The Unkown World Of Tubes!
Feeding Tubes are an unknown world to most people, because of this factor when someone has a feeding tube they attract stares like a magnet. What people forget is that they're not staring at an alien, they are staring at a person who has feelings and is also having a bad time being very unwell. Its not our fault that for some reason our bodies don't work, we aren't choosing to have them, they have been placed by a medical professional and not by our choice just to get attention like some people think. Why should we have to have stares and unwanted attention just because people don't understand what they are? I get that they are something unknown and people are going to be curious but maybe if enough awareness was made people wouldn't need to gawp and be rude as they already know what it is.
So I thought I would explain how my feeding tube works as they may be hidden under clothing but people are still curious and ask "how do they work?", so here is my guide to my feeding tubes (they are very clever if I do say so myself).
As a lot of people will have noticed my tubes are no longer on my face and are now in my stomach. I have a gastrostomy (the one with the pink tubie pad) which goes through my abdominal wall into my stomach. I use this tube for drainage, because my stomach doesn't work at all it can't even process it's own bile and acid, it just collects and sits in my stomach, with out this tube I'm left with more pain and vomiting, but with this tube I attach a drainage bag on to the end and as soon as there is anything in my stomach it drains into my bag preventing vomiting. You may see the bag in the picture but I've hidden it because the contents can be a bit off putting. This tube is so helpful as it means I'm not vomiting and also means if I fancy a little drink or an ice pop it drains straight into my bag without making me too unwell. I manage to hide my bag most off the time by tucking it into my tights or jeans but can sometimes look lumpy under my clothes almost like a growth sometimes.
My other tube is known as a Jejunostomy, this tube again goes through my abdominal wall but goes into my small intestines. This tube I think is very clever and most definitely keeps me alive. Through this tube I am able to receive medications as well as my feed. As you can see in the picturere my tube has what is know as a Y piece on the end, meaning I can have medications through one port and my feed through the other. Here I am administering some medication, I take over 40 doses of medications a day ranging from Pain Relief, to vitamins and medication to help my immune system also life saving steroids due to not having a functioning adrenal gland. By my medication going into my small intestine we know that they absorb a little better than into my stomach and also give me more relief from my pain and nausea. The one problem with having medications through my tube means they have to be in liquid form so that they can go into syringes and be administered. Having the liquid medications makes it hard as you can't just sort out your tablets into an organiser once a week, you have to draw them up just before been given, this means that if I'm out of the house I have to carry syringes and medication bottles rather than just a few tablets.
Through this tube I also receive my feed. Now there are hundreds of different feeds, Dieticians work with consultants to determine which feed will be best. Most feeds come in bags already made up or they can come as a powder which is then made up when needed. My feed is known as an elemental feed meaning it is already part broken down so my bowel doesn't have to work harder than needed. This feed also only contains exactly what I need so it can just be absorbed straight meaning my bowel is working to hard to process it and doesn't have a lot waste. Because of my feed been an elemental powder we make up the correct amount every 24 hours and is then placed into bottles and left in the fridge in my bedroom. As my feed is an elemental feed it can't be left out of the fridge for more than 4 hours as it starts to go off, a bit like baby feed. This is something which is a bit faffy as it means my mum has to change it every 4 hours all through the night.
Every person who recieves feed has what is known as a feeding regime. This is basically a plan made by the dieticians to make sure people get the nutrition required. They decided what rate your pump is set at and for how many hours this is to be given over. For me I receive my feed over 24 hours meaning I am connected to my pump at all times by my purple wire.
In the picture above you can see the things which are needed to receive my feed. I have two different stands one which is mobile and can go in any bag and the other which I use at home over night. I set my feed up my connecting the bottle to a giving set which connects into my pump. I then prime the line with feed so that I don't get pumped full of air. Finally I programme my pump so that I receive the correct amount. I receive 100ml an hour over 24 hour which is essential to get the correct nutrition I
need and also the right fluid.
There are a lot more things than people think about that goes into having a feeding tube. Obviously there is the feeding and the medication but there's also the caring of the tube sites and the dressings that hold them in place. These tubes rub and leave pressure sores, they can get infected and they bleed without the proper care and aren't too pleasant at times. We have to wear dressing on these tubes to help and prevent any complications. I prefer to buy the cute tube pads that are pretty coloured and have cute patterns on just to try and add something more normal.
There is also the storage of all the supplies needed. As you can see in this picture
are all the supplies that are needed for 3 days/nights. This is one of the hardest things as we get a delivery every month and this means that we have had to turn our spare room into a storage room for all my medical supplies. Because my main feeding tube goes into my bowel i don't have any acid that can kill off any bugs meaning we have to have clean and sterile water, bottles and syringes. I only use each syringe and bottle once to prevent any bugs getting into my system making me more unwell, meaning we need a lot more supplies.
When people think of feeding tubes there are very different opinions and thoughts that people make. I've already said about how I feel with the stares and treatment people get when they have tube feeds but there is also a lot more that goes into them than people think. I'm not telling everyone this for pity I am sharing this story to help raise awareness for something that keeps lot's of us alive and at home out of hospital. Our tubes as much as we hate them are very important and something we are very thankful for. They aren't something which we choose to have and shouldn't be judged by. Everyone eats a "normal" meal and doesn't get judged and stared at and comments made so why should we? I understand they are something different but with enough awareness hopefully they can become something more normal.
All being said I am still very thankful for my tubes, that's why I have always just got on with everything even with the barriers I've had to over come as it is something which I'm dependent on. Hopefully people will have some more understanding and awareness from this post of us tubies and if people could share and help reach more people so we can spread the awareness for feeding tube awareness week this week, it will be much appreciated.
Evie x
