Half Marathon Plodder

When I started blogging, someone once asked me if I minded that my main topic was my Crohn's - I guess meant in a way of did I want to write more about me, without the obvious affiliation to my disease. And I didn't really know how to answer it?

The older I've got the more I've realised that it is part of me; whether I like it or not it has an effect on all areas of my life, both good and bad. And the fact of the matter is, I am my Crohn's and my Crohn's is me. Of course there are days when I begrudge the seeming unfairness of it all - especially when I was younger and I was spending more time in hospital waiting rooms than I was at university. And in more recent times realising I really don't have a choice at all in how my body behaves. But my body has also fascinated me by pretty much pretending Crohn's is gone when I've been pregnant with my boys, and it's allowed me to go on and have two very healthy, wonderful pregnancies. Swings and roundabouts, etc.

I had my post-op colonscopy on the weekend and (surprise, surprise), there's still signs of active disease which means upping my dose and frequency of my biologic meds. So yes, it can still get me down. I'm doing as I'm told, I'm taking my medicine... I'm doing all the things the doctors advise AND YET we don't ever really seem to get ahead of the disease.

But despite all of the monotony of a chronic illness and pain, I got my Crohnsy arse in gear and I managed to complete my pledged half marathon distance for Crohn's & Colitis UK. Well done me. 

I aimed to do 7 miles walking as I was waaaaaay below on my iron - normal healthy person optimum iron ~40, I came in with a strong 4. So I packed my backpack and off I went into the wilderness of the westcountry with only my headphones and the cows to keep me company. My main concern was literally shitting in the woods, but alas, no Paula Radcliffe this time round. I found that the walking itself wasn't too bad and I think because of how crap last year was, there was definitely that drive to plod on and keep going. To see donations coming in as I walked was so encouraging (shed a tear by some sheep in a field because I'm a mess?) But it really did spur me on. So much so, that my aim of 7 miles came and went and lo and behold these little tired legs completed the half marathon in one stint. 

I really am proud of myself because I really didn't think I'd manage it. And I did my 13.21 miles in 4hr 23m. Because of my shameless pride I have no qualms in saying the Walk It fundraising campaign ends on 30 June so this is my final call to anyone who would like to donate to Crohn's & Colitis UK.

https://www.mywalkit.org.uk/fundraising/harriets-walking 

I'm going to try and put some videos up of me rambling whilst I rambled. But just want to say a massive thanks to everyone that has donated so far. It means so much to me, as I imagine this is a charity that I will need to lean on many more times in the future.

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10 Year Challenge

You may have been aware of the latest internet craze called the #10yearchallenge? Essentially a then and now (or at least a 'then') from 2009. Why someone felt 2019 was the year to look back from is beyond me? Surely 2020 would have been better, as a multiple of 10. Or maybe I'm just thinking too much about this.

Anyway. I hopped on the bandwagon on this drizzly Wednesday, after many a day of scrolling through various social media platforms seeing people's throwback to a decade ago. Glow ups, etc. Lovely time. And I put up a picture of me from ten years ago.

But it wasn't until I started looking through my own photos properly from 2009 that it dawned on me: I've been having my own 10 year challenge. January 2009 was the month I got diagnosed with Crohn's. 2009 was the year that what I thought I knew of my health was all change for forever more. A whole decade of diagnosed IBD.

I pretty much spent all of my 20s - in one way or another - poorly. In hospital. Lying down because it hurt to get up. Sleeping on a narcoleptic level. Fat. Thin. Steroid moonface. Taking medication. Injecting medication. Having an IV for medication. Keyhole surgery. Robot surgery. Slice me open surgery. Hospital admissions. Inpatient. Outpatient. Too many perianal abscesses to mention. Too many visits to a toilet. Too many medical professionals looking up my asshole.

In January 2009 I was presented with a challenge I didn't know I'd have to face; a challenge that had mini-challenges en route. But Jesus Christ it has absolutely been the making of me.

