Still flaring?

And my level of frustration towards my Crohn's has skyrocketed this week!

I have the first of two hen doos on the weekend, followed by the second next weekend...then my holiday on 11th August...and then the two weddings at the end of the month. Not to mention my full time job.

I certainly do not need to be tired, vomiting, shitting out water and crying. Nope. Nahhh. No. Definitely not.

However, I do have my gastro consultant appointment on Thursday of this week. I'm not expecting anything amazing to come out of it, but just having them prod my stomach and realise how hard it's gone - in a weird way makes me feel better as it would confirm that I'm flaring.

I know it sounds ridiculous as I'm 5 years into my IBD journey - but sometimes I find it hard to determine if I'm officially in a flare up, or just really struggling with the day-to-day symptoms of Crohn's; the fatigue, the loose stools, etc.

I'm also curious as to what people think about Azathioprine? I have a very up and down relationship with it and I'm considering stopping it after I've spoken to my consultant about other options.

Either way, hopefully they'll be able to patch me up for the Summer!

X

Nil by Mouth

Since Saturday I have been struggling to eat anything - FODMAP foods and all. And anything other than water is making me feel poorly too. It's the nausea I can't handle. And the pain. Oh the pain! Like my stomach is so swollen it feels like it could burst.

I put my food problems out there on Facebook and some of the responses I got with regards to what to eat were interesting! From applesauce to rice cakes, to liquid diets, shakes and fasting.

Today is a lot better than previous days though; have managed to eat a banana and not throw up or run to the bathroom. It's the simple things, eh?!

Yesterday I thought it was a good idea to try and go back to work (so bored at home - there's only so much daytime TV you can watch before you're brain dead) But alas, I still looked like I'd been punched right in the face and cried at the drop of a hat. So off back home I went where I then slept alllll day. And then vommed. And woke up countless times in the night to go to la toilette. But there we are.

I know I've said it before, but it's the ultimate frustration that comes with flare ups. They just inconvenience everything. It's giving me major FOMO [Fear of Missing Out, FYI ha] I have so many things coming up that I'm looking forward to and all I want is to know that I can have a proper Summer. Ideally with minimal Crohn's issues. Not asking for much!!

Got an appointment with my consultant on 17th so will obviously fill them in on what's been going on and we take it from there...

Enjoy the sunshine!

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First Vlog

Well this was certainly an experience! Hair is all over the place and realised how often I say 'umm' AND there seems to be a low flying aircraft in the background. But hey ho...here's my first vlog!

Would love to know what you think!

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Bear With.

Hallooo!

I know I was rather busy on the ol' social media as the junk food debacle developed (and quite rightly so, well done IBDers for making noise) however since then I've been rather quiet on the blogging side of things...

That's because I am in the middle of building my new website. An actual website! Not one through Blogger! Blogger you've done me well, but now I feel it's time to move on; it's not you, it's me, etc.

The new domain name is www.harrietsgotcrohns.co.uk

Currently this will redirect you to my original Blogger, erm, blog. But as it stands, the .com domain doesn't work - so sorry if you're lost on the interweb desperately wanting to read my posts!

At the moment my new website is very much in the early stages - most pages are kind of there with regards to content; just lots of tweaking and adjusting the layouts, fonts and what not. But I seem to be having a large problem with getting my actual blog over to my new website. Bear with whilst I try and decipher the internet and its goings on, without having to copy and paste 120+ posts individually.

I'm also including a gallery as well as recipe section, like there is on here. But generally [I'm hoping] the whole thing will be a better user experience and easier on the eye. Always helps!

*SNEAKY PEAK*

By creating a whole website though, it does allow room for my blog to grow with me; maybe cover my interest in clothes and beauty a little more, can amend it for when that time comes to walk down the aisle, or even when I forget I have Crohn's and try for a baby...? It's exciting stuff.

NB: By the way, none of the latter is happening in the near future. But still, I'm essentially laying down foundations for you all to listen to me jabbering on. Indefinately.

Just hope you're all still enjoying reading?! Which is why there will also be a proper contact page as I love hearing your feedback. Keeps me going!

The fact that I'm sitting on just shy of 38,000 still boggles my mind.

So thank you.

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Dr Mitton's Response

Kirsty Bruce - one of the many proactive IBDers - emailed Tom Smith, the Chief Executive of the British Society of Gastroenterology after the initial #junkfood debacle and today received a reply.

Saw it on Facebook and asked if I could share as it is definitely worth a read!

I thought you'd like to see the text from a statement that Dr Mitton has released this morning. See below. 

