Since my last post, I've been admitted to hospital...
I was asked to go in for tests and treatment for a 'moderate flare' of Crohns disease.
Purely due to the blood loss I had every day.
I was expecting to be tested to find out for definite if it was the Crohns.
I say this, as my last flare (before surgery) I never experienced blood loss. I was incredibly sick, but never had any blood show.
This FEELS different. My gut instinct (ha) is telling me this isn't just a straight forward thing.
On my last appointment my CRP was at 7.
On admission ( 5 days later) it was at 51.
Huh?!?!!? What on earth?!
I was expecting tests done right then. But oh no.... steroids is the only answer!
Lets fill her with them! Lets leave her on them!
After sitting in hospital for days they sent me home on them.... Having only had 1 blood test done, on admission...
A week later I saw my consultant.
Colonoscopy is finally booked. When for... who knows?
Can you get where this is going??
Firstly, how are they supposed to scope me to see whats going on if they're suppressing whatever it is with steroids, then putting me on one of those drugs?
Logical order should have been...
Course of treatment confirmed.
But no...None of the above have happened apart from the first two.
I just want to live my life! I don't want sympathy or people feeling sorry for me. I want to be healthy and happy.
I was told today that to start on this drugs trial, they have to screen me. For this I need to be poorly.
I need to stop the steroids.
I said, so really, you need me to be as unwell as possible to do this? Yes is the answer.
Why cant anyone understand that all I want is to get on with my life?
Give me a damn drug that will work long term and not screw me up, then leave me be.
My head is so scrambled from these tablets, I'm certain this makes no sense.
I have more to say but today isn't the day.
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?
Since my last post, my 6mp treatments been stopped... well in fact... all treatments been stopped.
I began feeling really weak, all over the Christmas period. Kept myself going, carried on as normal.
I went shopping, wondered around getting last minute Christmas gifts and so on, feeling increasingly unwell as I walked around. Weak, sweaty but cold, almost faint and like I was drunk but stone cold sober.
This carried on and got worse... and worse.
I then began to feel unwell in myself, like I was poorly with a bug or something, but had no symptoms other than fever and sweaty but cold.
This went on and on.
New Years Eve. Spent it on the sofa, feeling incredibly sorry for myself, in my Christmas onesie.. as you do.
Midnight came and went and I went up to bed about half 1.
Still awake at 2...
Started sweating and shaking, to the point where the shakes became full body tremors and couldn't speak. Couldn't see, felt faint. Legs swollen like balloons, stiff, heavy with prickly feeling skin so sore clothes hurt.
WHATS HAPPENING TO ME?!
We dialed 111 to get some advice on what to do.. She took my details and talked to me until the tremors took over and I threw the phone at my boyfriend in a very dramatic 'I'm dying' style, panicking and freaking out, shaking... you get the picture... He talks to her for me and she says.... I'm sending an ambulance for a suspected allergic reaction to your medication.
Oh, My, God.
The crew arrived, and they were brilliant, they did an ECG, blood checks etc, checked me over and said I was tachycardic, and they're taking me in.
They came from somewhere that would usually take 45mins or so.. and got to the house in 15minutes, lights, sirens the works. They were incredibly efficient and made me feel safe. But definitely annoyed the neighbours!
I was stopped from taking the 6mp, and told they should work their way out of my system.
Chemotherapy tablets make you feel like absolute crap! Approach 6mp wisely, those of you with Crohns reading this. I thought I'd be ok...
I was back in hospital 2 days ago because of how poorly I've become. Think I'm over the worst of it now...hopefully. Still fighting off the side effects though.
I'm now not on ANY medication for Crohns specifically.And that scares the hell out of me!
I'm awaiting an appointment with my consultant and were going to come up with a 'plan'.
I'm sick and tired of living in fear of my own body and not having any control over it. I wish I knew what it was like to wake up and only worry about the traffic on the way to where I was going...
If I were an animal... I'd have been put down years ago.
My last post was along while ago, I always wondered why there was never any positive stories online about Crohns and Colitis....Turns out its cause they were out there trying to make the best of it.
That's what I've been doing.
Or trying to do.
I've had a few hiccups, some trips to a&e, and changes in medication.
Facebook friends have seen my rambling status' and probably wondered what on earth could be wrong with me now?
I won't even get started on those so called 'friends' I once thought cared. Second chances aren't worth the hassle!
2013 has been quite the year!
So, here I am now.. wide awake at 1am having survived all day off 3 hours sleep last night, suffering extreme nausea and tiredness like I've never felt before.
I've just started a drug called 6MP (Mercaptopurine)
This is a chemotherapy drug used to treat acute leukemia, but its also beneficial for the treatment and remission prolonging in Crohns and Colitis.
It's similar to Azathioprine which I've been on since diagnosis.
Starting this 6mp has made me feel like rubbish. I'm achey, sore, exhausted. Feeling sick. And it's only been a week.
1 more week and I start the fortnightly blood tests to check for bone marrow toxicity, inflammation and general blood levels etc. I'm not going to go into detail on it, if you wish to know more then feel free to google it!
I'll leave it here for now, I will post more. But this will do for now, bit rusty at this blogging stuff now!
Ok, so this is going to be a pretty rambling moaning post, I just need to vent how I'm feeling.
I'm sick of being inside, I know I'm only 2 and half weeks post op and I need to be resting and whatever.
But I am the most impatient fidget EVER. I can't just lay about doing nothing.
I've ventured out twice, only to the super market and its left me drained both times.
Why is it doing this!? My body just seems to shut down.
