Feeding Tube Help!

DanceSkater said:

Don't Freak Out ...... It's Easy !!!

Hi Paula !!

Don't freak out.  Using a tube is VERY easy !!  You'll  do fine.

As with most things, everyone has different experiences and outcomes.  I'll  share mine.  I'm a 69 year old woman.  Retired.  I do walk a bit over 2 miles on most days.

My tube is not a MIC-KEY tube.  I wish it was.  Mine is a EndoVive peg tube.  It's my second one.  It extends about 8 or 9 inches out of the insertion site.

It only takes me about 12 minutes to get a "meal" and water through my tube.   I have never been nauseous nor have I ever used a pump.

I use  Isosource 1.5 with fiber for my meals.  It's a feeding tube "formula".   Many people make their own food.  I'm too lazy !!  Once I meet my insurance deductible, it's paid for by my insurance.   I order it from a health supplier and it's delivered to my house.

I don't sleep on my stomach.   I have never used a hot tube but I don't think you're supposed to with a tube.  I've heard different things about people swimming in pools, lakes, and oceans.  You're doctor will advise you.   I can't think of anything I don't do  that I did before but my life may not be as active as yours.  I can drive, garden, clean the house, etc.

I don't fly BUT I drove myself from Michigan to Florida and back a few months ago.   (1200 miles one-way)   I've actually done "feedings" and given myself water in parking lots and handicapped restrooms.  Me not flying has nothing to do with my tube.

If you have any questions, feel free to ask.

Jan

Thank you Jan for the info!  Very appreciated!

So I guess that you inject the Isosource 1.5 with a syringe.  12 minutes is not long but how many times a day do you have to do it?

Also you mention that your tube is not a MIC-KEY tube but that you wish it was.  Why is that?

How long have you had the tube?

I am 50 years old.  For the last 5 years my tongue has been paralysed because of the radiation.  I manage to "eat" food  (only certain types of thick liquids) but it has always been extremely difficult to do so.  It takes a lot of effort and time and it is very exhausting and difficult (with occasional aspiration problems).  From the beginning my Drs wanted me to have a feeding tube but I always refused.

This year my situation has gotten worst and I think that I will have no choice.  I will have to meet up with a Dr to talk about it.  However, I am very interested about getting info from people like you, people that actually live with a tube.  It will give me a good idea of what to expect.

Again thanks for sharing the info and yes I am freaking out!!!

Paula

debbiel0 said:

flying

I had no problem flying. I had a letter from my GP stating that I needed to bring my bottles of Vital Peptide with me in my carry on. . US TSA was a bit more inquisitive than the Canadian TSA but it was not an issue to bring 10 bottles with me on the plane. I use a pump and can tolerate 150 ml per hour now, started with only 80 ml per hr but worked my way up. On the flight I hooked my bag on the tray hook, put the pump on the floor and it worked just fine.

 

I am slowly eating more, but this has been my main calorie/nutrition source since Aug 2017.

Thank you Debbie.  That is good to know!

Couple of questions, if you don't mind:

- Why do you choose a pump instead of a syringe or can you alternate between both (or do you only use a pump)?

- How many hours per day do you use the pump?

- Is this the type of pump that can be used while sleeping?

Well I am getting good feedback.  Thanks again.

Paula

debbiel0 said:

 

 

I apparently have an over sensitive stomach, so I cannot syringe feed.  I have to pump on the slow side of normal to avoid nausea. This makes meal times a bit longer but I have always been a slow eater so my  family is use to it.

 

I am able to sleep while feeding but it is important to be on an angle and not to lay flat.

 

How long it takes to pump really varies depending on the speed you can tolerate and the volume of the feed. I use Vital Peptide 1.5 and it is 330 cal.  I started taking in 2000 cal a day ( 6 feeds) at a slow speed it took 16 hours a day. I am now doing 1200 cals a day (4feeds) at a faster speed and it takes just over 5 hours.

 

There is lots of different product that have varied calories. I am that worst case scenario with loads of food allergies so I am limited on what I can use. I have never tried making my own food to pump. I find the store bought ones convenient and I know I am getting a balanced meal. No muss no fuss.