Tom Smith 

----- 

20th June 2014 

First and foremost I would like to apologise for the distress that I have caused by what was shown on the BBC to all Crohn's Disease and Ulcerative Colitis patients. I was unable to respond more quickly to the reactions to this report due to very heavy clinical commitments. I feel that what I said and the subsequent coverage has been misinterpreted and I would like to clarify this now. 

I said that Crohn's Disease occurs in those who are genetically susceptible and that the unexplained recent increase in numbers diagnosed amongst young people in the UK is likely to be related to lifestyle. I did mention pre diagnosis diet and multiple courses of antibiotics as possible factors preceding the development of overt disease in some cases. I did not say that junk good or frequent courses of antibiotics CAUSE Crohn's Disease. I am very aware there are many patients with IBD who eat a very healthy and nutritious diet and have always done so before their diagnosis. 

However, since the initial report on 18th of June there have been subsequent newspaper and television reports that focus on the assumption that Crohn's Disease seems to be "caused" by junk food and multiple antibiotics. This is not my belief and is a distortion. 

I did not mean to imply any element of self-infliction and I am appalled to think this could set back public perception of IBD or that sufferers might be blamed for their own pain and misfortune. 

I would like to sincerely apologise again for the distress that my comments have caused. 

Dr Sally Mitton
Consultant Paediatric Gastroenterologist

Make of that what you will, but like I said, wanted to share with you all.

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And so it begins...

Well hasn't today's press been full of hard facts re IBDs?! How about noooooo.

Without going into detail again (as yesterday completely and utterly drained me) here are the links of what I've come across in the online media today:

Daily Mail - "Junk food blamed for soaring rate of Crohn's disease among young"

The Times - "Junk food and antibiotics blamed for rise in Crohn's disease among young"

The Telegraph - "Crohn's disease in teens jumps 300 per cent in 10 years fuelled by junk food"

And what was in this morning's Metro:

Good morning to you, Dr Mitton's lies. It's been so long!

I have a feeling that this will be ongoing; but hopefully in a positive way, and the backlash from IBDers is publicised as quickly as this misinformation spread.

I was having a conversation on Twitter last night and the point was raised in that surely the figures will have risen so dramatically due to more people being aware of symptoms...not being afraid to seek medical advice. But we all know what Dr Sally Mitton thinks.

So onto this evening where I am momentarily stepping away from the #junkfood madness and hoping, willing England to win against Uruguay.

COME ON BOYS!!!!

X

Complaint

As many of you have probably seen on my twitter - @Harriet_IM - I have since sent a formal complaint to the BBC which said the following:

BBC Breakfast and BBC Newsbeat broadcast a report this morning (18/06) which talked about the rise in young peoples admissions to hospital due to Crohn's disease, with this being linked to junk food in younger years. There is absolutely no scientific proof to show that this is the case and by broadcasting this in the public domain has only added to the ignorance that IBD suffers already have to deal with. It's disappointing and frustrating that without looking at, and highlighting, all possible causes of IBDs, this misinformation has now meant even more misunderstanding of an already taboo disease. Incredibly angry and upset do not even come close to the feeling the interview and subsequent discussion of Dr Mitton's statements have caused. It has completely undone all the tiresome hard work that IBD sufferers like myself and others, as well as charities like Crohn's and Colitis UK have done in trying to raise the correct awareness. It needs to be rectified in the public domain ASAP with an apology to all who it affected.

I know I am not alone in vocalising my opinion on today's goings on. But just wanted to share what was sent.

We're all in this together! *Tries hard not to burst into High School Musical*

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Junk = Rubbish

I genuinely do not even know where to begin:


rambling
adj

1. straggling or sprawling haphazardly; unplanned: a rambling old house
2. (of speech or writing) lacking a coherent plan; diffuse and disconnected
3. (Botany) (of a plant, esp a rose) profusely climbing and straggling

No, I haven't suddenly become a plant or an old house. But I can sense this post will lack a coherent plan, for want of a better phrase. So apologies in advance, dear reader, as this post will contain a disorganised rant about what I saw on BBC Breakfast this morning (18th June). Mainly because I'm still super peeved by some of the content.

For all you IBDers in the UK, I'm sure you would have heard about the segment that appeared on National breakfast television this morning. And if you're still not aware, let me tell you a bit about the ridiculousness that is Dr Sally Mitton...

"If you have a lot of junk food in your diet before your diagnosis, it actually makes you more likely to develop Crohn's disease...a lot of antibiotics - particularly in younger life - seem to be more likely to develop this condition."

Yep. Ignore everything you've ever been told/read/researched. We all ate bad food as a child, and lo and behold...CROHN'S DISEASE. FOR THE REST OF MY LIFE.