And here we are now! Yes OK, I'm like 17 operations in (who's counting?!) But I am in my 30s. Married. Mama. Now a homeowner (what a palaver that was - will pick up that topic of convo another time). Back working on a magazine portfolio that I love so much. Things are actually really good! And I'm so happy that everything finally seems to be falling into place for me and mine.

Sure, I still have to do an assessment of where all toilets are if I'm out for a family walk. Or there might be times where Mummy just needs to have a quick powernap before we watch Teenage Mutant Ninja Turtles for the 6th time that day. There might also be times - like now - when I'm sitting on a train and I catch my reflection in the window and it's apparent that my tired bags have developed their own bags. Eye bags on eye bags. It's quite a look and I don't think any form of makeup layering is going to help this face out.

I don't mind you see, because besides being rather tired, I am content. I have spent three days in London doing meetings and what not for work and it brings me joy. But not as much joy as stepping off the train to be greeted by my husband and son will bring me. My boys. My little team.

To be honest...I'm not sure where this blog post is going. Am I waffling? I just knew that I had to take a moment to acknowledge the ol' decade long anniversary of knowing my insides were broken. And that however shit things might have seemed at times, it works itself out. Ish*

Here's to the next ten years.

X

*I mean nothing is a guarantee. But all in all, I guess if you can find the positives where possible and then just ensure to have a ruddy good time?

PS: I'm running out of sentences to apologise for my MIA blogging. I do get annoyed with myself that it's so infrequent. But I guess it's going to have to be as and when, probably the best way forward. So until next time...(whenever that is!)

Ass Issues

Needless to say it's certainly been a little while! And even though it seems wildly out of context, Merry Christmas and a Happy New Year to all. So now to 2018.

Brief update on what's been happening: got discharged from hospital after my stay in November (don't think I'd cope if I was still there now) and I had everything crossed for a lovely normal Christmas period. Wanted to start 2018 with a 'new year, new me' attitude and all that shite...Dyed my hair blonde. Strong start. 

From a general Crohn's point of view though, we made it to January in a relatively normal state - no more hospital admissions, and I will take the small wins as and where I can! Also had both an outpatient appointment and a catch up pre-Christmas with my consultant. I mean it wasn't great news?! Essentially, your inflammatory markers should be around 50 and mine was coming in at 507. Whoopsy. Have a vitamin D deficiency too, but as far as I'm concerned, if ever there was an excuse to go ahead and get the honeymoon booked it was my body medically crying out for a bit of sunshine. And I finally got my iron infusion - second time lucky as the first time I had a temperature after the flu jab. Swings, roundabouts, etc. Was also still on the waiting list for the EUA from September - and herein lay the problem; THAT'S A VERY LONG TIME TO HAVE A POORLY BOTTOM.

But as of yesterday, I got my long-awaited EUA. All up in my personal space trying to figure out what exactly is happening with my ass. The surgeon came to see me beforehand as they do, and tried to explain to me what was going to happen. As with any type of IBD surgery, it's very much a case of consent to almost everything and then see what you wake up with. I know this. Yesterday was my 16th time in theatre. It's just a bit tough when they essentially say they don't know what's wrong with you.

I had an MRI in November and it showed that there was unusual activity in my pelvis. So then I was sent for the flexible sigmoidoscopy but they couldn't find anything? Yesterday's surgeon spoke to the people who carried out the MRI and the Flexi to literally try and get to the bottom of it. But to no avail, it seemed. The surgeon also mentioned that maybe the only way we can stop my bottom being such a pain, is to stop using it all together. That's an intimidating thought as having a permanent bag in this scenario would be more of a choice, rather than a necessity from emergency surgery. Brain. Fried. But hopefully that's a long way off before we have to weigh up all the pros and cons.

