Pre-colonoscopy misery


Hi,

Me again – once again in a bad mood, feeling down due to tomorrow’s ordeal. Have ANOTHER colonoscopy- maybe my 4th or 5th one? I am only 22-  most of my friends don’t even know what one is, let alone are a regular at it. And that, is just depressing.

Its a glorious day outside, and I have massive deadlines due tomorrow as well (such great timing) but instead of being out in London, in meetings, working and enjoying the weather with my friends – I am at home, in my PJs, in bed, with the worst headache, no food at all for the rest of the day and only a glass of water and a snoring cat to keep me company. I am miserable. I wish this wasn’t what I had to go through, I am terrified about what the results will be – is it getting better? has it got worse? do I need new medicines? Which one? Do I have to keep self-injecting the humira? please, no. I don’t even know what to expect – I have had feelings recently that it may be playing up again, but what do I know, eh.

 

I hate this prep, I am not sure what I can and cant drink, I am not sure what counts as solid food, I am not sure if I have the preparation that literally makes me gag so hard I want to vomit whilst I drink it or the other one which I can cope with – that will be a fun surprise for me at 2pm. I am sat here, failing to do my work, all alone and feeling like absolute misery.

Recently I thought I was more ontop of this illness, but no. Apparently not. Crohns has a way of popping up and reminding you that you will never be fully incontrol, and its stupid to think you would be. I don’t need this crap right now.

So, 1-0 to Crohns for today.

 

Hope your having better days than me so far

 

H x

Colonoscopy #4 done and dusted


abd at age 22 as well, it isn’t fair. 

I’m back at work today and so shattered and tired and shaky I could cry. It took all my energy to get me here and I can’t cope with actually working and the thought of physically trying to get myself home again makes me feel ill.

I really struggled doing the picolax prep this time around, feeling dizzy and sick and helpless and more than anything terrified about the future. But it came anyway, the big day I was both dreading and wanting to avoid and the day I wanted to arrive quickly so I could better understand my insides. 

It went well and awful at th same time: the end result is that the humira is working, I did it. I got rid of the ulcers that had re arrived. They took biopsies to check at a cellular level , but otherwise it’s a thumbs up! I know I will be more pleased a out this when I feel better, but right now I’m struggling to even hold my hand up to type let alone think about future implications. 

However, it hurt. I felt the drug go straight to my head and welcomed it, the colonoscopy had hurt before so I was happy for any relief. But it was nothing like this, it was so painful and uncomfortable and make me hurt and cry, and it scared me. Apparently my bowel kept stretching or something which made it painful for the camera to come around.  The weird thing is I am still struggling with things like fatigue, so am going to experiment with my medication (my doctors trcommendation) to look at seeing if I can get rid of his fatigue. I hope to god it works.
I am so tired and so shattered and I just need a day off. I need a day where someone just cares for me and hugs me and looks after me. I need a recovery day. And I don’t get one, and that is terrifying. Although, my boyfriend has been amazing. He came down both days to be wit me before and after work and put up with my awful company just because he knew it would make me feel better. He can’t even know how much that meant, what a difference it makes when so often with this disease you feel alone.

I am sat here trying not to cry. I just want to go home and have a day to get myself together. I don’t know how to get through today. I am not strong enough o my own.

H x

I just want to hide away


fatigue can p*ss right off.

I am always hesitant to say that that is what I am suffering from because sometimes I’m just normal tired. And that’s fine. But I felt so exhausted yesterday but still went down to Southampton on a girls road trip to see our old house mate and go shopping; and I am so so glad I did- it was such a happy lovely day. But I got tired at about 5, and I mean struggling to open my eyes tired, not haut a bit sleepy

Now it’s nearly 1pm and I can’t get out of bed. I haven’t eaten or drunk, I just don’t want to move. I am fatigued and my limbs are heavy and my eyes feels like lead and I just never want to move again. But I have so much on in my life what with boyfriend, and not seeing family and trying to split time between mums and dads and trying to decide in a masters and to tidy my room and sort my washing for work next week- but I just can’t face any of it. Add it in the random bouts of unnecessary crying and the slight feeling of self disgust I am having about my looks / self confidence right now all in all it isn’t a good day. 

😦 

I have my colonoscopy next week so am looking forward to getting some answers! I have been feeling a bit sick after eating recently, so I am hoping that is just bad luck and not anything more – but I will just be glad To know! 