Lets look at the stats first - as I found this really quite concerning. In the year 2003/04 there were 4937 reported cases of young people being admitted to hospital with Crohn's disease. In the year 2013/14 that number had quadrupled to 19,405. In a decade?!!

Obviously I am all for raising awareness of IBDs in the public domain. If I wasn't, I wouldn't blog, tweet, post on Facebook, Instagram and do every other world wide web option. Let alone be as vocal as I am about with my peers. However, the most important thing to remember is that if you're going to put it on a platform accessible by many, i.e. BBC Breakfast, then perhaps make sure that the information being given is correct? And if it isn't correct (because you don't know), don't suggest or assume things. It only compounds and makes it a hell of a lot harder for us to clear it up.

For a gastroenterologist to make such a sweeping statement as she did? I was genuinely dumbfounded. Granted I had not been awake long and was still sleepy. But when I saw her talk I shouted at my TV and immediately burst into tears. Lord.

I just couldn't believe what I was watching?! I tweeted about it and since then, my Twitter has gone nuts. It really has struck a chord with a lot of people.

And I think (unfortunately) that although Crohn's and Colitis UK went on BBC Breakfast to raise awareness, they're now going to have to help us IBDers in the real world, clarify exactly what we go through. Don't tell me that at the age of 26, something that I ate when I was 7 has given me this disease.

I'm not having that. Not at all. If that was the case, there wouldn't be any bloody junk food available for the fear of people developing Crohn's. Utter shite. All of it *slaps keyboard*

Look at me when I was 18. That is not the body of someone who's eaten all things junk food. That is the body of someone who's intestines have gone mental and started attacking itself. But the beauty of hindsight is that I was ever so blissfully unaware. Although in a weird way it's something to marvel at, for all the wrong reasons...I just look really odd; all mouth with a small head and a skinny little bod.

As David Barker of Crohn's and Colitis UK said;

"We need to do more research into these areas to better the understanding of the disease."

And when the suggestion of junk food and antibiotics was brought up again, he verbally slapped it down with what we all were thinking, in that "the reality is, we don't know."

If you missed the news this morning, or want to get riled up again (like I have most definitely been guilty of this afternoon) you can see the full clip here: Crohn's on the BBC

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World Cup Fever!

It was England vs Italy this evening, kick off at 11pm GMT. But it's a Saturday night, so no bother!

The other half and I got all patriotic in preparation for England's first game of the World Cup; adds to the atmosphere and all that...

Anywho, England lost 2-1 in the end. Boooo! Onto the next game on Thursday against Uruguay, where it will be another excuse to don the red lipstick and cheer on the boys!

In other news, blood is back so should probably get that looked into next week. Meh to the Crohn's.

X

(NB: clearly not a sports reporter, soz)

Apt Reflection

Of me at the start of this week...(both in size and physical state ha)

Here's the thing: you know when you're nice and warm, it's kind of dark...and you can use the full force in raising your eyebrows, but to no avail...you're drifting asleep? And there's absolutely nothing you can do about it? That was how I was on Monday - at work - as a grown up - in a meeting. Very tricky situation indeed.

I'm just shattered because my sleep pattern is all over the show.

I have got myself some Co-Dydramol from my GP as it seems to be the only thing (other than oral morphine) that actually takes the pain away. Why paracetamol even exists is beyond me - it does nothing!

Thing is, it's a double-edged sword because the side effects are nuts. I get an odd sensation like I need to bite the air?? And feel all a bit wobbly and woozy. And then I sleep for hours. Not the most ideal situation to be in when I need them during working hours?!!

But meh. Enough of me moaning.

THE SUN IS OUT AND I AM WEARING SILVER HOLOGRAPHIC FISHERMAN SHOES #90s

Today is a good day.

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Crazy Week

Phew! I don't even know where to start with all the crazy goings on over the last week!?

Best to go in CROHNological order I guess... with photos galore!

BUPA London 10k Time

As you all know, Jamie and I had our 10k run on Sunday 25th May. And we did it! And even better, we've raised (currently) £663!! Way over our initial £500 target. So to celebrate we took some over the top selfies and had a cocktail in the sunshine. My evident athleticism shining through haha.

The JustGiving page is kept open until mid August, so it's not too late to make a cheeky donation! Click the widget on the side of my blog (not on mobile) or you can text HSJD50 £3 to 70070.

Thanks again for all your support!!

Birthday Fun!

And so the run was done, it was a Bank Holiday 4 day week and it was the week of my birthday. Amazing times to be had!

I got treated to a scrumptious meal made by the other half and got to see Wicked. Oh my, it was indeed wicked. Wickedly awesome. Can't believe it took me so long to see it!! If you haven't, go. Go see the show.

