I've seen several blogs and posts this week that have focused on and made some excellent points about various aspects of feeding tubes and living on artificial nutrition. Technically, enteral formulas aren't 'artificial' - they're made up of all the nutrients taken from real edible solution and put into various forms to suit the medical/nutritional needs of the individual consuming it. True artificial nutrition is TPN (Total Parenteral Nutrition) which bypasses the digestive tract completely and is delivered directly into the vein either through a canula or PICC (peripherally inserted central catheter) line if it is short term or through one of the many different types of central line if it is needed long term.
I am an enteral feeder - this means that my feed goes into a part of my digestive tract. My tube is a transgastric jejunal tube, or a PEGJ. It enters my body through a stoma (an open tract from the outside of my body to an internal organ) in my stomach. My main tube contains two smaller tubes. One leaves the main tube in my stomach and is used to drain my stomach of gastric build up or vent excess air that I can't get rid of. The other one continues on to the end of the main tube which goes through my stomach, through my duodenum (the first part of the small bowel) and into my jejunum (the second part of my small bowel). I've been with a broken tube for over a month and it has been hell! I usually feed over 24 hours and as my tube has been leaking, it's meant that I haven't been able to feed very much and haven't been able to take my feed out the house with me. I lost a lot of weight and I felt so dehydrated. I was ready to drop the day before it was fixed, but on Monday (the start of Feeding Tube Awareness Week!) it was finally replaced with a new tube! Here is my lovely new tube!
The tube that looks a yellow colour, plugged into the top leads to my jejunumm (that yellow colour is my feed running through it!) and the clear tube on the side, hooked up to the syringe is my gastric tube that I use to vent and drain.
Probably because of my Ehlers Danlos Syndrome (which affects collagen and the way the body holds itself together), the nerves and muscles in my digestive system do not respond and contract as they should. They produce sluggish and uncoordinated movements meaning that food cannot make it's way through my digestive system as it does in a healthy digestive system. This means that food sits inside my system, moves in the wrong direction and causes spasms or hold ups. This causes a lot of sickness and pain and can often leave me very dehydrated and undernourished. My feeding tube does a few things to help tackle these problems. Firstly, it bypasses the first section of my gut meaning that less of my gut has to handle the digestion. If I'm not putting food into the first part of my stomach and bowel then it is more likely to stay down and means that I don't vomit it or reflux it or drain it out my gastric tube. Secondly, my pump pushes formula through at a very slow and constant rate meaning that my gut doesn't have too much to deal with at once. Thirdly my gastric port drains and vents my stomach to stop me from being sick. But fourth and most importantly, it delivers the nutrition and hydration that I need to keep my body alive. Whilst it might seem and look a little bit scary, isn't that an incredible thing?
There are many different types of formula and it depends on the needs of the individual which one is used in which case. It's often a case of trial and error to find the ones that agree with you best. I think I've been through pretty much every feed even with separate feed providers to try and find one that works the best. The feed that I am on right now is called Vital 1.5 and looks like this:
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| Mine comes in the larger bottle, the smaller one is the drinkable version - yum! |
I've been tube feeding for 4 and a half years and had various different types of tube. My first tube was a nasograstric (NG) tube which went up my nose, down my throat, through my oesophagus and into my stomach. Then when that one made me poorly, I moved onto a nasojejunal (NJ) tube which went the same way as my NG tube but carried on into my jejunum in my small bowel. From the outside, both these tubes look pretty much the same! Here I am with my NG back in 2011:
These tubes are usually only used short term, either because a patient only needs short term nutritional therapy (for example, if they are going through chemotherapy or another treatment that suppresses the appetite), whilst someone waits to have a surgical tube fitted or even just to see if nutritional therapy works for them before committing to a surgical hole in their abdomen. Some people do have nasal tubes long term though because that works well/best for them or because surgery is too risky for them. Some people with NG tubes (into the stomach) do overnight or bolus feeds (large quick feeds) and put a tube in for the feed and then take it straight out afterwards. They do this on a daily basis so that they don't always have to have a tube hanging out their nose all the time. This isn't possible with NJ tubes (into the bowel) though as these need to be placed through xray or endoscopy (a 'remote control' guided camera tool down the throat and oesophagus).
I had a lot of problems with my nasal tubes as they gave me regular blisters in my throat which was the most painful thing ever. In the end, they were getting pulled and replaced on a weekly basis which was really disruptive whilst I was in the last year of my A-Levels!
My next tube was a PEG which went directly into my stomach through a stoma in my abdominal wall. My first tube was enormous but the best one I've ever had in terms of practicality. This was just for whilst the stoma healed and then it was replaced with a button style tube which is much smaller and discrete. With this tube, I fed over 10-12 hours overnight and for a time this worked really well for me. This meant that during the day I wasn't connected to anything and nobody could see my tube because it was hidden beneath my clothes.
