Officially Back. Officially Scared. Officially Sad.


Hi all,

Got told on Tuesday that my Crohns is almost definitely officially back. The pain, the tiredness, the bathroom trips, the blood results…all adding up to some “not good news” as everyone refers to it. Your bloody right its not good news. I could write an entire essay rambling away about how unfair I find life right now, how I only got a year, how I want more time without having hospitals back in my life, how its unfair that blood tests and hospitals and medicines are a part of my daily life aged 21, how I am scared about my future health, how I don’t know how this will affect my relationship and friendships, how I am scared and so, so much more. But I won’t. Because, whats the point?

I have an emergency colonoscopy booked for tomorrow, so busy with the picolax (grim) , so hoping to at least find out whats going on in there by tomorrow. Got back a second set of blood test results from Tuesday which have come in as normal – woo – which is something at least! But I guess it could just mean that the flare that I was in has died down, but im worried- will this still show in my colonoscopy? How do I know?

In the meeting with my specialist he talked through some options for if it is back, including going back onto a steroid or using Humira or Infliximab (spelling is awful, sorry) and both of those sound scary and horrible and medical and I don’t want to have to face reality and think about them and the consequences. I want to go back to when my scar was just a reminder of those old days, when it was nothing more than a story I used to tell people who asked.  I have so many lovely, caring amazing people in my life and all around me – all of whom are already rallying around to help me shoulder the burden of this disease; but do they really know what it will be like? how can they sit and tell me it will be okay, when they have no idea, none of us do. I am scared. And that’s not a nice feeling. Its weird how you can feel so isolated surrounded by people who love you. I want someone to be able to tell me how my future will be, that this will all work out okay in the end, please?

Depressing post, sorry. Hoping your run up to Easter period is going better than mine 🙂

H xx

head up

Tuesday the day of Doom…


So this Tuesday I had a bit of a crazy schedule, a day which perfectly shows how I have to try to fit Crohn’s into my everyday life, and how manic it can all get.

Firstly, I had a 9-10am lecture ( the last one of this module before Christmas), and then a 10.14 blood test to monitor my levels since I am now on the Azathriaprine. Sounds simple enough, since the lectures are meant to finish at 9.45, and then I had time to collect my friend from home and we could walk up to campus where I get the bloods done at the uni doctors.  But, sods law, the one day I was in a rush afterwards they decide to overrun – typical! We were having the second half of the lecture on gunpowder and why it is a wonderful object, and our lecturer (also a chemist) decides to just whip up a sample of gunpowder to show us and had bought a few fireworks so off we duly toddled to watch the fiery explosions outside, plenty fun enough but not what I needed when in a rush! Luckily I rang my doctors and managed to get the appointment moved to half past, so made it just in time!

 

For some reason it hurt more this week, not sure if my arm is just getting fed up of being poked every Tuesday, or if the nurse was just having a bad day, but there we go. Then next on the agenda was a brisk walk home to collect my osteology module folder, then a run to the labs for a lecture 11-12.30 and then a test worth 10% of the module. stress! After that had then do another jog home again to be home and eat before my mum and her new boyfriend got here – first time meeting him! They had come down because I had another hospital appointment at 4.15, with the specialist and she wanted to chat to him since the whole operation idea became more of a reality.

Anyway, mum and boyfriend arrive, we head off to pick up my friend from campus and all went to town – my friend and I were heading to a masquerade ball in the evening and needed masks. We found them in town, and had a wander round and then headed to the hospital where my friend and mums boyfriend waited outside whilst mum and I went in. I explained to him the pain I have been in and how it is really affecting my life, and he basically said lets get this operation done asap – I think I stopped breathing for a minute! *PANIC*  Anyway we discussed the realities of the surgery, and then he explained I would need another MRI, and colonoscopy before the surgery could be arranged, as well as having to sort it all out with my insurance company. Crohns has really made me mature as a person, made me grow up and take responsibility and learn to be more organised; I feel able to deal with doctors on an equal footing, and now know I am capable of handing decision making and organisation. Reading that back it sounds a bit like  I am writing some sort of CV for myself, but its the truth – I really feel it has made my better as a person – need to keep looking at the positives!

He managed to book me in for an MRI the next day, and then a colonoscopy after Christmas. ARGHH I knew that I would need to do all these things again, I know this operation is happening buts its still so scary. Really, its not a small thing, not for me at least. I just needed to face reality and get on with it,  though I have a tendancy to ignore it and pretend it isn’t happening until it actually does.  After all that drama, we went out for dinner and then the ball -which was soo lovely!

 

Apologies that the post is so long,  I just was wondering what you guys do when things are scary or tough, any coping mechanisms would be appreciated! Although things are scary, but I am moving forward and hopefully upwards, and getting on with the next few weeks

 

H x

 

 

 

And so she shall go to the ball!


Morning all,

Since my last post a few days ago I have been feeling decidedly better, both emotionally and physically; am feeling much more human and ready to face the world, and my Crohn’s head on.  After my last post, a bit of a cry and a nap I decided I had to try to go the Christmas Ball that my university was hosting, since my friends and I had all bought tickets and had all been looking forward to it, I didn’t want to end up staying behind on my own and feeling miserable or making my friends feel like they had to stay behind to look after me and then ruin their night too…so anyway, I had to wear a dress with elastic high up by my bra strap with a floaty-er bottom to stop it pressing on my tummy and hurting, but off we went! I had made sure that I knew were the nearest taxi rank was, in case I just had to abort the mission and head home, but when we got there laughing with my friends, being all dressed up with the music playing really helped (as did the drinks!) and I felt a lot happier and glad that I had made the effort to go 🙂

 