Now I just need to update my About Harriet section to say I'm 26 now. Not 25. Late twenties (oooh)

And so to this week...

Got to love the unpredictability of Crohn's, eh? I had a day off sick on Tuesday and broke down at work yesterday - so smooth - and now working from home.

Did I forget to mention that I'd been bleeding since the day before the run?! Yes. I had. When I type it, it feels like I am talking about menstruation mmm yeah, but hell no. It was the return of the shit yourself toilet trips, but in a non-literal way. No wonder I was so ruddy tired all the time.

Got my bloods done on Tuesday so awaiting the results from that; typically they come back normal, despite me knowing my body well enough to know things aren't normal.

And although totally the wrong thing to do by ignoring it for a few days, at least I got to enjoy a week of achievement and birthday fun!

Onwards and upwards IBDers!!

X

It's time!

Up early. Bag packed. Sportswear on at an unearthly hour...

That's because it's 10k day.

See you on the other side!

X

(Text HSJD50 £3 to 70070 or visit www.justgiving.com/harrietsgotcrohns)

Keep it coming!

Because...We've hit our target of £500 before the race...How fabulous!

However this is no excuse to stop donating (if you want to obviously, not going to hunt you down and force you!) With only two whole days to go before the run on Sunday, it would be amazing to get as much as we can as it goes to such a great charity.

Thank you so much to everyone that has donated so far though, and all the support we've had on the ol' social media sites.

It was especially lovely to get comments and likes from people on my #WorldIBDday post from people that I haven't heard from in years. A little reminder that my ramblings on the internet do get noticed, I guess. I'm not talking to nobody! Although at times it feels like an internal monologue bashed out on the keyboard.

So for (probably not) the final time, if you want to donate and have short-term memory loss and have forgotten the link, please take a moment to visit www.justgiving.com/harrietsgotcrohns and help us build on our already fab fundraising total.

Thanks again guys!

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#WorldIBDday

Happy World IBD Day to you all!

19th May is a day to be loud and proud (if you're not already) about all things Inflammatory Bowel Disease!

Helping raise awareness...encouraging donation to Crohn's and a Colitis UK... It all goes towards the goal of finding that illusive cure - and if not? Just helping make people's lives a little bit easier through sharing knowledge is ace. Ace to the face. To the face of the pesky disease.

I'm sure my followers would have seen my contribution for the day:

I've essentially pimped this photo out all over the world wide web today; getting sick of my own face! But it doesn't matter as SHARING IS CARING.

It's also great to see the camaraderie emphasised on days like today within the IBD community. I'm already a member of a number Facebook groups, including #GetYourBellyOut and The Crohn's and Ulcerative Colitis Diaries, to name a few. To be honest I think the latter is based in the US? But geographical location is irrelevant when there's someone sitting at their computer screen reading and understanding what you have to say about your disease.

I saw on Facebook that Crohn's and Colitis UK had received well over 200 photos today similar to mine. So good!

And this is why I told people at work that today was World IBD day. Why I made sure I blogged and shared all things IBD today. Why I welled up when I saw people sharing my posts and photo. Because it's important.

It's important to fellow IBDers to know that we're not clubbed together under 'taboo diseases', that it's something that can be talked about. And it's important to me that people know what in the blaze can happen when you have IBD - and if they can't understand, just that they at least kind of know what it is.

****

If I haven't rambled enough........!

THIS SUNDAY is our 10k run. Balls.

My arthritic knee is crumbling and my body is massively running on empty. But I will complete this race come rain or shine - but preferably rain, what with the menopausal hot flushes and burning palms.

And if running lets me down, then I could always gallop my way through (we all know I love Miranda, the number one advocate for the gallop)

As per, would appreciate any support as it all goes back into the Crohn's and a Colitis UK pot of wonderfulness!

www.justgiving.com/harrietsgotcrohns 

X

TWO WEEKS!

Two weeks yesterday until my 10k run.

And it's all becoming rather real, especially now all my stuff has arrived!

My Crohn's and Colitis t-shirt, my running number, my book of instructions... oh my!

And the fundraising is going really well - (as I type) only £85 to go until we hit our target of £500!! This is AMAZING. But of course I couldn't blog about my run without another cheeky plea!

You can donate through JustGiving and our page is www.justgiving.com/harrietsgotcrohns

OR

You can text HSJD50 with the amount you wish to donate to 70070

OR

Click the widget on the left hand side of my blog

I've been gymming it for the last month or so and have realised a few things: 1) how out of shape I am [not a massive surprise] 2) how my medications have plumped me right up over the years [again, who am I kidding thinking I'm still thin?!] and 3) how bad my arthritic knee is getting [this is new].

