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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All the Things

Not really sure how to start these posts now, when it’s more of a current health update, as opposed to the woes of yesteryear (NB: 2020). But if I’m going to ramble on about certain IBD situs, then I guess I might as well keep you informed with the now...

Had my appointment with Gastro on Monday. Essentially my bloods say I’m anaemic again and I need another iron infusion; they want to get up my arse with another colonoscopy to assess post-op if my 12 weekly home injections of biologic meds needs increasing to every 8 weeks instead; to try not to lift my sons due to the abdominal hernias and then could I please shit in a pot for a stool sample (my words, not theirs). All this before pending surgery, if covid deadlines allow. So that’s a barrel of laughs ahead!

And whilst I’m dreading any letter that arrives with a hospital postmark in case it’s my kidney operation date, I had one arrive this week for the eye hospital because *spoiler alert* apparently Crohn’s can also affect your eyeballs and get inflamed there too. Specsavers weren’t too sure what was going on in my left eye and thought it best I got referred to the eye specialists. Lovely time.

I mean, I’d be lying if I said I’m ok with the volume of things that seem to be happening in one go? So as a distraction I’m going to try and complete my half marathon walk this coming week. Ideally in one day, but, you know, I’m a little bit broken inside ha. Plus it’s also very warm at the moment - don’t want to be chafing as I stride up a hill with a big stick.

Will let you know when I’ve walked my walk and whether I can stand up by the end of it. For now though, I plan on sitting in my garden in the sunshine and listen to my children play. Make the most of the fleeting British summertime.

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My JustGiving page 

Bad Fit

Clearly the universe gets the vibes when everything is lovely and settled because BOOM. It all went to shit over the weekend.

As a parent I am aware that there will be many occasions where as much as I want to, I cannot simply wrap up my son in cotton wool until he's 37. He will fall over at school and hurt himself. I'm sure there'll be times when he doesn't look where he's going and headbutts a wall. There have been times when he is beyond snotty and I just want to make him feel better. And then there are times like Friday evening when you simply feel like you cannot do anything to help your child and you're helpless.

My son had a temperature and I was asked to collect him from nursery on Friday (he'd also been teething), so naturally didn't think anything of it. We spent the afternoon on the sofa watching The Greatest Showman and having all the cuddles. And then just before tea time, he was laying on my tum - he looked up at me and it is a look I will never forget. He was trying to focus on me and went to put his hands on my face. But he couldn't. He couldn't focus. He couldn't reach me even though I was right in front of him. And then his eyes rolled into the back of his head and he began to fit.

I put him on his side on the floor as I wasn't sure if he was choking at the same time. Fortunately, (and god knows how it was at the EXACT time it happened), but my sister-in-law arrived and she's a paediatric nurse. We knew straightaway that we needed to call an ambulance - and my word, that conversation was the longest 11 minutes before the crew arrived. My husband was with our brother-in-law and they both raced home once we'd spoken. Seeing the father of my child burst through the door to quite the scene, must have been really tough for him. I knew how I felt about it all unfolding in front of me; I can only begin to imagine how he felt, too. In a nutshell, my son had three seizures before the ambulance arrived. Vomited twice. Shook. Was stiff. Was unresponsive. Couldn't focus. And I've never felt more useless. My sister-in-law did a sterling job as I flapped around the edges, packing a bag for the hospital and whenever we were able, hold onto our boy to tell him his Mummy was here, Daddy's here. We love him.

Everything is a wee bit of a blur and I guess by my writing about it now, is in some way a coping mechanism for what went on this weekend. The post may get a tad lengthy, but a lot happened that I need to get my head around.

In the ambulance, we had two pit stops: one to collect another member of ambulance crew to administer some medication whilst we went blue lights a'flashing through town. And then another to pick up the air ambulance doctors who had 'Critical Care' emblazoned on their jackets (!) My little boy was on the bed with all of these people around him, and I just sat there with my seatbelt on, holding the gas tank because I had nothing else to bring to the party. And my husband, bless him, sat in the front of the ambulance similarly helpless. We got to the children's hospital and headed straight to A&E - to resus - where what seemed like everyone who worked in the hospital was waiting for our arrival. [Anyone who's watched any kind of real life hospital programme on the tele knows it's not the best if they ring the red phone. The critical care doctors had rang the red phone before our arrival. THE RED PHONE.]

