Runaway Organs

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

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 🙂

 

Still searching

I arrived back home to London at the end of November and after some routine blood tests had found that my liver was out of whack. Cue a lot of hospital visits and a heap of frustration because its been 5 months and the doctors still haven’t figured out what’s going on with my health!

I’ve come to the conclusion that I am just broken and for my birthday am going to ask for a brand new body. We’ve made huge advances medically, a new body isn’t too much to ask for, right?

I’ve also come to the conclusion that when doctors say “this may be uncomfortable” they are lying. Uncomfortable means “this is going to be painful, chances are extremely painful, but we’ll let you find that one out on your own”

However I did have an extremely honest doctor for my liver biopsy and when the nurse said “this may be uncomfortable” he then laughed and said “Well we don’t know that for sure, I mean I haven’t had the procedure personally”

Oh its all fun and games when you’re on the other side holding the largest needle-type-contraption I have ever seen in my life, isn’t it doctor?

It hurts by the way. I felt winded and then promptly sick, which I suppose in fairness is normal, after all you’ve just taken 3 tiny pieces of liver out of my body.

Endoscopy. At first I thought it was a welcome change to all the colonoscopies I’ve had in the past.

Once more I was proven wrong. Drowsy and confused from the sedation, the doctor moved the scope at an angle that I started to choke and retch on the camera. Hazily I heard the nurse say “Almost there, you’re doing so well”

Lady… take the scope out of my mouth. I am dribbling so much despite your little suction thingy, that the side of my face is now wet, I’m clearly trying to swallow but can’t because I have a camera down my throat, please do not try to encourage me to keep going, just take the camera out.

MRI contrast exam. WHAT THE FUCK IS IN THAT LIQUID? Seriously? and why do I have to drink so much of it on an empty stomach?

I have a sensitive palate, anything that I don’t like to taste, will make me gag. Same with smells, its really annoying. And yet I had to drink this large bottle of  disgusting liquid in the space of 45 minutes. I thought I’d sip it… nope… it made me gag… I thought I’d try to chug it… nope I was very nearly sick everywhere.

Luckily after I somehow managed to drink it, all I had to do was lie in the MRI and just listen to noises that made me feel like I was in a spaceship. Which isn’t actually that helpful because I want to laugh at the ridiculous scenario I am in, but you can’t because they’re taking pictures of my insides.

Still no news on what’s happening, I need to have another endoscopy because they want to see further into my small bowl. Joyous.

I’ll keep you all posted on my delightful hospital adventures.

Till then, stay well and happy x

Suspected PSC

“We suspect that you have Primary Sclerosing Cholangitis, but the MRI isn’t conclusive so we need to do a few more tests to be sure.”

Primary scl-what-now?

I still don’t know how to pronounce the above, and so PSC will do for now. All you lovely people need to know, is that it is a disease that effects the bile ducts in the liver.

There is of course a chance that it may not even be this, but because I have (or technically had as I now have no large intestine) Ulcerative Colitis, this is the most likely outcome as they can be linked.

Roughly 1 in 13 people with UC can develop PSC, why? To be honest, even with some research I am not sure.

How does it effect me?

The only reason the doctors found anything wrong with me was because of some routine blood tests, I have no symptoms apart from being extremely tired for no reason, which to be fair, I just thought was my IBD saying hello.

As the doctors couldn’t be sure from the MRI alone, it means that if it is PSC, it’s not very advanced, which is a good thing.

In the future it can cause problems as the amount of inflammation can cause scaring of the liver. However, I’m not worrying about that until I know for sure if it is PSC.

Sorry for the brief post, just wanted to give you all an update, no doubt I’ll have something to say about the tests that I’m having (liver biopsy and an endoscopy, through the mouth this time, thankfully!)

Till then my friends…

The real world

I could be wrong, but I would believe that normal people after a three week stint in the hospital, complete with major operation, would go home and put their feet up. Maybe have a cuppa, watch a bit of TV.

