunk or anything, maybe just a way to calm my nerves some days.
What I miss is very weird. Of course I miss my wife's great food. But when I am driving and go by an In and Out, or Carls JR, I just taste those great BURGETS!!!!!! and miss them so much

I’ve been doing the tube thing since last July, I put just about everything in the blender now, the smells are great.
I still do steak on the grill, I get some taste when I burp!
The speech therapist at my Dr’s office still thinks it’s funny that I put an Italian sub in there, I get a great “taste sensation” from the vinegars.
I can drink a little, still taste the chocolate in my oat milk, added banana and tasted it like crazy.
Right now I’m pushing fajitas into my tube.
I have a hands free syringe holder that I built and I pour 2 or 3 cups of coffee in every morning, use my chilled formula for creamer and to cool the coffee, the Lopez valve is adjusted to a comfortable “caffeine drip” setting. I do that while I “read the paper” on the iPad.

Trying so hard not to be discouraged by the “new normal”

I I know others that put pizzas and donuts and whatever in their blender. I totally get eating a prepared meal that the family is eating, as most of the time that has sone semblance of balanced nutrition. But honestly except for convenience, I don’t get not taking the misfortune we have been dealt, and not trying to turn it into a positive for our bodies to be the best we can be. Just like exercising or anything else, it’s important to be our healthiest selves. Throwing junk food into a blender to stay alive when there are better ideas….it’s just not me.

It took me very little effort to learn about optimum nutrition, and I actually like seeking out the best combination of things these days. It’s certainly not rocket science to find healthy fats which your body needs, the best protein sources, and optimum carbs as a starter. Then adding in micronutrients that really add those extra things that impact cognition, longevity and more. I’ve got a formula now and I blend two 64 oz Vitamix bowls of stuff, pour it off into 20oz paper cups from Amazon bought by the case, and I’m good for three or four days, covering them with cellophane and a rubber band and into the fridge. Right before using I stir in psyllium husks for fiber, add some extra liquid, coffee in the morning, vegetable or fruit juice later in the day, to thin things and bolus syringe it in. I eat the same thing every meal, keep weight on, and build lean body mass at 75 when combined with a couple days at the gym and walking everyday. I haven’t had a body like this since I got out of the military.

The other benefit is my eating requires no planning or thought any more. It’s in the fridge ready to go so I’m in a routine. I don’t feel thirsty ever, and seldom hungry. So I’ve learned that I have to be on a routine to get hydration and the same amount of calories and nutrients each day by the clock. Hydration is water, plus green tea mostly, but I’m counting cc’s in the syringes. It’s not like I get to have or care to have Mexican one day and Italian the next, or see any benefit to that. For sure I would never put this mixture in my mouth. Think canned sockeye salmon with skin and bones, with blueberries, whey protein powder and mixed vegetables and fresh spinach, frozen fruits, nuts of every variety, mostly walnuts and almonds, prunes, beets, garbanzo beans, black beans, hard oiled egg, avocados, cranberries, 99%cacao chocolate pieces that taste like dirt, mushrooms, olive oil, a batch of what ever vegetables are fresh and in season, steamed and stored into containers in the fridge ready to blend, and other things that would be disgusting together. But I can’t taste it. So I’m picking things not for any reason but that they are the best for my body and mind.

I’m four years into doing this. Same shopping list at Amazon for cases of wild caught sockeye salmon in water, and sardines in EV olive oil, and the grocery store for other canned and fresh staples.

Steve Jobs of Apple wore the same thing every day. It was comfortable, professional if casual, and he had a closet full of the same thing. When he got up showered and dressed every day, he spent zero time thinking about what he was going to wear. I live in t shirts jeans and sneakers. Occasionally a grey sweat shirt in the fall and winter over that. My days are uber busy. But I’m not wasting my time deciding what to put on or eat and drink. It’s a system. Mostly people don’t see me, I work online from a home office, go out and walk in town, and I share no meals with others except to sit as company with them. I curl up in front of the fire to read in the evenings so for pleasure, but mostly medical technical for OCF. I get what Steve Jobs was thinking. I was not like this most of my life. I was a major foodie, dressed professionally at big pharma companies, and enjoyed trying new wines and food. I’m not that guy anymore. I’m more driven, more healthy at the level I can be. I spend more time inside my head, thinking about improving the last chapter of my life. Doing the best I can for OCF and others. Finding some beauty and positive in each day no matter how small. The way I eat is part of a bigger idea. It’s not for every person. But enough people have asked, so there it is.

