Feeding tubes

[UnXmas]

I was wondering if anyone here has experiences of feeding tubes.

I've always had trouble maintaining a healthy weight, but before I've always been able to gain eventually. It would make me feel full and awful eating extra, but I could put up with it until my weight went up. But last year I lost a lot of weight, and despite trying to gain it back I've not been able to. I've used all my normal tricks, eating the highest calorie foods and ones that I can digest easier, eating snacks, supplements, etc., and I'm not doing any strenuous exercise.

Years ago a doctor talked with me about having a feeding tube to gain weight, but in the end I didn't need it then. I can't think what else to do now, and my weight is getting dangerously low. At every doctors appointment the doctor brings it up, but they haven't actually suggested what I can do about it.

Can you have feeding tubes at home? I don't want to have to stay in hospital. Are they really uncomfortable or painful?

And do they still make you feel full? Since the food would be going into my stomach, just via a tube instead (or as well as) the normal way, wouldn't I still have just as much trouble keeping it down and still feel too full?

 

[Price]

I've had them before, but only while I was really ill in hospital. Though I know some people do wear them outside of hospital too.

They're not painful at all once it's in, it's just awkward putting it in As far as comfort goes, it's about as comfortable as you'd expect a tube in your nose to be haha.

They don't make you feel full from what I can remember, though when I did mine it was done over a couple of hours, so that's probably why. I know people who do it overnight don't really feel it either.

If you feel like you can't gain any weight, go ahead I say. It's a good way to put weight on when you really just can't get the calories you need. In the end though unless you go on some sort of liquid feed all the time (something like modulen), it's still just a supplement, so eating is still important

 

[kiny]

I've had them. If you're dangerously underweight a better procedure is IV feeding though.

It is done in a hospital but is fare more effective at correcting nutritional deficiencies than tube feeding is. It is done through your neck and is painless.

 

[jlm]

I've had a feeding tube before. It was when I was really young (like 10-12 years aga) and I hated it! I had a tube in my nose that was changed weekly and the feeds were done at home. The formula I believe was called peptamin (spelling). I'm currently doing IV nutrition like Kiny mentioned but I do all of mine on my own at home, no hospitalization required. Guess it depends on what health programs are available in your town. I'm completely unable to maintain a decent weight level I'm still about 15 pounds under. But I've convince my doctors to leave my TPN alone since all of my jeans fit at the moment lol.

Forgot to mention, also had a peg tube for a few yars in my stomach. Hated that too lol.

 

[Farmwife]

My Grace has a n-g tube (through the nose). Hers stay in all the time (she's four).
I do know of many teenagers put them in at night and take out in the morning. So it can be done. What's nice you can hook it up at night and get "fed" while you sleep. Their's different formulas that will supply all your nutritional needs or supplement them.
If you wish to see a video of it being done let me know.

 

[UnXmas]

Thanks for all the replies.

Price - I'm such a wimp when it comes to medical procedures. I even have to lay down when having a blood sample taken because otherwise I faint! So I hate the idea of having it put in. It's good to know once it's in at least the worst part is over.

Kiny - thanks. I hadn't considered IV feeding. I don't know much about it at all, but sounds a bit more drastic. I'll bring that option up when I get to see the right doctor too.

jlm - it does sound like you've had a tough time with this! Sounds like you've found something that works better for you eventually.

Farmwife - it must be so difficult for a child that young. It would be tough having to deal with Crohn's at all at that age, let alone to the point where feeding tubes are needed. If you have a video to hand I'll take a look at although I did consider looking for images but thought it might be better I not see since I'm so squeamish.

 

[UnXmas]

I looked up IV feeding but it sounded like they only use this for extreme cases where food is not being digested at all or the digestive system needs a complete rest. I don't think I'm in that kind of situation - it's mostly just feeling incredibly full on small amounts of food, maybe a bit of malabsorbtion but when I had an endoscopy there wasn't a huge amount of inflammation. It also looks like IV (and possibly feeding tubes as well) are usually used short term?

 

[kiny]

You'd want to use them short term but you can use them for a few weeks without issues. I used IV feeding for several weeks when I first got my disease. It's very low complication and it's a reasonable way to gain weight. Any issues I had were related to the IV, it's placed in your neck most commonly and you need some help sometimes to make sure it sits right, after a while it will become a bit itchy too, but nothing major.

 

[lsgs]

I have never used a feeding tube as I refused it in hospital last year due to being a wuss, but they did tell me they can feed you overnight and also they can give you a very broken down formula so it's easy on your gut. Might be something to consider!

I was in a similar situation to you, couldn't put weight on because I couldn't eat enough and my weight was getting dangerously low and they still didn't want to give me IV feeding. Higher risk of complications, like if the site gets infected in the neck.

 

[Jmrogers4]

Here is the link to the young girl putting in her feeding tube. She makes it look quite easy and nothing graphic
http://www.youtube.com/watch?v=YJIFOCbPTjo
Are you using any of the Boost/Ensure supplements?

 

[lsgs]

Here is the link to the young girl putting in her feeding tube. She makes it look quite easy and nothing graphic
http://www.youtube.com/watch?v=YJIFOCbPTjo
Are you using any of the Boost/Ensure supplements?

Man that girl is an inspiration. Makes me feel like a total wuss for being so worried about my upcoming enteroclysis!!

Unxmas if you haven't tried it already you can get ensure plus which is 400kcal in quite a small bottle. The milkshake ones are nice. Sorry if you've already been down that road!

 

[UnXmas]

I have Enrich Plus which is a pretty standard supplement. I think they're around 200 calories each and I have a couple a day, more if I can't manage all my meals. My GP doesn't like me having them - she says I might get too reliant on them and that they'll discourage me from eating real food. I haven't dared discuss feeding tubes with her because I'm sure she'll be even more against that since it's even more artificial. On the other hand my surgeon is desperate for me to gain weight before I have (very minor) surgery by whatever means necessary. So I'm going to ask him about it and I also have an appointment with a dietician soon where I can ask about it too.

The girl in the video is great! To think I still have to lie down when I have blood taken because all procedures freak me out! Sometimes even just the idea of anything remotely invasive can make me feel faint. But I made it through the video ok.

 

[Johnnysmom]

They can also put in a port into your stomach. My friend's son was having problems with the NG tube because of recurrent sinus infections and they put one in for him. It is inserted in the hospital but then you live with it at home. He is gaining weight much better now. They only use in extreme cases but sounds like you may be there. (((((Hugs))))