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

Just call me whale woman.


I am so fed up right now.

I feel like no job wants me, I have no money to move out, my family is falling apart like theres no tomorrow and to top it off?

I FOUND STRETCH MARKS ON MY THIGH. So I am fucking fat too. Great. Sorry for swearing, I try not too, but tbh I couldn’t care less right now.

I feel useless, and fat, and tired, and emotional. I have so much going on in my life, so much scary change – and yet also no change at all. Scary that everyone else is changing and moving on and getting better, and fucking depressing that, once again, my life is moving nowhere; aside from my waistline moving outwards.

I tried to fucking hard to diet and be healthy, and it just got me tired and so shit feeling and stressed that my crohns messed me about. So whats my options here?!

Initiating day 1 of “eat nothing, be miserable and try and just get through the shit wishing I was someone else” can start tomorrow. Woop-de-fucking-do.

 

The quicker today ends the better 


I am having a serious bum of a day right now 

I guess it was fine, I just wish it would have been better. Enjoy a broken up, rambling post. Apologies. 
Have been SO tired all day, so so tired and struggling. It makes work harder and life harder and being happy harder. 

Here is my list of current problems: 

-it is my step mums birthday I got home and everyone has been out for the past hour and a bit, glad I rushed back

– was promised takeaway and now we aren’t having it (okay this is a spoilt cow kind of moan, but whilst I am moaning WHY NOT. After today I felt like I deserved one) 

– I am really tired, like really.

– I’m frustrated at people. At my boyfriend. At my friend. At people who sometimes don’t understand me 

– I’m so angry at my brother. I bought my step mums all her presents for her 40th, as of yet no offer to pay his half, he hasn’t wrapped them and he went to football instead of coming over so we could give them to her. What a selfish and arrogant move

-I found some stuff j didn’t want to, just a medical thing and nothing bad but fristrating. And since I have to keep working, then I can’t get the time off to sort it

-stressing about how to ask for yet more time off work 

– I feel like an absolute whale. I don’t know if it’s anything to do with my medication (or if that’s just me avoiding the fact) but I am constantly so hungry, and seen to be piling on the pounds even when i try to eat less. And j am going away in 10 days and am more stressed about looking awful than I have been in years. 

Eugh. I have ti wait for my step mum to get home, to say happy birthday. But all I want to do is get in my PJs, under my covers and not come out for a long time. 

SOS please?

H x

Here we go again…


So, since my last post everything has shifted a little, with having to consider crohns back in my life again.

Am having to work very hard not to throw a massive tantrum and sulk about how unfair this turn of events is, but so far I’m trying to crack on with life. 

Had some tests done to see if it the results could be linked to a urine infection or some other illness I was fighting off, but they all came back clear and normal this morning. Normally thays something I would be happy about, but not this time because it leave just crohns. 

So tomorrow,  back for a blood test to monitor my inflammation levels, and then off to see my specialist in the eve. Just what I need. Maybe I am wallowing a little in self pity, like my housemate said it’s not lile I never thought it would be back, I’m still taking medication every day; it won’t make much difference to my everyday life. But psychologically it will and I know that’s ridiculous, but it’s true

Plus just to add ti my pile of self pity, tomorrow would have been my grandads birthday,  and I miss him, so much more than I ever thought . So I’m feeling more than a little sorry for myself.

Hope everyone else is doing better than this!

H xx

Cold, cold go away, come again…never.


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I am ill. Still. Again. Continuing.

BLEUGH.

I have been ill for at least the last three weeks – before you panic I mean “normal person ill” not Crohns ill *. I have a constant cold, cough, general un-wellness. Not fun!

I also developed these weird lumps down my neck, which were a little worrying – so I went to the doctor who basically said it was because my body cant cope with being ill (no surprise there then) and so my glands weren’t draining fluid and it was kind of bubbling up. I only have two I can feel, but she said she could feel another 5 or so…and now my mouth is hurting so I cant open properly so I think that may be linked to this damn cold as well. She said when you fight it off next week these will drain – try three weeks later, COME ON IMMUNE SYSTEM.

I am sat here typing and eyeing up my hairdryer, with fingers that are turning blue with cold I know I am going to head to the hairdryer, plug it in behind my bedside table and blow dry away the cold! Added to this I also have two big deadlines tomorrow (probably should be blogging today, but some things are more important 😉 ) and then lots more for the start of December – PLUS my dissertation stuff. STRESS MONKEY.