Since then I have been rushing about work wise trying to balance several different assignments that I have due, and catch up with one that I got behind on due to having a flare-up last week. After talking to my consultant he told me I should be telling the university about my illness, especially now it seems to be affecting me more – to see if there was any support available and to let them know about the potential operation. Anyway, I duly fired off an email to my tutor (who appears to have no office hours at the moment -.-) and then also emailed the lecturer running my module that had an assignment due yesterday, because, as I explained, I felt that due to my illness taking up so much of my time this last week I would be unable to complete the task to the standard I would like, and I asked for another 24 hours just for proof reading and the like. Needless to say neither of them have replied to me, even now, so I was left scurrying around stressed trying to get the essay in, ad thankfully after an extended afternoon sesh in the library I managed to. My dad said that if I cant get hold of my tutor soon I should just loiter with intent around the archaeology building – but I decided to give him until next week, if no news by then he can expect to see a grumpy looking student hanging outside his office until he opens the door!!

 

I got some more blood test results yesterday, I am having them weekly, which said that my haemoglobin and white cell count are decreasing a bit, so to talk to the doctor- I have an appointment with my GP tomorrow to get a repeat prescription anyway, so that’s just one more thing on my “Crohns list” that I have to sort out. That’s part of this that I am only just coming to terms with, the emotional and physical sides to this disease yes – but personally it just adds a lot of work onto my life. It includes going to blood tests, getting results, ringing consultants, double checking with GPs, making new appointments with specialists, getting repeat prescriptions, talking to my tutors etc etc. ..its all extra hassle that when you are feeling down feels like a never ending, constantly growing list! Anyway, at the moment I am pleased to report feeling better than I have for the past few days, and merrily ploughing on with some work due after Christmas to try to keep ahead of myself incase I have another bad few days soon.

 

Bring on the Christmas meals (in small, manageable portions 😉  ) the tree and the family! Looking forward to the next few weeks, and hope you all have something nice planned too  🙂

 

H x

The bad day that started it all


“I know my texts are annoying you because you can’t do anything

to help me right now and I’m not texting to make you worry

or feel bad, but I worry my friends are going to get fed up with me

and since you are stuck with me its easier to text you. I am feeling so down

about this all, I’m so sick of being ill, I don’t remember the last day I felt

normal. I have a ball tonight and my stomach is so sore and bloated I’m

not sure I will even fit in my dress or go. I’m sat in the library frantically

trying to work because I’m behind on an assignment and its all I can do

not to cry and I don’t even know why. I’m so sad today and nothings going right

and I cant do my work and the medicine isn’t working and its making me

put on lots of weight and I’m still getting cramps from Friday

😦 x

This was, letter for letter, the rather miserable text I sent to my parents yesterday morning – its pretty self explanatory. I was having a bad day, and not a physically bad one but emotionally – having Crohn’s is like many diseases, half the battle I have found is the emotional and psychological battles that come along with it, and these are the ones I am only just realising I have to fight too.  It sounds very over dramatic, and I want to stress it was the accumulation of a bad week health wise which just all got on top of me – but it happens, honestly, it was a horrible day where I felt like why me? I don’t drink (much – I mean, I am a student 😉 ) I have never ever smoked, or done drugs, I am so sensible with my body, am reasonably healthy and in okay shape, so why should this all happen to me?

I have reached the point where I was so far into the treatment (in my eyes) that I had lost the initial enthusiasm about the medicines working, but not far enough to see an end point, or at least a point where it would stop interfering with my life in every aspect as it often does now. It was during the dark depths of yesterday afternoon that I realised, I cant be alone. What I needed is someone or some people to talk to who understood what I meant, I love my friends but I don’t want them to get sick of my moaning and groaning, especially when they don’t really understand the types of pains and emotional stresses I am under – I try to act as normal and shield them from stuff, so that they don’t feel the need to treat me differently. Then searching online I found some tips and advice, and after a day of feeling awful today I am on the up again.

This blog is a way for me to share with you  my journeys and ups and downs, and hopefully to contact others on a similar journey. As well as anything else, this blog is for others to read and to understand more about the honest implications of having, and living with, Crohns.

H x

Welcome to my world…


So,  my first post… exciting!

I’m not really sure how to write this in a way that doesn’t sound either massively cliché or boring, but I will give it my best shot!

The reason I am creating this blog is because yesterday I had a really shit day, and I thought, sod it, do something for a change to make yourself feel better- and this is what I decided to do. The reason I was feeling so bad was my Crohn’s disease – something you will hear my rabbiting on about in the future I’m sure!

Instead of me trying to regurgitate everything the doctors have told me, here’s a basic summary of Crohn’s:  http://crohns.nutricia.co.uk/crohns_disease/what-is-crohnss-disease-cd

And a little bit about me:

I am 20 years old and am studying archaeology at university, just finishing my first term of my second year – starting to feel the stress! I love my course and the people I live with are my best friends, and am super close to my family who support me in everything I do. I hate writing about my Crohns as part of one of the things that defines me, but I guess I have to accept that it is part of what makes me me, and in some ways it makes me a better person. I was diagnosed last year after several months of doctors thinking it was different things, and since then have been on a number of different medicines, steroids and the like. I am currently on Azathriaprine (sorry my spelling is awful!) and just came off the steroid Prednisolene a few days ago. So far it is having little effect and I am feeling worse then ever both physically and mentally, so my consultant is considering  a surgery in the early months of next year – scary

But, this blog isn’t just a way for me to rant about my illness, its meant to document my sad days like yesterday, my frustrations and struggles, but also my triumphs – for I am hoping to have a few of these along the way! I hope it lets other people relate to me who are in a similar situation, but also that it raises awareness for Crohns, which I feel is like an invisible and isolating condition to have.

H x