Hope your all having happier weekends than me

H x

I’m too tired to think of a proper title 


I do normally try with my titles – to think of something funny or interesting or relevant, but this morning having already been up for an hour (it’s now 7.45) and already at the station waiting to fight for a seat on the train; and I just can’t be bothered. I am so tired. And so fatigued. There is a difference between being tired and feeling like this, and I just wish I knew a way to make it go away
Anyway, this is an update about hospital on Friday, sorry for the slow blog been busy LIVING MY LIFE and having the most amazing weekend with my favourite person, who I still can’t believe is crazy enough to want to date me! so hospital was fine, overall. So no big change or not drama, but it was still important to me. we had to leave really early to get to Southampton, and it is such a pain going back, but I really like and trust my specialist so it is worth it! 
The appt was standard, get weighed (depressingly fat right now) and have a chat about how I am feeling and hoe it is going etc. I was proud of how I spoke and handled this, because I wanted to be clear that I was both feeling better and not so good; and that j was both happy and unhappy ; and that isn’t always an easy thing, let alone when you are trying to say all this without sounding accusatory! So I said I am feeling a million times better than I was when I was ill, that I am so much more able in my everyday life and that I am getting used to the humira injections. But that I feel I have been thrown in at the deep end and left, that I am getting headaches and the fatigue is whooping my ass, that I am scared abou the side effects of hunira and the lack of monitoring. That I basically want to know if it’s working and then I can gauge if it’s worth continuing. It scares me to have to be only 21 (MY BIRTHDAY IN 5 DAYS) and be pumping a drug into my body which has unknown long term side effects, and not knowing what it could do to me, or when it would happen. 
So I think he didn’t get me to start with, but he did get it at the end. He said he had found a department in London he would be happy to transfer me to, which is so amazing; but it just wasn’t something I wanted right now. I mean I do want it but I don’t want to be moved and fall through the cracks and never get the answer to those questions! So I asked to stay, he took a whole set of bloods, testing everything! And I also gave an extra vial to a DNA analysis test which can be linked to crohns and seeing how it works and if there is any link (FYI I think that’s so important, keep trying to help them understand because one day it may help you, but also- don’t you wish someone earlier had done th same to help you? So you should help others and the general understanding of this misunderstood disease) 

He also has scheduled a colonoscopy for a month, so that we can see how actual crohns is doing.  It makes me sad I am not that surprised and that I will be 22 and having yet another one when most of my friends don’t even know what it is. #lifeofacrohnie
So much going on in the life of just one little person

H xx

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

through the video camera


So, last week I had to do a group presentation for one of my modules – and we only had two weeks to compile and get the abstract approved, and create and practice the project on a topic which was entirely out of my comfort zone; sustainability.

It was interesting for me to work with entirely new people all of which were differing ages and from different disciplines to my own, and although at time it was challenging, it was an experience I relished. I got my grade back yesterday and came away with a first for that part of my course- YES! I couldn’t have got a better grade, and presenting is what I generally see as one of my weaker points..I was so happy! It was this presentation that I wanted to consider though…because we were filmed doing it.

I have just found it online, and watched myself present (it is meant to be an exercise to see any “ticks” or obscurities that you carry across whilst presenting, and then to be able to correct these and improve yourself for the future) but I just looked at myself and was proud. THat sounds ridiculous, and smug – but its true. Whilst presenting I had my little notecards, I had practised enough but I stood there and I was nervous and I made one or two awkward mistakes where my voice broke or something ridiculous – but I laughed it off and carried on. I look up at the aurdience, I made contact with them. When it was the question session I could laugh and be serious, I could encourage people in my team and answer questions – and I looked confident. I watched myself and thought, I’m not too bad. And you know what? When I was presenting I felt it too – a surge of confidence which said yeah, look at me. I know what I am talking about, ask me questions, I will know the answer. I worked hard on this and I am proud of it and It really made all the difference.

I know that sounds so up myself, and like a post that was purely to brag – and maybe it was a tiny bit of self indulgence to write this. And if so, I am sorry. But it was amazing for me to see myself standing infront of a group and talking and laughing and being normal and strong and confident, succesding in my studies at least in this area. BEcause it was only 10 months ago I started this blog, and less than that that I was rushed to hospital in an ambulance, and less that that again that I was lying in my hospital bed feeling alone and demoralised and unable to see myself getting back on track at university. For so much of second year I shied away from the spotlight because of Crohns and the awkward rumblings and the insecurities and everything else that came with it// But know I have beaten that.

Just on a side note (and I cant believe I didn’t post about it!) I GOT RESULTS BACK FROM A COLONOSOPY LAST WEEK AND I AM OFFICIALLY CROHNS FREE. sorry, don’t mind me while I victory dance away in this corner *woop*

Flying high guys, up in the clouds today…hope you are all up here with me 🙂

Happy days indeed

H xx

Titleless


image

Just an add-on to yesterdays post,  this is my right arm yesterday with the cannula in – the first in my left was unsuccessful and is still painful today :/

I sent this as a snapchat to a few of my friends who wanted updates on how yesterday went and I was too shaky, nervous or sedated to type properly – so a quick snap was perfect!

