Living life with a feeding tube.

Not sure what you are expecting with this post?

Been there, done it!

Robin
Hey, that is exactly what I am doing: LIVING LIFE with a permanent feeding tube. I failed 4 MBS tests despite hard studying and therapy including Vitastim,
There are lots of people in the same boat and it's not bad.
Lots of tips and tricks. Definitely ditch that dangling old tube and get a "button" (low profile gastronomy tube) preferably an AMT not a Mic-key (Kimberly Clark) after six weeks.
Plus consider a blenderized diet. Also I am free of the pump (never used one) and just syringe (bolus) everything all the time, including wine.
Post again and let us know how you are doing. Oh, and nice Trifecta of OCF alpha males for replies in your first post
(inside joke if only to me - ) Hope your tube is only temporary
Charm

I use a feeding tube still too. Probably will for life, but you never know. If you need any help with your feeding tube let us know, Im a pro with the feeding tube and formula stuff.

Christine,

I see I am not the only one who calls the canned food "formula". I'm sure it goes back to my 20 plus years running my daycare.

I call it formula cuz it smells so bad! I cant stand the smell of it. To me I think of baby formula whenever I get a whiff of it. YUCK! But I gotta use it anyway.

What kind do you use? My husband was using Isosource 1.5 Cal but after researching I found out it is synthetic, man-made food. Yuck!! Surprising it tastes fine, I could easily drink it, has a nice vanilla taste. Have been trying a new brand that actually is made from meat and vegetables but tastes gross and tastes like the metal can. He was taking 7 of the synthetic at 350 calories so now he needs 10 cans of the other to get the required nutrients.

Terrib
I call it formula also. I've been using Jevity 1.5 but my new medical supply company shipped me one case of IsoSource 1.5 to try out. Comparing the two online indicates that Jevity has more fiber: 22g/L than Iso 8g/L and better fiber: FOS rather than guar gum. But I may mix and match a little as the more different types of fiber the better.
Plus I have "real food" everynight, the same dinner as my wife makes for herself, that I throw into the Vitamix and put down the tube.
Charm

If odor is an issue, a dab of Vick's Vapo Rub on the nostrils will help mask it.

Everyone,
Thank you for all the helpful tips. Do any of you have problems with reflux or asperation? They want to put my tube in my small intestine. I just found that out.

Hi Charm,
What do you mean again by a button tube? Never heard of it. I shall do some research on that.
Thanks

Hi there again... to the people talking about formula's etc. Is it not possible to make healthy blended food on your own? I know it's a lot of prep work but ultimately from a health stand point you would be eating food that's prepared fresh by you and gives you more control... there is a website for tube feeders that offers nutritious options with no additives and chemicals.

As for you - Itsokay.... Mine was placed in my small intestine during treatment... the bad thing about that is you are then stuck on a formula feed I think... since - i was told by a dietician that you have to have a special type of feed for that as it has to be predigested? Of course there are probably many different brands, but I would ask. good luck.

Robin

Regular G or J tubes have a long tube dangling out the front.
Buttons or skin level devices do not.
I did not realize that you were talking about a J or Jejunum tube. Those tubes go into the small intestine.
J tubes require a special type of "button". Here is a link to one woman's J button story J button
Here is a link to pictures of the two most popular G or gastronomy"buttons". They go directly into the stomach Mickey vs AMT button

As you can see, the J button has a tube on the inside since the intestine does not have the storage of the stomach. The G button has no tube. Both use a balloon to hold it in.

There are also combo J and G tubes. J tubes almost always require very slow feed drip with a pump. You need a tube first to let the stoma heal properly before you can get a button
Charm

I have a J/G tube which has a port for the stomach and another one for my large intestine. I usually use the smaller one (stomach) for meds and the larger one for the feeding formula. The J/G tubes are great but they do wear out quickly. That is a huge disadvantage of them, having to go every 2 or 3 months for a new one. Its done on an outpatient basis where you are awake for the whole thing. It can be uncomfortable, but it is fast. I usually walk out of there with a brand new one about 25 minutes after I walk into the hospital.

Good luck!!!

I m not sure what kind of information you are looking for. I've had a tube for three years and will have it for the rest of my life. The last replacement was the newer button type which I like better than the "hanging tube" type. I use Jevity and other than coffee and chicken noodle soup broth thats about it. Most liquids (and I mean thin liquid) doesn't taste good. I just accepted the idea and have learned to live with it, I still go out with family and friends but just order coffee. I have traveled extensively with it. Some things in life just can't be changed, the sooner you accept the idea the better off you are. I have always taken the thought if thats the worse thats going to happen to me I pretty lucky.

I have not yet had the J tube put in. I am getting a second opinion by doing aonther Barium Swallow Test and Barium Swallow test through the tube I currently have to see if it is truly a swallowing problem versus a reflux problem that is causing my asperations. I did a little test last weekend eating a bit of food and drinking some liquids. I asperated that evening and had a stomach ache and was ill that night and the following day. I just want to check out all my options before I completely give myself up to having a feeding tube the rest of my life.
Robin