Curve Ball

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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

A brief chat about that dark and twisty place

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Picking up my phone to check the time – 7am – I resign myself to the fact as I’ve been up three times since 5am, I probably am not going to get any more sleep.

A deep sigh fills my lungs and roll myself out of bed. What to do? Stretching, I decide that instead of going for a swim in the afternoon, I am going to go for my first run since god knows when.

In Melbourne I used to cycle everywhere and run around the botanical gardens. Since coming back to the UK I managed to run until the early new year but became so exhausted that any exercise outside of work was just impossible.

Putting my gear on, I head out into the early day and smile as I slowly start to break into a gentle jog. It feels good to have my feet hitting the pavement once more. A few months ago I couldn’t even walk up the stairs without feeling sick, out of breath and having to rest at the top of the stairs. It’s crazy to think how far I’ve come and only looking back can I see how sick I was.

Unfortunately this is a cycle that I have grown quite accustomed to. Periods of health, periods of just getting through the days and periods of debilitating illness. It’s a horrid cycle.

This morning was the first for a long time where I felt alive. It has been a horrid, turbulent few months. Months so dark I was unsure that I would make it. Shit. I am aware of how dark and twisty that sounds, but I have to be honest because no one talks about how hard it can be. We all show the brave face, how much fight we have in us, no one tends to talk about the dark and twisty hole you can end up in.

It’s not fair, you’d hear me say to my step dad. I just don’t get how I can go through and get a grip on one chronic disease to only be dealt with another one. Why me?

There isn’t an answer for this. It’s just the way it is, but boy did I feel sorry for myself. 27, a bowel disease, no large intestine and now a liver disease? Come on universe. Stop taking the piss.

Do I wish things were different? Of course I do. But I can’t do anything about the way the cards have been dealt. I have to make the most of the situation. There were times that I would lie in bed having not had any food for 2 days because in my mind I just could not see the point. Why try? I’m just going to get sick again. Why go through the cycle of trying to get better when I’ll just end up here once more. What have I honestly got to get out of bed?

Well, for starters, my beautiful family and friends who have been an immense source of support and encouragement. But really truly? Me. I needed to get out of that funk for me. I could let this darkness consume me, I could let it engulf me or I could at least try to fight it. Slowly I started to do things. I’d get out and go for a walk around the park, no matter how exhausted I was, persuading myself that if I still felt awful I could sleep when I came home.

I went for coffee with friends, I started to go to exhibitions and I was finally able to concentrate long enough to read.

I told my doctor how low I was feeling and she put me onto a counsellor and I started taking Cognitive Behavioural Therapy sessions.

I started to swim – I say swim – attempts to not drown.

I brought things from Lush because they smelt good, I brought flowers because they made me happy. I made tea. Lots and lots of tea.

There is no formula to try and get yourself out from that dark, twisty hole. There is no guarantee that it will work. I’m still trying, there are days where my anxiety comes and smacks me in the face, a cruel reminder that I’m still fragile but I’ve come so far from where I was.

To anyone that is going through this at the moment I have this to say to you.

You have to believe in yourself, no matter how hard it is. Your life matters. You have to fight for it, it’s not fair and it’s not easy but the world would not be the same without you. Hang in there beautiful. It’s going to be okay. I promise.

Roid Rage

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Steroids.

Tiny white pills sent from the devil. Necessary for my recovery – in fact life saving – but extremely debilitating.
When I had what I thought was to be my last dose of steroids back in July 2010 I could not have been happier. I’d been on steroids on and off for my Ulcerative Colitis for two years. Steroids controlled the inflammation but I’d always flare once I’d come off my course. Towards the end I’d start to have symptoms when I’d get to about 10mg, so when I had my Jpouch operation I remember being so excited and looking forward to being medication free.
Just before I left for Australia I had been having issues with chronic pouchitis, and my surgeon and I  were discussing the options of going back on because the copious amounts of antibiotics I had been taking weren’t helping – I flat out refused. I had experienced 3 years of being medication free, there was no way that I was going to back on them.
I managed 5 glorious years of no medication. September of 2015 saw steroids reintroduced into my life and my body has been through so much to compensate the dose that I am on.
I don’t even know where to start with the insane amount of side effects that I am experiencing, so let’s do some lists. Lists are good, comforting, they bring order. Yes, let’s start with a list.

