Mind Games

I am very much a positive person when it comes to looking on the brighter side of life, and what not. But I seem to have hit a wall.

I wouldn't say that I am 'depressed' again - I am just having a hard time trying to stay upbeat about me and my body.

Weight issue aside (because you all know how I feel about that), I don't understand how I can get better when no one knows why certain things are happening inside me...ok, yes, I am under investigation again, but at a snail's pace. And the snail is asleep.

At least before when I'd be a bit down about the whole thing, I knew I had a scan/appointment/consultation around the corner and we were working towards getting me better.

But their lack of urgency is even more apparent with the appointment letters I got through this week. My surgical follow up appointment is for December. My cat scans are in the middle of July and my gastro follow up is near the end of August. Great work.

I really don't want to have to get more poorly before someone does something to help?!

I guess I feel like I did before I was diagnosed with Crohn's; I know things aren't normal and despite what the medical people say to me, it's not making a blind bit of difference. When there's a fundamental problem with my body - especially my digestive system - whatever I do right now, isn't going to change anything.

Which is why I am in the middle of moving hospitals on the hope that whoever I see next will be able to help me out...

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25

Today is my birthday!!

I am 25 years old - officially at 8:57pm.

Without sounding like a complete sap, I suppose I'm not really where I thought I would be at 25; I'm not yet married, I'm not dancing full time, I don't own my own house.

I guess when I was younger, being 25 seemed exceptionally grown up.

HOWEVER, I have managed to nab myself an amazing boyfriend, keep an excellent support network of friends and famm, get a job in an industry which is oh so fun and I get to work with people who are ace.

Oh and I got Crohn's. But that's by the by...

So tonight I am going to have a cocktail or 5 and dance until the sun comes up, as I have a tactical day off tomorrow.

Me as a young'un

Oh yeah. Birthday. Yeah.

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More Exciting News!

As you know, I was asked to write a guest post for Me and IBD - and now it is LIVE.

I wasn't sure what to write about and ended up going with my gut; in every sense of the word.

Would really appreciate it if you would have a read through and let me know what you think?

Thank you!

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My Saving Grace

For now, anyway...is my GP.

She's amazing. I love her! So helpful.

Unsurprisingly, after the day I had yesterday I was starting to lose my faith in the NHS and what happens now. Fortunately, my GP is a star and let me vent to her on the phone today. We mutually agreed that I wasn't really getting anywhere with my current hospital - and that it's probably best a fresh set of eyes view my bloat.

So I'm off to the doctors after work today to pick up a referral form!

It's nice to have my faith in GPs restored, as I'll be the first to admit I was a bit sceptical in the role they play for someone with a chronic disease; but I think it's because I wasn't settled geographically and it made it a lot harder to see the same person each time.

At least I know my current GP wants to help me, wants to make sure I'm doing ok...it's nice. Because it's certainly not easy trying to get on with things when it seems as if it's all going to shit.

*****

I know I had a proper rant in my post yesterday - sorry. But I was just so angry (still am, to be fair) and felt so utterly disappointed and let down.

I don't understand how they were so blasé with me? And - if you're reading between the lines - suggest that my bloat is potentially my fault, as it's due to the weight I've put on.

No it isn't. My insides aren't working properly, and I know this as I'm the one who's dealing with it first-hand. I just need someone to listen to me.

Hopefully by getting referred to a new hospital, I will be able to get somewhere in finding out what's happening inside me.

Here's hoping...

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Pure Rage.

I have just returned from the hospital and I am absolutely livid. Fuming.

I am running over the conversation with the doctor over and over in my head, and doing the typical thing of 'if only I'd said that'. Hindsight is a wonderful thing.

What is NOT a wonderful thing, is coming away from the hospital after waiting stupid amounts of time to be seen by someone, to then get told I will need to shit in a pot and have a scan within the next 6 weeks. Oh and here's a slip for a follow up appointment at the end of August.

I'm close to punching my computer in frustration.

