Feeding Tube Disadvantages?

Hi everyone, before agreeing to having a feeding tube fitted for the rest of my life due to chronic dysphalgia I would appreciate any comments on the possible disadvantages? I'm aware of the possible risk of infection but just wanted to know if there's anything else I should be made aware of?

Many thanks

Xene

10 Replies

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  • There is the loss of quality of life in the process of eating in all sorts of social and other occasions, but I imagine that you have been facing that sort of thing already.

    The feeding tube will give you basic nutrition but won't make you chubby, but you may well have been the weight loss issue as well.

    You will probably need to take care that your mouth and throat stays hydrated and your saliva glands well lubricated.

    I am not sure whether the upper part of the digestive system will or will not gradually deteriorate with lack of use; or whether there is a chance that with a complete rest for a period, there may be a chance of regaining some function. I think it would all depend on the precise details of your own case.

    I know some people who are adamantly opposed to the idea of a permanent feeding tube on the basis that it makes them feel cut off from the pleasures of life such as eating through the mouth, and they would rather put up with all the other pains and hassles, but it is an individual thing. And a balance between feeling better because you have better nutrition delivered into your system - as against the disadvantages.

    There is a mental element that you have to come to terms with.

    I suppose the questions to the doctor might include could it be reversed in your case, and an assessment of how realistic a hope this might be. A feeding tube is not something that is resorted to unless it is necessary though, so you may well know the answer to that already.

    There are quite a lot of people who do go through life with these kinds of complications (eg stoma bags) and manage quite OK.

  • I note you say feeding tube for the rest of your life, i assume your having the tube inserted directly by an op. Im sorry but rather than answer, may i ask you a question, that being have you had a tube inserted via the nose as tomorrow im seeing dietition and as ive had no weight gain im expecting to be told this is the way i shall be going as ive been closely monitored for a while and was told this would be the outcome if gain wasnt successfull which it hasnt been. If youve had nasal tube how did you find/cope with it please.

  • Hi margaretd, obviously not knowing your physical problems with swallowing it's hard to comment but 30 years ago I had a nasal gastric tube fitted after a massive operation and losing several cranial nerves. Half of my face throat etc. is paralysed. The nsg was removed and I was taught how to swallow liquids while still in hospital. When I left I was basically left to my own devices and had to teach myself how to swallow solids!

    I have constantly had problems when eating, coughing, choking type fits, regurgitating food, fluids running down my nose at times. Sadly it has got progressively worse over the years and there are very few foods I can now swallow.

    The dietician put me on supplement milk shakes last year which have helped me to gain weight but now she's pushing for me to have a feeding tube inserted into my stomach which will be for life as there is no possibility of the problem improving! She's also going on about the possibility of me aspirating when I try to swallow food and fluids!

    If I could not swallow anything which may happen one day then I'd have no choice in getting the tube fitted but obviously I'm scared about all the possible risks and don't want to rush into anything! That's why I came on here hoping that those who have experienced it short or long term could let me know how they got or get on with it.

    May I ask you, did the supplement drinks not help you? I presume this is why they want to fit you with a feeding tube.

    Best wishes

    Xene

  • thank you for responding, the only reason i may have to have the tube is im unable to gain or mentain weight. Ive tried all the products the dietition has available but im not able to tolorate any of them except for Vital 1.5kcal but im finding it harder and harder to take without wretching. Im seven years post op and have found food a problem from day one, i hope someone can help you with your questions and i wish you all the best for the future.

  • Hi Margaret, I hope all went well with your dietician appointment and they'll provide you with the treatment that's best for you. Take care.

    Xene

  • Thank you Xene, much to my surprise i had put 3.5lb on!....she is allowing me to carry on myself untill next months appointment when it will be assesed again. Take care.

  • Hi Xene,

    I don't think you have an option it needs to be fitted, I have had a feed pipe since last November and if it had not been fitted I would have carried on losing weight at a very quick rate.

    Needless to say it has bottomed out and my weight is on the up as I have gained over 5kgs in 3 months and I feel much better in myself.

    Just make sure you keep the wounds open as I got myself a little infection by covering the food pipe with a dressing ( Bad move) I would also suggest as an extra precaution you salt solution wash the stitches on a daily basis if possible.

    Quality of life, yours has probably changed already and it is about how you adapt to the feed pipe mine goes on late in the evening and I feed overnight while I am asleep so that I can have the day free of tubes which does give you a bit of a boost.

    When I started on the feed I was sweating like a dog every night having to change my pj's or t-shirt that I had on and also the duvet was soaked so had to be turned so I could get back to sleep. They started me on 93ml per hour and as I say this was too much so reduced to 83ml and it worked a treat it takes an hour longer to feed but well worth it.

    You will probably only have 4 hours a day of the feed but if they want you to have 2000 cals that is probably your limit but those 4 hours are just pure freedom so make the most of it.

    Tam

  • Hi Tam, thank you for your response, it contained the information that I was searching for. I presume the dietician will go into full details about it if I decide to agree to having it fitted! I was presuming that they'd fit the tube and then I'd be injecting the feed into the tube via some sort of large syringe! Not that it would matter if I did. I probably think like this as 30 years ago when I temporarily had a nasal gastric tube fitted in hospital after a major op the nurse came along with a funnel type thing and poured the whole feed directly into my stomach in a few minutes!

    I will certainly take on board all you have said, I guess it's just all the possible risks that may or may not come with the tube that scare me! If I didn't have a choice it would be easy! I'll keep a close eye on my weight and maybe when I can't maintain it I'll get it done. I've been at risk of aspiration for the past 30 years although no one bothered to tell me and apparently there's still a risk of it with the tube!

    Best wishes

    Xene

  • Hi Xene,

    Things have progressed since those funnel days.lol Check out abbott.co.uk and go to adult and look at jevity this is one of the many products they do and also look at free go which will show you the pump that drives the feed into the tube while you are asleep. There is also a stand that comes with it but I suppose hard to explain in words without anything visual.

    If you call 01628 644398 and ask if you can have some literature on their jeju and associated products or ask if it would be possible for an Abbott nurse to visit you and explain in more detail.

    Tam

  • Hi Tam, Many thanks for your further information. I tell you I'm living in the Dark Ages lol. I found the website very informative but I guess I'll get whatever the NHS provides me with!

    At least now I'm better informed and as it's a lifelong decision along with another one I have to make I don't think I'll be rushing into anything right now! Thank you for all your help and I wish you well.

    Xene

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