However, I knew I was pinning a lot on this EUA. Very much viewed it as: if you're physically up in there then surely you can see what's happening?! Alas, nothing is simple and to the naked eye they couldn't find any polyps, fistulas, abscesses or fissures. She did however confirm that I have erythema and induration on my right hand side. Personally I'd almost prefer her to tell me I just had piles like a normal person who's been pregnant but then that would be too simple! Anywho. After my EAU the surgeon came back out to see me and explained what she'd managed to do. Or not, in this case. I'm going to need an urgent MRI to reassess for presence of sepsis, with the plan to go back into theatre as she didn't want to delve further when going in blind. 

There was talk previously of botox, applied to the internal sphincter (cue jokes about the most youthful bumhole) but actually that was a no-go from the get-go. The botox paralyses the muscle and the last thing I need is help to go to the toilet. Any more urgency and I would be in a position where I thought I needed the toilet toilet and it turns out I'd have already been. I'm not even 30 yet. Let me get to Nana age before I start shitting myself on the regular!

Next on the list of fixing me, is a SeHCAT scan that I have tomorrow and again next Wednesday to see if I have a bile salt malabsorption. This is a double edged sword for me as it'll either show that yes indeed I have something wrong. Not ideal, but at least we'd know what we're dealing with. Equally if it shows that I don't have bile salt malabsorption, then we're very much still wondering what is wrong with me.

In other news, I started seeing the hospital psychologist. She's been amazing. She's helped me figure out that actually I am pretty well equipped with the 'tools' I thought I needed, and that maybe - just maybe - my expectations for myself were a little too high and that sometimes it's ok to just be ok. Being able to shift my mindset ever so slightly and not give myself a hard time when ill has done me the world of good. I feel more like I can take on the challenges Crohn's throws at me, whilst also maintaining my mama skills I was worried I'd lose because I'm the 'poorly mum'.

Towards the end of our last session we briefly discussed body image. I'd like to delve into this in slightly more detail so will do so in another post - mainly because it's something I've been struggling with of late, as I don't know what I look like anymore. What is my body after pregnancy and Crohn's flares? What shape am I? Who knows?! I certainly don't.

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Return of the Ass Invasion

Not a sequel I'm particularly keen on, but it was only a matter of time until it was a knickers down/knees up appointment with the gastro team. And after what I thought was an MRI in the pipeline it appears that nope, let's get me in for a pre-assessment and colonoscopy in two weeks time. Joy. When the hospital called I thought it was to schedule in the aforementioned MRI - but it seems that my 'case', if you will, has been discussed in the clinic between the consultants and the best route forward is to get up all in my insides instead.

I know I'm not well at the moment (still essentially green in complexion because I'm so pale) and the bags under my eyes now have their own set of bags. I just get this massive anxiety over what they might find when they're routing round my intestines - especially now I've got the small human to be there for and to look after. I don't want to be the poorly mama. I want to be enjoying every mini milestone he hits as he grows and not need to abandon winding him because I need a sit down. He'll be three months on Friday and in the grips of teething so needless to say it's all just getting a tad overwhelming at present.

But despite my finding it tough at the moment, his beautiful little face makes every day seem that bit easier. Such a great distraction from the inevitable shits and pain.

I would just like to get the ass invasion over and done with and the medical plan put in place; I've got a wedding to plan and a baby to be with.

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I'm Pooped

If I've had an unintentional break from blogging, I always find it easier to pick it up again when it's Crohn's related. I don't know if that's because my Crohn's escapades always leave me wondering and subsequently that means I've got a lot on my brain that I need to let out. But either way. Here we are.

So as you are aware, I have Crohn's Disease and last year I also fell pregnant. As I mentioned many a time in my pregnancy posts, I considered myself super lucky to be able to enjoy every aspect of pregnancy like a 'normal' person with my Crohn's essentially putting itself in remission whilst I grew a human.

Well, said human is now out of me and 10 weeks old on Friday. And lo and behold we're back aboard the gastro train and it's like my Crohn's never left. (Wah).

Casually still waiting to be seen. Everyone else had left. Even the cafe had closed.