I'm aware that I'm going to have to train ruddy hard these next two weeks, strap my knee up like I'm hiking a mountain and push myself to try and beat my time from before. That would be 1hr 09 for your reference.

It's going to be tough - but nothing in comparison to some of the shite Crohn's puts you through!

Every cloud and all that!!

X

Zzzzz

Valid point.

X

I'm on FIRE

I know I've always had a little moan about CONSTANTLY BEING HOT/early menopausal, etc. but recently I've noticed the palms of my hands are on fire. All the time?!

I had a browse on the internet (as obviously I like to do a spot of research) and stumbled across a post on the Healing Well forum:

Ok this has to be one of the weirdest feelings ever. My hands feel like they are being slow roasted over a fire. They aren't hot to the touch, but they are burning, especially in the palm area and where my finger joints are. Sometimes they also tingle, but the burning sensation is the strongest by far. There is no rash and my hands are not swollen.

This is me! Except it's not me, it's a user called Viteka and this was posted in 2009. But this is exactly what I'm experiencing!

Some other users suggested a B12 deficiency, some people replied saying it was meds related, others saying it was related to other illnesses but not Crohn's as far as they were aware.

Obviously I will bring it up in clinic next, but that's not for a while yet.

Does anyone else experience the ol' burning palms??

X

Model Material

I've just read an article (albeit on the Daily Mail online - don't judge) that Sam Faiers who was recently diagnosed with Crohn's and since left TOWIE, has been signed to Elite Models.

This sits uneasy with me.

Not because she's making the most of her opportunities since leaving TOWIE like previous castmates, etc. But because she lost so much weight through ill-health, I feel it's a skewed view on what is deemed attractive...borderline glamourising her new smaller frame. Also the fact that her recent weight loss is unlikely to be sustainable - and it shouldn't be a weight she looks to maintain.

From personal experience, I've always been advised that an IBD patient is better to stay on the plump side (if possible) due to the speed in which you can lose weight during a flare up. Plus there's the other side of it being the speed in which you can also gain weight on a cocktail of meds. But I'm also aware that being thinner, through no fault of your own, is not particularly something you like to bring attention to. Classic examples of what not to say to a Crohn's patient include:

"You're so lucky, you can eat anything and stay skinny!"

"You've lost weight! You look great!"

The full list, which puts the phrases in context, can be found here: What not to say

If she does gain weight due to meds working and making her better, I worry she will only be forcing herself to stay thinner due to her new modelling contract. And if her previous size was ok with regards to the modelling world, why wasn't she signed before?

Just seems completely non-sensical and it makes me kinda sad.

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Achy Bones

I have achy bones. Oh so achy.

Left knee, lower back, right shoulder. All slowly, one by one, getting more painful. Even if I'm not doing anything.

I've mentioned my knee and back to my consultant before, but it's never really something they've focused on...? Just getting a bit fed up of sitting with my legs crossed, then suddenly having to rearrange my legs because the pain is unreal. I am not of Nana age yet!

Is there a strong link between the autoimmune diseases? Can you have Crohn's and get arthritis more easily?

I had a little look into the symptoms of rheumatoid arthritis on the NHS website (as this type seems to be the most mentioned re IBDs) and it brought up the following:

• Pain
• This is usually a throbbing and aching sort of pain. Often worse in the mornings and after you have been sitting still for a while. Pain is often felt while you are resting, not after activity.
• Stiffness
• Joints affected by rheumatoid arthritis can feel stiff, especially in the morning. Morning stiffness associated with a kind of arthritis called osteoarthritis usually wears off within 30 minutes of getting up. However, rheumatoid arthritis morning stiffness usually lasts longer than half an hour.
• Warmth & Redness
• The lining of the affected joint becomes inflamed, causing the joints to swell, and become hot, tender to touch and painful.

I guess I'm just curious, that's all. Don't want to get all hypochondriac on your asses, but the achy bones are becoming increasingly more difficult to ignore!!

Any info from anyone would be greatly appreciated; you can tweet me @Harriet_IM or leave a comment below.

Ta!

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New person?

Almost feeling back to normal. If normal was a thing.

All the symptoms that caused me to feel like a bag of broken marbles have disappeared... now it's just a case of powering through the remaining weeks of Pred! Also have the dietician on 14th and then catch up with my consultant in about a month to see how things are.

I'm not a fan of steroids as I feel it gives a false sense of security; it giveth with one hand and taketh away with the other *puts away rose tinted glasses* However, if it's patching bits up that don't make sense - even if it is only for a number of weeks - then that's a hell of a lot better than continually feeling AWFUL. And at least I'm back at work now!

