Happy 4 years, little scar


OKAY, I KNOW I ALREADY POSTED TODAY.

But, I just realised, it was 4 years ago today, exactly, that I had my operation for Crohns!

How life has changed…goodness! And also just over 4 years that I have been blogging here, crazy to be able to look back over all my posts and see just how my life has progressed.  I went back and read my posts from every December over the past 4 years, just to see how different my life has become, and it is CRAZY.

So, in memory of my scar. And THAT day. Here are the things that stick in my mind from that time:

I remember going there, and waiting in my gown and stocking thinsg, and mum taking a photo and I looked about 12 – the combination of lack of makeup, being ill, and being terrified. The Anaesthetist was delayed, so we ended up waiting so long to go in, that my adrenaline kept fading away, then someone would walk past and it would go again. I remember I had just got my ears pierced and was so worried about taking the earrings out for the surgery (had to) and that they would heal over. I said to my mum when she saw me wheeled back she HAD to a) check if I had a stoma, and b) put my earrings back in! I remember walking down the corridor in my slippers and dressing gown when the time finally came. I remember ling on the bed and trying to be calm, but being so scared, and the whole thing feeling surreal. The nurse was talking to me, trying to be nice and calming and asking about my degree and my life, then feeling my limbs going heavy as the anaesthethic kicked in, and being outraged that they hadn’t asked me to count backwards from 10! And then, I remember waking up in this bed, with this lovely nurse with me – I just opened my eyes and was so tired and groggy and a bit tearful. He smiled, and said hi, and held my hand, and gave me the morphine button, and stroked my hair away that was stuck in my face, and I just slept, slept slept. I remember getting wheeled into a lift…and then seeing my mum. And sleeping. And hurting. And asking her to check if I had a stoma. And seeing my swollen, bruised, bloody and bandaged stomach (sounds dramatic) and just sleeping. And then the next few days are a bit of a blur!

 

I remember needing more morphine per dose. I remember being sick in the night. I remember that time lost its meaning  – there was no real day and night, I just slept and watched TV whenever, there was always nurses about and every few hours they did checks, so I never got fully to feel like there was a private night time. the only difference was when my family visited, in the day time. I remember having weird morphine induced phone calls (although they seemed normal at the time). I remember crying and calling my parents asking them to come and save me, and telling them what awful parents they were for abandoning me, those 2am times in pain and all alone, they werehard. But that Christmas day, when my mum decorated my room, and at 2am a different nice, bald nurse man sat with me and chatted. And he had an accent, although I cant remember what. And he was so nice, and talked to me for ages, and made me feel less lonely. Then all my family rotated through the hospital, and we played a game that made me laugh but that hurt my side so then I laughed more at the fact I couldn’t laugh! And I ate a chocolate pot for my Christmas lunch which was the biggest thing I had eaten in days. And I was able to show them how I could walk across the room. I remember my mum wheeling me about in a wheelchair, I remember being unable to walk to the chair let alone the window, I remember, so much. It is is so weird.

I am so proud of me, I was so strong. Not as much as others, I know, but , I was. For me. And I am proud of my family, and so amazed at the pain I was in, and what I overcame. And what I went through before that, to get to that point, and to get past that point. And obviously so much in my life has changed since then, but I am glad to report,  touch wood, that crohns is still one of them. I am, so far, still in remission (after another flare up post op) and I hope to goodness I never get put back into that situation.
I am sorry for the long ramble, entirely unexpected. but knowing what I was doing 4 years ago – lying in that bed, asleep, hurting, confused, with so much still to come…well, it deserves a bit of reflection.

