Just how well am I allowed to expect to be? Never 100% it seems – it’s time to say ostomy or not I need help


I’ve just about had enough, life just isn’t what it was straight after my operation. Over the past week I’ve just simply not felt like Imagetalking about anything fun, happy or colourful. I’ve continued to put on a brave face and smile, but the truth is I don’t really feel like smiling. It could be because of the cold dark nights, it could be going into work while its still dark and arriving home in the depths of blackness, living like a vampire and never seeing the sun, it could be a whole number of things – but it isn’t I’ve just had enough of getting the rough end of the deal.

This week and last I haven’t been feeling happy with the straw I’ve drawn. After 13 years I’ve served my sentence and now I’ve had enough. I’m not happy with my health since my operation. It’s not the miracle cure for my Crohn’s/Colitis that I’d hoped, it was for a few months like living a brand new life, but now it’s not.

Ok, so maybe this has something to do with spending the last week in the most unbearable pain since my operation after developing a very freakishly large abscess in a very unfortunate place (I don’t think I need to elaborate). After the amazing weekend in Newcastle falling back in love with swimming all over again and feeling back to my old self – less the agonising pain – I suddenly (in the space of hours) developed this lump, which grotesquely gained a life of its own and grew and grew to the size of a golf ball. The result was that come Monday night I was in unbearable pain…unable to walk, sit down or lie down without emitting a squeak like a dying mouse caught in a trap. And by Tuesday I struggled to sit at work perched on the end of my seat waiting for 3 o’clock for an emergency appointment with the IBD nurse who took one look at it and went “oh Rachel that’s painful to look at” declared it was probably only curable by operation before getting a doctor to poke at it till my eyes streamed and prescribed my with very powerful antibiotics (you know the type you are so forbidden to drink with they even write it on the outside of the package).

Anyway it drained bucket loads of bloody stuff and I spent three days in bed sleeping like there was no tomorrow. Oh and throwing up – great, thanks Crohns/Colitis.

At the follow-up appointment a doctor I’ve never met had another good poke – I wished at that point I’d had a bikini wax, strange what goes through your head at these moments – I often think of the oven being on, etc. Anyway she decided I’m officially ill. FINALLY. She also decided that I should have my operation as soon as possible to remove the rest of my bowel  something although I wouldn’t like to admit it almost reduced me to tears at the prospect of missing my Mirror placement, awards ceremony, Christmas parties and playing hopefully in snow – also the idea of being stuck at home for another four months just makes me want to die…haven’t I had enough for now?? Isn’t it time to live for a bit, to enjoy life?

But don’t I want to have it removed and be well, I mean truly well?

I never wanted this rubbish illness (I mean who does?) but since the operation it seems just mean that I’m still having many days where my life is ruled by bathrooms, blood, guts and pain. I keep hearing myself say to people “well i’m loads better than I was, I’ve never been more well in my life”, I keep hearing myself say to doctors, surgeons nurses  “I don’t want to complain I don’t feel great – but, I still feel loads better than I was”.

Why do I keep doing that? There’s really no wonder there doing nothing about my rapidly declining health when I keep saying I feel “loads better” but a little ill…I’m making it sound like I’ve got a common cold not an incurable illness. They’re probably thing that I put up with it before for a whole 13 years, so if I’m better than ever I can no doubt put up with a little NIGGLE for a little while longer – and no doubt I can if forced to – but how long is a little longer? A month? A year – A LIFETIME I’m guessing!

Anyway after 13 years of this hell and finally going under the knife why should I not expect to feel awesome, I mean like jumping out of an aeroplane awesome, running through a field wind in my hair awesome? I had a few blessed months of feeling weak but incredible, then I made a load of energetic plans but now I’m struggling to even imagine doing anything but the reading challenges.

I’m not happy with how my body is at the moment – there I said it (that wasn’t that hard). That’s the truth and it’s got nothing to do with my ostomy bag, in fact if it was just Winnie I would go running through the streets flashing her shouting SUPER WINNIE (no I wouldn’t for fear of all sorts of consequences, one of which would be a passing pigeon pecking at her) and showing her off as the most amazing piece of medical genius ever invented. No it’s all the other things that are currently going wrong:

A lovely day at the end of a very miserable week - I live for moments like this

A lovely day at the end of a very miserable week – I live for moments like this

1) my mucus fistula which seems to be getting bigger and even more like a second stoma every day. Honestly its a massive pain in the gut (metaphorically and literally). Felicity is both painful in her spur of the moment movements and dramatic. Basically like a messy child when my fistula erupts she never stays contained, she hardly ever aims into the bag, but more around it causing insane damage to my poor still not fully healed skin and creating a considerable and inconvenient mess.

It’s as if she knows that I don’t want her there. You see unlike Winnie I never wanted her, she was a horrible and unexpected consequence I never expected, like those bloody annoying people who unexpectedly turn up for tea when you don’t have enough food and never told you they had allergies and expect to be fed. My fistula basically came to the party without any beer and drank a whole crate.

2) the never-ending need to use the loo – I remember straight after my op when I went to the toilet for the first time I thought “what the hell my bowel isn’t connected to anything, how can I still do this?” – an excellent question I must say. Now it’s six months later and the urgency is still there and I still find myself having accidents and racing around to find the nearest M&S to use the loos – hmm not what I signed up for.

3) the unexpected abscess – urgh comes hand in hand with my illness it seems.

4) feeling depressed – comes hand in hand with my illness it seems.

5) my joints – the cold weather drawing in is playing havoc and some days holding a pen/ putting on my coat with my hands and shoulders seems a true challenge. Nothing seems to be getting rid of this agonising problem – and I don’t think anything will, but never mind it’s a small problem in a large goldfish at the moment.

I just want to be ok, is that too much to ask? it would seem with IBD it is, and I’m guess I’m used to that and I can put up with that. It’s moments like tonight when really looking forward to swimming and suddenly realising as I remove my tights that fistula has soaked me though with blood…God knows how long I was like that for too. So I had a break-down and got re-dressed and ran out. Bloody drama Queen!

A little moment of calm - no leak!!!

A little moment of calm – no leak!!!

I had been feeling a little better too after a stunning Autumn walk in Lymm on Sunday with Andy, kicking the fallen leaves and dancing around in my new furry hat and running away from crazy muddy dogs determined to leave their print on my new cream coat. But that swimming moment has brought me crashing down into a world of negative feeling sorry for my self yet again.

I only wanted to feel like me again. Which, I’m sure once these antibiotics are gone and the docs have stopped shoving tubes up and down various places aliens would probe I will.

I just need some help getting back to that place….help!

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