AND THEN to make matters worse, we decided to go over my scans...

You know, the ones where they mentioned I may have an abdominal fistula? Shed some light on why I'm always so bloated and in levels of pain that need Oramorph to ssh them?

Well it's a no from him!

Because apparently it looks like it's just a bit of muscle inflammation...Or he said maybe it's to do with the weight I've put on...

How fucking kind of you to point that out. It's not like I'm unhappy putting weight on or anything. It's also OBVIOUSLY stupid of me to think that something must actually be wrong with my stomach. But you carry on, even though I haven't seen you since before October. Carry on chap.

You're right. All of the pain and struggle is just the weight I've put on. So yes, let's get an appointment for me to see a dietician.

I didn't realise being fat meant that your stomach:body ratio went completely disproportionate, you were always bloated and you are hard in certain areas of your stomach. That it made you feel sick once you've eaten and your poo still sounds like you're weeing. This is clearly down to the weight I've gained! And how convenient it all got worse after my operation!

Even the boyf tried to help me out as he could see I was getting agitated and teary. Nothing makes you more frustrated than when you say your piece, followed by 'Mmm yes. I appreciate that.'

NO YOU DON'T. NO YOU REALLY DON'T. Otherwise you would not let me stay this way for the next few months.

The way forward? More investigation. And for now? I just have to stay exactly as I am - ol' chubby me - until I get scanned within the next 6 weeks. And even then have to wait at least a month after that until I speak to someone face-to-face again.

Thank you ever so fucking much for absolutely nothing.

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Rash!

I keep coming out in a rash...

I usually refer to these as my 'stress rashes' and I'm going to assume it's because I am SUPER NERVOUS about the hospital later.

 

I just want some answers. And hope that I may get to enjoy my birthday next Tuesday haha - but is this more wishful thinking...?!

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Interview

I did an interview not long ago for a friend's beauty website...not entirely Crohn's related, but Crohn's certainly gets mentioned a fair few times!

As today is World IBD Day, Catrina very kindly published it this evening.

Would love for you to check it out.

Secrets of a Beauty Addict

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It's World IBD Day!

Happy World IBD Day everyone!

Hopefully we are all now a bit more aware of Inflammatory Bowel Diseases?!

There was a symposium at Birmingham Children's Hospital today - unfortunately for a variety of personal reasons, I couldn't make it :( but I am intent on hearing all about it, nonetheless!

http://www.worldibdday.org/

From the hashtagging on Twitter just after midnight on 19th May, it made me feel proud to be a Crohnie.

I loved the feeling of unity to help raise awareness of the little buggers that are IBDs...

It only takes a second to search 'World IBD Day' on Twitter to see the number of people discussing, tweeting, retweeting all day.

Nice one guys!

Here's to finding a cure!

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I just don't know...

...what to do with myself.

I have essentially shed a small tear every morning: I like to plan an outfit, as I'm quite the flapper in a morning routine and it's normally impossible to get myself out of bed.

The problem is, what I have laid out to wear is normally ruined by the fact my bloat has not changed shape or size in the night. It's driving me crazy!! None of my clothes are fitting me anymore - even my loose ones - and I'm not prepared to go out and buy maternity clothes to cater to my bloat I shouldn't even have.

To add to my woes (dramatic, I know), this week is completely dragging; all I need to do is get to Monday and see a person face-to-face at the hospital.

But then this is a dilemma, as it's my birthday a week Tuesday and it's also Bank Holiday weekend. Anyone that's had a stay in hospital knows weekends aren't exactly fabulous for care at the best of times. Let alone a three day weekend.

So what do I do? Wait to see what the doctor says on Monday, and hope he doesn't send me in just before the long weekend? Surely if my scans were super bad, someone would have already been in touch?

But then again, you would have assumed someone would have been in touch already with a follow up appointment from my scans three weeks ago?!