I had my catch up with my gastro consultant last week for what can essentially be described as a prelim to what looks to be an MOT for my postpartum body; all the bloods due to be taken and a small bowel and pelvic MRI in the diary. I think I spent the first month or so of motherhood pretending that I was perhaps more well than I actually was. No one should be shitting blood at the frequency I am and I think I tried to just get on with it for longer than I should have. And now I'm where I am now, which is scared to eat for fear of the impending bloodbath out my back nethers.

This in itself is a catch 22 as I'm still breastfeeding (technically combination feeding but the boobies are still required multiple times a day) and as any breastfeeding mother will know, it makes you oh so hungry. Any new parents will also know that looking after a new baby makes you rather tired (!) So this, coupled with the blood poos is all adding up to one mama who's so pale she's see-through and in need of a ruddy good lie down for about 8 days.

Don't get me wrong, I was never expecting my Crohn's to calm down when preg and I also wasn't expecting it to stay away once my bab was born. But if I was to say that I'm not sad about these latest developments, I'd be lying.

However I have to look at the bigger picture now I have a son and my stubbornness and my pride has to take a backseat when it comes to my health and looking after my baby boy. Would I rather stay breastfeeding but getting more poorly because I don't want to take certain medicines? Or do I take the medicines that would mean I'd have to stop breastfeeding, but can ultimately feel better? Obviously it's the latter. I just hope that the MRI isn't complete doom and that there's something we can do in the short-term so I can get back to being mama. Even if it's a mama who shits a lot.

And my poor bab having to get dragged on his Sleepyhead into the bathroom 10+ times a day. Hopefully he's far too young to be scarred by the experience. But everybody poos. his mama just does it more than your average.

X

PS: My hospital is in Westminster. The day of my appointment was also the day that they had to close and evacuate Westminster Bridge due to a WWII bomb discovery in the River Thames. Let's hope that's not an omen of any kind, hey.

Pregnancy Lent

Kind of. We're now less than 40 days and 40 nights and there will probably be a lot of pancakes consumed by yours truly.

Officially (as I type) we have 37 days to go until our c-section date and the list of things to do/buy before the human arrives is getting that bit smaller; which means it's getting that bit more real still. I said at the start of blogging about my pregnancy that although it's Biology 101 for how a baby is made and grows, it is still one of the most fascinating things I have ever experienced in my life. I still consider myself extremely lucky to have had a relatively 'normal' pregnancy with regards to my Crohn's calming down - and if it comes back once bab is out, then I will cross that bridge when I get there. But at least I've been able to feel like I have carried this baby with little to no complications thus far. Just can't let my arse fall out at the final hurdle, to quote my gastro surgeon.

Talking of bottoms...seamless link...

I think more needs to be said about HOW CONSTIPATED YOU GET IN THE THIRD TRIMESTER. Let alone how you feel like Windy Miller with the air just falling out of you, top and bottom. I'm a disgrace. Thank god I've been with my other half for 9 years, because the romance has well and truly died recently! I'm not used to having bowel movements like a bus service on a Sunday in a village. My bowels pre-preg were a 10-15 times a day situation. I don't know how to deal with this once a day malarkey!? How do you people do it? I feel like it's just not enough. But hey, if bab slows down my digestive system to a snail's pace, then that is the less frequent shitting hand I've been dealt. It frees up so much time! Although saying that, the toilet dashes have been replaced by toilet dashes...just for a number one instead. But still so much quicker! Even if you need to do all the weeing, what with the baby pushing down on the organs. And sneezing still makes me nervous, mind - ruddy pelvic floors *squeezes muscles*

Did a version of a #bumpingalong for my 33 weeks (got to get the lift pics in whilst I can) and I'm kitted out in head to toe maternity Topshop. Even gave a nursing bra a run out and I felt so free. Big ol' wobbly mama-to-be boobies. And despite my breasts being the largest they've ever been in my life, my baby bump is so much further out - hence my human pyramid effect.

So yep, this week and it's my last week of work; all finished on Thursday. I will do a final work-based #bumpingalong and a post about maternity leave, as I'm already finding the concept quite odd. It's a real mix of emotions.

