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.

X

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.

X

Breast Foot Forward

As I sat in bed this morning, night light on, feeding my son, I took a moment to enjoy and appreciate the close bond that breastfeeding has given me and my little boy over the last three months.

I always said that I wanted to be able to breastfeed exclusively for the first two weeks of my child's life - which I did - and that if I could, I'd like to get to six months; even if that was through combination feeding. But tried to maintain a 'what will be, will be' type-vibe (so many opinions and pressures for feeding a baby, as I'm sure you're aware. Is my baby being fed? Yes. Great. As you were then). I've been combination feeding for a good while now and I wouldn't change the routine we've fallen into, by any means. However I always thought that when I chose to stop breastfeeding it would be just that: my choice.

Mother Pukka X Parent Apparel jumper with all my parenting feels

Good ol' Crohn's and the rules that go with the scans and sedation that I need means that my breastfeeding days might be numbered. If ever there was a sign that we go full bottle, it's being told that for 48hrs after my MRI and at least 48hrs after the sedation, I cannot breastfeed. Granted I could express to keep my supplies up and running, but it works out at almost a week long with the appointments being so close together. So maybe I take stock and prepare for the changeover.

I'm just finding it all a tad tricky, you see...everything a double-edged sword. As much as I love the morning feed when it's all quiet and just bab and I, both half asleep, it's probably for the best that any energy I do have, I keep for myself so I can be a relatively functioning human being and be there to provide whatever my son needs.

*Haven't actually done this, FYI*

I'm also incredibly nervous about the forthcoming investigations; the MRI I thought had been parked for the colonoscopy, is in fact going ahead as they called me yesterday. So I had my pre-assessment yesterday and my bloods done (gosh, so tired), I have my scan next week and the colonoscopy the week after. BUT WHAT ARE THEY GOING TO FIND?! I know I'm not well. For God's sake it hurts to have the little man even lean on my tummy. Standing is also generally becoming a bit uncomfortable; it's easier to walk hunched over like Quasimodo, but it's also not a look I recommend when trying to push your pram.

We'll see though. I've done this before. I've definitely been through worse with my Crohn's. Got to keep the long game in mind; experiencing the changes in my son each day and that come Autumn, I'd like to be able to walk down the aisle without looking like I'm from the Hunchback of Notre-Dame.

X

Penultimate Week

And everything is slowly winding down/building up (depending on how you look at it) to the day our baby arrives.

Week 37's #bumpingalong was an odd one as I realised it was the penultimate photo in the little series I started out of curiosity way back at Week 14. This week's outfit was a monochromatic affair in maternity leggings from ASOS with non-maternity jumper from New Look in a size 12 and the required winter accessories for these dark evenings.

Jazzy hat in London town

Also had my final night out out as a preg for a 30th birthday; wore a non-maternity dress from Topshop in a size 10 but it's ever so stretchy and kind. Although when getting ready had the whole meltdown of NOTHING FITS ME ANYMORE. WHEN IS THIS BABY GOING TO BE OUT OF ME. I CAN'T SEE MY FEET. HOLD ME. CAN YOU DO UP MY SHOE. But I had a lovely time and it was ever so bizarre being asked about how far gone I was only to reply with "oh, we'll have our baby in two weeks". So surreal - especially now we're a handful of days away. Where is the time going?!

Multiple me to hide the kitchen

I think I'm going to compile all the #bumpingalong photos together to see how my body has changed during this pregnancy; the nearer we get to meeting the small human, the more I've realised how much I'm going to miss my bump when it's gone. Like I've said before, I feel considerably lucky to have enjoyed my pregnancy as much as I have, as it is honestly one of the best experiences of my life. To essentially put my Crohn's into remission alone is something I never thought would happen - but to have gone on and been able to make the most of all that pregnancy brings has just been magical (heartburn aside). Makes me all sorts of emotional thinking about it (NB: pregnancy, not heartburn).

Talking of being totes emosh, I have given up with how wild my hormones have become in this last week. I will be the first to say I've been a nightmare. Not because I've been hard work and mean - but because I have been doing the type of crying when you get saggy shoulders and you just sit there like a sad sack, sobbing on the edge of the bed. But no, don't worry, I don't need anything. Just having a good cry *cue a concerned other half whilst the mascara drips down my face and onto the top of my bump leaving a dramatic watery black line*

And talking about my bump...

