Curve Ball

Bloody hell it’s all popped off innit?!

In the last few months I have gone from no job, trying to plot ways to kill my landlord, generally meandering aimlessly and trying not to have anxiety attacks in my local sainsburys, to moving house – but still trying to plot ways to kill my landlord- finding and obtaining work, moving from that job to another, starting some voluntary work for Crohn’s and Colitis, being out till all hours seeing friends and generally having an awesome time.

As previously mentioned I was in a bit of a dark and twisty place but things have levelled out… Well in fairness they’ve sky rocketed into the other extreme of being so busy that if I lost my diary I would sit in the road and cry.

So imagine my surprise when I received a quite ominous voicemail from the gastro consultant who saw me in clinic a few months ago stating that there was something wrong with my bloods and that she’ll detail it all in the letter she was sending me.

Cue me trying ever so hard not to freak out and try to deal with it when it came. Not quite successful. If I could have turned up at her house shouting “WHAT’S WRONG WITH MY BLOODS” I would have. The Gastro team are like elusive mythical beings. Where the hell are you when I need to talk to you? Why do all of your numbers send me to voicemail or leave me on the phone for 20 minutes wanting to smack my head off a wall till I realise that no one is going to answer this phone call.

So I had to wait it out, I received the letter and low and behold, my liver is still trying to make a break for it.

I feel totally betrayed by my body. I honestly feel fine, better than fine, God fine is such a beige word, fabulous? No, too extravagant. Great feels underwhelming. Hmm Amazing?

Do you like the really redundant train of thought I’m expressing here? Also that I’ve wasted a minute of your life whilst you read those sentences? THAT’S HOW I FEEL ABOUT THE GASTRO TEAM!

Eurgh. I digress. Apologies.

So my bloods are weird and they want me to go back on steroids.

Ha.

Hahaha.

No. Way.

You’re going to have to hunt me down and stab me with an IV before I willingly put that into my system.

Wait, I’ve been here before… and I ended up with Jaundice and in hospital attached to said IV.

I retract the above statement. Can I please not have Prednisolone and can we try Budesonide please Mr Gastro sir?

Compromise.

Which to be honest doesn’t seem to be happening with my team at the moment. It’s all “Take this or lose your liver” Scenario. “Take this, we know it works” rather than, lets try and restore your liver but in a way that doesn’t turn you into a psychotic dark and twisty hamster. (see this post on roids for an explanation)

So I was pretty sad, then I was angry… briefly considered the denial phrase but with me that involves copious amounts of alcohol so I skipped that and I’m now at the acceptance stage.

It’s all about management and looking after myself. Which if I’m honest, I’ve been so excited by my life at the moment that I haven’t really been taking very good care of myself. Yes, I know that makes no sense as we all know that I’ve been in this place before with my IBD, yes I am painfully aware that I should be better at this. Stop looking at me with those judgy eyes. I see you. Stop it.

I’m only human.

And I’m young. I want to have fun. I want to do things and I certainly don’t want to feel trapped by my condition.

But as a couple of friends pointed out to me, they’d rather me make a few sacrifices than see me in hospital or not even around.

Sometimes you need a friend to give you that verbal smack across your head. I said oops upside your head I said oops upside your head.

I got verbally bitch slapped. But its necessary, and I know its because they care about me and you know what? I’m so damn lucky to have friends who will do that for me.

*sigh*

Some changes will be implemented and I’ll have a chat with my gastro team, if I can find them, maybe I’ll send a carrier pigeon. Maybe that’s the only way they correspond?

I’ll keep you posted.

 

 

Liver Update

Just a quick update, my liver levels have been consistently normal for the past 3 months. This, my friends is exciting news and I’ll be off steroids within the next month. I’m also hoping that because my liver’s had a break from being inflamed and aggravated, that it will be able to fix some of the damage that has been caused. The liver is awesome like that.

Health wise I have been going from strength to strength. I’ve started exercising regularly and have been socialising like a maniac to make up for lost time. Which, now I’ve had my fill, definitely needs to calm down because soon I’m hoping to be in full time employment.

I need to learn to listen to my body properly because I do this to myself every time I’ve been poorly.

I get sick, I take time off to get better, go crazy with things to do and then end up tired and sick again because I just haven’t paid attention to those subtle clues.