♥ My face is a mess.

No seriously. A full on, HOTMESS. You experience this weird symptom called moon face where your face becomes puffy and fills out.

I was in a&e on a Saturday night a few weeks back – yes friends, Saturday night in a&e is as horrific as it sounds, there are a lot of drunk people shouting “I’m going to be sick” whilst they are trying to escape from the bed, whilst also trying to dance. It was a weird time and everywhere smells like vomit – and I managed to come across a doctor who had seen me before. We were having a chat about my chest pains and he said “I remember you, you’re a bit chubbier than when I saw you in May” and gestured too my face.
You’d think that I’d be able to brush it off considering that was the least of my worries at the time, in was in my PJs in a&e for chest pains at 3 in the morning on a Saturday night. But it stung. I’m hyper aware of the fact I look like a hamster hoarding food for a bleak winter, I’m also very aware of my next point.

♥ Unwanted facial hair

What the hell. I am half Greek and so have dark hair, for the past few months I have been sporting a rather fetching female moustache. Its not as prominent as a male one, she’s sneaky, she quite fine, but nonetheless, she is there in her proud glory. It comes accompanied with some light peach fuzz on my jaw/cheeks and bizarrely a patch of it above my right eyebrow.Why are you there? You are neither my hairline or my eyebrow, and why only on one side? I have burning questions that have no answers.

♥ Acne

Lots and lots of acne, over my face, my arms and my back.

♥ Weight gain

I’m just turning into a ball. A round, spotty, furry ball. In truth a hamster. I’ll keep you posted on the claws.

♥ Mood swings

I am cranky as hell. Something very tiny can set me off at any point. Take for example a lady on the coach who was talking quite loudly on her pohone with her dad. Sure it was annoying, but I had worked myself up so much that I was shaking. The rage was insane, I wanted to turn around and scream “NOONEGIVESAFUCKABOUTWHEREYOUVEPLACEDTHEDRESSERINTHEHALLWAY” tearing her phone away from and throwing it off the coach.
I didn’t, because that’s the kind of shit that gets you hospitalised or in trouble with the police.

♥ Panic attacks and anxiety

I used to suffer from panic attacks when I was about 14 and would have the occasional bout of anxiety but it wasn’t, I was about to type ‘ wasn’t an issue’. I know now of course that it was, but the attacks didn’t happen regularly enough for me to feel like I could talk about them. Also, at that age I didn’t know how to raise that subject. It was never so bad that it stopped me from being able to live my life and so I just continued as I was.

♥ Exhaustion

Hey old buddy, old friend, old pal, you are not new to me. I’ve battled you for years but this had me holed up in bed for quite some time.

♥ Shakey hands

So much so that I can’t put eye liner on for fear of poking out my eye. Lame example, I know, but my eye liner is my ‘trademark look’. I put on make up in attempt to make myself feel better about looking like a hamster, but when you can’t because your hands shake too much, it then becomes a battle, which is exhausting. You want to feel some sort of normality, but when your hands are shaking so much that you worry you’ll end up looking like this Make up

You sort of just accept that make up isn’t happening and resign yourself to avoiding all mirrors and reflective surfaces.

These days I’m on 20mg so luckily the shakes have stopped and have recently been able to put on proper make up once more. Which is great, because the moon face, acne and facial hair I’m told will stay until I’m off them completely. Great. Someone teach me how to contour please.