Never have either myself or the husband wanted to pick up our boy and tell him that everything is going to be ok...and it actually be ok. In that instant. Be able to make it better for him now.

Unfortunately despite all the medicines in the world for seizures, nothing stopped him fitting. Until they stuck paraldehyde up his tiny bottom; a last resort before a general anaesthetic. At this point, one of his seizures had lasted 50 minutes - and I thought that 11 minute phone call had seemed like a lifetime. Jesus, was I wrong. They ran a CT scan as well as did a chest x-ray and as far as we could tell, there was nothing major to report on either of them. We just had to play the waiting game on the High Dependency Unit overnight.

Fortunately there were no more fits on our first night in hospital (his body must have been exhausted and that makes me so sad for him), but we waited to see the neurologist team that following morning anyway. Our little person who we made was struggling to bear any weight on his own two feet, he was still really floppy and lethargic and had the oddest gurning going on; his tongue kept coming out like a camel's and his speech was all slurred. All we could do was hope that these symptoms were down to the fact he was off his little rocker the night before and that rather than them be symptoms of something more serious, they were instead side effects of the drugs he'd had. Hopefully with a good night's sleep they'd wear off and disappear? The consultant decided that it wasn't worth the risk and that our son would need to have a lumbar puncture. In case you didn't know (we didn't) a lumbar puncture is a procedure in which they put a needle in between the bones of the lower back, into the fluid around the spinal cord and the fluid can then be extracted for testing. We got told we were testing for meningitis - as well as anything else that might have caused the seizures. They tried to do the lumbar puncture with some sedation, but despite not being 100% himself, our little lad was too wiggly for them to do it on Saturday.

Which leads me onto Sunday. Our son had been treated with antibiotics from arrival as if it was meningitis, whilst also having antibiotics for all things viral and bacterial; it's gibberish to me, but all you need to know is they were so on top of his care from the moment I dialled '999' and I am forever grateful to the NHS.

But yes. The needle in the spine. Poor chap was nil by mouth from 6am Sunday morning as he was due to go into theatre in the afternoon. My husband and I took him down and as only one parent was allowed into the anaesthetist bit, I went in with our boy after my other half kissed him and told him he loved him. Now I've had 17 operations. 16 with general anaesthetic (one was a c-section, so a jazzier op than anything Crohn's related). Yet holding him in my arms as they administered the knockout fluid through the cannula in his little hand was something else. Hearing my little boy say it was 'chilly' and holding his arm as the cold fluid travelled up his forearm - a feeling I knew so well. And then just like that, within no more than 2 seconds... he was asleep. I kissed him on the head and told him I loved him, too. Told them to look after him and went out to meet my husband. And we waited.

We got a call exactly one hour later: we left him at 2:44pm and the ward called at 3:44pm to say we could get him from Recovery. As before, only one parent could go so this time my husband went to collect him and I waited to give them both a big squeeze.

Should probably throw in for good measure here that our son was definitely feeling more like himself that morning as he was able to do standing. And walking. Or as he ended up doing, a quick turn near the only cupboard in the room and split his eyelid open on his brow bone. So for dramatic effect, we then ended up with not only a lumbar puncture scheduled in - but a few stitches too for the newly developing black eye and laceration. Don't do things by half son! With regards to theatre though, all went to plan and the results from the lumbar puncture were due to trickle through over the next 24 hours. My husband and I continued to tag-team the hospital nighttime shifts and had everything crossed for some good news.

Unfortunately for the little one though, there were a few moments in the nighttimes where he had to have his cannulas removed/changed for his antibiotics. Hearing your child scream out for Mummy and Daddy whilst sobbing because of pain is so so tough to see. When the final cannula was removed on his last night, he turned to me when he woke up and just announced that 'baddy...gone' and gestured to his blood-stained foot. My heart melted for him.