 

H x

Cheeky Little Update…


So I have nothing that special to say (probably NOT the best way to start  a post, but hey ho! Honesty is the best policy and all that 😉 )  but feel like its been a while, so thought I would just check in and fill y’all in with the nothingness that is going on at the moment 😉

 

I have had a LOOOOVELY Christmas and New Years period, not in half because my boyfriend has had some time off and it was nice to be able to see him for more than just a weekend, although unfortunately not that much longer 😦

I went to Winter Wonderland twice – once with the family which was super sweet, and once with my boyfriend which was lovely too 🙂 Also we went to see the new star wars in the Electric Theatre at Notting Hill – which I CAN’T RECOMMEND ENOUGH. So much fun! We actually got the tickets from our friends who couldn’t go, and they had very exciting-ly bought some of the seats at the back, a nice comfy sofa with tables, blankets and the like – and we enjoyed the film in 3D with the company of a HUGE chocolate brownie and some drinks, so nice! I have seen a lot of family and friends over the last few days, one of my best friends is visiting from Australia, so that’s exciting and been nice seeing him when I can; although Masters work is really starting to get in the way! (how annoying!)

I am genuinely feeling the “job stress”,  I would LOVE to work in a museum environment, or a heritage environment like English Heritage; and specifically in the education department, but right now that just seems impossible, which is pretty depressing. And the only jobs that exist are on what appear to be the tiniest every salary- not enough for me to move out and do the things I want to be doing, so that’s quite tough. I am trying to apply for them still, and also start for some grad schemes – it stresses me out that after the end of this masters in just a few short months now I have nothing to go onto, and that terrifies me. I feel like I am being left behind. I also broached the idea of moving in together with my boyfriend, which didn’t go down that well. Not gonna lie, that hurt pretty bad -rejection isn’t something that’s fun to feel; and although I get his reasoning, doesn’t make it much easier! And the fact I have 0 job and 0 money to look forward to means I feel even further away from him, and the life he is moving towards. Not that he has done anything to exclude me from it, its just so far from where I am / could be, and that scares me! BLEUGH – no point in moaning, I guess it will happen or it wont!

Crohns has been fine -back on the humira injections and Azathiaprine. One thing that has been a pain is I got a cut by my ear, like where the ear lobe joins your head (if that makes sense?!) and I must have had it for over a month now and it just WILL NOT heal. I guess due to my new potato-like immune system, but its so sore and just getting worse, which is pretty annoying!

 

Hmm ,for a post where I had nothing to say I managed to moan / ramble  quite a lot!

Hope you are all well and enjoying your New years,

H x

Fom sad to happy all in one call


CHEESE ALERT RIGHT HERE

I am way too quick to blog when I am sad, but this has to be the biggest shoutout to my favourite person, my boyfriend is incredible. I know like  90% of people will have just stopped reading, and to those of you powering on – thank you. (Side note: does it count as a shoutout when you are anonymous, you don’t mention any names and you have no intention of telling said person you wrote about them? Perhaps not…but you all get the gist 😉 )

 

Today is sunday, and I had a fab time with my family yesterday but was feeling the guilt for not working. So the plan was to get up and go to Santas grotto with the kids (my half brother and sister aged 8 and 4) then go for lunch together before coming home for the afternoon and I had planned to work. It is now 1pm and my stepmum earlier decided to go out shopping with my sister, and they have just not come back. It now means we aren’t going out for lunch because we have no time, I wont be able to see the kids meet santa because I have to work this afternoon, I feel like I wasted my morning and my work is going sh*t so I was having a bit of a feel sorry for myself. I had a little text-y moan to my boyfriend, sulked up back to my laptop and proceeded to eat a large handful of chocolate maltester things (which although delicious I now feel guilty for, considering I am more representing a whole pod of whales than a single human being at the moment. FML)

Anyway, we all have those times, but I think I let them get to  me more. I over think things, I feel sad, I feel tired, I let it all get on top of me. I  forget to think about the good and how lucky I am, and instead feel sad for no reason and then spiral – many a good day have I ruined in such a way. Anyway, I sent my boyfriend a snapchat of me eating the maltester things- since he had bought them for me last week or so; and he called me. He called me just to say he loved me. Just to say keep going with the work, just to say he missed me. And I of course promptly burst into tears – great work me. I honestly don’t deserve him. We are having a weekend away to have some space, so I can work and see family and so he can relax with his too – and its weird and I am not sure I like it, but at the same time I am enjoying it – but what I mean is, I am not his problem this weekend, he has no obligation (aside from being my boyfriend haha) to be looking after me, and yet he still is. He is fantastic and lovely and kind and sweet and I don’t know what I would do without him.