Just to clarify,
I’ve been eating clean and organic whenever possible for about 10 years now.
I grow most of my own kitchen herbs, onions,garlic, potatoes, tomatoes, lettuce and several other things in my.hydroponic garden.
We have chickens and ducks for eggs, also, fertilizer.
I grow my own turmeric and add fresh root to most everything I consume.
However, still enjoy my guilty pleasures.
Last nights Fajita meat was grass fed skirt steak, onion, garlic cloves and lettuce from garden, organic salsa and shredded cheese.

I’ve been adding cocoa butter and coconut oil to the organic coffee for sometime.
Whenever possible I make my own almond, cashew and oat milk.
Have started sprouting again to add to meals.

I absolutely do not want to start any arguments about what to put in for nutrition.

I am not happy being a tubie, but not really sad either, after about 2 years, it is the way I live! One thing I do know, I am healthier eating with my new diet. I eat fresh veggies, nuts and fruit every day, every meal. And I do add quality protein powder. I try to add chicken or tuna once a day. I also eat leftovers. I use a Vitamix at home and I just got a powerful "bullet" blender for trips. I do have an occasional beer. I will go to a beer place with friends and just squirt in in. I use to drink beer with friends, but I would aspirate and cough, tough to talk that way. I also have coffee with friends and squirt the coffee in, Really not bad at all. So in conclusion...as they say.... I am good being a tubie. I have "almost" adjusted to the new normal..a happy-health new steve!!!

I have your smoothie/meal recipe and I dare anyone to argue the ingredients or the results.


Now if only the world was run by muscle building Men and not us weak overweight types who have such strong memories of the foods they loved, that just smelling them in the blender is enough to satisfy.

I have found that - for me - I am definitely eating better quality ingredients than ever before but my brain still wants the sights and smells that give me satisfaction. For me, perhaps this is more of a “mind game” than a practical - “get to it process”. I love feeling that I am participating in what the family is eating. That makes me feel included.

I do add Oat Germ, Wheat Germ, Good protein powder and fibre to these “home style’ meals. I also daily as welI take my probiotics, acidophilus, NAC and organic multi vitamin.

I do track the nutritional value of meals I make (fitness pal) . I batch cook then freeze. My “indulgence” has turned out to be my no brain breakfast where I mix my formula with COFFEE and sit down to read the paper, do email or watch the news My time.

Someday Brian I will surprise you and make your whole recipe! (aside from chia seeds which have an adverse effect on me and my IBS). We are not doing Chia seeds again!!

I thank you all for a lively conversation. Obviously for me - I am mostly driven by the psychological aspects of tube feeding. I thank God for my very strong olfactory senses!!!

As to what people put in their diets, I do not care about others preferences as long as they are doing well on it and it works for them. I was just voicing a personal opinion, and not suggesting anyone behave like me, I can be a terrible example at many things. And pandora should know I’m in another incarnation of that recipe, and it looks like it’s more convoluted than ever. I just wish I could make bigger batches than 64 oz. I don’t have room for all the ingredients I’m finding interesting! But I can do enough so I only have to blend twice a week, it’s not my favorite past time. I do take over the refrigerator on blend day. But posters who have been around awhile know I’m not out to sell or convince anyone I have magic answers. I just try to help those that ask for ideas. Feel free to tell me to butt out, if it comes across otherwise. B

I very much respect your opinions. I know they are well thought out, researched and experimented with.

I was just throwing in a little “Men are from Mars Women are from the donut shop” bit of perspective.

And I would never tell you to butt out! I value you and all you have done far too much for that! I hope you know that.

Donna

I totally get that and was replying to everyone in general. We go back a lot of years together. You’ve always had my respect.

I am not all knowing, I’ve just been at this daily for a quarter of a century. And I get to interface regularly with some of the best and brightest from research, treatment, public policy and more. So while not super smart, my associates are. I get to share that learning with others, it is a privilege. B

OK, I am planning a trip away from my cozy home. Just 3 nights, actually going fishing. I bought as "bullet" blender from amazon and have been testing it. I am going to pack , nuts, EVOO, Protein Power and intend to hit a grocery store for bananas, milk, yogurt, spinach. It will be a real experiment. My last trips was before blending and I just brought formula. I am 100% into blending so this will be my real test for future travel. May even buy some beer... you cant fish with out beer!!!

Sounds fun. Except that I don’t like fishing! We have a cottage on Lake of the Woods (think Minnesota Land of 10,000 Lakes) My family - especially my daughter - is a super avid fisher person - as is her husband. They built an ice shack and drag it out onto the lake as early as possible. Precambrian Shield country. Rocks, trees, fish and some interesting wildlife. Lake is 135’ deep in places. Our cottage is on an island about 5 minutes from the landing.

