Escaping the stall – the biggest achievement of my life in IBD awareness week

This week is IBD awareness week. Yes, I know this is more of a special week in America (us Brits give it a whole month) but we should use every opportunity we can to raise awareness of this crippling illness and the real effect it has on people just like you and me. You know…slightly bonkers, but mostly normal.

Anyway this week means a lot to me. It’s the week when I think of all the other people who battle the public’s preconceptions of disabilities, while struggling day in day out to keep their lives together while dealing with crippling pain and fatigue. And, of course, those who are dealing with the frightening period before diagnosis, were you have no idea what you’re dealing with and are living in a state of total confusion balancing the dilemma ‘to tell or not to tell’ your friends in case they call you a freak.

Me and Fiona Phillips

After more than 13 years of suffering from Crohn’s/Colitis – the blood, the pain, the fatigue, the embarrassment, and all the horrible side-effects of the toxic drugs, treatments and x-rays – I have finally reached a point where I can see a light at the end of the tunnel. Yes, the light seems almost like a pin prick at the moment, but it is undoubtably getting closer. Following my operation I have at last been able to escape some of the horrible chains this illness binds around sufferers. Mainly the constant diarrhoea leaving me considering moving into a public bathroom full time and the diet of nothing but Ensure drinks and clear soup…but mostly the unbearable, ‘I’m going to black out’, pain. Ok, I’m still not well, and I’ll be shocked if I will ever be as well as the Average Jo, but right now I’m doing Ok, and I think others should take hope and courage from that.

Seven-months-ago I couldn’t last more than an hour at work without feeling like I was going to pass out; sitting through a court case was like sitting with a ticking time bomb under my ass…life wasn’t good, in fact somedays, while I was reading all the graffiti on the public toilet walls for the millionth time while my abdomen felt like it was being ripped over by gremlins with sharp teeth and razor-sharp claws, I thought I would be better off dead. I used to mutter to God, ‘please make it stop, let this be the end’, but it never was – and I’m glad every day it wasn’t.

But on Monday something happened that made me realise that no matter how ill you



are, not matter what chains or hurdles are thrown at you, amazing things can happen (yes, even to little me). I was named Trinity Mirror’s Young Journalist of the Year (that’s for the whole company, including The Mirror) – yes, I couldn’t believe it either! It was, and will probably remain (unless I win the Nobel Peace Prize or something – not likely) my single greatest achievement in my so far illness ravaged career. It shows I was right not to give up, quit my job, or even go part time, due to my illness. It shows that if you work hard enough and you battle through some of the most unimaginable pain something good will finally happen. It’s achievement enough that I’m alive and still sane at this point (well to an extent), and that I have an amazing support network around me – this is just the very big cherry on top of the icing on my cake.

Obviously this wouldn’t be a blog post without a bit of “Rachelness” to add in. After a day at the Editorial conference where my stoma chose to rumble, fart and make all manner of rude noises at the most inappropriate of times – at one moment I thought my stoma was going to take off and hurtle me towards the CEO like a human cannonball – I was exhausted. I got ready at the speed of light in my very swanky hotel room (in the Hilton – I could get used to that), transformed into a beautiful princess and waddled in my far too high but very pretty shoes downstairs to the award ceremony. When I arrived I was met with a glass of wine as huge as my head, before mingling with fellow reporters and upper management (many of whom I think thought I was a different person). It was very lovely indeed.

The pride of Trinity Mirror Awards

The pride of Trinity Mirror Awards

Ok, so where’s the ‘Rachelness’ I hear you cry…well here you go. I was so certain I didn’t stand a chance in winning against such incredible colleagues from across the company that as my name was announced I took the opportune moment to take a swig of wine. Wine plus shock = near chocking. I managed to hide it well, but as I walked in a daze to the stage I thought I was going to cry, mostly due to the honour but also due to the wine burning the back of my throat.

Oh and after being presented my award by the very lovely Lloyd Embley – editor of the Mirror – I couldn’t get back off stage. I sort of tottered looking rather confused on the brink of the stage looking at the very rickety steps thinking ‘I’m going to break my neck if I go down there’. People must have thought ‘she’s drunk’, in fact i’m sure I probably looked like i was going to jump but after being rescued by a knight in shining armour I made it back safety, walking back in an embarrassed blur as a whole room of people way way senior than me clapped and wished me happy birthday.

Surreal. Especially when you think for three months of 2013 I was seriously ill and like a dead man walking and for five months I was off following a serious operation – how on earth can I be an award winner?