I also nearly cut my finger off trying to make dinner. Lesson learnt. a) When shakes are bad, soup is your friend. B) why did I think it was okay to use a knife when my hands were so shakey? Once again you strive to attempt some kind of normality. No one wants to admit that they can’t do things. Its easier for us to focus on what we can do, so of course it seemed perfectly okay to try and cut vegetables.

♥ Depression

You’re a Douche and to be quite honest, I’m not ready to talk about it on here just yet. Just know that steroids don’t help it and I’m currently in therapy in an attempt to kick its ass.

♥ Insomnia

Which doesn’t help the above point. Or my face.

There are more side effects, but these are the ones that hit me the hardest. As I said above, I’m currently on 20mg and I’m slowly tapering off them which means that some of the side effects ease, but also means that where I have been on steroids for so long I have to be careful for things like joint pain because your body gets used to the dose that is supplied. So far I’m lucky and have not experienced anything too out of the ordinary.

I have another appointment on the 14th to discuss coming down further. The aim is to not be on steroids but if my liver levels start to creep up again, which is possible, I want to discuss going on Budesonide which is metabolised in the liver, hopefully bypassing a lot of the above symptoms. That, however, is something that future Steph can deal with, because right now I’m taking it each day as it comes.

What are your experiences with Steroids?

Stay well

-x-

 

 

 

 

Obligatory End Of Year Post

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As I sit to type this, I have about 5 unfinished blog posts in draft for this blog and 3 for Oh No Not Another Blogger.

Why?

Because my head is a crazy mess and I can’t sit still to sort it out for more than 10 minutes. The level of restlessness I have been experiencing is paramount. I have so many ideas, so many thoughts to share that trying to get them all out is becoming annoyingly frustrating. I start to type one thing, which then ends up being something else, that isn’t quite what I wanted to say in the first place and I get irritable and have to leave it alone.

I know as a writer – I still feel like an absolute liar when I utter those words and want to erase them whenever I type them – that to get better, I must write. No matter how shit I think it is or how shit it actually is, I won’t get better unless I practice. I won’t find what works for me, or what other people enjoy reading or even help others with their journey unless I write.

I’m finding it difficult to write at the moment, which is bizarre because I have a lot of time to be able to do so. All I wanted was time to write and now it’s here, its proving to be quite arduous. There are countless ‘could be’ explanations as to why this is the case. I’m on medications which are altering my state of mind and my body is broken. I don’t really know why when I sit to write, I keep typing and erasing or sitting and staring at my screen.

It is maddening and I am hoping that I can slowly push through it, pretty much like everything else that’s happening in my life at the moment.

Onto the post at hand. 2015 you’ve been a bit of a chaotic one haven’t you?

Generally I don’t like to make a comment on the whole of the year. Good and bad situations will arise however the universe sees fit, however, 2015 was the first year that I spent back in the UK after my stint in Australia and it just so happened that time wise, my first year back coincided with the New Year 2015.

It has been turbulent to say the least. I was in and out of hospital pretty much from the get go, March saw me in with tests for my liver, April gave me an over night stay in St George’s for a mini stroke and September kept me in St Thomas’ for a week with Jaundice.

I was officially diagnosed with Autoimmune Hepatitis in July but its been suspected that I’ve had it since 2009 and was just none the wiser.

BUT.

My J-Pouch, though its been a little bit bratty this year, hasn’t given me too many complications, and going forward looks to be keeping its shit together. I went on an awesome holiday to Portugal, I’ve met some incredible people this year and found some beautiful friendships. One of my besties came over from Australia and lived in London for a little bit, I miss her greatly, and some existing friendships/relationships have blossomed, I’m looking at you Sy, your support this year has been phenomenal.

Though these days you can find me struggling through the stream of shit that life throws at me with an inconceivable look of befuddlement on my face, I have so much to be grateful for. My friends and family continue to be a tremendous source of support for me, I have so, so, so many beautiful people in my life and most importantly, I am alive. There are days where it hurts, and scarily days where I don’t want to be, but I am still here fighting.

