An open letter to my CROHNS DISEASE .

Around 9 years ago you came into my life and I had no idea what you were or what was about to happen to me

You came into my life and turned it upside down - you knocked me off my feet and I didn’t know where to turn. You made me not just physically ill but mentally and emotionally ill too for such a long time.

I’d like to say we were friends from the start but we both know that was far far from the truth.
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I was lonely, I was terrified , you had isolated me from my family, my friends, from being a mam (the one thing I'd longed to be), from stopping me from working and ending a career I had trained for for so long. doing those “everyday” things that I used to be able to do I could now not pursue.

I hated everything you had done to me, I hated myself, I felt guilt and resentment - I didn’t even recognise myself, all I could see and feel were pertruding bones popping out, I couldn't even bath myself. You took my womenlyness away from me

The pain, the fatigue, I lost count of the amount of toilet trips.... countless medications, embarrassing tests and many hospital trips.

You had changed my life forever.

Things haven’t been easy over the years - we’ve struggled to find the control and you’ve kicked off more times than I can count.
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Not everyone understands just how much you can change someone’s life. They can’t see all those things you do.

It hasn’t always been easy but now I feel like I’m in a place to accept you a little better and all the changes you’ve made to my life. I mean I'm good at getting blood drawn now (apart from the majority of my veins now aren't in use), I've learnt the skill of being able to do things in pain, I can beat the marathon in sleeping and TV watching, I know the best heat pads to buy, I have a bloody lovely collection of pjs and Loungewear and I've learnt to take everything as it comes, be greatful for every moment, appreciate the right people, rest when I need to no matter others judgements, I can council myself to get through bad situations and down days (mainly by sleeping!) and most importantly I've accepted I can't cure it or change it and there's no magic pill to cure me so I've just got to accept what it is and face each challenge as it comes.

you’ve also introduced me to the most wonderful community of people and given me some of the most amazing friends. Including someone who helped and inspired me to right this from his words.

I have not wrote this for sympathy or pity or even judgement (which I know people do). I've wrote this as it's national awareness day. Before being diagnosed I had never heard of this disease, and gor the first few years after diagnosis for a long time, I felt ashamed to discuss my symptoms etc. I want to break that taboo and help others realise that it's nothing to be ashamed of, our bodies attack themselves for pity sake... My opinion that's a pretty cool super power. We need to talk to break down this stigma. Everybody goes to the toilet no matter who they are!

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Less than a year ago I was 6 stone, skin and bones, hair falling out, and I couldn't eat, I was fed through a tube in my neck whilst waiting for an operation between St Marks specialist bowel hospital in London and freeman's Newcastle . Less than 8 months ago my bowel had finally had enough of fighting and one Sunday evening my small bowel burst open whilst at home, it perforated. Sepsis shock ran throughout my body and I was pretty close to death on my bed awaiting a paramedic. Once at hospital my surgeon was called in from home Mr Osman. He was blunt and had no other option. He told my mam and myself that he has discussed it and they will take me to theatre however he doesn't know if I'll actually come out of theatre Id gone past the point of ill. 

1.05am on a theatre bed in a new theatre with freshly painted walls, I looked up at the clock. 1.05am precise. An abundance of staff around my bed... I got the energy to grab the anaesthetists arm and look him in the eye, I begged him to save me, I didnt care what he took from my body just keep me alive for the kids. I knew no more till 11am ish the following day when I awoke in intensive care unit..... alive, and with the most beautiful and neatest of scars from the top of my abdomen to the bottom (with a few littler ones added in). They'd saved me. After that I've realised crohns can throw what it wants at me... I'll kick it's arse all the way.

No its not the Oscars lol... But Lastly I just want to take this moment to thank in particular my life saver.. My surgeon Mr Osman (to whom my scar is named after... Ozzy!) without him I would not be writing this now , his team of theatre staff, the icu team, all of ward 32 at Darlington memorial hospital ,the dieticians who beefed me up, the physios who got me walking, and last but definitely by no means least... my amazing team of miracle workers my gi consultant.. The legend that is professor Dhar, and his team including Linda crissop and especially my guardian angel my specialist nurse sue Ritchie.

I'm not out the woods yet and more surgery possibly awaits. My operation didn't put me in remission like we hoped, and my latest tests show uts returned and spread yo the larger bowel too. But im in the bestest of hands 👐

I’m not scared of you as much anymore, you try to control me and at times you still do, but I'll never give up fighting you. Even if some days the pain and fatigue is that bad I wish I could end everything my life the lot! . But I've got an amazing family, partner,children and a few close friends who keep me on track

You are a part of me but not all of me.

 I'm going to encourage others on their journey that they shouldn't be afraid of you either.
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I'd like you to know that if you’re struggling right now you’re going to be okay - we’ll get through this. 

#ibd #crohns #colitis #ulcerativecolitis #crohnsdisease #inflammatoryboweldisease #ittakesguts #crohnsandcolitisuk