You’d think that having lived with IBD since I was 19 I’d finally get the messages, but I’m stubborn and have acquired a few terrible habits such as not wanting to seem as though I can’t do everything that people my age are doing, and also, just not knowing when to say no.

This time round has been the longest I’ve had to take out from work, even after my operations – which seems crazy – but unfortunately, this time round really hit me mentally and so it took me longer to recover.

Going forward my plan is to try and strengthen my immune system/liver as much as possible so that in the next two years I can come off Azathioprine. Some of you may know from previous posts how much I hate being on medication, so the thought of lifelong medication doesn’t exactly fill me with joy. I also don’t exactly like the thought of being on Azathioprine for the next few years. The drug can cause some pretty nasty side effects long term (I’m looking at you increased risk of melanoma and lymphoma) so the sooner I can get off it, the better.

No doubt I will keep you all updated on experiments.  I did try some Ayervedic practices mixed with some Chinese herbs but as I was on steroids as well, I couldn’t actually see if it was doing anything or if it was the steroids just doing their thing. So I stopped. I still have some left over so may try it again, it can be tricky though because the last thing I want to do is try something that will upset my liver and the majority of my consultants aren’t thrilled with the idea of alternative medicine practices, despite finding that they have helped my IBD quite a bit.

I find it can be very complicated, all the doctors I have come across in London, bar one, are very adamant that alternative therapies do not work and have discouraged me to use any. However in Australia I met a few that were quite open to certain types of therapies and as I said above, it really helped with my IBD.

I would like to research a naturopath because some peeps that I used to see in Melbourne were incredible, but I found them through recommendation, which I have found the best way for alternative therapies. It helps to weed out the weirdos and the ones who really don’t actually know what they’re talking about.

I remember once in London trying an acupuncturist who was mediocre at best but didn’t have a reference to compare it to. It wasn’t until I was taken to one on the Gold Coast did I realise the help that acupuncture can be. You can read the post here.

So yes. In short, things are on the up. I still have a long way to go but I’m getting there, albeit very slowly.

Stay well

x

I swear it’s Deja Vu

4.25am

Sunday 27th September

St Thomas’ Hopsital.

Beginning of day four in the hospital. I’ve only had a few hours sleep during my hospital stay. If it isn’t hospital patients screaming (and I mean full on screaming) in the middle of the night for nurses not to touch them, it’s me being sick till all hours of the morning.

That was last night, and tonight I have the dreaded insomnia caused by mass amounts of Prednisolone (steroids)

Ladies and gents, yours truly has got herself into another medical battle.

I have autoimmune hepatitis. A condition where your immune system can’t tell the difference between a healthy cell or a virus. It’s is far too proactive and fights the shit out of everything in it’s warpath. Unfortunately this seems to be my liver.

I was diagnosed in July, once again given the routine of “life long condition, managed through meds, blah blah blah.” Oh hey de javu. Nice to see you, haven’t we been here before?

It’s rare, but can pop up with people who have Ulcerative Colitis. There hadn’t  been any symptoms, apart from fatigue but I’ve always assumed it’s my Jpouch being a bit temperamental (sorry mate) and thought nothing of it. My out of whack liver results only came about because of a routine blood test after I’d got back from Australia to check out my IBD.

There will be more in depth posts about AIH when I learn more about it, and I’ll tell you about my journey so far, because let’s face it, this is me and some pretty retarded stuff is probably going to happen, and I’m sure I’ll get some good stories out of it.

For now I just wanted to check in and make you aware that I’ll be posting more.

Have a nice day lovelies, chat soon x

Reaching An Understanding

Writing about my journey with UC, my last post was about invasive procedures, well, what happens once you’ve been diagnosed? What happens after?

I was given an insane amount of pills to take daily and I got better.  I stopped going to the toilet and I started to live my life again. I trusted that my gastroenterologist knew what he was doing and I put complete faith in him to make me better.

The steroids came in on their little horses and kicked Colitis’ butt. I imagine my large intestine to be like Lord of The Rings and there’s a little Gandalf steroid and he’s all like “YOU SHALL NOT PASS” to the colitis and BAM there’s a massive fight but in the end the medications are victorious.

Yeaaaaahhh.

Wasn’t quite like that because I ended up in hospital over Christmas.