2016 is the continuation of a long journey for me and my health. Hopefully a road which entails more good days than bad. I believe it’ll be a slow one. Probably a pretty boring one, but hopefully one filled with lots of love and care.

So to all my beautiful friends and family, raise your glasses with me, I hope yours is filled with champagne, mine is with Schloer, the adult soft drink (insert laughing smiley with tears here)

Here’s to the end of 2015, I hope that you can look back on it and find some beautiful memories to celebrate.

Here’s to 2016, a New Year. For those who wish for it to be a new start, a place to implement new habits, my very best to you. I hope you achieve them. For those who abhor the idea of New Year New Me, may you continue to build upon all that you have achieved already and for those with no fucks to give, just have a drink for me will you?

But for all of you I wish you happiness, in whatever that may be. I wish you all to be as healthy as you possible can, I wish you all to sparkle brighter that damn unicorn that poops glitter.

Here’s to 2016,

CHEERS!

 

 

I’m sorry, I don’t have any glitter

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When I wrote my previous blog I was really inspired to write again. I had high aspirations for myself; had made lists. I had loads of ideas on what to write and with the time off I currently have, I was ready to throw myself in and get cracking.
Except the last few weeks have been really hard and I have found myself in quite a dark place. Steroids do not help my mental state, it seems that every course I go on, the side effects are worse. I’ve been on 40mg for the past 8 weeks and I really can’t wait to taper off them. Battling with low moods (and that’s a nice way of putting it) in general is hard enough without medication sticking its unwanted nose in too.

“Heeeeey you” depression eyes me up with a hint of a smirk, “I brought friends”

Anxiety gently shakes in the corner, whilst Medication takes his jacket off and climbs into bed with me.

I protest

“But I have to get up, I need to make breakfast, shower, go for a walk, I’ve got things to do. I don’t need, no, I don’t want you here”

Medication strokes my hair and Depression sits at the end of my bed.

“Why would you do that? You don’t need to do any of that.” He looks at me whilst lighting up a cigarette.

“You can’t smoke in my room, get out, go away” I try to sit up.

Medication puts his arms around me, nuzzles in closer. Depression chuckles, whilst Anxiety decides she wants a piece of the action and gets into bed too.

“Seriously, get the fuck out of here”

“Temper, Stephanie. That’s not very nice is it?” He spills ash on my bed. I sigh and close my eyes, realising he’s not going anywhere.

I would regard myself as a positive person, a fighter. I don’t want to be here talking about all the things that are wrong with me or the things that I can’t do but it seems as though that would be an unfair representation of the illness/struggle.
It is not all motivational pep talks in my head about how I can fight this and how I will get better. The last few weeks have more been on the side of “what’s the point?”
That’s awful! I don’t want to feel like that. I don’t want to wake up and just listlessly go through my day with Depression holding my hand, Medication on my back and Anxiety running in cirlces around me. I’m tired of friends asking me how I am and my response isn’t a positive one because I really want it to be positive, I really want to say “I’m not 100% but I’m getting there”

I’m afraid I don’t have any sparkles of good news for you.

But this is the reality of it and I thought I’d share with you what’s going on so that if any of you are in this position right now, you don’t feel so alone.
How am I coping? Well I’m trying to cut myself a little slack. There is a lot going on, mentally and physically, and beating myself up about not feeling particularly chipper is not going to help me.

It’s all about those baby steps. Small things that help me to feel a little better. That could be anything from reading, a cup of tea or a chat with a friend.
Keeping busy. Or at least trying to. I’m a little limited in what I can do without my body saying “nope, had enough buddy, you’re taking a time out” and sitting me down. Having said that I don’t want to mope around in my pjs all day so I go for walks, take really rubbish pictures on my iPhone, meet friends for tea. We’re always coming back to tea. I research things about Ayurveda medicine and the immune system.