But onward and upwards we went! The test results were starting to come in and we were looking good for it not being meningitis. However the fact it was still being mentioned due to some outstanding test results, meant none of us could fully relax just yet. He was definitely more like himself. But we wanted to make sure we were going to leave with the best case scenario: that being that it was a complex febrile convulsion, and hopefully there's no lasting damage - with these fitting episodes few and far between.

And that is what we got: complex febrile convulsions. That was our diagnosis on the discharge letter yesterday.

So after 5 days in hospital (and what seemed like forever) we were going home, together.

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NB: I had febrile convulsions myself as a child until I was around 9. I knew what they were - but under no circumstances did I think I would see my own son have a seizure in front of me. Multiple seizures, in fact.

Apart from writing this post as a way for me to process the weekend's activity, I also wanted to put it out there because it was such a scary unknown for us as parents. That guilt I had was horrible; that maybe I should have been able to stop the seizures happening. But the doctors explained that generally speaking, with febrile convulsions it'll kind of happen regardless. As in, he didn't have a fit because I didn't do enough to make him feel well. 

And now we know that if it's to happen again, we just do exactly as before...ring 999 and let the emergency services do what they do best.

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!)

Headspace

If you follow me on social media, you would have seen that this week has been quite a challenging one for me - especially with regards to my Crohn’s and how I’m maybe not handling it in the best way this time. It’s an emotionally draining disease: the rollercoaster of feelings you can have in such a short space of time is quite overwhelming and this particular flare up seems different. I don’t know why, it just does. In all likelihood it could be down to the fact that I currently have no ‘normality’ yet; I’m still in a settling in period. My mundane routines are shot to hell what with the relocation from London, being a newlywed, going back to work after Maternity Leave and the mum-guilt associated with that. My support network is still there, oh for sure. But my personal go-to coping mechanisms aren’t necessarily.

I guess I just don’t feel like I have that guarantee this time, where my mind doesn’t need to flap so much (I have zero reason to think things won’t be ok and I am more than aware at the irrationality *eye rolls at self*) But for instance, these are the things I worry about…how I haven’t been back at work long enough to feel like I can prove myself, e.g. when my insides go mental don’t worry guys! Because when I’m healthy, oh I’m grand. Or to know how to function as a Mummy when really poorly. Or worrying about WHAT IS THE ACTUAL PLAN WITH MY CROHN’S. And when you’re sitting in a hospital bed on your lonesome in the middle of the night, you can’t help but let your mind wander.

There just seems so much uncertainty and for a woman who likes a plan…this one’s tough.

I spoke with my IBD nurses at the hospital and they recommended reaching out to the psychologists here. I’ve always been very vocal how for me counselling has been a great help – I’ve tried a variety over the years from one-to-one youth counselling, to a more general CBT approach and also group sessions for people with other chronic conditions. And now I feel that I need another outlet. For who I am as a person now. As a mother. As a wife. As a new West Country bumpkin. Where do I fit in and how do I learn how to manage with my Crohn’s for the current set up? Excuse the wanky term, but that’s a ‘journey’ that I’m going to have to go on and hopefully find out some of those answers.

I need to learn that only I put pressure on myself to be worrying for everyone one else in the world. But hey, once a worrier! But also that it’s key to know it’s all right that there’ll be things out of my control and everything will be just fine whether I’m in hospital or not. Whether I sit in this bed for another two weeks or I’m allowed home tomorrow. And that I’m also no use to anyone if I don’t allow myself time to get better: do as I’m told. Do as the doctors say. Rest when told. Let my body do its thing. Because my Crohn’s alone looks to be laden with many more hurdles and challenges over the coming months and I need to be ready for that. And it’s something I’ll be sharing with you all for sure.