 

 

 

From what I have read here, from others the syringe would be a lot faster and better. However I have not had any problems with my pump, it is just slower. I got used to my “tail” quickly. I do like to wear clothes with pockets so I can tuck it in when I go out, but other than that it has caused me no pain or awkwardness. I won’t be wearing a two piece bathing suit any time soon but at my age (62) that is probably a good thing LOL

 

I hope you find a product that works well for you quickly and you are comfortable.

 

 

 

Debbie

 

Thanks Debbie.  Good information.

I have to see what my options are.  Did not know that it took that long to feed with a pump!

I am  not looking forward to this but I know that I probably won't have a choice.  I will have to get used to it!!  Argh!

Take care,

Paula

debbiel0 said:

Didn't mean to scare you.

Didn't mean to scare you. Like I said, I am probably the worse case scenario out there. My feed is not that high in calories and my stomach is sensitive.

My pump goes as high as 400 ml/hr, so if I could go that fast, it would be about 30 min per meal. I have found a routine of one feed in the morning while reading the newspaper, one mid day that I use that time to catch up on emails and phone calls, and one in the evening while watching tv or reading. I will have a second feed in the evenings if I am still feeling hungry. I am very mobile with my pump. I have an IV pole on wheels to hang my feed bag and pump on, so I can move around the house and outside. It does take some planning if I need to go out, but that is not usually an issue as I can 'eat' while driving if I have to.

There are lots of options out there, I am sure you will find a solution that works with your life style.

 

D

You are right.  I will most likely adjust with time.  And no, you don't scare me.  It is the tube that scares me!!

Over 10 years ago, I had a tube while going through treatment.  It was a lousy tube, quite long and had to tape it to my body.  I hated that thing so much that I was afraid to touch it and never used it.

1 month after I ended treatments, they took it out. 

I also felt that the hospital did not provide enough assistance.  It was like: Ok you use the syringe, do this, and this, then that, now go and play with it!!

That is why now I want to be better informed, know my options and learn from people that use one.

Thank you Debbie!

Thank you fo sharing Occhiblu!

Yes I would like the Mic-key.  I am in Montreal so don't really know if anyone here does the Mic-key.  I have an appointment in late June so it will be discussed.

Good to know the time it takes for the feedings.  I like to do my Ensure shakes and soups.  It's so hard to gain weight on liquids though...  I wonder if any of you sometimes

just gets a really high calorie drink (like from Starbucks) and pours it down the tube (just for the extra calorioes).

My insurane is actually not bad.  They do cover a few things.  My nutrionist is also pretty good because she knows what is generally covered.

I will be thinking of you on June 1st.  Would like to eventually know how things are different for you with the Mic-key and how you are doing with it.

Paula

patricke said:

TUBE RUNNING

Hi Paula,

Yes, when I ran the marathon, actually, as I harken back to those days, I believe that it was actually the Miami half marathon, I did have to do a very slow walk when pouring liquids down my tube.   I ran, very slowly, the Disney Marathon, years before the beast war, and I still had to slow down to a walk to drink, although many runners are able to drink at a pretty fast pace.  I did indeed miss drinking, but I did not allow myself to dwell on what I couldn't do, but focused on what I could/can do, and just kept roll'in and mov'in forward.  I kept people amused as I poured, in addition to my liquid food, coffee, milk shakes (thin of course), beer, wine, spirits, ectera into my syringe funnel; my motto being:  "If it flows, it goes."  I'm sorry that you are going to have to have a tube, I know that getting a tube is one of the last things in the world that you want, which I totally get.  I encourage you to experience the feelings of, and grieve the loss of being able to eat and drink normally, which are normal, and it is healthy to express/share those feelings with the supportive folks in our lives. I also encourage you to continue with the activities that you enjoy which may require some problem solving at times in regard to tube security.  It took me a number of years to finally devise a way to surf safely with my tube.  So, I am truck'in on, and lov'in life.  I plan on heading to the NH White Mountains this summer, with my trusty NutriBullet Rx in hand, for a bunch of camping, and mountain trail hiking to the various peaks in the Mt. Washington and town of Gorham area.  I wish you all the best on your journey, and I send you copious quantities of positive energy.  Keep It Mov'in Forward!        

Patrick

Thank you for the support and all the positive energy!

I am in awe of all your tube accomplishments (if I can say that).  Nothings stands in you way and that is great! 

Hopefully, when I get the tube, I will have a more positive attitude. 

Enjoy the  hicking, trailing and camping.  You are one brave soul!

Thanks again and take good care,

Paula