I read lots of blogs and soon I will be getting involved in all things Christmas. Side note. I love Christmas. I used to hide and grumble about not really giving a fuck but truth be told I really love the festive season. Glitter, mince pies and festive cheer. Love. It.

It’s not much, and compared to what I used to do (hold down a full time job and an active social life) it’s pretty meagre in comparison.
However, that’s just the way things are right now. Its better that I accept it than try to fight it and make myself feel even worse. It’s just a temporary state and I’m sure that in a few months I’ll look back and all this will just be something that I went through and came out on the other side.

I’ve rambled enough so I will bid you goodbye but for any of you who are struggling out there know that this too shall pass. Nothing is permanent and hopefully soon we’ll all be back to throwing out sparkles and glitter. Till then here are some things that made me smile recently.

♥  Filter coffee from Federation at Brixton.

♥ Flowers. I went to a flower market recently and brought some beautiful peonies. The day was lovely and I got to catch up with a good friend, drink tea and have lovely chats.

♥ Today some random dude in Brixton looked over at some pigeons, then at me and said “ooo, pigeons” as though I had never seen them before. I smiled polietly, willing the lights to change so I could run away.

“Very spiritual, that.”

A massive flock of them flew into the sky and he goes “oh look, some sparrows.”

No dude, still pigeons. Change, lights. For the love of God, change.

 

Choose Wisely

When I was diagnosed in July with AIH, my gastro told me that I had to take steroids and I flat out said no. I know what they do to me, I don’t like it, there has to be another way.
Bless him, he was like okay cool, so you don’t respond well to Prednisolone, let’s put you on another steroid called Budesonide which is broken down in the liver and you shouldn’t encounter so many of the other side effects. You have to go on steroids though because if you don’t, you’ll cause scarring of the liver and then you can’t regenerate from that. You’ll cause permanent damage which will mean a liver transplant, or death.

Annnnnd I ignored him.

Not because I was being a dickhead. Okay, maybe only slightly being a dickhead, but with the care of my bowel, I never really explored trying to fix it with diet or something other than really toxic drugs. I never had the opportunity to explore nutrition or naturopathy. I just went ahead and did what I was told, but this time I said no. This time I stood up and said it is my body and I will decide how I want to proceed with my care.
I want to feed it glorious anti inflammatory foods (which by the way means air. No coffee, no alcohol, no bread no pasta, no cheese, no ice cream, no chocolate, no sweeties, No FUN. NO LIFE!) I need reduce stress, do yoga, maybe buy a juicer, give my shoes to homeless people and the universe went PAH! Looked around and said, guys are you listening to this one? Then put me in hospital for a week with Jaundice.

My gastro came in, stood by my hospital bed and said “I’m sorry”
Mate, why are you apologising? I was all like NO SCREW YOU AND YOUR MEDS, putting my middle fingers up, dropping mics and look where that got me? I ended up in hospital, the place you were trying to prevent me from ending up in. So no. I’m the one that’s sorry and I’m even more gutted because now I had to take the Prednisolone because my liver said “Fuck this shit, I’m out.”
Lesson? Pick and choose your battles peeps. I learnt that when your liver is trying to escape out of your ribcage to roam free in meadows, you should listen to a doctor who has trained for years in what he is practising. This dude isn’t a random hobo in a white coat and stethoscope who rocked up to say “Hey, have you thought about trying coffee enemas?”

I’ve never seen my doctor in a white coat actually.

Anyway.

I’m not saying that I won’t go down the route of natural medicine, because I probably will at some point. I don’t believe that I should be on medication for life, which is what seems to be the general consensus. I’ve been told that diet has no effect on what’s going on with my liver. I find that super hard to believe. Did you know that the liver has hundreds of different jobs and quite a few of them are intertwined with digestion? You’re trying to tell me that the food I put into my body has no correlation with my liver? Hm. I know I’m not a doctor, and I know that I sort of shot myself in the foot by being all gung ho with my approach at first, but I really believe that there has to be a way in which I can manage this condition without having to be on medication for life.