Anyway, First things first. Take Guinness with you. Far less carbonation (you still have to pour it out and let it settle) but your gut will thank you. Take a back up if you wish. I have been known to have a drink of Rye and Water once every blue moon. Yes I know all the warnings about alcohol and cancer - but for me - I need to live life AND FEEL PART of what everyone else is doing. That will be the only way I won’t hate this tube! So everyone can save their lectures. I am not talking about drunk. I am talking about just enjoying one or two.

Now food. When I read your post my first thought was that your trip is too short to go through a bunch of hassle. and blending every meal on a fishing trip will be a hassle especially with a less powerful blender. A blocked tube from something your blender didn’t catch will ruin your trip. If you insist on blending everything make SURE you have a high quality strainer.

I batch blend and freeze. So I have lunch (oatmeal mixture) and suppers (my concoctions if chicken, veg, etc etc) in the freezer. Life would be so much simpler for you if you just could take your homemade frozen meals. But - is there a freezer there? And you need to take an extra days food to be safe. I have formula for breakfast. Maybe you want to blend that meal and use your frozen meals for later in the days while you hang around with your friends talking about the ones that got away. Do not forget the strainer!!!

Hi Pandora, this is like a "shake out cruise" I just want to see how blending on the road works. Before blending I would pack formula. One time , on a trip to Europe, I put 60 cartons of formula in a suitcase. HEAVY. So a goal on this trip is to see how blending on the road works. I actually travel often, and I am pretty confident this will be fun/interesting/educational !!!! The Bullet type blender I bought at Amazon is the most powerful one sold. Not nearly a vitamix, but OK. I have been using it at home to see what works and what doesn't. So far it is OK...Dates don't work. trying apples and spinach later today. But for a few days, I can stick with milk, protein powder, flax meal, EVOO, tuna, hard boiled eggs, yogurt.

One added advantage... Not screwing with TSA at the airport. I will bring no formula. Luckily, it is a short flight!!

Steve

Steve,
Enjoy your fishin’ trip!

I need to get it together and go fishin’ myself. My freezer is getting low.

Good luck with the blender in the wild.

Nothing like sausage and eggs over an open fire in a cast iron skillet, that’ll be easy to blend in the bullet, so will fried fillets later that day.

Yeah, I’m throwing everything in the VitaMix these days, and recovery is going well.

Have a good trip!

OK, went on my "shake down" tubie fishing trip. First of all, I was going to be in a remote place. So, i believe in redundancy. I put syringes and tubes in both of my luggage, one was being checked, one carry on. And I brought a spare mic-key just in case ( I actually carry it often, I put the button, 10cc syringe and a little lube in a small case, about the size of a pack of cigarettes) I also I ground my daily pills into small packets. Then, I made small bags of base food for each meal. Each bag contained, protein powder, powdered walnuts, and oatmeal. I had packets of tuna for my night time meal. And I had a bottle of olive oil, so each base meal was about 600 cal. My plan was to go to the store, buy ensure, bananas, spinach. And use the new bullet blender to make my new meals. I was staying in motels, so the bathrooms were my new "Blending area" . the hotels had free breakfast areas so I did get milk, hardboiled eggs and that all important coffee!! The plan was to blend two meals in the morning and take one of them to the fishing area. For that I also took water to clean the stuff and I also bought gator aid as I thought it would be great fluid for being active. And I wanted to maximize my caloric intake

so here are the lesson I learned
1. It is easier to blend at home, although the hotels had space, there was more time in clean up and keeping things in order. And the bullet blender is no Vitamix!!!!
2, I should have made all the meals at home first. One meal came out so thick I had to separate it and add water, really a minor problem, but pre test is good
3. Forget ensure, it is expensive, actually low calorie, and way too much sugar. So I will just use milk in the future
4. Bring liquid soap to clean the blender

This was only a 3 day trip. But I can see how it could easily be extended. I think I mentioned, on a trip to England last year, I put 60 boxes of formula in one suitcase...heavy!!!

So, I am now a full time blender! Much better for me and a little fun

Most of all the fishing was great...the catching was so-so

Steve

Sounds like you had a good time and learned a bit. You sound like you were very well prepared. I hear you about trying to wash everything in a hotel. Frustration. I finally took to washing my blender in the bath tub.

You did a lot of great things - pre-grinding your meds and taking liquids. I have a case made for my Vitamix - bought on Amazon and it works great. Eliminates those “play blenders”! For a short trip I take all my meals - frozen. Works well for me. I think about packing pre-tube and am amazed at how much stuff we have to take along - but it is a fact of life.

I took 72 tetra paks of formula to Mexico. In one 50 lb suitcase which the airline allowed up to check for free and the rest spread amongst other luggage. When in the UK I ordered formula from Amazon, and blended other meals. I learned the term “take away “ in the UK!

Glad you are home and made out well.

Donna



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