I realise this is one of the worst-written most cliché posts I have done (or if there are others worse than this, apologies!) but I had to type it, I had to say it, I want to shout it from the rooftops. I feel happy, pushed back up, lucky and determined. I think having so many shit days with my illness, I am used to just crying to myself, putting on a smile and faking being okay for so long; and now I have someone that I don’t have to fake it with, and who doesn’t care that I screw up probably more than I get it right, and that, THAT is something incredible.

 

On a side note – its 2 years today since I ended up in an ambulance and en route to A and E for 12 hours, how time has changed. Feeling so grateful that I have come so far from there, and so hopeful things never go back. Also a memory of my best friend from uni, who took perfect care of me, called the emergency services, helped me get dressed, held my hand, stayed with me, everything. I really am lucky. Friday 13th of 2013 was a bad day for me indeed, but Sunday 13th of 2015 is a day of reflection and of trying to be more grateful for everything I have.

H x

Recovery Time


Turns out having surgery to remove part of your insides and getting stitched back together again is something you don’t bounce back from all that quickly..

From all the talk before hand about needing weeks to recover back to 100%, and having to miss my university exams in January and the deadlines for coursework that I have – I never really appreciated just how much it would affect my everyday life, I know, stupid, I had buried my head in the proverbial sand in an attempt to ignore the changes that were approaching in my life. After the operation I was in a very weak state, only what was to be expected in retrospect. As I described in my last post, https://livingmylifewithcrohns.wordpress.com/2013/12/30/the-operation-with-a-capital-o/, when I woke up I was hooked up to several different tubes running off into some scary looking machines; but at the time I was in too much of a morphine induced haze to care. I think in summary of the entire procedure I would say im surprised at how little the actual wound hurt me, but shocked at other issues (such as a sharp pain in my shoulders, that was apparently caused by the air pumped into me during the keyhole surgery which had not yet escaped) and how they affected me. In all honesty it was a little bit terrifying, I cannot remember having so little control over myself – an inability to even sit up and hold my own cup of water for the first day or so. Not something I want to repeat. I was lucky enough to have my parents stoically by my side doing everything from holding my hand constantly for the 5 hours they stayed, to sponging my mouth with water when I couldn’t drink, and sitting in a silent room bored watching TV whilst I slept – I don’t think I will ever have enough words to say thank you.

Anyway, this is due to be a general post about my recovery and the related activities- I am pleased to report that as of today (tomorrow will be two weeks since the surgery, and one week of being at home) I am feeling a lot more like a human being! I am managing to wear nice normal clothes again (a new dress from Christmas yay, with tights rolled right down so as not to press on my stomach) and managed to get driven into town to hobble to a coffee shop to chat with my friends; all of whom are sadly going back to university this week. Its official, I missed pretty much my entire Christmas break being dependent on my parents or in hospital and unable to leave the house, I am truly not impressed. Aside from that the eating is going really well, and feeling a lot more independent and happy that I may actually get my life back – something which seems a long way off on Christmas morning in a hospital bed! The day after I was discharged I was advised to have a bath to help remove the dressings and as a relax, which I duly did (do love a good bath!) and the wound started to bleed- HELP! It was only droplets at a time, but pretty steady and after no sign of it stopping we were advised to go to A and E. It turns out that they reassured me it was nothing but some “healthy bleeding” as the muscles etc had been cut through, and it wasn’t infected. They were all busy admiring my wound and saying what a beautiful scar it will turn out to be- I think you have to be a nurse to see it, I hate it! Aside from that, and 5 days on it is still bleeding a little bit, I have to have a foam plaster/ dressing on it all the time to stop it leaking onto my clothes, but I am hoping it is part of the healing process.