I went down the road to the supermarket.

I wasn’t alone, I’m silly but I’m not stupid, there was no way I was going to be able to carry any food back with me.

Continue reading…

Keep on going

Motivation.

Noun
The reason or reasons one has for acting or behaving in a particular way.
The general desire or willingness of someone to do something.

What to do when this magical word evades you? I wish I had the answer. I’ve been a bit poorly recently, migraines, tummy pains and this weird thing where my arms and legs keep going numb/pins and needles.

A visit to the doctor is most definitely needed but when you’re a traveller with no stable address it can be a little tricky.

Continue reading…

Worst Night Ever.

When I came out of the anaesthetic, I remember trying to hard to stay awake, to fight the sleepiness thinking that if I did, maybe I could go and see my mum and she could make sense of what was happening here.

Once I had been wheeled in, I tried so hard to show her my stoma because I really wanted to see what it looked like. However,  I forgot that under the gown I was naked and in my enthusiasm, nearly flashed the ward my birthday suit.

Those first few days were so rough. I thought I had been exhausted when I had Ulcerative Colitis, but no, this was a different kettle of fish. On the first day, I managed to sit out of bed in the chair beside me whilst the nurse changed my sheets and bathed me. I was so tired I couldn’t keep my head up and the PICC line that was in my neck felt so heavy that my head kept lolling forward.

I had to re-learn so much, because I had been sliced and diced through my core, something as simple as getting out of bed was absolute agony. And scary. I’m a pansy when it comes to pain, I don’t want it, it can stay away thank you very much! So I would have to gear myself up to get out of bed because I didn’t want to be in pain.

And I was petrified to eat! After a few days of being on liquids they encourage you to eat and I just didn’t want to. I was so scared that something was going to get stuck, so every thing that passed my lips was a mini victory. My mum was going around to all her friends “Steph ate a spoonful of mash, today is a good day”

Also, on a slightly unrelated note, why the hell didn’t anyone tell me how freakin’ bad emptying that bag is? The first time it had to be emptied I gagged, which is not fun when you’ve been sliced and diced through the tummy, let me tell you! That first bag emptying, literally smelt like Satan’s Pit. What the frick died in there?

And showering. Sweet mother of God. My first shower by myself, I deserve a medal for that bad boy. I was so incredibly exhausted that I couldn’t stand so I sat in a chair, and I couldn’t lift my arms up for longer than two seconds. How the hell I managed to wash my hair that day remains a mystery. In fact, how I even managed the whole shower experience is a conundrum.

Slowly but surely, I was learning how to do things again. I was able to get out of bed occasionally, on my own, I had managed to walk to the toilet, even if I did look like Golum attached to a drip. Its hard standing up straight, it pulls and it felt like I was about to pop something. Anyway, slowly things were getting better, I was moved out of the bay near the nurses and my PICC like came out too. I was eating more as well.

I was making a great recovery and then the worst night of my life happened.

My small intestine had a hissy fit and said “This is just too much for me” and he fucked off.

Meaning, he stopped working. My abdomen ballooned, and the pain that I was in literally had me crying and I’m usually okay with pain. I suffer on through it but not this time. The doctor came in and he said “Blah blah blah back passage blah blah fluid blah blah relieve pressure”

I’m sure that’s not what he actually said but I was crying too much to hear him properly. The nurse rolled me over like a beached whale and the doctor put something up there to relieve some of the fluid that had accumulated and man did I scream.

My poor mum was in the corridor listening to her daughter in so much pain, it must have been so horrific for her because there was absolutely nothing she could do.

That night was absolutely awful, I asked a nurse to knock me out with something because I couldn’t handle the pain and I felt so bad because I was trying so hard to not make any noise because of the other patients on the ward but I couldn’t help it.