But for now, I think I've done a good bit of oversharing...

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Journey to Bump

The road to pregnancy was an odd one for me. Not that there's a normal route to being preggers, mind. But before you read on, I don't want you thinking that this post is about the birds and the bees. It's more...the birds, the bees and the bowels? Bowels being the key part.

Having Crohn's and knowing that at some point in my life I wanted to have a baby, was a combination that I'd worried about since I was first diagnosed; I was advised to look at freezing my eggs (as fertility in Crohn's patients wasn't the best). The thing is, the thought of actually having children was so far away in my mind at the time, that it was strange to potentially make that decision at the end of my teen years. Who knew how I'd feel in five, ten years time?

I decided not to freeze my eggs. I felt that if having a family naturally was something that I was supposed to do, then it would happen. If not, then so be it. I'm a strong believer in a family being a family regardless of its set up and how you all got there.

When I got to an age and stage in my relationship where talking about having a baby was a real thing, I had so many questions for my consultants...Can I have children? If I am fortunate enough to have children, are they going to get my Crohn's? How would Crohn's effect my pregnancy? Will I be able to have a natural labour due to all my previous operations?

In a nutshell...I'm pregnant. So it seems that in the first instance, yes I am able to have children (well at least conceive). Whether this baby that I'm currently growing gets my Crohn's? That I don't yet know. Crohn's & Colitis UK's info on Pregnancy and IBD says that "5 out of 100 children born to couples where one parent has Crohn's might be expected to develop IBD. Even with genetic predisposition, other additional factors are probably needed to trigger IBD." We will just have to wait and see and hope that our baby is as healthy as can be.

With regards to Crohn's during my pregnancy - this has been a complete turn up for the books! It seems being with child is the best medicine! Who knew pregnancy would be so beneficial to my bowel?! As it stands my Crohn's has calmed down immensely; for the first time in years all my levels are settled and I'm not worried if I sneeze, I'll poo. If anything, it's quite the opposite. It's like my body has forgotten how to go to the toilet-toilet and that's the oddest sensation for someone that has, on average, probably shat 10-15 times a day for the last 7 years. If TMI, sorry. But, you know...Crohn's.

Fiancé and I are in the midst of talking to the antenatal team about my staying on Azathioprine and whether we go back on Humira. As unlike Aza, they're not yet sure on the use of Humira in the third trimester (although if urgent/required then they'll let you. Pros and cons, etc.) But it looks like I may not need Humira after all if things stay the way they are!

Then that leads me to the last question in my little list of worries: labour. The grand finale to this whole musical that is pregnancy. Actually getting the miniature person out of me. Gosh.

I won't be allowed to do any pushing as - to quote my Crohn's surgeon - "my arse would fall out" and I for one am not ok with that and neither are they. We're all also keen to make sure that me and baby are safe, however that needs to be done. So elective cesarean it is. Scary thing is, is that our c-section date is already booked in! I now know categorically that I'll have babe in arms at 38 + 4.

Unless the little human makes an early arrival.

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It's only been 2 years

And my hasn't it flown by?!

A brief update wouldn't go amiss, otherwise you're probably wondering why do I even need to start reading this blog? Who even is this rambling person that just pops up online after a two year hiatus?

Well that person be me, my friend. Harriet, off of Harriet's Got Crohn's that has now decided to be called Hattie online. Sure. Let me try it out. See if it fits. And so far, I'm quite the fan.

It would be easy to say I don't know where to begin, but then that doesn't really help much with an 'update' per se. So maybe it's best I do a quick run through on the Crohn's to get the medical bit out the way and then we can talk about all the fun things that have happened and are happening!

So...

Can't remember what operation number I was on when I last blogged, but I've now had 14. Most recent being another pain in the ass one in December 2015. Care still under the Gastro team at Guys & St Thomas' which is hands down one of the best hospitals I have ever had the experience of being looked after by. They couldn't be more aware of what's going on with me individually and when I'm there I don't feel like just another hospital number. I feel like a person.

