My Life Living With Home Artificial Nutrition

PINNT is an independent charity set up by patients for patients requiring Home Artificial Nutrition. They provide support and understanding to patients and their families and work with medical professionals who are looking for information on Artificial Nutrition and help companies offer better services and equipment. 

As it is Home Artificial Nutrition Awareness week, I thought it was a good time to write this post. Every year in August patients are encouraged to share their stories about what it is like living with HAN and various events are organised by PINNT to raise awareness throughout the week.

My Story 

On the 28th March 2017 I had an NJ tube placed to see how I would cope having a tube as I had never had one before. I was sedated for the procedure as it was more complex than having an NG tube which is placed into the stomach, an NJ is put down the nose and into the entrance to the small bowel called the Jejunum it bypasses the stomach. I had this tube in for 1 week and it wasn't very pleasant as I could feel it in my throat every time I swallowed, it felt uncomfortable and at times caused me to have choking fits, the tube was taped to my face as putting it behind the ear didn't always work. I was unfortunate that I managed to dislodge the tube with a coughing fit and it came completely out meaning I had to have another one put in. At least I knew what to expect this time! Thankfully this one stayed in and they decided that I would be ok to have a PEG-J which I had on the 24th April being a more permanent option. The other is a temporary option

My Daily Life On Home Artificial Nutrition

It has taken a while to adapt to my new way of life as everything is different from what it was before, my family has been affected as well, however I didn't have much choice in the matter and just have to get on with it the best I can. It has been a life saver for me as my body was not absorbing what was going in and the weight was just dropping off me, my clothes were hanging off, my hair was falling out in clumps and I was malnourished. My body was shutting down slowly. The cause of this was a number of things, Delayed Gastric Emptying, Ehlers Danlos Syndrome and Colonic Dysmotility all playing a part.

Every day my feed goes on in the evening about 6pm and comes off the following morning, totalling 16 hours, this then gives me the rest of the day free, making it much better for me. I have a portable stand and backpack that I can use when out and about if I needed to and nobody would know about it. I can have it on the back of my wheelchair.
The machine I use is fairly simple and compact compared to the one I had in hospital which was attached to a big stand that you had to drag around making it very difficult. This one stands up on my drawers so is much better, I need help with putting the bag of feed on the stand and feeding the giving set through the machine due to problems with my arms but I can connect the tubes together myself. 
The tube has to be flushed before and after the feed and throughout the day at regular intervals with sterile water using a 10ml syringe as I struggle to manage the larger syringes, this is to keep the tube clear and also for hydration if I am not able to take much orally due to nausea. Some of my medication is in liquid form so it can be taken through the tube safely meaning I can reduce how much I have orally. When the feed comes off in the morning the tube needs flushing through to make sure everything is cleared to prevent blockages.
home feeding equipment

Every week the District Nurse visits me to check the site for problems and also to advance the tube 2cm in and then pulled back, not to be turned like with the NG, this is to prevent any granulation forming on the inside of the stomach wall to close the hole up. This is really important as the body naturally wants to heal up any holes and so this stops that happening I have been told. The area is cleaned as there can be discharge from it and crust and then a dressing put on, this is not the norm after this amount of time but I am still getting redness and discharge.

I have been asked by people if I still get hungry, I get the odd craving for normal food that people enjoy but not that much for meals which I thought I would  but I guess my feed is giving me all my nutrients I need and fills me up. When my family are eating it does feel strange that I am not having anything and the smell of the food can make me feel hungry. We obviously don't go out for meals anymore which does seem odd but have had to accept this. I am lucky that I am able to eat very small amounts still but it is for taste and pleasure only, I have been told from my Dietitian.
meals out
Family meals out 

Every month the Dietitian sees me to check the tube and my weight and sort any problems I may have.

My 5 Top Tips for managing Tube Feeding

I hope this has given you an insight into my life with Artificial Nutrition and that my tips are helpful, they work for me. Maybe you have more tips that I have not included that you could share.   

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  1. One of the joys of EDS. I have problems with food and eating but thankfully not too much that I would need a tube, yet but one never knows!! Great post and especially helpful for those who are in the process of getting a tube as they'll know what to expect.

  2. Thanks for your comment. Unfortunately it is the joys of EDS, hopefully you wont ever need a tube but it has been a life saver for me.

  3. I am glad you are getting the nutrition you need but I am sorry that you have to go through this x
    Lola Mia // www.lolitabonita.co.uk

  4. So sorry you have to go through this, thank you so much for sharing though, it was really interesting to read x

    Tiffany x www.foodandotherloves.co.uk

  5. You are so brave for sharing something as personal as this. I can't imagine how difficult it is, opened my eyes to something I had absolutely no idea about x

  6. Thank you Ysabelle, by sharing this I hope to raise awareness, x