This is my bump at 37+4 and I look like a dinosaur egg. I'm still not very wide which is why I have moments when I think how have I got a 50cm and 3kg person in here?! But when I see myself at this angle I can definitely see where my baby is. Weighed myself this morning and I've put on a total of 18kg on since the end of February and it amazes me that just under a third of that will most likely be lost in a day. It must be the weirdest feeling walking around afterwards - the weight gain is so slow to then suddenly oh so much lighter. Floating almost.

Nesting is all but complete - with a variety of meals batch cooked and in the freezer for when we lose the ability to function and feed ourselves. If you want to know cooking things, I have listed these with the recipe inspirations on another post which you can get to here.

The last thing I want to do re nesting before the miniature one comes is another whizz around the house with the duster and the hoover in hand. And buy an outside bin. Otherwise I am more than content with my maternal preparations - with regards to the house anyway. Will post during the week about my emotional maternal prep for the impending events, as that's a whole other ball game.

And now to enjoy what is left of our last weekend as a two before we're a family of three...

Absolutely fine with having a child this coming week

X

Planning a Planned Arrival

Can't quite believe we're so close now! We had our 34 week appointment today with the c-section doctors, which naturally got me thinking about how you plan for a planned arrival...

I'm very much in the stage of pregnancy where I am completely freaking out, my dreams are stupidly vivid, I can't sleep for baby movement and all I can do is worry about what lies ahead. Will I be a good mum? Will baby be ok? What actually happens in a caesarean? I've read a lot recently that confirms that all of the above is normal and of course it's good to share my thoughts because it's not unusual to worry. It's a huge thing, after all! We've made a human being. I'm just going to have to wait and see, as I can't get myself all worked up over the unknown (a mantra I lived by with my Crohn's).

But my appointment today made me a tad nervous; it's the same as with my Crohn's ops in that you essentially consent to everything and wait and see what we find when they open you up.

We had confirmation today that due to previous abdo operations, my Gastro team will be in the theatre with the c-section team, myself and my other half. Hopefully when they make the incision, my bowel and scar tissue haven't caused too much of a problem in which case the Gastro team can bid farewell and then we can get baby out in a routine way. If however it obstructs what needs doing to access baby, they'll do their bit and then let the obstetricians take over. A little revolving door of surgeons around my nethers, if you will.

Like with any surgery there are risks; although there's been talk of a stoma and colostomy beforehand when I had my resection back in 2013, I didn't realise that it could be something that pops up in regards to when I deliver my baby. I guess in my mind I kept my bum issues separate from my front bum bits. There are of course risks associated with a routine c-section too, with everything from wound infection and bleeding to a hysterectomy. So yes, I'm a little worried. But as I used to say with my Crohn's ops, I was just another bottom to them - and this is just another caesarean. We have planned as much as we can and all we can do is hope that everything runs smoothly! In 30 days time.

Now I'm officially on maternity leave (post following shortly) I am just going to put all my energy into nesting and try not to let my worries get the better of me. And I'm also going to avoid reading some of the shite on the internet about how a c-section is the "easy way out" and that I'm "not giving birth" as I've had my baby "surgically removed".

I'll have to get back to you on that.

X

Returning of the Sandwiches

You may recall my comparison of a ham sandwich in a service station and that of buying maternity clothes, a few posts back. And then how I said I'd do a separate post on the asos haul because, FASHION.

Well essentially this is it - but it's more along the lines of how clothes online don't always look like that in real life. Duh. So I am returning aforementioned ham sandwiches - not all of them mind, the snakeskin booties and polonecks made the cut, as did a white shirt.

That is me in the white shirt.

It's maternity and quite sack-like but it's very comfortable. There's something about a classic white shirt that makes you feel a bit back to school, but alas it's probably one of my favourite items in my newly reformed capsule maternity collection.

