Holding my own.

Hi everyone, Lots has been happening over the last month and its hard to remember everything but heres a run down of where I'm at right now. The tube feeding isn't working...by that i mean my body isn't tolerating it. We initially thought that my recent pain issues were related to my surgical tube but after having that removed and having a naso jejunal tube placed, I'm still getting pain. So we are left with no option but to go to Manchester for assessment for TPN (IV feeding). This is not a good place to be and I'm finding it hard to accept. I'm really down about it all and just wish that for once something would go my way! I'm waiting for an appointment to go over there but my GI said it could take up to 6 weeks. It will give me time to get used to the idea but it also means that I'm going to be in a much worse place when I do finally get there. I am back down to 45kg, not my lowest of 42 but I'm fast approaching that now. I still have my naso jejunal tube but I'm only getting 300 calories a day through it at the moment. My dietitian thinks I should be in hospital but I know my body well and for now I'm managing. I'm also waiting for my surgical review for my gallstones. My appointment is towards the end of March but my GI went over it a little when I saw him on Monday. He said he will recommend that they remove my gastric stimulator and do some more biopsies when they do my surgery. This was a bit of a shock because I hadn't given up hope on it working yet! Obviously he thinks that we have tried it for long enough now, I just wasn't expecting it, especially after my last adjustment when the rep told me that there were a few other settings they could try. I feel like I went through it all for nothing and just have a tummy full of scars and holes for nothing. Now I have to face more as a result...that wasn't supposed to happen, I was supposed to get better! I always knew that it was a possibility but at the same time I thought I was doing the right thing. I struggled to make the decision to go ahead in the first place and once I had committed myself I was determined that it would work for me. It turns out it doesn't matter how determined you are when your body has other plans!

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