From a more general standpoint as it stands with regards to my care, we are yet to manage a full meal. However we have had the camera up the ass today – wonderful Friday morning activity – and also had another x-ray to see what the bloody hell is happening inside me. There is a pesky 30cm section of small intestine that was found back in Summer 2015 and it was something we were ‘keeping an eye on’. Well the eyes have been subsequently peeled and nothing has changed so… but herein lies the problem. 30cm is a sizable chunk of small intestine. We don’t just whip that out willy nilly now guys. When discussing the large intestine, there are slightly more options surgically speaking – in that you can actually take it out completely if needs be. But when it comes to the unusually named small intestine (bearing in mind you have around 6m), you can’t live without that. And the more you chip away at it with resections, the more you leave yourself susceptible to future complications. Nutritional issues, feeding through tubes, being open to more serious diseases. Lovely stuff. So we’re tackling this from a medical point of view first. We’re mixing up the meds. We’re changing the doses. We’re hoping that I haven’t indirectly been overdosing on azathioprine as my weight has dropped. To quote the surgeon, is the resection off the table? No, not particularly. Is it something that requires urgent intervention this week? Also no.

So it’s time to get my game face on. It’s time to get my headspace sorted. Take those 3 minutes a day to meditate and zone out. To plan whatever is within my remit to prepare for.

And know that the rest will sort itself out.

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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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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??

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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!

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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.

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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...

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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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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
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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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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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Sleep? Yes please.

I am struggling to stay awake and finding it very hard to just be awake...

I had to take some morphine yesterday as my stomach went into overdrive where pain is concerned, but this brought me to the inevitable post-morphine voms this morning.

And I haven't pooed at all today! WHAT IN THE BLAZE IS HAPPENING!?

I think this is partly the reason why I have continued to feel nauseous all day. Wahhhhhh.

In the meantime, going to try and get a cheeky doctors appointment for some pain relief that doesn't make me drowsy - so at least I can get through work this week before my scan on Friday.

Here's hoping I don't fall asleep on the tube and miss my stop!

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Who's the Chubster?

I AM!

I am the Chubster.

After having a browse on the ol' tinternet (as you do) I thought I might look up my BMI out of interest...especially as I got weighed at the hospital on Monday - bang up to date measurements, and all that.

It appears I currently have a BMI of 26.17 which means I am classed as overweight. Not that I needed the NHS website to point this out...

To get right in the middle of what is considered a healthy BMI [in this instance, around 22] it seems I would need to lose 10kgs. And I'd like to - believe me! That's a weight I always seemed to be, around 8.5 stone...just before I got really poorly. Then I went down to around 7 stone. Awful awful awful. I was a Skinny Malinky. But now I'm around 10.5 stone and, quite frankly, don't want to be.

Diet-wise, it's been pretty stable. The Crohn's medicine and accompanying side effects, not so stable. And this is evident in my ever-changing body shape...

Ideally, I would like to be a good size 10. I currently average a size 12, sometimes a 14 (if anything, to give my arm-arse* some room ha). It's not that I'm grossly unhappy at this size. It's just hard to feel like 'me', as I was always so active and weight was never something I had to worry about. And even if my weight did fluctuate, I was so body confident (but not in an arrogant way, no no!) just content.

You know when you read about drastic dieters and their photo which shocked them into losing weight? Well ladies and gentlemen, I am going to show you mine *cringes*

I cried. I wondered how I could look like that when initially, I couldn't keep any weight on?!

 

Me at a healthy weight

[post-diagnosis and a few months after my first operation]

 

 

Arrival of the Chubster, NYE 2011. Formerly known as Harriet.

Since the Chubster made its first appearance, I have tried to shift some pounds. But it's very difficult when eating is such a tricky little thing.

I did lose a whopping 6 kgs when I first came out of hospital this year. But it's crept back on, along with the bloat... which makes me wonder, if they could cut out my bloat like I was made of Play Doh, would I miraculously be around 9 stone?!

I've even started Googling to see if I am the only person in the world who can't lose weight with Crohn's. FYI, I'm not. I just find it quite interesting, as I was always warned off dieting because you can lose weight so quickly with Crohn's [although I seem to have missed this particular symptom for quite some time now...] But it seems there is almost a subculture of Cronhnies who - try as they might - can't seem to shift the weight and don't know why.

