#getyourbellyout


#getyourbellyoutfinal

I know I have posted about this already, but just wanted you to know – I did it. I made the jump. I posted this on my social media sites – facebook and instagram are now up to date 😉 it was a big decision for me to put it onto facebook, now everybody knows. I don’t want judgements, or pity; I don’t want sympathy or revulsion – I just want to spread awareness. I don’t expect any big revolution to come from it, I know all that will happen is a few likes or comments. But to me, its one of the biggest steps I have taken. Its out there now, lets embrace it.

H x

PS – it has already got a comment from a girl I used to be in halls with saying how she suffers from IBD too, and that thank you for pointing it out and how she never knew etc, I guess there are people everywhere going through the same thing, but we just need to put it out there loud and proud until everyone does it. I always felt so isolated embarrassed and alone – but seeing all these other people gave me the push to do it. I hope that I can push others too as well !

“The greatest healing therapy is friendship and love”


scar

title quote from Hubert H Humphrey

This is my scar as of yesterday, and yes, finally I see progress! Maybe that is a little Melodramatic, but I can finally begin to accept that this scar is mine now, I claim it as my own and move on and get on with it. I don’t need to check it every hour, its still there, its still “ugly” but its fading and healing and one day I will have to point it out to people who will squint at my stomach and dismiss it as not much. I look forward to that day – ironically I guess I am going to miss it. It is pretty much the only physical reminder I have of my Crohns, and as such it is something I can show people to prove I was ill. If my stomach hurts, I can show my scar, if I am feeling too tired and drained from being ill, I can show them my scar; but in the future the scar is going to fade and I guess I am scared that with it too will fade peoples belief in my illness. On the other hand, I am hoping that the Crohns is going to be in remission for a while now (touch wood) because of the operation and the medicines I continue to take, but who knows…

This post started as something quite jolly – my scar is fading and it was a bit of good news to update you all with…but somehow it turned a little bit sour when I started writing. You know that feeling when your typing and more thoughts just flow into your head and change the direction of the sentence? That’s what just happened here, that little revelation struck me that actually (loathe as I am to admit it) I guess in a weird kind of way I am going to grow attached to my scar, my little battle wound as it were.

Moving on, the reason I picked that quote as the title to the post is because at the moment I am feeling positive and happy, I have a lot of stresses and pressures on me, and I am feeling a bit bogged down with it all – but I keep being reminded of what amazing friends and family I have all around me, and they buoy me up on my bad days. I am so grateful to every single one of them.

Hoping that you are all having a lovely weekend

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

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 clichĂ© 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