Tube Feeding Awareness Week

This week it’s Feeding Tube Awareness Week. There are lots of different ways people can be tube fed and all us tubies end up being tube fed for a variety of different reasons.

The picture below shows the two main types of feed: parenteral and enteral.

The main difference is parenteral enters the body through a vein (via a Picc line in the arm or a Hickman line in the chest) and enteral goes in through a feeding tube in either the nose, mouth or abdomen.

Enteral feeds are usually milk based and can either be to supplement a person’s diet or to replace it completely. Because they still have to be digested in the normal way they aren’t used when you need to bypass the gastrointestinal system completely. They are usually used when a person cannot eat enough calories to meet their nutritional needs. This may occur if you physically can’t eat, can’t eat safely or you need more calories than you’re able to eat. Some common reasons for needing enteral feeds include:

▪️a stroke, which may impair your ability to swallow

▪️cancer, which may cause fatigue, nausea and vomiting making it difficult to eat

▪️critical illness or injury

▪️failure to thrive in young babies and children

Parenteral feeds may be used to supplement normal eating or entreral feeding or, in the case of TPN, can be a person’s sole source of nutrition. Parenteral feeds go straight into a vein so completely bypass the person’s gastrointestinal system. This type of feed is often used when part of the gastrointestinal system is damaged, perhaps due to cancer, or inflamed, due to IBD (Inflammatory Bowel Disease).

Me personally, I’m completely reliant on TPN, parenteral feeding. Because my bowel isn’t working properly I’m pretty much unable to eat. Before I went onto TPN full time last year I really struggled to eat enough and I developed quite severe malnutrition. At my worst all I was able to tolerate was a packet of Quavers and it took me all day to eat them as I was in so much pain! Without TPN there is no way I would be able to live and being tube fed means that I don’t just survive, I’m able to thrive.

One of the hardest things I’ve found about being a Tubie is that until you can’t eat and drink you don’t realise how much the world revolves around it. Most socialising that is done involves food or drink and just because I’m not eating doesn’t mean I don’t have to cook for the rest of the family. Some tubies find this psychologically challenging and everyone has their own way of coping. From discussions on a Facebook group for TPN patients that I’m a member of some people have said they can’t cope with cooking and sitting down at the table when everyone else is eating. But I find that sitting round the table can be one of the few times we all get together in our house so I sit and join in with conversation and flit around making drinks for everyone and getting forgotten condiments etc. The one thing I find really, really hard is when Dominoes gets ordered. The last few times I’ve been unable to resist and had a slice only to be in bed in agony the next day so now I know it’s not worth it. The kids wanted Dominoes the other day but I asked them to choose a different takeaway so I wouldn’t be tempted.

Please remember that just because a person doesn’t look sick doesn’t mean they’re not. Clothes hide our tubes and our smiles hide our pain. Not every disability is visible.

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More than just a bag lady

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