The PEG tube started giving me reflux and making me sick through the night which meant that I had to start feeding in the day again. This wasn't really convenient because it was still giving me a degree of reflux and sickness, just to a lesser extent because I wasn't led down. So in July 2013, my PEG was replaced with a PEGJ, which is what I have now! This is the tube that I discussed earlier in the post which has two tubes inside it - one which exits into my stomach and one which exits into my small bowel. With this tube I went back to feeding overnight and for a time this worked really well. I gained a really healthy amount of weight and reached my highest BMI of 22! However in late 2014 I started to get really poorly again and I really struggled tolerating my feeds. I was getting a lot of pain and sickness and lost a lot of weight. I was admitted to hospital for a month whilst they tried to get my feed back up and going again. Unfortunately I have never really recovered from that and I now run my feed over 24 hours at as a high rate as my bowel will tolerate so that I can get as many calories as possible.
I think that is about everything I can tell you in terms of information about actual feeding tubes themselves. So why is it important to raise awareness of feeding tubes? I've heard people say that feeding tubes don't need awareness and that they aren't an illness and awareness won't save lives. That's true, it won't save lives but if you're a regular reader of my blog then you'll know how much I've struggled with ignorance and bad attitudes towards my tube and this is why I think it is so so important that the implications of living with a feeding tube are recognised. I think positive awareness about any issues that affect you is a good thing and those who say otherwise... well, some people always need something to moan about. Feeding tube awareness, in my eyes is positive and is very much needed.
How are people ever going to understand what my needs are if they don't understand what a feeding tube is? I would love nothing more than to never again have to explain to someone what my feeding tube is and what my needs are. I don't want this to sound like I don't want people to ask me questions - if you have a question ask away! I just really don't like having to justify myself. Questions are fine but don't challenge what my needs are. Don't challenge whether or not I need my tube. I do and that's that. Don't tell me I'll be fine doing something when I'm the one carrying the heavy bag and I'm the one that gets hurt when it gets pulled. I'm experienced at this and I found out the limits and risks of my feeding tube the hard way. My tube is at risk of being pulled everywhere I go and every time I move. My bag which carries my feed and my pump is at risk of getting bashed which means that the feed might explode or my pump might break and all of these things have happened to me. Where possible I like my feeding tube to be discrete. I don't like looking out of place and often people don't notice I have my tube. Unless you look carefully at the tube coming out from under my clothes, then I just look like I'm carrying a regular back pack and that suits me. I've briefly considered wearing a sign on my bag alerting people to be careful of it, but how much negative attention would that bring to me? I don't want that! I just want to be like everyone else. When people are polite and understanding, I am like everyone else.
Questions:
There's also another aspect for awareness - that people find feeding tubes are really scary and they really aren't. I liken my stoma to an earring. It doesn't hurt any more unless it gets tugged and pulled - much the same as your ear piercings won't hurt unless I tug them or pull at them. Then they'll hurt! 'Does it hurt?' is the question that I get asked most often.
Another question I get asked a lot is 'Can you feel stuff going in?' - If I plunge something quickly into my stomach I can feel it in the same was as you can feel taking a big drink. If I feed too fast I get pain in my bowel because it can't hold or process large volumes. If I've had too much feed I feel really sick, or am physically sick. When my pump whirrs can I feel each individual projection of 1 or 2mls going in? No.
'Can I see it?' Yes! Literally, just ask! You can't see my hole, all you can see is a button on top of my skin. I don't go round flashing it to people because people might not want to see it and I don't want to gross people out if they don't like that sort of thing. I'm not embarrassed about showing my feeding tube though and it probably looks way less scary than you imagine.
'Will you have to have it forever?' I don't know. Unless a miracle cure comes along to fix my bowel then yes. I'm always trying new drugs and treatments to try and improve things though.
'Can you eat?' Certain things, sometimes. Food does make me sick and so often when I'm out and about, I don't eat. I only eat at home when I'm near a bed and my toilet. I usually eat soft food or food that mushes up easily once I've chewed it because that's easier for my system to digest, and if it doesn't digest it's easier to drain it out of my gastric tube. I can't digest milk or wheat (celiac disease) and I'm allergic to onions and garlic so that limits things anyway. Onions and garlic are in pretty much everything so I can't eat anything ready made from the shop. I don't eat solid meats because they don't break down enough but I do have things with meat in them like chicken or beef stock. I mostly stick to liquids, toast, plain crisps, eggs and mash potato.
I can't think of any more questions right now, but I absolutely welcome you on here, Facebook, Twitter or in person to ask me anything that you might want to know about my feeding tube. No question is rude or silly! One of the aims of raising awareness is answering any niggling curiosities.
If you have made it this far, thank you so much for reading. I hope that I have helped you learn something new about feeding tubes.
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