Radio Silence

Sorry for being so quiet over the last few months, I have been really struggling with the symptoms of malnutrition, which have left me completely drained.

In October I was admitted into hospital to be put on artificial feeding, which involved having a naso-jejunal tube placed, not something I would recommend. Firstly, they spray up your nose with a numbing spray and then they shove numbing cream up your nose, which feels horrible when it then goes down your throat. Then a tube is fed up your nose, down your throat, through your stomach and into the first part of your small intestine. After the hideousness of the procedure to get it in we were able to start using it the next day. After a few days of getting some nourishment I started to feel much better than I had done. Which is then quite odd being in hospital and feeling the best you have felt in months.

I started off with my own side room, not for any particular reason it was just that was the first bed that became available. However, after a couple of weeks they needed the side room for someone so I got put on the main ward. Whilst it wasn’t great being on the ward, there was one positive, my second night of being on the ward a lady came in who was about my age, well 10 years younger but closer in age than anyone else! She was lovely and we got on like a house on fire, we are still in touch now. I got moved back to a side room because I ended up with an infection. After 4 weeks in hospital, a decision was made to make the tube feeding permanent, this meant having a small operation to put a tube through my abdomen, into my stomach and through to the small intestine. After the tube was placed, I was taught how to use it and had deliveries at home of feed, tubes, syringes, drip stands, pumps etc etc.

After a total of 5 weeks in hospital, I was eventually allowed home. Fortunately this was the day before our good friends wedding, which I managed to make it too, I didn’t stay all night but I was so pleased to actually make it. I have so much more energy than I had before because I am getting the nutrition that I need. I have to be on my feeding pump for 16 hours a day but that is over night, I am finding it doesn’t interfere with life too much. I even went out and took my feeding pump with my in a specially designed backpack.

So, the feeding is going well. However, the normality of EDS is still there. I have seen my spinal surgeon and for the time being am managing to put off the next spinal operation, which is great as these are really big operations. I have also seen my hip surgeon and I am scheduled to have my left hip operated on at the beginning of next year, it is to fix a labral tear and stabilise the joint, the same surgery I have had on my right hip twice. I am also due to see my shoulder surgeon next week as I am having some problems with my clavicle.

Other than that, we are just preparing for Christmas, which seems to be rapidly approaching!

Below are images of the feed, the nasel tube (NJ) and the abdominal tube (PEG-J), I use a tube pad for comfort.

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