And another thing which has really ground my gears is that what I have planned over the next week or so, were things I booked before my operation in January - on the hope that I would be fully recovered and able to properly enjoy it all. Except I'm not fully recovered. I'm essentially where I was 6 months ago.

Why does it constantly feel like I'm going around in circles?!

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Wow

I hit 15,000 views on my blog.

THANK YOU!

I decided that because of this, I would pimp it out and add some new pages (which you can see across the top bar...) And then I thought, why not go crazy and make it an official website. So I did!

The old link will now redirect you to www.harrietsgotcrohns.com

How exciting! *does a crazy dance*

I think the ol' cliché I'm looking for is...Go big. Or go home.

So I went big. And it's all down to you guys :)

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Exciting News!

I have some exciting news to share with you all!

The Crohn's and Colitis UK Press Office has been in touch with me, and asked if I would write a guest post for them.

OH YEAH.

Once it's written and live, I shall share the link through here...and they have told me they will put my post up on meandibd.blogspot.co.uk, tweet about it, put it on Facebook and also on their main website www.meandibd.org. So I'm very flattered to be asked to get involved!

Here's the thing; I have free reign over what topic I can write about.

Most of what I write is based on my day-to-day activities and challenges with me and my Crohn's - apart from the depression post. And although I have an idea of what I may write about, I wanted to check with you guys to see if there was anything in particular you'd quite like me to cover?

My initial thoughts was going to be based on me and my bloat - as it's such a MASSIVE part of me at the moment! And so look at the difficulties in feeling feminine when you don't have a waist, on how hard it is to find clothes to fit you when you don't need maternity...and kind of see where that takes me...?

But if any of you have a topic in particular you'd like me to write about, please either leave a comment on here, email me (harriet.c.stevens@hotmail.com) or tweet me (@Harriet_Pure) as I'd really like to hear what you all have to say!

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Circus Act

No, I'm not joining the circus. Although if there's a space available for a Bearded Lady?

Haha, lies. I have a goatee instead.

(I don't, and that is not me in the picture - 
just for added clarification!)

I have called this post 'Circus Act' because I am fed up of jumping through hoops to see someone from the hospital.

Why is it so hard?!

I went to the GP yesterday because I am still in pain, bloated and generally mehh. And I wanted to see what was happening with my scan follow up. But according to the doctor I saw, abdominal fistulas are not a painful thing to have as they're embedded deep in the tissue. Erm...

I beg to differ my friend. Well, not my friend. My relatively unhelpful doctor man.

To be fair to him though, after his ridiculous sentence re my pain, he put together a letter which was addressed to my illusive surgeon and also my gastro consultant. It said everything that I want to say to them; how I'm close to making a complaint as it's gone on for so long, how I have no idea what's happening with follow up and no one seems to be telling me anything, how I have on-going symptoms which, quite frankly, are not ideal for general day-to-day living.

I then asked when I could expect to hear from someone at the hospital. He said the only thing I could do was to wait until someone gets in touch. Heard that before!

Fortunately (I guess) I have an outpatient appointment with the gastro team on 20th May. So if I haven't heard anything by then, at least I will be in the hospital speaking to a person face-to-face. Except this isn't even anything to do with the gastro team?! They've already told me it's for the surgical department. So God knows where that leaves me in all this?

Maybe it's better I join the circus after all...

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Scan Ramblings

The original draft for this post was short and sweet. But by default it has turned into another late night/early morning ramble because I can't sleep.

And so we begin...

I made a friend. A friend who was also having to drink TWO JUGS of ridiculous laxative type water: that cleared me out big time. [I just love the accents, 0:32] Cue mini scuffle between the two of us for the toilet.

She was under investigation to see whether she had Crohn's (cheeky opportunity for a blog plug, but also for support to know she's not alone, even though it may sometimes feels like you are.) But meeting her reminded me of how messy your thought patterns are when you're first finding out what's wrong with you. And even now, when you know what's wrong with you, you just need to know *specifically* what's wrong this time.

