2 new conditions and whats been going on?

The Current situation.

It’s been a while since my last post. Things haven’t been going well! I wanted to wait until I knew more before putting it out there. 

It’s going to be quite a long one so keep with me if you have the time.…

In April I lost my job. 

It by far made my current condition a lot worse. 

As I have bills to pay and suddenly had no form of income. I worked and batted with my health for a whole year with the crohns and my other problems. 

But in the end I lost my job over a nasty bout of tonsillitis. It wasn’t my choice, I would probably still be pushing on with working. But after months and months of illness, the recurring tonsillitis was clearly the final straw. 

Understanding when you have a business to run. I’m not exactly the perfect employee due to my health! But that is out of my control. I work very hard when I’m well enough and will go above and beyond. 

The following weeks led to what I would class as a flare but my blood work says otherwise. This seems to happen often, in that my blood work is spot on but my symptoms are terrible!

So, here I am, unemployed and in a current state of health which leaves me completely unemployable. My task is now to get myself well enough to become employable once again.

My medication was withheld due to all the infections I was getting as it effected my immune system too greatly. This means I now haven’t had any Crohn’s medication for 6 months. Luckily the medicine is designed to last that amount of time but the dosage will gradually wear off and symptoms creep back in. I’m now just a few weeks of finally getting another dose. Thank goodness.

I have a diary which I fill in for the hospital every day. It asks how many times I’ve been to the toilet, abdominal pain rating, generally wellness rating, temperature and any medication taken that day.

Its gone from being a once or twice a day to the loo with minimal pain and feeling good with no additional medicine to going to the loo 5-15 times a day…. Yes up to 15 times… It’s exhausting. And having to take additional medicine more and more.

I’ve been getting ill in the night again. Usually around 3am I wake up with the immense urgency and have to literally leg it to the loo. I will then yo-yo to and from the bathroom up to 4 times in an hour feeling sick, shaking, dizzy and weak. Before taking anti-sickness and pain medication and waiting for them to send me off to sleep again. This can happen 4 nights in a row at times. But every so often I will go a week without a night episode but I can absolutely guarantee it will happen again.

My quality of sleep is poor to say the least. It’s really bad but I rely on my migraine medication, Amitriptyline to get me to sleep. Without it I will be lying awake literally all night. I will then sleep for up to 14hours and wake up with a medication ‘hangover’.

Upon waking I am achy all over, hurting from head to toe. I have to then go and sit down on the sofa for a good hour before I have ‘loosened’ up enough to be able to function semi-normally.

Some days the pain doesn’t ease and I feel like I’ve been bulldozed all day long.
To the point I need help with getting showered and dressed. And also help getting up the stairs and getting to bed. There are times I can’t hold a kettle due to the pain and can’t even brush my own hair. And days when I’m simply not safe enough to drive. 

For a 24 year old woman, having to rely on someone to help you do normal things knocks you big time. I can’t even describe what the pain feels like. It has me rolling around in tears at times because there’s no let up. My boyfriend has even had to come home from a nightshift for 15mintues to help get me to bed. Thank goodness I have him. Id be so lost without him. 

And believe me you don’t know fatigue until you have to rest before AND after taking a shower.

Going to get a shower is a normal daily task. But for me, this daily chore is draining. Washing myself, drying myself, drying my hair, styling my hair, make up and then getting dressed. I sit on the bed after a shower every day mustering up the energy and strength to get ready. God help me if I have an appointment or a time to get ready by.

I don’t understand how I managed to work full time and keep on top of all the house work and other daily tasks and do it for so long. When I wake up these days I have to weigh up important tasks and less important and spread it over a few days. When I hoover, I do upstairs one day and downstairs the next. Both on one day is out of the question.

If your still reading this, and you’re not someone with a chronic illness. Please do not take for granted being able to get up at 7am and still be able to function and not be in agony by 10pm. And going on holiday and going for days out every day…. You don’t know how lucky you are.

Following all of this and more which I haven’t gone into, I decided enough was enough. My crohns is always under treatment but the rest of me is struggling and has been for years! I went to the doctor and she listened and referred me to a Rheumatologist.