And I've also joined a gym! I know. I am basically a new person. Went to Zumba Step on Wednesday...almost died. But if you pardon the pun, I am one step closer to have an ass like Shakira Shakiraaaaaa. Might as well try and turn the rapid weight gain into something that resembles a bootay instead of a Teletubby.

But yes, as I've been in this relatively normal state for a week or so now, it's let me plan and do some wonderful things! 'Twas the other half's birthday last week which meant we could have a countryside escape for the weekend. Visited a National Trust village called Lacock (oh matron) and relaxed in a converted cottage in Devizes. Simply scrumptious. Makes me want to go all Cath Kidston, put on my wellingtons, bake a pie and leave it on the window sill of my thatched cottage.

 

And now to this weekend where I will be exploring Winchester with some old girlfriends. Many giggles to be had with these two lovelies... 

And I can't bloody wait.

Catch up soon amigos!

X

Hmmm...

Well today was unusual, to say the least.

Apparently the sigmoidoscopy procedure would take 5-10 mins, so I was seen almost immediately after arrival to the ol' Endoscopy department.

Luckily I had a good friend keep me company (and potential chaperone in case I got drugged up) and she brought...Louis! Homemade Walsh wonderfulness. Please see below haha. Inside joke, apologies.

*Skip past usual prep admin*

I'm gowned up, in the room, knees to chest and ready to go. Ish.

I persuaded them to give me gas and air based on previous experiences - to which the nurse replied "women can give babies using just this. You will be fine!" I suppose in a twisted way my labour prep is well on its way!! (Don't worry significant other, no rush)

Ok. I was in there 40 minutes in the end. Standard Harriet timing then?

Unfortunately due to my numerous procedures the original camera couldn't actually get up ze bottom.  The initial scope was straight...my insides were bendy. So we had to change to a flexible scope to get round the bend. Regardless, I have found a clip art of the situation I eventually found myself in...

Good view? That's questionable. But I guess beauty is in the eye of the beholder hahaha.

To add insult to injury, as they were prepping the second flexible camera they left the other one on the bed. Next to my bum. This meant my behind was on THREE SCREENS AROUND THE ROOM. So I did what any self respecting person does, and just kept breathing in gas to let the lightheadedness overtake the shame.

But there is good news!

The majority of my large intestine is clear. But we also couldn't see any cause of the bleeding. And obviously by we I totally mean the doctor. I had no idea what was going on. Gassssss.

However he did say that I probably should have just had a full colonoscopy as he went so far round my body. And the pain! Oh the pain! But means to an end. You're already in there...might as well keep going?! Gassssss.

They did find a microscopically small haemorrhoid but it didn't look like it had been bleeding (?) At all. They took some biopsies anyway (odd tugging sensation. Never get used to that) maybe that will offer up an explanation?

All very strange. But course of action is to stick with the higher dose of pred and reduce by a tablet each week. And hopefully that's the end of that.

So all that was left to do was to deflate. For want of a better turn of phrase. And do a stool sample before my next appointment, which meant make my way home on public transport with a bedpan to poo in - except it was just that bit too big for my handbag. Ace.

X

Sigmoidoscopy What?!

Well the good news is I saw my consultant this afternoon. The bad news (for my bumhole) is that I have to have an urgent sigmoidoscopy tomorrow.

Nope, I'd never heard of it either.

Here's a diagram that should make it a bit clearer:

Hopefully the doctor's face will be a bit further away than that?! Good lord.

It's a good job I'm used to these consultant appointments though; nothing says 'a normal Thursday afternoon' like pants down, knees to chest and invasion of the personal space.

But at least he couldn't feel any abscesses. So that's a plus. Also got my bloods done and had my steroids increased to 8/day. More fun prednisolone times ahead. Just want to know what's going on in my body!!

In the meantime, its liquids only ready for Anal Invasion v.2.

Needless to say, it'll be a different type of Friday feeling tomorrow...

X

Sitting, Waiting, Wishing

Oh lordy.

I feel all weepy, sat at the hospital waiting to be seen.

Don't know why? This is not a new experience.

Must just be nerves and wondering...but also the general frustration and worry that goes hand-in-hand with Crohn's.

It's also the biggest journey I've done all week and it's already made me sleepy. God help me when I get back to work! Think nap time will be in order for sure...

X

It's a Waiting Game

And what a crappy game it is to play.

Left a message for my IBD nurse this morning; on the understanding that they get back to you within one working day. Also made an appointment with my superstar GP today.

As I thought - and which my doctor confirmed - there ain't no sign of tears, fissures or piles (thank god for that...don't fancy sitting in a rubber ring!) This does mean however that I'm at a loss as to where all this blood is still coming from.