I read somewhere that it could be down to malabsortion so the metabolism slows right down. BRILLIANT.

I have trouble knowing what to eat with my Crohn's anyway, and it's something I often discuss with my consultants. What is typically deemed good for you in a healthy person, is not so healthy for my insides; brown rice, seeds, vegetables. I need a relatively low fibre diet, which is fine! Except it doesn't help when I can't control my weight gain as it is!

I would also happily go to the gym and get super-active again. Except I'm always so bloody tired or in post-op recovery, that I just don't have the energy to do it.

It's a never ending cycle guys! And one that I'm keen to break.

So, I have made it my mission to take back control of my ridiculous body and try my damn hardest to slim down to a size 10. I'm not fussed how much I weigh and whether my BMI is ok. I just want to feel comfortable in my clothes; and not comfortable like 'oooh jogging bottoms fit me well' haha. Comfortable like 'hey guys, I look and feel great!'

To begin, I am going to start a food diary for two reasons: detect trigger foods for the bloat and to make me aware of what I'm eating.

I think I'm going to post a few food diary entries on here - even ones where I know I've not had the best day - as it will be an incentive to keep going with it.

Wish me luck amigos!

From the Midi-Chubster
...formerly the Chubster...
formerly known as Harriet

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*arm-arse is the bit by your armpit where you have excess skin, thus creating a skin fold which looks like a bum.

Nothing to report...

Here's me...

Still bloated as ever, just sitting down this time.

As you can see, nothing has changed. And I'm definitely not with child.

I had the hospital yesterday and I was sincerely hoping for some answers, or at least good news. I suppose you could say I had answers......well we're halfway to answers anyway.

It seems that they have whittled my bloat down to the following reasons:

1. I have a collection based on infected scar tissue
2. I have a collection from an abscess which has formed inside me
3. The stricture they removed has since been replaced by another one where my intestines re-joined

Any of the above do not make me jump with joy. But to be honest, if I have any sort of conclusive answer in the next few weeks, then it will make me feel a bit better.

I got told yesterday that my CT Scan on April 24th has been changed to an Ultrasound with contrast. Apparently it's because I cannot be exposed to that much radiation in a short amount of time (my last CT Scan was 02.02.13?) I don't care what type of scan I have - as long as it shows up what in the blaze is happening!

Whilst I was at the hospital yesterday we did some bloods to test for Coeliac [and everything else] so I think I can call end of next week to see whether I do...

I also really hope that I'm not chasing a follow up appointment after the scan; will be the last thing I need. But also that I can be sat down and told exactly what's going on, and what happens now.

Is that really too much to ask?!

*****

I'm looking into a nutritionist at the moment - if anything, just to fill some time between appointments. But I want to know at the end of the day, I have exhausted every possible angle before I get told there's nothing they can do. Any advice or contacts welcomed, tweet me on @Harriet_Pure

*****

On a lighter note, I was in excruciating pain on Sunday evening and I think I may have taken my Oramorph too close to the previous dose. Never in my life have I felt soooo spaced out, itchy, nauseous, drowsy.

Quite funny when I think about it now - walking around like a zombie, almost kicking my cat a few times. But at the time I couldn't see the wood from the trees.

Bloody side effects.

Haha, if only.

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Body Struggles

Well today's been fun (?!)

Running late this morning, as I couldn't find my little cool bag to put my Humira in to take with me to work. Slight panic.

Cue a menopausal hot flush on the tube with a mini strip because I felt like my body was on fire, just from the swift jog to the station.

Did aforementioned Humira jab and bled through onto my dress. Excellent injecting skills Harriet.

And I'm still bloated like a pregnant lady...look, no feet!

I also found out today that I have my CT Scan on 24th April at 5:15pm. So not too far away, except I can't eat for 8 hours before...I'm going to die of starvation! The temptation in an office job is the biscuits. Damn the biscuits. Must. Avoid. The. Biscuits.

