Thought it was supposed to be Good Friday ?

On Thursday I had a good day. Friday, bad day. Woke up with slightly high temperature which is never a good sign. The output from the drain increased and I had cramps, also not good. Any setback sends me into a spiral of despair as I know it means going home soon is looking less and less likely. My Consultant called and told me not to worry, the overall trend is upward and this can take 3 months to heal. He told me that last time but what he doesn’t say is sometimes it doesn’t heal and then what are my options – more surgery or TPN. Neither of which appeal one little bit.
Stephen came up and we went for a walk, the hospital is heaving and I hate it. People everywhere, all the lifts full, no privacy. We sit in the car – I cry. I go back over all the ‘ why did this happen ‘ ‘woe is me’ ruminations, which Stephen doesn’t like me doing but secretly shares. I think the cry helped and I was calmer by the time he left – I almost hate him coming up here, the M4 so busy in bank holidays and Stephen is not in a good place. If something happened to him, I don’t know what we would do. But that’s my anxiety kicking in and it’s on high alert at the moment.
Being in a large University hospital doesn’t help. No one seems to come in for a simple op and then leaves again.  Take my ward for example –

Sophie – 40 – looks picture of health, previously a gym bunny and beautician. Was perfectly healthy until bowel cancer hit last year, colostomy, chemo now back in for further surgery to remove shrunken tumour. She’s very nervous worrying about how her scar will look which I find a bit strange. She had her surgery Thursday and is in intensive care so hasn’t returned to the ward. Bit ominous.

Karla – 41 – colostomy aged 26 for slow transit, continuous problems after, hernia op March 17, following which bowel strangulated, further op to resite stoma, now slowly recovering.

Alice -28 – bowel abscess. She was traveling in Europe with her boyfriend when she became ill. Had to get back to UK and ended up here having an emergency colostomy last year. The abscess is now back and so she is on IV antibiotics – they have no idea what’s caused the abscess but said it could be something like a tiny chicken or fish bone imbedded somewhere in her gut. It will make its way out eventually but could take ages. She’s very cheerful though, youth on her side and she seems to take it all in her stride.

And so it goes on …….. as I walk around the ward I meet many people who all have a back story usually of worrying proportions. But that’s because it is a specialised ward in a specialised hospital so we only see the complex cases. Doesn’t seem to be many with my problem as it’s quite unusual. It’s a very lonely condition as I can’t really talk about it to anyone as most fistula are caused by Chrons or radiation damage but mine is neither. I think mine has been caused by surgery or rather surgeons, one in particular and it makes me very sad and very angry that I went along with his plan for over 20 years .  Or has he been proved right – that invasive surgery would possibly kill me which is why he did what he did.  I just don’t know anymore. 

Stop thinking, stop thinking, stop thinking.

2 thoughts on “Thought it was supposed to be Good Friday ?

  1. I’m not surprised you feel sad and angry, and I think it’s good to have a cry and get it out when you need to. I can’t possibly compare our cases, but I do share the atypical aspect; my issues aren’t from Crohn’s or UC, and even my connective tissue disease isn’t typical, there are no real explanations or names or anything. It’s not a fun place to be. I do hope that things go in the right direction as I can imagine how tough this is on you and how dearly you’d like to go home. Sending a big hug your way…
    Caz xx


  2. Evelyn

    Everyone has a story to tell, and yours is just as valid as theirs . The extended weekend over easter makes it for a long boring few days but I hope you can listen to the radio, and maybe relax a bit. Sending love and vibes.


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