Change of plan

Well it looks like everything has changed again and I'm not convinced it's for the better....

I had a phone call from my GP at the end of last week informing me I had another infection in my tube site (since my tube has been infected the entire time I've had it, this was hardly a surprise) and that my blood test had shown hyponatremia (low sodium) I have been feeling very faint and even more unwell than usual of late so this sheds some light on why.  Her thinking was that this has been 'simply' caused by malnutrition as a result of not getting enough nutrition in, which again, would make sense,

I went to see my surgeon on Tuesday at my local hospital, with a view to discussing the tube change.  I was hoping to have my current freka jejunostomy tube changed to a low profile 'button' style of tube - with a bumper to allow me to bathe and clean the tube without risking it falling out - I currently hold the tube in place with an adhesive dressing, which is less than ideal where water is involved!   His immediate concern was the intestinal pain I have been experiencing which has prevented me from raising my rate from 15ml/hr of late, and was quick to point out that simply changing one tube to another is highly unlikely to rectify this - which has been in my thoughts all along.  Basically we need to find out if it's the tube site causing the problems - or my intestines (I have been diagnosed with intestinal dysmotility, but the extent of this is unknown.)  The least invasive way to discover this is by going back to an NJ tube, thus not relying on the tube site.  If NJ feeding proves successful, by which, I can increase the rate back to a more substantial rate then it means the problem is the tube site - not my intestines.  In terms of further action, well, an NJ tube is only a temporary solution due to the fact these block easily, need replacing regularly and can create ENT problems of their own.  It's possible that a new J tube can be sited somewhere else in my intestine, or a PEG- J tube. (Gastro tube with jejunal extension, I was originally warned against this due to my frequent vomiting which is likely to 'flip' the extension back in to the stomach and render it useless until fixed.  My team hardly work at the speed of light so I'd be likely waiting months for anyone to bother even thinking about sorting it out)  The worst case scenario is that NJ tube feeding is unsuccessful and I cannot tolerate a higher rate but we'll cross that bridge if we come to it.

My surgeon went off to email my consultant of his plans and I've not heard anything of yet.  I'm not too happy about the change of plan but right now I don't really care what happens - well, I do.  I just know I can't pick and choose right now as something desperately needs to be done soon - it's not about what I want at the moment, it's a question of essential need.  With a BMI of under 16, I'm back in the high risk category of refeeding syndrome which will no doubt mean a hospital impatient stay rather than an outpatient placement.  Again, less than ideal but I just need to look to the future and get whatever needs doing over with and hopefully have a more favourable plan once I feel better and am out of the risky underweight range.

Been feeling extremely nauseous and been vomiting a fair bit of late although I have managed to struggle on with work.  If I can't work, my mood becomes extremely low and I need to keep my spirits up as much as possible at the moment so despite the fact it may not be the best idea, I'm carrying on regardless!