Dear Ulcerative Colitis

Dear Ulcerative Colitis,

Well, what a journey we have been on!  Eleven years ago, you crept into my life with bleeding, diarrhoea and pain.  You were not a very welcome guest and so I ignored you.  You sat there in my guts getting angrier and angrier, your furious rage spurred you to make me so anaemic that I collapsed.  As I was taken into hospital in an ambulance with blue lights flashing, you were giggling to yourself, knowing that soon I would know your name and I would never be able to forget it.

We were introduced at the beginning of 2004, I knew nothing about you.  I googled you like a new girlfriend, trying to find out a little more.  The words blurred on the screen as tears filled my eyes when I read about the things you had done to others and what you could do to me.  I was 22 with two kids and ready to get married yet you suddenly filled my world.

You became the barrier between myself and everything I cared about.  You stopped me when I wanted to play with my babies, you laughed as you sat in-between my husband and I in bed, you revelled in your ability to stop me leaving the house and seeing friends.  You became the lump in my throat when I couldn’t bear to speak the words of ‘accidents’ and ‘soiled underwear’.

As the years went on, I learnt about every weapon I could use against you, my invisible passenger.  I learnt the names of the drugs that I hoped would kill you.  I took tablet after tablet, living with the side effects of medication that was almost as much of a twat as you are.  I ingested meds that reduced my immune system so much that I caught every bug going.

When I became pregnant with my third baby, you seemed to not want to share my body with my precious boy.  You made me thin and weak, you made me bleed so much that the doctors were fearful of my ability to deliver him and I had to have blood pumped through me to make sure we were ok.  But I make strong babies, babies that can kick your arse and when I delivered my boy, you were the last thing on my mind.

Eventually, in 2013 I learnt about a way that I could finish you off.  It was drastic but I hated you so much that I found the courage to stand up to you.  I gathered a mighty NHS team behind me to cut you out of my life.  I donned my armour that strangely was left open in the back and came with stockings…  With scalpels instead of swords, my team fought you.  They couldn’t get rid of you, so instead they took your home.  My colon was cut out, taking you with it.  No home, no you..

I awoke from this battle, wearied and worn.  My battle scars were patched up and my team surrounded me, telling me that you were gone.

I looked down to my body and gently touched the ileostomy bag that was attached to my stomach.  A sadness struck me but was swiftly replaced by a feeling of pride.  I had stood up to you and battled hard.  My bag was a symbol of this.  It showed that I was tougher that you, I wasn’t scared of you, I won you…

Months later my NHS team of awesome reconvened at the battle site, these wonderful people patched me up and reattached my small intestine to my bum ridding me of my bag and giving me a jpouch.

Over these post battle months I have realised that to beat you personally, I not only needed to find something special inside myself but that I couldn’t beat you alone.  My NHS team were those frontline soldiers but I needed to look around me to find a team that would help me with the massive changes.  A team who made everything easier by listening, by loving, by never judging.  A team who made that lump in my throat disappear, who made me know that I could say anything about you and they would still love me.

I am learning a new way of life now you are gone.  Oh, Ulcerative Colitis, you are gone in me but what no one tells you is that your absence leaves a whole host of other issues.  But having fought you and won, I know I can face anything else.

People think when you win, it is because of your physical claws in the guts of sufferers.  But in reality you win when you create the lump in the throat.  When you silence your victims like a parasite, whispering in their ears that you will humiliate them.  And so I am here to tell you… I won’t let that happen.

I won my own personal battle but there is a war to be won.

I will fight you every step of the way for the hundreds of thousands of people in the UK that you live with.  I will fight the lump in the throat by shouting from the rooftops about you.  You WILL NOT hide as an invisible illness while ever I have a voice.

I will talk about you.  I will #stoppoobeingtaboo.  I will talk about your awful ways.  I will never stop.

I will raise money until there is a cure.  I will support Crohns and Colitis UK.  I will fight.

Ulcerative Colitis, you think you know me because you lived inside me for so long, but you are mistaken if you think me weak.  I am powerful.  I am strong.  I am your worst fucking nightmare.

 

Watch your back Ulcerative Colitis, because So Bad Ass is coming to get you….

 

Sam x