My lovely boyfriend with gifts as I arrive home from the conference

My lovely boyfriend with gifts as I arrive home from the conference

So, if you feel like giving up this week. If you feel like you would be better off dead than living with the pain, blood and agony. If your fed up of life throwing an endless stream of crap at you. Stop. Just stop it. Life will get better, be it because of an operation, great treatment or new medication. It might not be today, it might not be tomorrow, or even this year, but things will get better for you. Just keep strong, keep fighting, keep positive, and soon that little glimmer of light will appear, and when it does GRAB IT!



A close call in court – the joys of court reporting with an ostomy and IBD

Before my operation my Crohn’s/Colitis made court reporting an almost impossibility.



I used to sit in agony in courtrooms wringing my hands together until they went white with pain under the press desk, jiggling my legs up and down to try to distract myself from the agonising need to go to the toilet – a need that never left me and always raised its ugly head at the most important moments of a case.

Covering the courts became both a joy and a punishment for me. The real challenge lay not in the reporting of the cases but the endless sitting and waiting, waiting, waiting for your case to come on. For most people the waiting would just be boring, for me it was agonising. While I was interested in the cases (if you have never sat in court and listened to mitigation and witnessed the general drama it is definitely a must – and is nothing like the telly) the constant need to race to the toilet every ten minutes made the waiting unbearable. I once dared to nip to the toilet after waiting through around three hours of driving offences, curfew amendments and restraining orders while feeling like my stomach was being ripped apart from the inside by a claw hammer. I remember racing out of the courtroom to the toilet – which is NEVER near enough to the courtroom you are in – thinking it will just be my luck if they finally hear my case now. I finally raced back to the courtroom five minutes later, still very much in the grip of the blood and pain, only to bump straight into the barristers for my case as they walked towards the Robing Room having heard the case – just typical.

Lesson learned – in the past two years I would rather have passed out than nipped to the toilet again!

Yes, I admit it the fear was always very real that I would pass out through the sheer effort of staying up right in my seat, and I am sure there were times that a jury member or even defendant has looked at me and thought ‘dear God that woman is about to collapse’. I lived in fear of an accident, and in even greater fear of someone making me move whenever a wave of pain flushed over me – when I was still I felt slightly more in control. And I am sure that all the press benches in the magistrates and crown courts that I’ve had the pleasure of sitting in have finger nail marks indented so far into the underside of the wood their imprints could almost be seen through the top.

So after years of covering court cases with the nightmare of my constantly flaring Crohn’s/Colitis, dealing with my ostomy while doing my job seemed like a reality walk in the park. Yes there was always the slight embarrassment of having my ostomy bag changing kit searched through by the security team, (and once or twice having to hand in my rounded cutting scissors at security as a ‘dangerous’ implement) but apart from that attending court was a relatively easy experience. So imagine my surprise when today my ostomy started acting up while I was sat in court patiently listening to each case and waiting for a jury to return. I won’t go into details but I could feel something was going on, and going on, and going on…and boy it just wasn’t holding back, in fact Winnie was going hell for leather. And for the life of me I couldn’t understand why.

So the next two hours were quite frankly hell. I quickly realised that Winnie was going to have to be emptied or we could end up with a pretty crazy situation in the courtroom. Basically Winnie was a ticking time bomb, and I sat sitting nervously trying to concentrate on my shorthand and what the counsel were saying to try to distract myself from the imminent explosion that was building up inside me. The pressure was unbelievable…but I was determined not to leave the old fears about missing things while on the toilet returned and after grimacing through some of the worse pain of my life, there was not a chance in hell that I was going to miss the verdict because of my ostomy – yes, that is how stubborn I am.

Ok, the situation was made worse by my remaining colon continuing to contain active Colitis and me feeling the need to go all the time. The whole thing was unpleasant to say the least, and I just knew I needed to rehydrated and possibly stuff my face with marshmallows to stop this onslaught from Winnie or I would be in a whole new world of trouble soon.

The moment the judge broke for lunch was a blessed relief. I think I actually sighed audibly. As I stood up the weight of Winnie was horrendous and I had to hobble like I had bricks in my pants down the stairs, round the corner to the loo. Court toilets are never an extremely pleasant experience, but I won’t bore you with that.

By the time the day was over I had avoided several natural disasters and learnt a real lesson. While I was in agony with my IBD and the urgency and pain often led to accidents, I could often cope even though it meant me almost passing out with pain until I had a chance to reach a bathroom – with my ostomy this is not the case. There is no grin and bear it. Yes the pain is considerably less, yes the blood is there but it isn’t by the bucketload, but no I can’t stop the flow or ease the pressure when its started…if I wait, sooner or later she will fill up and then, eventually….BOOM! (now that would be a story)!

I will have to learn to cope with it. I love court reporting and I love my job, but I have to keep a close eye on things and remember I’m no superwoman, I’m still human…and, well, Winnie is just a stoma bag she’s not a miracle worker.