The stark reality of this disease is that if I leave the inflammation untreated, my liver will fail and I will have to have a transplant or I will die.

My concern right now is to get the inflammation under control, which is slowly happening, and then find ways to be able to control it and live the best life possible.

Whilst I completely respect my gastro, I also want to be as informed as possible with my disease and know how it is going to affect me now, and in the future.
My gastro has spent years learning what he specialises in (gastroenterology with an interest in Hepatology) and who am I to go against years of training? At the same time I am more than within my right to question what is best going forward. As a patient I think its right to take a pro active approach in my care, that I learn about the liver and how my disease effects it. Knowledge is power and I want to be in the best position to give myself the chance to lead an amazing life. I don’t want to sit back and be like “Oh sure, you want me to take this immunosuppressant which potentially could give me cancer after years of taking it?” Sorry what? You want me to take meds to control liver disease to then possibly later down have cancer… My odds in this lifetime are not that great.

1 in 250 people in the UK are diagnosed with Ulcerative Colitis every year and its on the up.

20% of those will have surgery

20% of those will have complications.

I landed in all of those.

10 people in 100,00 will be diagnosed with AIH.

That’s pretty rare. I landed in that too. I do not trust myself with any tiny odds.

Wait, maybe I should start playing the lottery?

Sorry, I digress. I just mean that I think its wise to be as informed as possible. I don’t want to be here at 50, if I make it that far, thinking Damn, I really wish I had researched things a little more. We have a wealth of knowledge at our fingertips, it would be a shame to waste it.

Bah, there is no way I’m ending this blog post on such a corny note, and so please check out this song that I found which I think it pretty much how my liver is at the moment 😉

 

Runaway Organs

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At the end of a pretty awful bender at uni, I once said to my best friend over a cuppa and some bacon “I think my liver has packed his bags and is leaving… I physically can’t drink anymore”

Oh how we chuckled.

Fast forward a few years and my liver is still trying to leave my body, only this time it’s  not a joke and my liver actually physically hurts. Who knew that it would hurt? Maybe he’s tacking his escape route to my ribs? Or maybe he’s trying to bust out alien-stylie?

I’m not sure, but I do know that it’s exhausting whatever he’s doing in there.

Its been a rough couple of weeks. The dreaded Steriods are wreaking havoc with my body, which in fairness deserves its own post.

Exhaustion is next level. Does anyone remember that episode of the Simpsons where Mr Burns is wandering around the woods saying “I bring you love?”

Thats me. Only I’m not glowing green. Though I was a delightful shade of yellow in hospital and my eyes are still tinged, but that’s neither here nor there.

All I know is that I must look like a nutcase on the tube, because I am shaking and muttering to myself that I just need to make it home in one piece and then I can lie down. Everything’s going to be okay.

I’ve also turned into an idiot. I can’t seem to concentrate and you can’t talk to me for longer than 5 minutes because I will either forget what I am saying or I’ll forget what you’re saying. I’m staring at you, the lights are on but no ones home. My brain is clearly in cahoots with my liver and they’re going to run off together into the sunset holding hands.

Bastards.

To to say the last week or so has been a struggle would be an understatement, but I’m trying to get through because that’s just how it is. The alternative is to sit and get bitter about what’s happening. I can’t choose what’s going on but I can choose how I react and deal with it.

I don’t want to just survive, I want to live.

I have an appointment with my doctor on Thursday to discuss what went down in the hospital, and to talk about *whispers* liver transplants. I have to whisper because I don’t want to scare my brain away. My Doctor tried to talk to me about it when I was in hospital and my brain completely bailed, I saw his mouth was moving and I was just staring at him going uh huh yeah.. So I’m going to need to get him to repeat that information now that I feel a little bit more equipped to mentally deal with what he was trying to tell me.