My GP was hesitant to refer me back to the rectal bleeding clinic at my old hospital, as nothing really came of it last time.

One theory we have is that although my previous colonoscopy showed less inflammation where my op was by the terminal ileum (small intestine), when I did a stool sample it showed I still very much have active disease somewhere else.

So perhaps, somewhere in my large intestine it's all kicking off, causing the flare up and possibly being the cause of this bleeding?! Basically. Someone needs to get up my bum and see what's going on. Joy. Goodbye personal space.

Hopefully once I hear from the IBD nurse and/or my GP after she was following up with the hospital, I can get some blood tests to check my iron levels. But also get to the bottom of this. Pun intended.

In the meantime, I just need to try and stay awake during the days as I just feel so empty and weak and shattered.

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Bloody Hell, Part 2

So you know how I wrote the following in a previous post...?

And this is why sometimes the weekends suck; in a medical sense. As now I'm just left wondering if this is going to happen everytime I go to la toilette...

Well. It appears that yes. It will happen every time I go to the toilet. Every. Time.

I think the best thing to do would be to call my IBD nurse tomorrow? I'm just baffled as I have no pain in the nether region. But there is sooooo much blood. And it's getting darker?

Plus it's making me tired and feel weak. Neither of which I'm comfortable with, to be honest.

Fellow IBDers, what do you think is the best course of action?

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Hair we go again!

As my regular readers will know, I like to change my hair when my Crohn's gets all up in my space; yesterday was another one of those days.

I decided it would be a good idea to get my hair dyed dark. Haven't been dark for a while, and it should hopefully make my hair look glossy and healthy and thick. And also (maybe?) make me look a bit healthier. Add to the facade of the invisible illness haha.

But as I don't do normal things with my hair, as in my hair was blue/green (or as I like to call it, MERMAID HAIR), I ended up having it cleansed and now I have an unintentional ombré... Might leave it like this for a while though? As John Lennon once said 'Let It Be'.

Thing is, since I've been back on Azathioprine, I've noticed my hair is falling out again (happened first time round too) Hurumph indeed. It's not like clumps, but if I ran my fingers through my hair, there's too many ending up in my hand for my own comfort.

However I did check whether my hair falling out was due to my dying it; it's not the hair breaking. It's whole strands coming out from the roots. Not ideal, eh?

Is this a medicinal thing or a Crohn's thing? I've seen a few posts on the internet recently asking the same kind of questions. As always in the IBD community, if I can take comfort in anything, it's that I'm not the only one! 

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BLOODY Hell

So my late night ramblings were due to the fact I couldn't sleep. At all. As in fell asleep after 4am.

When I woke up this morning, needless to say I was a tad groggy - but hey ho it's SATURDAY. IT'S THE WEEKEND. REJOICE!

Until I went to the toilet and seemed to have left behind a gallon of blood.

Erm....?!

Could this be down to my meds? Prednisolone, Azathioprine, Humira? Has my blood thinned and just fallen out my arse?!

And this is why sometimes the weekends suck; in a medical sense. As now I'm just left wondering if this is going to happen everytime I go to la toilette...

Bloody hell, indeed.

X

Flat Out

Sometimes when the pain is really bad (like now) and I'm super bloated (like now)... I lie on my front to squash my stomach and hope the pain will go away.

FYI. It doesn't. Just makes me feel a bit sick.

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Flare Mare

It's been a while...and boy had I forgotten how much it sucks when flaring up!

I'm grateful that is has been a number of months since my last flare up. But the symptoms have a very sneaky way of suddenly wiping you out;

Extremely tired, nauseous, heavy limbs, excessive toilet trips, and oh the PAIN.

Back on Prednisolone, 6/day for two weeks *awaits the moonface* ohhh such fun.

And talking of 'such fun', I went to see Miranda Hart at the O2 last week. Many lols to be had! (Pluuuunge. Gallop. Moist)

But there was a particular sketch which fits nicely into this post...

She was on a first date, dancing at a club and suddenly buckled in pain. An ambulance was called, she thought she had appendicitis and her date was naturally panicked. As she recoiled to try and keep the pain away, she pulled her body tighter and tighter into a ball. And then... a massive trump. All the pain had been caused by trapped wind. That's all it was - wind. Needless to say, she made a swift exit!

Oh but what I would have given for my pain to disappear by trumping. Trumpity, trump, trump. But no. Crohn's doesn't work like that unfortunately.

So it's working from home for a bit, staying on top of my meds and hoping that the flare up calms the bloody hell down so I can get back to normal. Not asking for much haha.