To be honest, that's probably why I haven't felt the need to blog for such a long time as - although I haven't been well - I've had a much better support system from the people qualified to help me when I'm ill. And it took me moving hospitals countless times to realise that it shouldn't be an unusual feeling; to feel like you're being looked after when you need it, by the professionals who are there to help you. So yes. Still very much team Guys & St Thomas'.

Meds-wise, I still struggle with the whole Humira injections and have been told off many a time for bad adherence. So we're currently on hold with that whilst they see if Azathioprine can do the job on its own for a while. If it can, ace! No more spring-loaded pens into the abs of steel (ha! Who am I kidding?! No steel here) Will make sure I keep you in the loop with that one. Meds, not my six pack development as that is totally not a thing.

Talking all things body...you may recall a post or 9 about the weight gain from all the medicines I've had over the years. Well the heaviest I got to was 75kg. Now at only 160cm it doesn't take a genius to work out that I was past the point of plump. Then the fickle finger of fate stepped in and through another flare up I went back down to my natural weight of 53kg. Only problem was that it was in a period of three months - so all eyes on me from a medicinal point of view. Doctors everywhere. All the tests. But since coming off the multitude of meds my weight has plateaued and we're doing ok!

No remission officially as of yet, but hey, it's already been 7 years since diagnosis and no remission. What's another 7 or so!?

I think that covers it from a health point of view. I'm sure if it hasn't I'll be blogging about it now I have definitely got the blogging bug back whilst typing this *excitable scream*

Hmm. Now what else has happened since I've blogged last. Oh I don't know. OH YEAH. I GOT ENGAGED.

Officially a grown up. A Mrs-to-be.

All very exciting. All very romantic. Many things to plan. Many things to think about. So many wonderful things to look forward to over the next year.

And that's where the glamour of Crohn's brings you straight back down to earth; when you look at wedding dresses online and consider the ease in which you can go to the toilet toilet. What a bride I'll be.

But now you'll all be there as part of the journey, too.

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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!

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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!

X

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!!

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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.

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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 

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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.

X

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?

X

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.

X

The Joys of the Unpredictable

Well this morning didn't go as planned!

Didn't eat anything new/different last night...body seemed to do its normal thing of eat, toilet, toilet, bed. Yet this morning - jeewhizz. No fun at all, my friends.

Stomach was bloated and a tad painful (nothing new there), went to the toilet as per the usual morning routine. But the nausea that came with it! And the physical need to want to actually be sick! Uhh indeed.

45 mins later, got dressed - whilst sweating like it was 130 degrees - and left to get the tube. Until the overwhelming urge to both go to the toilet and vom came back. Cue a mad dash back down my road and straight into the bathroom.

It's so draining though. And then it makes me cry. And I was still really hot so sat on my bathroom floor to cool down (totally normal). Rang my manager, explaining my mini escapade and that I was running more than a little behind. Fortunately he was understanding and just told me to calm down, see how I feel and let him know...

At work now though. Still feeling a tad on the unstable side (body, not mind this time!) with my stinging post-cry eyes, but I shall power through as only one can. Until tomorrow anyway!

So yes. That was my morning and it's fair to say I wasn't expecting the first few hours of today to result in me essentially hugging the toilet and crying.

I still don't know why my body did this? Could it be the Azathioprine being all weird as I'm only one full week in?

You have to laugh though. It's all so bloody unpredictable.

X

What's been going on...

It's been a weird few weeks!

It's almost like I don't know what went on, as so much happened. I guess the best place to start, would be to pick up where I left off; counselling telephone assessment.

To make it a bit more fun, I've named each bit after a song. Why not! Sing it if you like...


Mr Telephone Line

So they called me on the Thursday, at exactly 9:10am as promised. It's always a bit strange doing these assessments, as I would prefer it's done face-to-face, but means to an end and all that. Went through all the questions with the lady - who was so lovely, which helped - and she informed me that the next step would be her passing on my info to her supervisor and they will be in touch.