Normally it's not so bad as my appointments tend to be in the morning, so those 8 hours are mainly made up of me being asleep - therefore not eating. Obviously. Unless I had Nocturnal Sleep-Related Eating Disorder, where you sleep-eat (unless maybe I do? That's why I'm always bloated and don't know why haha)

In other news, I am trying to work out how to go about my appointment this coming Monday when I get to see my consultant.

Out of all the medical people I see, the Gastro team are the ones where I can have a moan and not feel bad about it because they're actually helpful. But I'm already worried that there won't be much they can do, and it will be a case of 'need to see your surgeon' again...

We shall see what happens!!

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A&E Adventure

I went down to A&E yesterday.

Even when I was sitting waiting, I still did not consider myself a typical A&E patient. But means to and end, and all that.

I went down as I am still incredibly bloated and uncomfortable, and after calling my consultant yesterday I was advised to go to A&E to be seen.

So off I went; first stop the triage nurse.

I explained I'd had my operation back at the end of January, and she was appalled that when she looked up my file, the latest correspondence was my discharge letter dated 4th February.

I sat back down and waited for my name to be called, and then went through to the second assessment. He essentially explained I was in a stalemate: I wasn't an emergency patient, but he could understand why I was there and why I was so frustrated.

It drives me insane that I have had to jump through all these hoops to just be seen by someone?!

Anyway. 

He told me he would put me on the majors list where I could see a doctor and they could feel my tummy, then take it from there.

At which point my friend arrived to keep me company (I had been there nearly three hours at this point) and we took a moment to look at the craziness that is an Accident & Emergency department...drunks, vomiters, people who couldn't bend their knee but walked around the room anyway, a man that banged his hand on a door and had taken no pain killers but said he thought he might as well come down to A&E. The mind boggles.

Trotted through to majors when I was called and let the man have a good push on my stomach - I cried a little - but he said that from what he can feel, there isn't anything abnormal post-op to be worrying about. That in itself felt like the weight of the world had been lifted off my shoulders. If someone had told me that three weeks ago I wouldn't be so worried!

But he did say that he thinks there might be something else going on (didn't I tell you?!) and that I might have to change my medicine. Cocktail of meds, take 5.

Had my bloods and did a urine sample. Joked I might be pregnant - I'm not. Although at least if I was it would be a funny story to tell! And so off I went home...

Then this morning I was in a race with what seemed like everyone else in South West London, to get an appointment at my GP. I got one, so it was fine. But within 7 minutes from opening, all appointments for the day had been booked up. Madness!!

And I got called today from the hospital (shocking, I know) confirming my appointment for tomorrow at 12pm. Although I am paying a visit to P.A.L.S tomorrow, too...Patient Advice and Liason Services...as I have some complaining to do. Will let you know how that pans out!

But yes, went to see my GP earlier and the angel that she is, gave me a prescription for oral morphine. OH YEAH, MORPHINE YEAH.

She also mentioned that it is worth looking into Coeliac disease - and this isn't the first time it has been mentioned to me. So I guess it's another thing to add to my list to discuss with the doctors when I see them tomorrow and April 15th.

Just call me Multio Diseaseo haha.

(Quite concerned I've just got this photo hanging around on my iPad ha. But it's apt, so...)
((Check out the bags under my eyes HA-ha-horrendous))

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Tongue Biting

I have a love/hate relationship with Tramadol.

I love it because it takes away the pain. I hate it because the side effects are getting out of hand.

I was off work again today as my bloat, pain, poos and exhaustion were all still hanging around (shock) so I decided today needed to be a bed day.

Also helpful being in bed as Tramadol makes me ever so sleepy...but as I said yesterday, I seem to be biting my own tongue in my sleep. And my god, today I clamped down so hard I made it bleed :(

Sorry for the ridiculously unattractive face-pulling, but as you can see, this is not ideal.

When I go to the hospital on Wednesday I'm going to see if I can get a painkiller that is as strong as the Tramadol, but doesn't make me bite myself haha.

So bizarre.

http://www.ehealthme.com/ds/tramadol/tongue+biting

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