I was back home in London during Christmas break from university and I was told that I had to get fit for the next production I was going to be in.  I went for a run, well I say run, I wasn’t a runner in those days, I just dabbled occasionally. I went around the block and came back home feeling pretty tired and run down. Thinking it was from my lack of running and it being absolutely freezing outside, I ran myself a hot bath and I ended up falling asleep in it as I felt so bad.

Taking myself to bed, I had chills, was sweating a ridiculous amount, and was up every half an hour to go to the toilet. My stools were like water and bloody.

I felt terrible and that night alone I had gone to the toilet 8 times.

By the time I had dragged myself to the hospital the next day I gone to the toilet over 15times.

I never thought that they would keep me in the hospital for a week. I thought maybe an overnight stay would happen because I had gone to the toilet so much and I needed my fluids to be replaced but I never thought it would be over Christmas.

At first I was lucky, ha, lucky to be in hospital you say? Well they had put me in the private ward because that was the only space for me. I had tv!!! I remember being super drugged out on pain meds and attempting to watch pans labyrinth for the first time.

BIG MISTAKE.

If there is any advice I can give you, anything that you will take away from these posts is do not watch pans labyrinth when on mood/mind altering medication.

I turned it off 20 minutes in and essentially slept under my covers because I was so freaked out.

The nurses still gave me hope that I would be out to enjoy Christmas at home and I was devastated when I found out this wasn’t the case.

I was moved to another ward because the one I was in was closing for the holidays. This was just a normal room, but had tiling on the walls and floor, it was cold and sterile. I wanted out. The head of the gastro department came to see me, a tall, thin ruthless man who was adamant that I was not to leave until he was convinced I was better. Telling me that surely my concern should be to get 100% well rather than leave early just for Christmas.

I wanted to scream at him. He doesn’t have UC, he doesn’t have to spend Christmas in the hospital, he gets to go home and spend it with his family. How is he meant to understand?

I found that I couldn’t leave because my potassium levels were seriously low and they had to be stable before the doctors would entertain my notion of leaving.

Christmas eve, 15 minutes before the clock struck 12 and it would be Christmas day. I rang my mum crying because I wanted to come home. I hated being attached to drips that beeped and kept me up all night, I hated being woken up so that I could have blood tests done or my temperature taken. How was I meant to rest and get better if I was constantly being poked and prodded?

That was the moment when I truly realised I had a disease that couldn’t be cured. A disease that will rob you of your happiness any chance it can get.

Colitis isn’t playing around. Colitis is a mean, nasty bully and once he has dug his claws into your gut, he is not letting go.

It sounds strange but I learnt to respect the disease because if I underestimated it, it would make me pay and it just wasn’t worth it. I had felt the wrath of Ulcerative Colitis and I wasn’t prepared to make the same mistake again.

Freaky Friday

Stumbling to the bathroom I am aware of how large my stomach feels despite the fact I have not eaten yet.
Mouth is dry, head feels like cotton wool. Its like a hangover but without the booze or the fun of the previous evening.
I sit on the toilet trying to wake up, realising that I’ve only clocked about 4 hours sleep I yawn sleepily and am disturbed to feel a sharp pain shoot up my left side.
Feeling suddenly awake, I feel a deep spasm and a wave of nausea hit me. Grabbing the side of the radiator, I gingerly stand and breathe deeply until the spasm passes.

Opening my eyes everything’s a tad hazy, and I realise I’m on my back staring at the ceiling. Fab. I’ve passed out.
Slowly getting up I go downstairs and wake up the boy

“Baby, I’m going to the hospital”,

Considering he’s been trying to get me to hospital a good few days before this, I would have thought he would have been a bit more enthusiastic. Instead I am met with a grumble of it being early and that we should go later.

Sighing, I call a taxi and inform work that I will not be making an appearance today.
Waking the boy again, he is disgruntled but happy that I am finally making my way to the hospital.

After the initial wait in a&e, which for once doesn’t take that long, I am asked to put a gown on and pee into a pot.

My pee is decidedly shy when asked to make an appearance and I spend at least 15 minutes trying to coax it out and inevitably pee on my hand. The moment I have excruciatingly filled the pot, I pee like a normal person instead of a dribble, my bladder laughing at me.

I conclude that all my organs hate me.