I’ll keep you posted, until then, stay well.

x

I swear it’s Deja Vu

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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

Blow by blow

Inhale.

Exhale.

Extend your right arm over your head and breathe, really breathe into that stretch. Remember this practice isn’t about perfecting the poses; it’s about relaxing and feeling what’s good for you. If you want to sway a little, that’s okay. If you want to circle your wrist, that’s okay too.

Just breathe, and feel.

I leaned deeper into my side stretch and I slowly swayed the arm that was above my head and I realised I was crying. I moved the arm that just a few weeks ago had gone numb and could barely move above my head. The same arm that couldn’t do the simple activity of buttoning a shirt.

Tears streaming down my face, yoga practice still in flow, I cried for the amazing feeling that I could move. I cried that I was in my bedroom and not in hospital, I cried that I could move my limbs, that I had full control of my body and that I was alive.

I also cried for, what seemed to me, the great unfairness of it all. No closer to what’s happening with my liver, and now am struggling to deal with Migraines so severe that everyone thought I was having a stroke.

On a Wednesday afternoon after a shower I was trying to look up an interesting article about a scientist who had a brain split when I kept misspelling the word split and halfway through messaging a friend, my thumb kept hitting the wrong keys. Laughing I put the phone down when I realised that the whole of my right arm had pins and needles.

Thinking I had been sitting at an awkward angle I got up and started to shake it when I realised it felt that it wasn’t attached and I couldn’t move it past my shoulder without it dropping straight back down.

Things started to become blurry and I thought I better get dressed because if I was about to pass out I wanted to be dressed for the encounter. I tried to pull up some jeans but it caused great difficulty because I didn’t seem to have any spatial awareness and kept missing the waist band. Trying to keep calm I managed to single-handedly put them on and reached for a shirt, when I realised that my right arm couldn’t pull it on, nor could I do up the buttons.

Putting on a jumper I said aloud what the Fuck? And I realised that I didn’t sound like me, that the right side of my face had gone numb and that my speech was slurred.

Calling my mum I tried to tell her I thought I was having some kind of allergic reaction, that’s when I then realised that I couldn’t form sentences and then I started to panic.

Straight away my mum told me to get to the hospital.

Trying to call for an ambulance and I became extremely frustrated because I couldn’t remember my post code and I could see it in my mind’s eye, I just couldn’t get my mouth to connect with my brain. After an agonising game of trying to figure out where I lived, I sat and waited for the ambulance to get me all the while thinking “this can’t be a stroke, I’m only 26, this can’t be happening.”

The paramedics came, my voice had returned to normal but I still couldn’t form sentences. I’d get a few words out and I’d either forget what I was trying to say or get upset because I could see what I wanted to say, I knew how to answer the questions, but my brain and mouth were separate.

It was such an awful feeling of helplessness. Overall the whole experience lasted about an hour or so. I had a CT scan immediately, and was kept in the hospital overnight.

Lying in the acute stroke unit is most definitely an experience that I wish not to repeat. I’m grateful that I had a Migraine Aura and not a full on stroke, but regardless, the experience was intense. It is so easy to see what could have been and I have gone to sleep every evening with immense gratitude, knowing it could have been so much worse.

This was about three weeks ago and I still have a deep sense of gratitude for my body and all the amazing things that we take for granted.  Sure, when it first happened I  became really upset and couldn’t wrap my head around what was happening and why it was happening to me. Thankfully I can say I’m not carrying that around with me any more. I am so very lucky that there was not any permanent damage.

Number one focus at the moment is getting my health back on track, I still haven’t a clue what’s happening with my liver, why my IBD is flaring or why this is all started when I came back from Australia.

It’s going to take some time, but I have hope that I’ll be able to feel like I did when I was healthy and loving life in Melbourne.

Enjoy the rest of your day, where ever you are. I’m pretty chuffed as this is the first Bank Holiday I have been able to have in a long time!

Keep smiling 🙂