My friends and boyfriend are doing a brilliant job at looking after me, but its not quite the same as lying at home on the sofa with mum doing everything for me, is it now 😉

Oh well onwards and upwards with the health (I am hoping)

Hope you aren’t all suffering in this new bout of cold.

Smile 🙂

H xx

* sometimes its hard to not just dismiss everything as being nothing, my scale is 0=Healthy to 10= Crohns, ambulance operation. Hard to find a middle ground.

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

Absence makes the heart grow fonder…


How weird, I have been posting here for about 6 months now – and I think these last two weeks are the longest time between posts, and I most definitely missed it! Here’s hoping its not going to become an addiction (maybe I could blog about that? the irony 😉 )

Anyway, the reason I haven’t posted is simply my lack of time-I am so fearful of just posting any old rubbish that I have refrained from posting anything until now, until I have time for a proper ramble! So, here goes..

The first week of blog-less-ness was due to nothing fun, a huge pile up of university work meant that my time was spent glued to this laptop with books beside me, attempting in vain to try to make a dent in what I have to do – something along the lines of a group project, a leaflet from a presentation write up, two essays, another group assemblage analysis, revision for two tests and trying to plan the title of my dissertation, ya know, not much…(!) I am slowly plodding through, but in truth it feels a little bit never ending, and I am flitting between them all to try to get some progress made, resulting in none being finished as of yet, which feels pretty shit. Regardless, I also went on a night out with some friends to the Shoreditch pub crawl, and spent some time playing tennis and the like with them as well – all of which was the perfect chance for a catch up and a gossip!

The second week the posting drought was more due to lack of reliable wifi, and again time…and a little bit of laziness (I know, forgive me!). I went away for a week with my dad, step mum, brother, little half brother and little half sister to Lyme Regis – it was loooooovely! My Grandma joined us for some of the time as well; so it was certainly a houseful! We were so lucky with the weather, it was so warm the whole time and meant that we spent a lot of it on the beach…paddling, crabbing, in the sand etc – the little ones couldn’t get enough. It was so nice, its the first time in so long I have spent a prolonged period of time with part of my family; because over my Christmas break I was in hospital and then when I had recovered my siblings were back at university / school, and even then I wasn’t fully myself. So, it was a lovely time to just do not much apart from enjoy their company (for most of the time!).

The only downside to this was my health – nothing on the scale of the hospital trips that I have experienced before; infact not even Crohns related, well not directly anyway. I got a really weird rash – little blobs all over my legs, stomach and back, which had no itch with them, no pain at all, I just noticed them getting dressed. I asked a pharmacist who said it was probably nothing, so I ignored it. A day or so later I got intense itching all up my legs, driving me nearly to the point of tears- it was so unforgiving! It didn’t stop me enjoying things when we were out- but the mornings and evenings were NOT fun! Anyway, we managed to get a doctors appointment who explained the rash was probably a physical sign of a virus that my body wasn’t fighting well (potentially linked to the Azathriparine I am on) and that the rash was probably just dry and itchy skin; so some cream later and I was feeling much better.

Anyway, just an update- I am including some pictures of the holiday (I know, I am very stingy with my pictures, maybe more on that another day) to show you the weather, the British Seaside did not let us down!

Hope you are enjoying whatever it is you are doing in the run up to easter – enjoy the chocolate!

H x

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Birthdays, Cake and Itching


So I went home for this weekend for one of my little brothers birthdays – he was 3 on sunday, and literally adorable! We had such a lovely weekend in the sun, and my other brother was home too which was really nice 🙂 had  a family filled weekend, and it was just what I needed! Ate way too much birthday cake, laughed pretty much the whole time and had a massive catch up with them all, just perfect!

 

Anyway I drove back to uni yesterday and had a pretty standard day in lectures; and went to trampolining in the evening from 8-10 which was such good fun!  I used to do it back at school, but haven’t done it in years so was so nice to be bouncing again! It was a bit scary and I need to re-learn some of the moves I used to be able to do, but HEY I can jump around, lift things all after eating whatever I wanted and why is that I hear you ask? Because I am still feeling so great health – crohns- wise. WOO.