Abdominal xray and a chat with a doctor who clearly hasn’t a clue what an internal J Pouch is. Once again I feel like I should carry a diagram of what my operation entails and what my insides look like.
More waiting, some sleeping, 2 nurses try to take blood but its not happening, I’m pricked with needles four times and my blood just isn’t playing nice.
Fifth times a charm apparently, but even then they have to wiggle the needle to get the tubes filled.

I get told I’m going to a ward and I start to get upset. I hate staying in hospitals and every time they put me on a ward I end up staying for a prolonged period of time.
“We’re taking you up to page ward”
And I burst into tears.
Weirdly this time last year I was in hospital for a flare of UC and I ended up having an emergency operation.
What ward was I on? Page.
Tears are streaming now and I’m panicking, No ones told me what’s wrong with my pouch and I’m so scared.
The boy manages to calm me down and the nurses are lovely.
Fluids are hooked up and a chest xray is booked.

A surgical doctor sees me, I’m grateful for the understanding.
After examining me the doctor books an ultrasound stating that it might not be the pouch that is causing the initial problem.

After hours of waiting and several scans later I am told the reason for my pain is, the dreaded cyst.
The little sod has grown and brought some friends. I now have a 10mm cyst on my right ovary and 2 4mm cysts on both ovaries.

I am thankfully sent home with some amazing pain killers. These bad boys have me so drugged I’m just smiling at the world and dreaming of bunnies and unicorns.

So. I will now have a load of appointments to a) determine the outcome of the cysts b) sort out my antibiotics for my pouch c) maybe see my old gastro doctor for some help to live without the antibiotics.

Works going to love me, but as my mum and the boy said, my health comes first at the end of the day. I’ve always been really nervous about what work will say as I don’t want to cause a fuss. But hey, its not like I inflicted this upon myself so I’m afraid I’m just going to have to suck it up and get on with it.

I’ve been having days where I am super pissed off at life. I’m barely surviving let alone living, and I’m deeply annoyed at how I just can’t seem to catch a break.

4 months. I have 4 months to put up with it all and then I’m off to Australia. I just really hope my body settles down before then, my insurance is already sky high, the last thing I need is to get to Australia and be sick there too!

Keep your fingers crossed for me guys. I so desperately want to get better!

There is light at the end of this gloomy tunnel

“You can sound the alarm, you can call out your guards
you can fence in your yard, you can pull all the cards
but I won’t back down, oh no I wont back down
” Eminem, Won’t Back Down

What a week. 
I have been tested in unimaginable ways. To be told that I don’t have cancer or have to have surgery, to be then told I have chronic pouchitis. That I will be on long term antibiotics, and that my pouch will always give me problems.
All in a few days. 


My surgeon was not best pleased. “Why does it always happen to the loveliest of people” with those words I broke into tears in total agreement, why? Why does it have to happen to me? Why do I get all this bad luck my way? Tears streaming down my face and so many questions in my eyes.
He must get it a lot for he took it all in his stride telling me that life wasn’t far but we’re just going to have to get on through it. 

This week has told me that it’s okay to have a break down. I am after all, human. I can’t be strong all the time, and with everything that I am facing, its completely normal to gorge on chocolate, having it smeared over my face, mingled with the tears as I sobbed “Why me?” 
Obviously that wasn’t what really happened, I just watched TV and, respectably, ate some chocolate.
As The Boy pointed out, most people would have quit a long time ago, so its completely fine to take the odd timeout. 

The Boy has been amazing as always. Piecing together my broken spirit with his calm soothing words. His support is unwavering, which means the absolute world to me. 
He may not be the most vocal of fellows, or the most opinionated but he is always there, his presence always felt. 

Taking a day to allow myself to feel completely broken has allowed me to feel stronger about everything. It pushed me to apply for my Australian Visa. 
Sure I may go through more than my fair share of bad luck but its what I make of it. I can sit and wonder why or I can live my life. I can be sad and miserable about it or I can continue being happy with all the amazing things that I do have in my life. 

This is just another hurdle in the road I am following. I will overcome this, there’s the fodmap diet that I am going to try and no doubt document my journey. 
And if my visa gets approved then I will finally be on my way to Australia. 
Things are on the look up, I just need to trust it and believe in myself. I can overcome anything if I try hard enough. I’ve never given up before, I sure won’t stop now.