As I mentioned before, maternity clothes aren't cheap but there is a definite requirement for them. I've decided to refine my approach to the sartorial challenge and wear as many non-maternity items as possible whilst I can. And only buy maternity bits because the non-maternity equivalent just won't do; for instance, jeans or bras. This is also because I'm starting to realise that I need to easily get my booby out when the child has arrived and my money would be better spent on a nursing bra and shawl, compared to another jersey dress that clings onto the bump in all the right places because it says maternity on the label.

The next black hole of mama fashion that's crossed my mind - albeit way too early: maternity wear postpartum.

I am very much 'just bump' so far in my pregnancy, and bearing in mind how much my body weight has changed over the years with all the different meds and generally my Crohn's Disease, I was ready to expand everywhere. I'm also aware that when my baby comes out of my body I expect to look down at my newly scarred tum and see a somewhat deflated balloon (a final visual for the pregnancy wind, perhaps).

Like I've alluded to before, I am in utter awe of the body and what it does during pregnancy and I don't see why that would change once the miniature person is out of me. If anything I think I'll be taken aback even more so. Because they made it out. The human will be out of my body and in my arms. I don't want to feel the societal pressure of snapping back a la every single celeb in the sidebar of shame on Mail Online. Your body changes for 9 months so I'm expecting at least 9 months for it to return to its 'normal'. And if it doesn't, who cares?

On that basis alone, I imagine that me and my maternity jeans and booby-bearing nursing bras will remain pals for a good while after birth. And that is fine.

I've still got a lot to do before then anyway. You know, like stay being pregnant for another 12 weeks and survive this mini heatwave again.

X

Hidden Kicks

22 weeks today and as we're all aware, Mondays are never the best days of the week anyway. And today was certainly no different as I sat in my GP waiting to see the doctor after a lack of sleep for worrying about our baby.

As I mentioned a few weeks back, I've been feeling baby movement for a good while now - established timings and a pattern to keep an eye on. Even being able to see the moving through my clothes. But over the last few days, the movements seemed less often and when they did happen in the usual time slot, they just seemed so faint. I've been beside myself with worry the last day or two and it culminated in me being awake last night willing our baby to do a big movement so I knew all was fine.

You just feel useless. And then you worry that your body isn't working properly and that your baby isn't going to be all right. So when you pass a time frame where usually things would happen and there's nothing...it just made me so anxious. Especially as a first-time mum-to-be as I have absolutely zero experiences to base this all on, so naturally you look for reassurance where you can.

My doctor felt my bump this morning and said it was the right size and felt as it should for my gestation. And the main thing for me was that I also got to hear our baby's heartbeat. I can't describe the relief of knowing that baby was doing ok and things were actually as it should be.

Turns out that looking back over my scan notes, my placenta is positioned anterior high which means it's at the front of my uterus, as opposed to the back; when the placenta is at the front it can sometimes cushion the movement of the baby. So it seems likely that our hyperactive mini human went on a wander and moved to a place where even though they're moving all the time still, they've softened the blow of kicking me hard. They just put us through the mill emotionally instead of physically!

I spoke to my midwives this morning and they let me know that I'd done exactly the right thing in following it up with a medical professional. At the risk of sounding silly, I was all sorts of emotional, worrying and I just wanted to someone to tell me that I was being dramatic and it was fine - again searching for that reassurance.

My other half was so incredibly supportive with all this going on, too. Speaking as the pregnant one in our relationship, I've had to have moments to sit back and realise that he only knows how I'm feeling with baby based on what I share with him. He can't tell the difference in feeling of a flutter and more substantial kick. Let alone if those patterns of feeling have changed? So for him to be able to keep me as calm as possible when really he has no idea either, just makes me appreciate him even more.

What an anecdote to share when they're older: "Ahh, do you remember that time you played hide and seek with my placenta? You rascal, you."

But yes, at least now we know that our little one is actually doing wonderfully. They just made their mummy and daddy temporarily shit themselves.

X

PS: Kicks Count do a band you can use to keep track of periods of movement. Super helpful in these situations, especially if the baby brain has kicked in. And their website is full of such useful info as well.

My Kicks Count wristband on arrival

What's in a Name?

I honestly didn't think choosing a name for the child that I'm carrying would be so bloody hard. Naive, perhaps. But it's really quite the task! Don't underestimate the responsibility in naming another human forever. Pets are hard enough.

