Tube Feeding Guide


I thought it would be useful to start a page with advice on the various options for tube feeding. I know from my own experiences that it is not an easy adjustment to make for many many reasons but it does give back a little of what gastroparesis has taken from us. In most cases by the time you reach the point of looking at tube feeding it has become a matter of self preservation, you will do anything just to break the cycle of hospital admissions, dehydration and starvation. It is no longer a choice you have to make...its essential to maintain life. However, just because something is necessary doesn't mean that you have to be ok with it! It's perfectly normal to feel a sense of loss or anger and its more than ok to be scared. Its easy to look on the internet and see people living life quite happily with tube feeds and feel guilty for feeling low about it but believe me...everyone who has been in your position has their days where they just wish it would all go away! That doesn't mean you will always feel like that, you are stronger than you know...really you are!

One of the common questions I get are from people wanting to know if you still feel hungry when you have a feeding tube. For me, I find it varies every day. If I'm having a good day with my symptoms then YES I get hungry, my stomach is empty and my senses are crying out for me to fulfil the most basic survival instinct....and then I give in and it all changes. My senses say one thing but my body says the opposite...as soon as its in, it wants to come out. Then you spend the next few hours wishing you had just said NO...wishing you hadn't caved in to that sensory overload...so you learn your lesson...for a while, and then mother nature plays this cruel game again. I love food....but it doesn't love me... that is my point of acceptance. My tube allows me to be at home with my family, it allows me to get my meds when I need them and most of all it allows me to stay alive where otherwise I would not be here right now. For that I am grateful x

Please see the video below for guidance on setting up an enteral feed (artificial feeding into the digestive system). The tube featured in the demonstration is a naso-jejunal feeding tube but the principles are the same for all types of enteral feeding such as naso-gastric feeding (NG) PEG (percutaneous endoscopic gastrostomy) tubes, and PEJ (percutaneous endoscopic jejunostomy) tubes. The type of tube offered to you by your healthcare provider will depend on your range of symptoms and the length of time you will require it for.

Naso-Gastric feeding and Naso-Jejunal feeding tubes are usually used as a short term treatment option whereas the PEG and PEJ tubes are for long term use.

What's the difference?

Naso-gastric tubes and the long term PEG tubes feed directly into the stomach. They are used widely for patients who are unable to swallow and for anyone who is unable to eat but has an otherwise healthy stomach.

Naso-Jejunal and PEJ tubes feed nutrients into the jejunum (small intestine) therefore by-passing the role of the stomach. This is considered to be the best option for nutritional support for gastroparesis. It allows patients to receive reliable nutrition without the associated symptoms experienced when feeding into the stomach.

The products featured are from the UK and although the brand may be different the principles are the same wherever you are. My NHS trust uses Nutricia products, you can get more information on the products featured at: www.nutricia.co.uk or www.nutricia.com


9 comments:

  1. I have Ethos danlos syndrome type three and an NJ feeding tube. What size syringe do you think I should use to flush with if I have 20ml.
    Greenie
    xxx

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  2. Hello Greenie,

    Sorry to hear that you are in the same boat hunny. As for syringes, you can use any size that fits your tube, from 10ml to 60ml sizes but I find that even though it is more work using the small ones (because you can't flush in one go) they are better for when the tube blocks because you can get more pressure from the small ones. I use a 10ml for blocks and 60ml when I'm out because it's less faffy. I hope this helps a little! If you have any more questions please feel free to contact me again xxx

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  3. Thank you very much for replying please could you give me any strong tips on dealing with professionals and other services who don't understand my condition and keep harassing me. I would be very grateful.
    Greenie
    xxx

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  4. Hello again Greenie,

    So glad you asked this one because it is a very real problem for so many EDS/GP patients. It's kind of hard to answer without knowing exactly what troubles you are having with your health care providers but I will try my best for you! (You can always email me if you want to talk more privately helpmeminx@yahoo.co.uk).

    The best way to get the most from your healthcare provider is to be organised and well informed. I can see by the fact you have found my page that this is what you are doing already so that's great! Arm yourself with as much information as you can, but don't just read the stuff you find on google. You can access thousands of medical journals online for free (there is a link on the "Gastroparesis" page to a great free site) and you can try searching google scholar if you feel good enough to wade through the jargon that is lol.
    Patient forums are an excellent way of sharing information and experiences with with people who have experienced similar things to yourself...inspire.com is a really active one and the one I have found to be the most useful.
    Dealing with Dr's can be very difficult, especially if you feel intimidated by them. When you are ill you feel especially vulnerable and more likely to either forget what you want to say or in a hospital situation, let them get on with it. So ALWAYS take someone with you. Make sure that person is also well informed about your condition and what life is like for you. They will often hear things that you don't take in and can stand up for you when they see you backing down.
    If you don't have a good relationship with your consultant and you don't feel they are doing the right thing for you, go to your GP and ask to be referred to someone else...it is a good idea to do a little homework before you do this because they will most likely just send you to the next nearest hospital. It is hard to find motility or EDS specialists but one way is to go on the hospital website and read about the consultants they employ. If that doesn't help then try putting their names in google scholar and see if they have any published articles, usually the leading experts will have plenty of published material. I know that sounds like a lot of work...and it is, but but it can really pay off when you find a good consultant! (If you live in the US then you may have a much easier way of finding consultants...I don't know how it works over there).

    You know what...I'm going to blog this one, it's too long and too important, I will include it in "Dealing with Doctors"
    Thank you so much for raising the issue sweetie and once again, feel free to email me if you want more specific information x

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  5. Thank you so much for replying and caring with good information you are a very kind person. I would like to email you is this ok?
    Greenie

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  6. Of course you can! email me an time sweetie, I would love to chat xxx
    You can also friend on facebook if you use it? Search Minx Natalie. I'm also on twitter @helpmeminx

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  7. Very nice, job well done. Had a horrid last 10days. I let it kinda et on top of me and havnt eaten or drank much. Its a real bummer his GP. Got lots to catch up on here. Need to find your nasal feed video you did Natalie. Hope your good.xx.

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  8. I haven't been officially diagnosed with EDS (I have an appointment with a geneticist next week to set up the test) but almost all of my symptoms point in that direction. I recently dropped a ton of weight and am struggling with coming to terms with getting a PEG or PEJ within the next couple of weeks. The first part of your post made me feel so much better about the whole process. It is good to know I'm not the only one going through it. Thanks!

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  9. So what kind of testing was done to determine gastro problems? What natural things were done first? At what point did things change? Were blood tests done to figure out what foods to use before a g/j tube and after? Any and all info would be helpful.

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