A letter to my Crohn’s disease: I’m taking back control

I’ve never had much luck with my health. I was born with a very rare condition called trachea esophageal fistula.

Basically my trachea wasn’t how it should be and I needed life saving surgery as soon as I was born.

After years of having hospital trips and check ups little did I know the worst was still to come. Crohn’s disease. This is my letter to you.

Dear Crohn’s disease,

Just over 2 years ago you crept up in to my life and completely knocked me down. You took me by surprise as you took over my body and everything I was.

I had no idea what you were but I knew you were there, trying your hardest to claim your next victim.

You made me scared and frightened, as I bled from places I shouldn’t and experienced pain like nothing I had before.

Then I found out your name and it scared me even more, Crohn’s. This was the first time I had ever really heard this word, and I knew nothing about it..

“You laugh at me on a daily basis”

You laugh at me on a daily basis as I struggle to even get up and look after my children when all I want to do is stay in bed and hide.

You snigger at the heartbreaking arguments you cause between me and my hubby to be, my soul mate, my rock.

You make me depressed, lonely and you make me want to shut the world out. I begun to resent everyone who’s ‘normal’ – as I long to be like that again, even if I could for just one more day.

You have taken over my whole life. You’re the first thing I think about when I wake up and the last before I go to sleep.

You’ve taken my confidence, my energy and my will to fight every day just to have to endure painful procedures and horrible medication with nasty side effects.

How many 6 year olds do you know that when asked ‘Where’s mommy’s favourite place to be?’ replies with ‘The hospital’?

You have stopped me enjoying my life and my children’s youth.

“You have stopped me enjoying my life”

Things took a turn for the worse as I spent most days bowled over in pain in the bathroom, frail, tired and angry.. Why me?!

 I was admitted to hospital for weeks of total hell, trying and praying for the endless X-rays, scans and blood tests to show some improvement from all of the steroids and infliximab which was given as the last resort as there was nothing else left to give.

Then I heard the dreaded words from the doctors.. ‘There’s nothing more we can do for you.’ All medical options we have, we have tried and they have failed, you need an emergency operation to remove your entire large bowel as the inflammation is getting worse and your bloods are rising.

I was devastated, lonely and defeated. I’ve never been so scared in my entire life, I’m 26, how is this fair?

I went ahead with surgery and slowly started to recover each day and finally, I was allowed home a week later. My family have been amazing and rallied round to help me loads with child care and helping me out at home.

And then I realised. I realised that yes I’m 26, I feel too young to be fighting this everyday – but I nearly didn’t make it this far at all, I nearly didn’t get to come back home to my kids and family and for that I’m forever thankful that I have the chance to play with them, watch them grow and teach them right from wrong. 

“I am still here”

I have the best support from my family and rock of a husband to be, he really is one in a million, and I’m lucky to be alive!

And I am still here, and I’m finally getting my life back step by step.

Each day I have to fight makes me stronger in my own way, I will gain my confidence and my energy back and I WILL enjoy my life. I will learn how to cope with you and I WILL win because losing is not an option.

I know I will probably have to endure some more procedures along the way but what happens I will get through with the support I have from the best family I could want right by my side.

You made me lose my way for a little while but know this: From now on, I’m in control of my life. Not you.

I refuse to sit back and let you kill me. 

Words by Sophie Wesley

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