I know we didn't exchange numbers, but if you are reading this, I hope you're ok and if you need anything please get in touch.

It's crazy when you actually take the time to have a mini-reassessment of how much your life alters when you're diagnosed with Crohn's. Well I'm sure it would for any chronic disease...but I have Crohn's so I couldn't possibly comment on others - I have no experience!

It isn't just the obvious physical side of things that change; symptoms and what not. It's the mental side; how your perspective on things can be so different from what they once were.

When you're going about your daily business and realise that you've already done a mental calculation of where the nearest toilet is, can you get there in time, god I hope there's toilet paper, oh it's fine I have tissues in my bag already. Maybe even some spare knicks...just in case.

Things like that were never something to be concerned about before. But back to my scan...

I got scanned - lying on my stomach, wtf?! Got blurry vision from the injections, said my goodbyes and plodded on (both figuratively and literally).


That's it. I have no more news haha. I am now waiting for the cogs of the NHS to get turning, as I eagerly await what they've found inside me.

I am scared though. I feel like a vain, shallow person too. And I tell you for why!

I was Google imaging (don't) enterocutaneous fistula as I have discovered that this is the medical term for an abdominal fistula, which is intestine to outer skin. And the potential op/healing/management/scarring scares the living shits out of me. It's all just so open! And just, there.

I won't put any pictures on here in case some of you are reading this with your lunch or dinner. Wouldn't want to make you ill!

I already have a few scars on my tum and obviously I would rather feel better, than have less scarring but with aliens inside me. But I just feel like I'm going to need help to essentially cope with how I will look after surgery. It just seems so, I don't know, bleurghhh.

Pfft. My head just seems full again, like it was when I first started my blog back in January; so many questions, not so many answers.

In Other News

Now I'm not sure if I'm being paranoid, but I can pinpoint particular areas of excruciating pain on my tum. Plus the whole bottom-right-hand-side-not-my-actual-bottom-quarter of my stomach still feels incredibly numb. I suppose the best way to describe what it feels like when I touch the numb bit is this...

When you were a child (or a not so sensible adult) and you tied an elastic band around the end of your finger until it went blue. And the you touch things with that finger whilst you wait for the blood to come back. It's like that. You know you're touching it, you can feel it a little. But then also can't really feel anything at all.

So there we are. This week I am on abdominal-surface-busting watch, NHS hunting and trying to find out what happens now.

For a girl like me who loves a bit of organisation in my life, this is not so easy!

X

PS: Sorry-for-all-the-hyphening
PPS: I know I'm all wobbly-brained again; I shed a tear watching Ashley Banjo's Secret Street Crew earlier because it made me miss my dancing days. I'm officially a worried wimp. For the international readers amongst you, to be fair even the UK guys, it is not a show to cry about. Ever.

Bank Holiday Lols

Just a quick one to say that I'm Bristol-bound for the Bank Holiday weekend, so will most likely give blogging a miss.

Need to be a social butterfly, darlings!

But I already have the beginnings of a drafted post from today's MRI (what an experience)

So don't you fret...I shall post oh so soon!

Enjoy the long weekend!!

X

Balancing Act

Hmmm... yesterday didn't go so well.

Went to work as normal, had a niggling pain and felt a bit spaced out - but planned on just cracking on with the day.

Then I threw up. And then again.

Cue journey home and the hope that I didn't vomit on the underground.

When I got home I had some Oramorph, as it's the only painkiller that totally wipes out the pain. But it also meant that I was knocked out for 5 hours (didn't even get to watch the whole of Pocahontas!)

So this morning I have decided to work from home and will be going into the office this afternoon for a meeting. Power through, and all that.

It's just soooooo frustrating. And it's wearing me down.

It's the unpredictability of what's going to happen with my MRI on Friday...what I'll be told in the follow up appointments...and what this means for my own life and working life.

I'm not sure how to find a balance of doing 'normal' things, when I don't even know the true extent of what my insides are doing and what happens next?!

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