Admitting the fight.

Tuesday 3rd of June I had my first doses of AMG181.

Was it placebo? Was it a dose? I don't know. This post isn't about that, as there's not much to report yet. I wont know if I have the drug for a few weeks yet.

I'm going to be brutally honest in this post. I'm sorry if this hurts anyone, I'm doing all this to hopefully offload some thoughts that keep me up at night.

The other day, I sent the trial nurses (whom might I add, are absolutely amazing) an email. It was asking for help. Which I don't like to do usually.

I started the email with a simple, 'I feel worse than I have in ages'

I went to the doctor Friday, and had a complete melt down. I didn't realise how much the results of the colonoscopy had effected me.

I cried, and sobbed. Letting everything I'd been holding in, out. Right there, in front of this stranger.

My joints hurt, my bones hurt, I hurt. Please make it stop? At 23 I don't want to lie in bed at night with throbbing legs and burning hips. I don't want to find it a struggle to get out of bed to go to the loo, and to pull on my dressing gown.

I'm struggling with exhaustion. Why am I so tired? I've always been tired with the crohns but never like this. Never to the point where its unsafe for me to drive. never to the point where I walk into things and drop stuff. Let alone forgetting simple things.

My work are so supportive and understanding of my illness, I'm very lucky to have that support.
But there's a niggle at the back of my mind that, there's only so much any one person can take from an ill person. I know that better than anyone.

I'm behind on my College work. Its my last assignment and I have 10 flower identities to remember. But due to my terrible memory at the moment, I literally cannot remember them. I've had these for at least 4/5 weeks and I just cant get it

I'm not gonna lie. I am worried.

We've had to get a cleaner. Because I just don't have the energy or level of care to complete the tasks that make life easier for myself and my boyfriend.

When did I stop caring about myself?

When Crohns returned.

When I started to fear eating again.

When every time I go to the toilet there's blood.

So much blood. All the time.

(Just a side note, as I write this, my back is hurting me, it feels like elastic bands pinging all over my back.. WHYJGRIOVNIVNDCMK!!!)

Things were easier before when I was ill. I didn't have bills to pay. I could afford to sit at home and be ill in peace with my Mum caring for me.

There's a line in my email that brings a lump to my throat every time I think about it, say it or type it.

I'm really struggling, I don't know what to do. Please help me.

It then reads

I feel really alone in this... even though I'm not.

My family are amazing, as is my boyfriend who cares for me daily.
Katie, is a friend who I know if I needed her, she'd bend over backwards to help. Shout out for you Katie!

I wish I could say the same about other 'friends'

My internet 'friends', are always caring, messaging and helping

I've not received a single text or call, or visit from any one who lives within a 10 mile radius and classes themselves as a friend.

At the time in my life when again I need all the people in the world.

I couldn't feel more alone.

The last line in my email says,

The thought it could be weeks until I feel better scares me. I don't know how I'm going to keep up the act that I'm doing ok, and that even though I feel bad Ill say I'm ok.
When I'm not. I cant do this.

My consultant is calling me Wednesday to discuss how they can help me. I've never asked the hospital for help before.

Found out today my calprotein is still very high. It should be 50 or less but mines currently chilling at 335. Does that give a picture of how rotten I'm feeling?

I keep having melt downs, where I start crying and fear I wont stop.
They've even started happening in public places.
In front of people I don't know, and whom don't understand.

But then again. None of you understand.
We may be united in illness, some of us.
But at 3am, when I'm doubled over the toilet, feeling sick and bleeding, who's there to hold my hand and tell me it will be ok? No one.

I've cried my way through typing this, and you probably all think this posts silly but this is the way I choose to lay my feelings down.

I'm not gonna lie.
I'm really struggling. I don't know what to do.

Colonoscopy

I'm starting this 'extention' of my original blog. I figured that was 'part 1' of my battle.
Surgery being the ending point of part 1.

Today, 31st May 2014. I consider Day 1 of part 2.

Yesterday I had a colonoscopy. It wasn't a pleasant experience.

It all starts the day before where your presented with having to take 'prep'.
This consists of starving yourself and taking multiple strong laxatives.
Glamorous huh?
I took 2 Picolax and half litre of Moviprep.... half because I wimped out on the rest! Ick!
Your meant to eat orange jelly but I couldn't stomach anything.
I had no food for 48hours.

I felt so unwell by 11pm. Banging headache due to dehydration. As fast as I was drinking it I was losing it.
It was horrendous.

Woke up at 7.30am ready to head off to the hospital.
We had to pull over on the by pass so I could throw up...it never happened but it came close.

I was incredibly pale, weak and feeling terrible.
My wait out in the waiting room wasn't long and I was taken through.
They took my blood pressure and pulse, which were low so they got me into a gown and onto a bed where I lay for an hour and half waiting my turn.

I slept.

A nurse woke me and told me it was my turn. They pushed me through where I was greeted by my consultant.
He told me he'd look after me and it'd be over in no time.
He asked the nurse to prepare a double dose of sedation, which he administered while telling me to relax, it will be ok.

That stuff is AWESOME. I felt so relaxed, I honestly couldn't have cared less what happened from then on.
He gave me the second dose and a muscle relaxant and he then, uhum... put the camera in.

It was incredibly uncomfortable.
Inflating me with gas to make the way through, he said it was very inflamed and angry.
Watching the screen it seemed surreal to think that, that was my insides on that screen.

Its all a bit foggy, except for the ending of the scope.
As that's where the issues are, I found it so painful.
They told me to hang on, I was doing well, it will be over soon.
Best way to describe it was, it felt like sandpaper.

They then kept asking if I was ok, was I still with them and don't I go fainting on them.
I later found out that was because all my vitals dropped.
I didn't think I felt faint, it just hurt!!

Finished. Instant relief. I don't remember anything then, I must have fallen asleep.

Results;

It was healthy in places but then unhealthy in others.
Blood, pus, mucus and active Crohns were present in patches throughout.
Specifically from the rectum and 6 inches up to the sigmoid colon.

I don't understand how its got so bad so quickly.
Cant help but blame the hospital a bit for not giving me any medication for so long.

It feels daunting not knowing what the future holds and that due to the position of the disease, there is a real possibility of having a permanent ileostomy at some point.

This isn't a problem as such. Having already had one.
It just makes it seem like all that fighting and battle with it all before was a waste of time.
My skin also cant handle stoma bags adhesives for more than a few days.

I should be able to start the AMGEN trial Tuesday 3rd June.

I hope it makes a difference.

I'm scared for my future.

This blog is going to document that.