I think, and I rarely speak about myself like this, but I think a bit of self-congratulating is in order, both mentaly and physically. Well done body, you have taken less than 14 days (yes with some medicinal help) to get back into a semi-working order, something that has allowed me to be a person again not just a bundle of clothes unable to do anything for themselves. I am impressed and proud with how well I can walk – when I went to A and E when I got back, about the bleeding, they couldn’t believe how well I moved and that was nearly 6 days ago! yes, its slow walking, yes I cant walk far or for long, but I CAN walk. One week ago my biggest achievement was making it shuffling round the ward to the lift and down into the main entrance of the hospital, and now I am managing to function normally enough to get into town without attracting too much attention and to get around my three storied house all okay. GO BODY. Aside from that, I really don’t think I moaned too much about it all – I did let it get to me, and I am feeling the emotional strain from the operation and everything I missed; but I think that I coped well and have accepted what is happening as a force of nature and something this has to happen, no point crying about it. In the spirit of this paragraph I have to be honest, in the dark depths of my worst night in hospital (I think the Monday night?) I texted my parents asking them in the most ratinoal way possible to break into the hospital give me painkillers and smuggle me home because I was dying alone in the hospital and I had never been so miserable. Potentially a bit cruel on my parents, as I knew at the time they would have to say no, and then I got angry at their lack of care – how dare they not break me out?! Aside from that blip, I think I coped well and I got on with it, and still am so now. Even as all my friends head back to uni, and the partying, and the socialising, I am stuck here at home – but I am determined to make the most of it, enjoy the home cooked food and the family support.

I don’t feel the need to go into the details of all of my recovery – it would read as a boring and elongated medical diary to everyone out there; and I am hoping that more people will follow the blog, rather than bore people senseless! I had the catheter in for about 4 days, and when it was removed it was pretty scary – I suddenly felt like I wouldn’t be able to cope with controlling my own bladder; and although I was fine it reminded me just how fragile everything was, and how much I used to take basic bodily functions for granted. I had the cannulas switched to just one in my other hand as they became very sore, and slowly as the morphine usage reduced I had that removed too – I think on the Tuesday? I struggled quite a lot with sickness, but slowly that decreased as my water intake upped and I began to eat. It took me about 3 days of just on yoghurts, jellies and soups before I mangaged to eat without being sick – and I am talking about 3 or 4 mouthfuls as a meal, nothing really. On Christmas day my big meal and treat was a chocolate mousse, of which I managed to eat half – wild child! I had to keep forcing myself to eat little and often, and to go on walks around the ward which I tried to do at least twice a day, going further each time. By the point of leaving the hospital I managed to be able to walk for a reasonable distance, and could eat small mouthfuls of “normal” food without feeling sick. As of today I am pleased to report that (touch wood) the progress is constantly upwards, slowly but surely and I am determined to build myself back up as soon as I can.

I am sorry for the long and rambling posts. When I started this blog it was a way for me to track the physical and emotional challenges I am facing; in an attempt to increase awareness about Crohns and to come in contact with others in similar situations. Never did I expect that within the month so much would happen to me, and so many changes would occur, or that I would lose 15cm of my insides! Please, comment below or message me, I would love to have some feedback on the blog or on anything you guys are interested in; or general interest in terms of others experiences.

Keep Smiling, and a happy new year to you all!

H x

want to get off this rollercoaster…


sometimes it all just moves a bit fast

after talking to my specialist today he wants the operation moved forwards as quickly as possible – I understand why, I don’t want to go through that uncontrollable pain and end up in A and E again; but neither do I want this operation, although I know it is the lesser of two evils. I am just terrified, and as of now I have an appointment tomorrow in Oxford to choose the date and details of the surgery, which I am probably going to have before I go back to university. It is not only so scary, but it is all the after effects and the recovery and the effects on my life and exams and friends and everything…

 

a bit of a rambling hopeless post here, but I really needed it off my chest. I have been trying to keep my head up high and stay focussed on the positives, but its not easy when everything comes at once and its overwhelming and scary. sometimes, more than others, I hate this disease and everything it brings with it

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

 

 

 

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