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#201200 01-30-2022 12:07 PM
Joined: Sep 2006
Posts: 1,338
"OCF Canuck"
Patient Advocate (1000+ posts)
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"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Sep 2006
Posts: 1,338
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


Donna,63, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!
Joined: Mar 2002
Posts: 4,826
Likes: 19
OCF Founder
Patient Advocate (old timer, 2000 posts)
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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,826
Likes: 19
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.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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