The next morning I was spewing, and it was awful! Eventually they fitted me with a lovely NG tube. Which is piece of plastic tube inserted through my nose, down my throat and into my stomach so they could empty the contents of my stomach. My, what a pleasant experience that was because your reaction is “GET IT THE FUCK OUT OF THERE” and you gag to stop it.

I spent the majority of the morning extremely groggy from the anti-sickness drugs that I was on and an amazing nurse stayed by my side, for most of the morning, holding my hand and making sure I was okay.

By the afternoon the pain had lessened and I was taken down for a CT scan to make sure that there was nothing too serious going on.

Luckily there wasn’t and it was explained to me that sometimes the small intestine unfortunately just stops working. It goes into a kind of shock because a) its been manhandled and b) its lost the large intestine so nothing was being digested and it was sitting in my stomach, hence why I had the pleasure of being sick.

After that little hiccup I went from strength to strength. I learnt how to successfully change my bag, which I will have a chat about in another blog post. I was eating, and moving around, not as Golum like as before but still quite hunched and in general, was just getting better.

I was so thankful to be let out of hospital because I desperately needed some sleep. It’s crazy how tired you become in there, all the poking and prodding, the noises of machines, the noise of other patients. A place where you have all the time to sleep and yet none of it feels like restorative sleep. I was forever waking up exhausted and I couldn’t wait to be in my own bed.

But then that alone brings a whole new set of problems! Now I had to learn how to do things on my own, and in the “real world” with out the support of the nurses.

Trip down memory lane

Its time to jump on my flying memory carpet. Lets fly through 2012, 2011 and arrive in April 2010.

I had been keeping my IBD under control with Azathioprine but I was still having trouble, things were far from perfect and my gastroenterologist wanted to up my medication to the next level and to be honest I can’t remember whether it was infliximab or cyclosporine that he wanted me to go on.

Either way I just knew that things did not look good and surgery seemed imminent. I wasn’t responding to medications, but I was glad that there was another option for me to try.

Unfortunately this option was taken away from me.

I was working, the busiest day of the week, Sunday for all you lucky people who do not work in hospitality, and yours truly passed out.

Middle of the pub, out cold. I came to, very confused and shakey and was sent to bed. At the time for those wondering I used to live about the pub, I didn’t just set up shop somewhere out back.

Stupidly, I went back to work in the evening, not because my boss asked me to, but because the pub was short staffed and struggling, it was Easter weekend and I wanted to help my team out.

I had never felt so rough in my life. I had a fever, was shaking but I got through the shift and even went to work the next day.

Thought I had never felt so rough on that day? The worst was yet to come. I took the next few days off and I had never been so poorly. My fever was unreal, I was wrapped up in bed and my partner at the time would get into bed and literally yelp at how hot I was.

Major giggles at the word partner by the way, society needs to come up with another word for your other half because partner sounds a little too conservative and boyfriend makes me sound about 14. Manfriend,sounds like I’m a a bit on the promiscuous side of life and lover just sounds a little bit to much like some weird erotic novel.

I seem to have gone on a bit of a tangent, anywho…

He begged me to go to the hospital but I refused, saying I would get over it.

It wasn’t until I worked another shift where I, mid shift, sat down and said to my colleague “I just can’t do this” that I thought enough is enough.

Finishing the shift I went to the hospital and believe or not was turned away. Not initially, we did the song of dance of blood tests and fluids but was sent home and told to rest.

But this, whatever it was, was not going away. This was the worst flare I had ever had in the whole 4 years that I had UC and I knew deep down I needed to be admitted into hospital. I was going to the toilet 15+ times a day, in fairness I can’t really remember because I was so sick. I had no appetite, was bleeding heavily and the fever was still raging.

I went back when things weren’t letting up and they admitted me for an over night stay.

Except the overnight stay turned into about two weeks.

Never a fun time, but I will save that for another post.

What’s the longest you have stayed in hospital? What were the events leading up to your surgery?

Would love to hear from you!

 

 

 

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.