Through what must be hundreds of names that the fiancé and I have looked at, girls names seem so much easier to pick. They just seem to have more variety? Whereas the boys name seem quite samey (sorry chaps!) Maybe that's just what it appears to me - but the general consensus from other parents I've spoken with, is that they also found girls names easier to choose.

Are there any hints and tips for choosing a name? As we don't want to find out what we're having, it obviously means we need to have names for both a little boy and a little girl. If there's a little girl growing in me then we're sorted! If it's a boy, then it is currently nameless...But then again maybe it will mean we do actually find out at our 20 week scan in two weeks - because then we know what sort of name we have to choose.

Is there a criteria to follow to help you decide what you name your child? Or is it an epiphany and suddenly you have that moment of 'I hereby name my offspring ...'? If I'm to go by some of the names that have popped up in my (very) vivid dreams, then there's currently a little boy in my womb and I've called him Hector.

X

Bear With.

Hallooo!

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

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

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

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

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

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

*SNEAKY PEAK*

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

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

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

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

So thank you.

X

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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Model Material

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

This sits uneasy with me.

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

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

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

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

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

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

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

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It's a Waiting Game

And what a crappy game it is to play.

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

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

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

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

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

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

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

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Bloody Hell, Part 2

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

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

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

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

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

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

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BLOODY Hell

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

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

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

Erm....?!

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

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

Bloody hell, indeed.

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Namaste

Starting yoga tonight.

Organised through my office - which is an added bonus, as it means I can't miss a class with it being straight after I've finished my working day. Plus it will firmly put exercise back on the map of my life.

Very excited as I'm so ready to get back into exercising properly again! More so now I know internally things are settling down/going in the right direction for once!

I'm also excited as yoga will not only help with the physical side of losing weight, toning up...but also the mental side.

And it seems perfectly timed as I have my first counselling sesh this Thursday.

Namaste indeed.

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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?!

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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!

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Skyscraper

Also, forgot to mention a few things that came up whilst talking to my GP; mini epiphanies (in the middle of a breakdown), if you will.

I didn't quite realise that one of my main issues with the whole Crohn's thing is that I seem to be a micro-manager, for almost every part of my life. And as I'm sure you all know by now, one of the main selling points of Crohn's is its unpredictability.

Because there is no cure - at the moment - Crohn's will be underlying problem in everything I do. And despite my best efforts at not letting it get me down, I'm yet to experience life for a decent amount of time where it isn't my main concern. So that in turn, makes it hard to imagine life different to how it is now.

I also came to the conclusion (sensible or otherwise) that I think I am always going to struggle with accepting myself fully as a Crohnie. Until I am able to accept myself for who I am now, not who I was.

There really is nothing I want more than to get back on my boat of positivity and get out of this skewed dip. But nonetheless, it was interesting to hear myself talk about the above because I didn't really know they were such an issue.

Mind boggling. In every sense.

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PS: Stumbled across this song whilst watching last weekend's X Factor (sad I know). Pretend it's not about a boy and a relationship, but more a person and their depression. It's a great one to sing out!

Skyscraper

Human Jenga

I went to the GP on Monday.

One of the things she said to me really hit home, as I'd never thought about depression in that way, as there's not always a particular trigger for the dips...

I was in the middle of playing human Jenga. Hypothetically, with pieces being removed for various reasons I stayed standing - and although things seemed all right, I wasn't as balanced as I thought I was and it toppled.

So I've been referred back to CBT counselling - but this time she's requested individual as opposed to group, as the group one wasn't such a benefit for me. The people in my group were having issues with things they could change. But this was my problem. I was in there because I couldn't cope with things that I had no control over, couldn't change.

Now I wait for the counselling chaps to call me, quiz me on how I feel about everything and anything, and then wait for a letter with my level of depression. Ooh such fun.

Naturally I'm worried about how this is going to effect work and my relationships; all of them. Not just the need to leave to talk about my life to a stranger. But the days when I'm feeling low. The days when I don't even want to get out of bed, let alone leave the house.

All I can do now though is know that I'm doing everything I can to go back to 'normal'. Whatever that is.

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