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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My appointment with the surgeon – my dream granted and the more serious stuff.


Today I had a very long overdue appointment with the surgeon. After the hardest week

not my surgeon but an internet pic

not my surgeon but an internet pic

at work to date, exasperated by gaining a horrid flu-like bug – thank’s to my none existent immune system someone only has to sneeze on Mars and I get a cold – I dragged myself out of bed and traipsed to the hospital to see the man who formed Winnie and finally got me under the knife.

Ok, before anyone yells at me, I know that you’re not meant to attend the hospital if you have a bug, because you could cause an epidemic, but I was not going to let a stupid cold stop me going to this appointment because, to be quite frank, who knows when he will sodding well have time to see me again. These appointments are as rare as gold dust. Trying to get an appointment scheduled for anything at the hospital is an absolute nightmare, but trying to get an appointment with a surgeon, well that’s taking your negotiating skills to a whole different league. For all the effort and constant calls it takes to get yourself slotted into a surgical outpatients clinic you would think they were trying to build a mechanical army – but in reality when you get there the waiting room is always empty and your surgeon is simply not as ‘oversubscribed’ as his secretary would like you to believe.

Oh and did I mention that these ‘rare’ meetings with my magic-hands man are scheduled months in advance – three/six months – and that forgetting them is a sin punishable by being struck-off. Scary stuff…they are highlighted around eight times in three separate diaries, two email accounts and even pencilled into my work diary for court cases – that’s how scared I am of being erased from that not so full book.

Anyway I dragged myself to the hospital while suffering from red-eyes and hair that looked like I’d stuck my finger in a plug socket. And found myself in the main outpatients waiting room full of people (who had also been too scared to miss their vital appointments) spreading their germs around to other people with little immunity to shield themselves. I sat there for around an hour before deciding I had been forgotten and taking myself through to the surgeon…to find that I was the only person waiting to see him.

Anyway, enough rambling, I walked into the room, sat down and waited for Mr Johnson my very lovely surgeon, who always seems to feel it necessary to hold my hand while telling me anything – nice, but sometimes a little too much if I’m feeling emotional. Today he told me how well I looked – a lie as I looked like death – and asked me how things were going, seeming unimpressed when I told him I had apparently been abandoned by the gastro team and was still on zero significant medication to help the flare-up of Crohn’s/Colitis I had been dealing with for the past three months.

He was also startled at the state of my skin, which is red and oozing around my fistula bag from all the leaks in Rome, which feels like a lifetime ago. The decided that in order to live a relatively trouble-free life I would need to have the remaining part of my redundant bowel removed so that I could be free of the pesky fistula…but that he was concerned about me having further surgery at such a young age.

I was like DO IT!!!! During the appointment I stressed that I wasn’t sure about reversal..what if the disease came back worse than ever when they reconnected me, what if I had to have more operations…I mean would it not be better to save myself all that pain and just have the whole thing removed once and for all? Me and Winnie (my stoma) are getting on just fine, maybe I will regret it in time (maybe I won’t) but for now I could see myself living just perfectly well with an ostomy bag for the rest of my life. I told him this and I seemed to make his day.

Like a frog

Like a frog

Before he got rid of me with a ‘you’re one of our favourite patients’ and a bit of intense handholding and eye contact as he explained I would need to have a serious think about the next step, which would be another significant operation, I braved the question I have asked on so many occasions and been met with a heart-breaking no!

“Can I swim?”, I said battering my eyelids and trying to look like the cute cat with big eyes in Shrek.

“Last time I asked I had the open wound, I love swimming, I think it would really help my stress levels”

And would you believe it he said: “There’s no reason why not!”

I felt like soccer punching the air and jumping for joy, and he looked genuinely delighted to be giving someone positive news after what had obviously been a trying morning.

Oh and he said I can have a bath….the luxuries!

So I’d like to say I left the hospital with all these incredibly serious thoughts in my head, permanent or not permanent, risk the J Pouch or have it all whipped away? But in reality all I could think of was dipping my head into water and swimming like a little frog up and down a clear blue swimming pool dodging other swimmers in a race to get to the poolside, with nothing on my mind but the soothing repetitiveness of counting the lengths against the water splashing in my ears.

That’s heaven, and once I’ve had my piece I will get on with the serious stuff.