In the meantime, here's two wind-related Miranda clips: Candle and Curtsey. This particular clip is about 2 seconds long, so please (if you have a moment) scroll to 0:35 for it hahaha Sausage Meat. Always make me laugh!

But remember, all you IBDers out there...

Ciao for now
X

PS: Thanks to Louise for sharing the top photo on Facebook, which was via Christina Matthies of The Crohn's and Ulcerative Colitis Diaries

Bad News for Crohn's Sufferers

The lovely Louise shared this article earlier on today.

Makes for an interesting read! Unfortunately haha.

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Dusting off the trainers

So here's Jamie and I after the BUPA London 10k in 2010:

This was just over a year since I was diagnosed - and whilst I was still pretty fit because of uni - we decided to enter the race and raise money for Crohn's & Colitis UK (formerly NACC).

I would always say that at school I was a sprinter, as opposed to a long distance kinda gal. And anyone who knows me will agree with me when I say that I am NOT A RUNNER.

I think the fact that I bought trainers purely for the run underlines my lack of cardio activity haha. And going 'training' but taking my oyster card (just in case, obviously) probably didn't help much either... *hangs non-athletic head in shame*

But I did the race in 1hr 10mins and more importantly, I survived! Just look at the joy in my face!

Due to the amount of ups and downs that followed though, meant that I never really got a chance to monopolise on my new found fitness (!) however now that I am probably as close to remission as ever, it's time to dust off my trainers, get fit and get running!!

Would sincerely appreciate any form of donation; however big or small.

The race itself is on Sunday May 25th 2014 which gives me plenty of time to get training. Without my oyster card as back up this time.

You can donate in a variety of ways, as I'm sure you're all aware. But just to clarify you can do the following:

• Through our Just Giving page
• By clicking the widget on the left hand side of my blog
• Or text HSJD50 with the amount you wish to donate to 70070

Thanks so much for reading this and for your continued support with my blog.

You guys rock.

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Snap Happy!

I have FINALLY worked out how to create a gallery for my blog!

I've put the majority of the photos that appear in my blog on the page, allowing you a closer look (if you want to anyway, as there are a lot of post-op ones!)

Available through this link or you can click the 'Gallery' tab across the top of the page.

Apologies if you're of a squeamish nature - but hey, ho. 'Tis part and parcel of Crohn's...

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In the media, darling.

Hello one and all - and essentially, welcome (back?)!

I haven't blogged since before Christmas; which was a post called 'Stranger Danger'. Needless to say, big apologies on being oh so silent...still.

But I have decided to start blogging again due to Crohn's having a rare moment in the spotlight, what with Samantha Faiers' (off of TOWIE) recent diagnosis.

I'm in two minds about the whole thing, as naturally I really feel for the girl as I was 20 when I got diagnosed and you have that moment of OH MY GOD I'M ONLY YOUNG. WHAT HAPPENS NOW?! AND FOR THE REST OF MY LIFE?! But I'm also torn as to why it takes a celebrity to bring Crohn's Disease to the attention of the masses.

Which is why I am starting a trend on Twitter (unlikely to be successful, but roll with it...)

#PooTaboo

And that my friends is why I think Crohn's is hardly ever discussed publicly.

I believe I said it way back when I started my blog, that because Crohn's is an Inflammatory Bowel Disease...it means there will be talk of the toilet. And poop. And wind. And all things that are usually, well, private.

But also the other symptoms that are part of having an IBD; pain, cramping, extreme fatigue, nausea. These are the ones that contribute to the memes on the internet like "You don't look sick...And you don't look stupid" etc. etc. These are part of the invisible illness side of it all. However this one did make me laugh today...

Sorry back on track.

Maybe we're all a bit too British and we don't like to talk openly about what happens during our time alone in the toilet? Wahh. That sounds a tad too off topic. But you know what I mean!

Even with regards to Crohn's and IBD Charities; they can only do so much with their findings/research, as it can be of such a sensitive and personal nature.

Take for instance last Friday:

I was emailed by the Crohn's and Colitis press office to see if I'd be interested in talking to Star magazine about my Crohn's (due to the spiked interest in Sam Faiers' diagnosis).

Being in a post-holiday, disorganised state I missed the call...and hence missed the opportunity to do so. I then emailed the press office to say that I would be open to future opportunities to talk about Crohn's, to which they replied "We really appreciate your candid support, since you can go where the charity cannot."

Now I'm not daft in thinking that we can all hold hands and sing about poo at the top of our lungs in a park together. And equally, I can't expect everyone to automatically know/understand what Crohn's is.

But generally being a bit more open to the idea of an IBD and what it entails wouldn't go amiss?

And hopefully in the not too distance future, it won't take a reality TV star to highlight just what us Crohnies are going through. People will already understand.

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