Also I'm turning into a paranoid wreck.
Leg cramps, I freak thinking it's a blood clot.
Stomach pains.. crohns.. which I'll come onto in a minute.
Another thing is my Mums new job. I'm so happy she got it and is enjoying it, cause I know how much she enjoys her job. But in her old job she only worked mornings, in this one its all day. So I'm on my own all day, every day. I don't mind my own company, but I'm getting kinda sick of myself to be honest.
Also my wounds gone all funky, the nurse said it's looking 'snuffy' meaning starting to look a bit infected.
This is what it looked like the day before it went 'snuffy'
We took the dressing off to discover it has been bleeding...
So, you know the drill DONT LOOK DOWN IF YOU DONT LIKE GRAPHIC WOUND PICTURES.
Gross isn't it.. You can imagine my reaction when I saw it..
I also received my discharge letter from my February admission.
It said abdominal pain, bleeding, sickness and not eating or drinking.. diagnosis... Crohns disease flare up.
If I had known that 4 weeks ago I would NOT of had a reversal.
I'm kind of feeling a bit miss informed as I thought it was adhesions..
I've had pain all day today that feels awfully familiar.
I'm taking all my medication so it's not that I'm being careless or whatever.
I'm scared and again, paranoid. I'm barely eating cause I'm scared that whatever I eat could trigger it off.
And when I do it it's low residue, strictly low residue like my lunch was waffles and gravy today...
Cause although I had surgery to remove more than they thought....
There, thats me! My MRI scan from last week. Thats all my remaining colon and the bottom of my liver. There are 457 pictures so I just chose this one for this haha!
But yeah although they cut out more than they thought I still have crohns and colitis in there....
So I'm one cheese burger away from pain and puke..
I'm even scared of drinking my morning coffee at the moment!
I just let everything get on top of me. It's a good job I'm on anti depressants so the full weight of how I'm feeling is numbed down a bit cause I dread to think of my mental state if I wasn't on them.
I just feel like strangling whoever asks "are you ok?"
The title 'never by halves' is what my Mum said to me, "you never do things by halves do you"
Less than 10minutes of writing my last post I had to go to hospital.
I managed to hold on for my surgeon and went to see him at 6pm.
We initially thought my join was leaking.
But it wasn't that, but I had concerning symptoms and really wasn't well at all.
He tried to touch my tummy around the wound and I yelped in pain.
He couldn't even lightly touch the skin.
He admitted me then and there and walked me upstairs to the ward himself.
A new doctor came called Stavros, first name terms for reason I am about to tell you.
I had so many injections, blood tests and IV's that I have no veins left. None.
This poor doctor took 4 attempts at getting blood out of my arms and hands.
Half success but the blood just dribbled out. They couldn't find my pulse either.
"am I dead" I joked to the nurses.
They had to call an anaesthetist down from theatre to get my bloods done.
Typically being who he was, first attempt was a success, he couldn't see the vein but he could feel it.
"It's a blind shot but worth a go" he said to me.
After that it was waiting for the results which were rushed off to the labs.
I was given pain meds as my temperature was really high. And I'm well known for never having a temperature when I'm ill, I have to be seriously poorly before my temperature goes up!
At about midnight the nurse came in and said I was booked for an emergency CT scan for the morning.
The next morning I waiting and Mr B (Surgeon) arrived back. My bloods were showing up some things that indicated infection and a few other things so a CT was definitely needed.
Down in CT I layed on the table and they tried to get a vein for the dye and drip to help whatever it was show up on the scan better... They looked at my arms and hands and all the bruises and said the "oh you poor dear, oh thats awful, your a pin cushion" They had one attempt and failed.
Stavros was called again. I asked the nurse if it was him who was coming and that my veins really annoyed him the night before. He walked in and rolled his eyes, wiped his forehand and said "hello Miss Gibbs, I've been dreading seeing you again" 40 minutes later he was still trying and failing to get a vein.
In the end they gave up and said they couldn't do the CT without the dye but could do an MRI.
I hate MRI scanners, I'm so claustrophobic. I lay on the table, they placed the boards on me and tied them down. Placed the panic button in my hand and I was pushed into the dome. 45minutes later they pulled me out.
I asked if they could see anything on the scan and they said they could see the parts of intestine I was missing and could see whatever that 'tennis ball sized lump' was.
Mr B and a radiologist analysed the results and decided I had an infected hematoma. Otherwise known as a blood clot.
The one thing I'd been freaking out about and making sure my legs weren't crossed and I kept moving. I got, but in my tummy not my legs. It was in the muscle tissue layer so not deep inside. They put me on some strong antibiotics to help it and if that failed then it was either a big needle into my stomach to drain it or surgery.
Luckily the antibiotics are working so far.
Mr B came this morning and had a look at my wound, asked for a big swap, the nurse said "I swabbed it yesterday" he said "I know, its not for swabbing its a pokey tool" he looked at me and said "Sorry, I'm a surgeon, poking is in my nature"
I grabbed my Mums hand and he poked it. He wanted to make a path for the blood clot infection to get out. He managed to ram this stick half way inside me. So far in it got to the point where it didn't even hurt anymore. It just felt horrible! He said he could feel alllllllll the way down. Gross.
He then gave it a massive squeeze, which hurt but shows the antibiotics are working as he couldn't even lightly touch the skin the other day.
I'm home now, and feeling alright, it's still very painful. I'm annoyed that this is going to hold me back from flying for a little while. But as soon as I get the all clear I'm on that plane to Ireland!