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.

 

 

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…

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!

 

 

 

How can you help Crohn’s and Colitis UK?

Crohn’s and Colitis UK press office asked me to promote their current survey.

I of course have done the survey, because as I said in my previous post, knowledge is power and if we don’t speak up about it, how will understand this disease?

Please have a look below and take part.

For their latest campaign Crohn’s and Colitis UK are carrying out a survey of young people aged 16-29 with IBD, finding out your thoughts on a number of topics such as medication, surgery, transition, education and relationships.

They really need as many people as possible to take part so that they get a good view of what life is like as a young person with IBD. They’ll then take these findings and make suggestions based upon them to relevant people, like Healthcare Professionals, to tell them exactly how you want to be treated, for example.

Please click through to the survey: http://www.nsmresearch.co.uk/surveys/nsm6484/sn6484.htm

Why do I blog?

It’s a good question. Why do I share my most intimate and private details on the internet for all to see?

I was mulling it over, on the sacred throne, and I was trying to figure out why I write.

Initially I did it because I found the process quite cathartic. If you look back at some of my previous posts, there’s a few rants, the “Why me?” posts because it was the easiest way to get out the emotions that I was feeling without having to burden them onto someone else.

The more I started to blog, the posts started to evolve from rants to my experiences. I realised that I could help people by writing what I was going through. People don’t tend to talk about having a bowel disease, especially at my age (I’m now 24, was diagnosed at 19 in case you were wondering) because it’s an embarrassing disease.

I write about my experiences, so that people with IBD realise that there are others that go through some really tough difficult situations, but more importantly they come out on the other side.

One thing I also want to make clear, I don’t write my posts because I believe that what I have done, you should do too.

IBD is different for everyone, what works for me, might not work for you. I write them so that you can go away and have a think about it. Maybe you’ll try something that I have found out, maybe you won’t and that’s okay. I just want you to think a little differently because it could help to find something that works for you.

I also write for those who have no idea what it’s like to live with IBD. I bare all so that people who don’t understand can begin to grasp what it is like living with this disease. Knowledge is power. The more people that know about this, the more awareness we spread, the closer we become to understanding this disease and ultimately finding a cure.

So why do you blog? Why do you read other blogs? Are there any favourites that you’d like to recommend for others to check out?

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.

Don’t let it win

Remember, waaaaay back when I asked all you lovely people to help me raise money for Crohns and Colitis UK because I was running a half marathon?

I’m pretty sure you all must be wondering what happened.

Well first of all I’d like to thank you, because without your support I wouldn’t have been able to raise the figure I did which was

£410.00

How amazing is that?!?! That’s just a little bit more money to fund some research into this disease. A little bit more money to help find a cure. A little bit more money to someone who may have this disease so badly that they can’t work and have no one to support them, that little bit of money might have gone to help buy them new bedsheets, or something that they really need to make life just that little bit easier.

So, with every fibre of my being, I thank each and every one of you who donated. Each and every one of you who promoted my page to help me raise this money. Each and every one of you who read my blog and may have thought a little bit differently about IBD and how people live with the disease. To each and every one of you who told your friends about what I was doing.

Thank you so much.

Did I run the race in the end?

No. I didn’t. Because guess what? The amazing disease decided that it didn’t want me to run the race and I, once again, flared.

I was um’ing and ah’ing about whether I would run the race anyway because it was the weekend before I flew out to Australia.

I had been struggling with getting training in because I was tired and the more mileage I would do, the more exhausted I became. I was worried that I would finish and complete the race but ultimately put myself back in hospital.

Now I have been wanting to get to Australia for years. I had made it a goal and it’s all I thought about. It was a very hard decision not to run the race because I really felt like I was letting people down. Everyone who donated, wanted me to run the race, how could I get people to donate their hard earned cash and not run?! I felt like I was cheating people and I did not want to do that.

Then I spoke to a friend of mine, who also has Colitis. This lovely man had donated a lot of money for what I was doing, and I spoke to him about how I felt and he made me see sense.  Maybe it was the fact that he had put the most money in and he didn’t mind that I wasn’t running, or that he too had the disease and so knows where I am coming from.

Australia was my dream. How would I feel if I couldn’t go? I had finally booked my tickets and after three years of wanting this so badly, I was going. How would I feel if I had to wait another year because I ran a race that made me too sick to go?

I really appreciate the talk that we had, most probably more than he realises. Essentially I still feel bad that I didn’t run the race, however, I made my dream and am now living in Australia. I raised £410.00 for something extremely close to my heart and I will run a half marathon one day. I will run that race eventually for all the people who donated. I was just too unwell at the time.

That’s unfortunately a horrible part of having IBD. You make all these plans to do things, and then it rears its ugly head and pulls you under. It says, “Oh, you wanted to do this today? Well I say no. I say that you’re going to spend an epic time in the toilet today”

And bam, there you are in that toilet whilst IBD is laughing at you, and you’re sat there with a sore butt from too many toilet trips and a seriously messed up heart/head because you’re really gutted you couldn’t do whatever it is that you wanted.

As much as I try, I can’t plan my days. I can see this as a negative, or I can put a positive spin on it.

IBD forces me to take every day as it comes. Sure I do try to plan, I’m a Virgo, planning is ingrained in my soul, but essentially it makes me a lot more easy going.

I enjoy and appreciate the good days when I am feeling healthy enough to do what I have planned.

Essentially, that’s what you must do when you have a debilitating disease. You must take the bad, and find the positive, or essentially the bad will swallow you whole, and we don’t want this wretched disease to win now do we?