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I'm 23, documenting my life with Crohns disease. 6years, 2 surgeries and....?

The whole story...

Desperation & Sadness- DRUGS TRIAL?!?!?

Unfortunately this isn't going to be a happy post, but do I ever write when I'm happy?

Easter 2014 marks 6 years that I've been ill.

In that time I've had 2 surgeries, 1 ileostomy, 2 colonoscopys, 4 MRI's, 12 hospital admissions, 1 infected hematoma, dozens of X-rays, thousands and thousands of tablets, hundreds of injections and infusions... and that's just off the top of my head..

6 years on, after 4 years in remission..

I am now, no longer classed as being in remission.

This makes me sadder than you could ever possibly begin to imagine.
It fills me with fear and dread.

What does my future hold?

The inflammation in my blood is low, up to 10 is in the 'normal' range. But 'normal' peoples inflammation should be 1 or below... mines a 7.

I've had a barium follow through X-ray recently (Google if it your not sure) which showed no narrowing.

So why am I so poorly? Why is there pain? Why is there sickness?... WHY is there blood?

I'm having an MRI in 2 weeks, which scares me. They're the worst.
But I'm now desperate.

I want to live my life. I've had enough of this.

Having met with my Consultant, I've had my 6mp stopped.

I am now on NO crohns medication.

He wants me to wait and see what happens, if it gets unbearable I have Entocort to take..

He called this a 'designer steroid',

I've had trouble with steroids in the past, becoming reliant on them. Turning into the Hulk... ya knoooow, all that jazz.

Then, he wants to put me forward for a Drugs Trial.

This new drug has no name.

Just a number.

After a google search I found it has only been tested on monkeys and a 200 people so far.

Now it's my turn?

I sit here reading through the booklet from the hospital.

It will go on for 4 and a half years. With 2 years monitoring after that.

I will be nearly 30 when it ends.

You CANNOT have children on it. Simply because they don't know what it does.. or how it will effect me.
It states it could lead to, miscarriage, still birth or birth defects.

I think the potential genetic risk of passing Crohns on is enough...

This bothers me. I may only be 23, but at some point before I'm 30, I would like to have a family.

I feel that is my purpose in life, I cant wait to be a Mum... I don't want it now... But  I don't want a drug to stop that when I do.

Then there are the risks..

Other than the fact they don't know what it will do to me, period. Or any other Crohns patient for that matter.

They list one possible complication, involving a brain infection, which is fatal.

It also mentions 'death' and 'loss of life' and 'life threatening' all on the same page.


Do I risk everything I have and want on my absolute obsession with being cured?

What are my other options? Apart from more chemo drugs or TNF-blockers.

Why do I have to rely on drugs to keep me well and alive?

Why me?

1 comment:

  1. Maybe try the entocort. It worked for me at first. I was just on it way too long. It is a designer steroid. Supposedly medicine breaks into your system once it hits the small intestine. I would rather try the "devil you know more than the devil you don't know" as in this trial. I say No to trial. If it comes in as mainstream ok'd meds, then go on it. Let someone else be the lab rat.