 

On a slightly more sour health note woke up today and got a massive VERY itchy rash all over my arms and slightly onto my shoulders. Out of coincidence I was seeing the doctor today anyway and she said she thought it was just a reaction to something my skin didn’t like, but that if it persists or gets worse to get a blood test done as it could be a reaction to the Azthripaarine I am taking. As I type this I can feel the rash spreading, I cant focus on anything without itching – but I cant tell how much of that is just in my head. BLEUGH. any advice on relieving some of the scratch-factor would be greatly appreciated!

 

Hope you are all well

 

H x

And it strikes again…


And it strikes again…

Spotted this as I was scrolling through the news earlier today – always alert for Crohns-related articles! (How sad does that make me sound!)

 

I don’t know if it is just the fact that I am really tired (and yes, a little hungover still) but it really annoyed me how the article made Crohns Disease out to be not a big deal:

Whatever I have, the doctors have told me it’s treatable and the worst-case scenario is I’d have to make some changes to my diet. It might even just be a really nasty virus.”

I completely understand that this was before the final diagnosis was made, but what makes it kind of sad for me is that this article is highlighted on the news because of WHO it is about, and not WHAT. Don’t get me wrong I would never wish Crohns on anyone, and I feel bad for Sam joining the ranks of us who know the battles that are probably coming her way – but in my humble opinion the article could have been used a bit more as an informative platform about the disease, as a way to spread awareness. It is an embarrassing and hard to broach subject, so those celebrities that are in the spotlight that can shed light on the issues that many of us face could be a perfect way to increase knowledge and perhaps funding in the area. My thoughts are with her in the scary time of just being diagnosed, and I hope that she recovers back to her new normal as soon as possible; but I do feel like if anything the article makes the disease out to be an easily resolved solution – a bit of soup for a while, some rest and then diet changes with this disease that according to them is treatable…treatable?! I would love to meet the (ahem) qualified doctor behind those remarks- because out of all the specialist I have ever met they have not said that. No, unfair maybe – they say the symptoms can be managed and try to reinstate a normality into my life, but “treatable” to me is often inter changed with “curable” and that is not the case. Maybe I am being moany, maybe I am being unfair (please, tell me if I am!) But I really think the article makes it off to be too light hearted and missed a brilliant opportunity to make her a figurehead or spokesperson for the disease. I wish I had a way to talk to her, to a wider community of others even further than this blog.

 

Let me know what you all think

 

Keep Smiling!

H x

Back on track?


FINALLY feeling like a normal person again, back at uni, back in modules, back to going out – the whole deal – wooo!

Been loving being back at university, and so far (touch wood) everything has gone really well, not feeling tired and managing to cope with the workload, going to the gym and trying to keep up some sort of a social life at the same time , so really pleased!

 

Went to see my specialist on Tuesday for a follow up appointment, just to make sure he was up to date with everything and to check a few points (like blood tests etc). He was really pleased with the fact I am so happy at the moment, everything really is going well 🙂 He said that blood tests for the Azathriaprine are now only needed once every few months (WOO) and that I don’t need to go back and see him until May! Yaaay! Is it sad that those like 3 months will be the longest I haven’t seen a doctor  / blood tests / hospital / A and E or whatever in probably over a year? Maaaaaad.He did spring a sneaky blood test on me at the hospital though – to check if I was taking the right level of dosage of medication, not impressed with the sneak attack but still!

 

Got really frustrated at my university doctors-  I know I am not a trained medical professional, but am feeling like I spend most of my time talking to people at the surgery on the reception desk who know even less about how the doctors surgery works than I do! I was promised that my medication would go on repeat prescription, and was told it had – so no Tuesday I rang to get it re=prescribed as I am basically out of medication and they said it wasn’t on repeat have to book an appointment and the first one isn’t until Monday – not impressed! I told them that by then I will have had a day, if not two, without any medication, but apparently there was nothing they could do. great.  Turned out okay – instead of taking the 125mg a day I am meant to, I have run out of all the 25mg so just taking 100 a day- but only for yesterday today and tomorrow, so shouldn’t have any implications…I hope! Feel free to comment below with a moan if you face similar situations, its good to vent the frustration!

 

Anyway, just an update for all of you out there- chin up, things do get better! Feeling on a bit of a high at the moment, and thought you all might like to know that Im not always moany! Ha!

 

H x