Whilst I waited, I threw myself into work as I really am loving my new job...and my hard work paid off as I was awarded with Employee of the Week and won a £50 voucher at the end of my first month!

But I digress. Back to the phonecall.

They called me the following week to let me know what they'd decided was the best route of action for me, based on the answers I gave. Originally I had asked for individual counselling as I didn't find the CBT group too helpful last time.

However, they proposed another group for me. One that is specifically for people with chronic diseases. Worth a shot I guess?!

This all begins on 17th October, right in the middle of the working day, for an hour. Inconvenient at best, but I know that a few weeks counselling in the short-term will help me cope better in the long-term.

Which brings me nicely to my next update...


Manic Monday

Except it wasn't a Monday. It was actually a Friday. And I was in a meeting that I had arranged with my manager and my HR department.

Obviously I'd rather not go into great detail, but brought it up to let you guys know why I decided to arrange the aforementioned meeting!

Due to the unpredictability of Crohn's, and my medical history combined, I decided it would be best to gently broach the subject - more as a just in case.

I wanted to make a plan. I wanted to know that I wouldn't have to feel guilty on those days where I'm running late because I can't get out of bed/leave the bathroom/make my way in without a toilet stop-off.

I also wanted to know the work procedures in case I needed another op/went into A&E out the blue (both of which have happened to me whilst being a working girl. Not that type of working girl. Just a girl. At work. In an office).

And of course I needed to inform them of the various regular appointments I had coming up; counselling every Thursday from 12:30-1:30pm for 6 weeks, the regular blood tests now I'm on Azathioprine, my dietitian appointment on the 21st..

Naturally my mind flapped due to the following thought process:

*AREN'T YOU GLAD YOU HIRED ME?! I'LL BE THE EMPLOYEE WITH 75,000 APPOINTMENTS DURING MY PROBATION PERIOD*

But it turns out that this company is pretty damn fantastic and openly said they will do as much as they can in order to support me - as long as I'm open with them (within reason obviously, as no one needs to no bowel movements down to the second!) But I think is fair enough - as I've definitely learnt from past experience with university/employers that it's best that they're made aware of what's going on. Otherwise I'll only be a hindrance to myself!

All in all. Very pleased I decided to bring it up now, whilst things aren't as crazy as they have been. And at least I know there are contingency plans in place...because my body is a strange one sometimes.


Doctor, Doctor

I also had the hospital last week, to get a round up from all my previous scans. The good news is that my insides seem to be calming down and I seem to be the closest to remission that I've ever been.

One would assume this would make me feel very happy, however I actually felt a bit odd.

I don't know if it's because having not long started on Azathioprine my body feels all over the place - and I guess I don't necessarily feel all that well, yet.

Like I'm being told my body is the best internally, that it's been for a long time. But for some reason my mind and general well-being doesn't match that at the moment.

I guess it's also because all that I've known since 2009 is the ups and downs of Crohn's...but mainly the downs with regards to ops/treatment/meds, etc.

So now I need some time to adjust. But I'll get there though. Especially with all the upcoming appointments which should really help me over that final hurdle and into remission.

Who'd have thought?!

X

PS: Each subtitle in the post is linked to YouTube if you do actually want to sing along ;)

Ring Ring

So I have a telephone assessment tomorrow. For my mind.

This makes me nervous but it's all for the right reasons!

I just have to hope I'm not on la toilette at the time of the call - as my body doesn't like an interruption to its own schedule...

Haha - taraa for now!

X

For Fellow IBDers

This post is for all my readers that have an IBD as you will know EXACTLY how I feel today.

The pain in my stomach is bad, but hey ho that's part and parcel. But what I am struggling with today is not being able to walk more than 5 metres without genuinely feeling like I'm going to shit myself.

It's exhausting.

And after the commute from hell this morning, I've got a feeling today is going to be a tricky one..

X

*****

So I was just browsing the internet, as you do at lunchtime, and I found this: People who are having a worse day than you

Made me laugh! (But not too hard, in case I pooed haha)