Something that made me sad, but also made me laugh ; was that so many of my friends were grossed out ir shocked by how medical it looks- in a hospital gown and bed with needles taped into your arm. Yes jt isn’t the nicest sight, and Im not exactly the biggest fan of it- but I am so used to it now, so used to hospitals and the procedures and the rest that it seems not so bad to me. It saddens me that my life is just that little bit different to all my friends in that this scene is a part of my life and one that is still so alien to them.  This “casual-ness” (sorry no idea of a better word ahha)  on my part towards the procedures backfired a little bit yesterday when I acted fine but then reality hit me about two hours before the colonoscopy and I felt so sick and shaky- putting on a brave face is fine but I need to remember to allow myself a panic and time to prepare!

H x

Colonoscopy 2 done and dusted. OUCH.


owwwww

owwww

owww

oww

ow

ow.

Seriously. Just to re-iterate. IT HURT THIS TIME.

So. I needed this colonoscopy to be done, because its 9 months since my operation and I have been due to have it for the past 3 months, but unfortunately due to personal circumstances, university work and several other reasons I wasn’t able to get it done. Regardless of knowing that this was coming for a long time, I was not ready for it! I have been trying to act casual and stay calm for a long time about it, even talking it down to my boyfriend and housemates – but I was terrified both of the procedure, the cannulas and the fact that I would be hearing results and I was nervous about what they would be!

Anyway I took the Picolax for the last day, and this morning as required. I also was fasting and being generally a little nervous and miserable! Although to be fair, my friends did a fantastic job of keeping me busy and keeping my mind of it. So this morning I was hanging out in my house with my housemates who were all hungover from a night out (which I couldn’t go on :/ damn crohns!) and then they had to go out / go home so I had a 2 hour wait before my dad arrived to take me to the hospital. I watched some iplayer and then packed a bag; since I decided to come home for the weekend to recover and see the fam.

We got there at just before 3, and were shown to my room where the nurse came and asked for the last few details – and then I had to do a pregnancy test to check (NEGATIVE incase anyone was worried 😉 – I wasn’t!) and then got in the gown etc and waited. Spoke to my consultant again, who is soooo lovely – and then about half an hour later a nurse came to collect me and off we went. I was pretty nervous but everyone was lovely and I settled down and got the oxygen mask on before they put the cannula in my left elbow for the sedation drug. However it wasn’t in properly or shifted so when they tried to inject anything it REALLY hurt and when I told them they decided they had to do the other one as well; which was horrible and painful and I hated every minute! I don’t think I had enough / as much sedation as last time because I was all too aware of what was going on! Regardless we ploughed on, and got it done – although at time it was so so painful I was moaning and yelling! It was so uncomfortable and although everyone was lovely I was near to tears at times; very unlike when I last had it done. The upside of all this drama was that…

…he said there is no signs of crohns returning at the moment! YES YES YES YES YEEEEES!

So very happy, only just really starting to sink in now! They took some biopsies (how weird to see on the camera them pinching out bits of your insides haha) so waiting for those results, but feeling so happy about it all!

Finally got wheeled back to my room, had lots to drink and a sandwich then quite a long nap! Dad and I just got home and am spending the evening chilling out at home and getting some TLC and trying to let my poor left arm recover, its seriously sore!

So a painful day, but one that was worth it for the news I just heard!

Apologies for the long post! Wishing you all a pain-free happy weekend 🙂

H x

I think the hospitals miss me


So, its been 10 days since my last blood test and about Christmas since anything more intrusive / intensive than that has happened – but it was getting too good to last! Before you panic, Crohns has not returned (or at least not that I know of, yet) but my doctor yesterday asked me to go for another colonoscopy some time in the next 3 weeks, since it will soon be nearly 6 months since the operation – mad!

 

Anyway, of course I will be getting it done as per his recommendations (as long as the insurance company agree) and I will also get it done ASAP, since it will be a peace of mind to know if it has entirely gone and if not what has developed again so that it can be treated more aggressively from an earlier stage. Although, in my head I know it could be back and even if it IS back it does not mean that it will be as bad as last time…if I hear that is I think a little bit of me will be crushed. It would seem a little in vain to have all of that done and then to be clear for less than 6 months. But, we shall cross that bridge as and when we come to it I suppose!

 

H x

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