Feeling disillusioned 

Definitely a Grrrrr type of day.  Again.  Here’s the latest scores on the doors –

BP 120/70

Temp – Normal

SATS – 100%

Pulse – 78

Bloods – OK except for Haemoglobin which is low 

Stoma – working well

Drain – about 30 ml per day (low)

Midline scar – open but OK 

Weight – increasing ( so gone from chubby to chubbier) 

So,  any sign of me coming home – NO.

Seems I have anaemia of chronic illness which means it’s nothing to do with iron, just my body struggling with all that’s gone on. There is no treatment apart from transfusion which they don’t want to do unless they have to.   My Haemoglobin level has  improved slightly but still low,  hence the exhaustion.   I am eating now but probably not enough to nourish me so I’m still having TPN.  It seems they are testing my gut to see how much I can tolerate without making me ill with a view to taking me off TPN.  It’s therefore quite difficult to eat anything that could be a potential land mine that could cause my gut to explode 💣💣

It’s all so annoying.  I am essentially well apart from this lower bowel,  I had a CT and there is no evidence of a leak in the joins he did or eanywhere else, which is mad as it’s obvious there is one.     All that flaming radiation and still no definitive answer – I could SCREAM 😫😫

Consultant is like The Scarlet Pimpernell and has been away all week.  I have however had daily visits from loads of doctors who tell me how well I look,  considering……. 👊👊👊

So I just wait and hope.  The chances of further healing could be compromised by the fact I’m eating yet they don’t want me on TPN any  longer than is necessary as that is not without risk.  Your body does not like having its nutrition via your jugular vein,  it’s not good unless you have no choice.  One of my visitors yesterday was a girl who has just 10cm of bowel,  without TPN she would die, she has no choice.  Would I ever be brave enough to have more surgery – I really don’t know.  Apart from my experience which this time has been horrific,  I’ve seen too much about the horrors of bowel surgery especially when it’s complex.  So do I come home, not well but OK, probably dependant on nurses back and fore and possibly some TPN as a back up or do I wait longer and hope.  It’s very hard as there is no rhyme nor reason to this.  Everyone is different. 

On the plus side Madame Coke is being discharged tomorrow – 👏👏👏.   I shouldnt  be mean – she’s OK I suppose apart from the coke addiction,  infact I hope I won’t be regretting her departure as who is going to replace her 🤔

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