I have now been diagnosed with Fibromyalgia which is a chronic wide spread pain condition. It is diagnosed by pain points on your body. 18 pain points. 11 or more is a firm diagnosis…. I scored 18 out of 18. Head to toe wide spread pain in the muscles, tendons and ligaments.

Explains a lot….

I was also diagnosed as Hypermobile. I scored 5 out of 9 on the Beighton scale. Which is how it is measured. I don’t have it severely but enough to cause me daily symptoms and pain. Also linked to the Fibromyalgia.
With increased flexibility you are also more susceptible to dislocation. As the joints aren’t supported as well as in a normal healthy person.

I was told I have dislocated my left knee in the past. I had no idea. But with this condition it isn’t like a normal dislocation where your joint is ripped out of place. It just kind of pops out as it isn’t held in properly.
I know someone with it who can pop their hip out on command... although it is hugely entertaining and makes us laugh at how freakishly bendy we are, it also isn't good!

I was told to take codeine for pain… But any one with crohn’s knows that this is BAD. So I'm stuck in a vicious circle. I’m in pain, so I take codeine… and then my crohn’s flares because of it.

I am still learning about my 2 new conditions. But I only have them, because I have crohns.

I literally can’t win.

7 years and counting

7 years ago this Easter, I was diagnosed with Crohns Disease, It has changed my life, in some ways for the better but overall, definitely for the worse.

I'm turning 25 this year and my life is in no way how I ever imagined it to be. I never went to university. I never even completed college. I've never been on a night out that wasn't in my home town. I can rarely plan ahead further than a few days, and I've never been on holiday without my parents or a friends parent.

This is by no means self pity. This is my life. And like it or not, I've had no choice but to accept it.

Being diagnosed with a chronic illness at such a young age, has shaped and formed the person I am today.

I have a strong stomach now, where as at 17 after a paper cut I'd need a lie down, and watching casualty was NOT an option. 

I also don't fear needles anymore. Hell if I did my life would be a constant battle. Just to get my medicine involves 4 needles at a minimum. 

It has also left me with anxiety and serious trust issues. 

In 2013 after a few years of remission following surgery and an ileostomy which has since been reversed. My symptoms started to return and pretty soon I was going to the loo and nothing was happening, except filling it with blood.

Which as you can imagine is extremely distressing for anyone.

I had a colonoscopy following a few tests (which showed my crohns was actually still in remission) to find out some answers.... and there it was. Crohns was raging and flowing through the last 6 inches or so of my bowl. 

Its now 2015 and I'm taking part in a medical drugs trial. I wish I could say it was going well. 

My crohns is in remission (So it definitey works) but as it suppresses my immune system I have been unwell with a string of infections since Christmas, as I'm writing this I have full body aches, a raging fever and tonsillitis!

Every day at the moment is a physical and mental struggle. Just getting up to walk to the bathroom in a morning takes it out of me. My life seems to run a pattern of work.. get sick,,college.. get sick.. work... get sick and so on. 

I dont go out, I dont socialise. If I'm at home, it is to rest and to gain as much energy as I can before I have to get up and go again. 

It is draining and sometimes I wonder whats gotta give. Cause eventually something has to. 

I see the strain it puts on my boyfriend and family. I shouldn't have to be helped to get dressed because I'm too weak to do so. Nor helped to get up and into bed because I'm completely drained.

I know it annoys people that I'm always sick, and sometimes probably comes across as an excuse to get out of something. And I bet people think, 'here she comes again, wonder whats wrong this time!'. I'd feel the same and I've thought that about people who are ill too. People have their own issues and problems.

Crohns is an invisible illness. Just cause I've curled my hair and I'm wearing makeup doesn't mean I'm better. It means I had a little more time that morning to get ready!! It's whats going on inside that's the problem!

I don't know whats around the corner or what my life will be like in 7 more years.

I'm just happy I'm still alive, and have my loved ones around me.
Life is too short..

So for now, I'll try to carry on, and smile as best I can.

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.