Walk It 2021

I have full imposter syndrome about doing sports, but here we are. It's June. The month I committed to doing a half marathon's distance for Crohn's and Colitis UK. 

As I touched upon in my last post, 2020 was a tough year for everyone what with Covid19 and the uncertainty that brought in these unprecedented times. Yet from a personal, Crohn's point of view, it was my toughest year to date. Throw in a global pandemic and WHAT A RIDE. Honestly? When I had my flare up in March, I thought I was going to die and my body had had enough. I've never felt so vulnerable. When it happened again in September I just didn't know what was going on in my insides and what the plan was - if there even was one.

Yes, ok I've had all the operations and procedures when I've flared beforehand and generally I've been fine (?) with that. But I have never vomited *actual* shit before; and all at a time when I wasn't even sure if my husband was allowed in hospital with me when I needed him the most. 

But hey, now it's quite the anecdote and conversation starter at least.

That week in March 2020 was a whirlwind...we had our boys' christenings and the next day at 2am I was blue lighted into hospital with the whole shit shenanigans. At one point prior to ringing 999, I was breastfeeding my baby whilst being sick in a bowl. The rest is a bit of a blur - but to summarise, once in hospital and all the pain relief, I had a CT scan and the strongest IV antibiotic steroids to try and calm down the inflammation in my small intestine, as it was essentially causing a faux blockage. Persevered with a week of meds and the bloods and tests showed things had calmed so off I went home.

Fast forward to September and I was optimistically getting my hair coloured - even though I felt beyond rough (lockdown locks had gone wild, plus I thought the pamper might make me feel better). However, I ended up being sick in her bin in between rinsing the colour off and knew things weren't going to be ok. I rang the other half and said to get his mum round to watch the kids as this was looking to be another 999 situ. Even though my hairdresser was incredible in that situation, I could imagine that the professional part of her must have been like 'Jesus Christ, that bleach needs toner. It's so brassy.'  We simply paused on the 'do and I promised I'd be back to finish it off soon. LITTLE DID I KNOW. 

***

It seems strange writing about September in such a pragmatic way, as I look back at the Instagram posts from that time and I just wasn't ok?? Like I said, I've had like nearly 20 operations but this one hit different: that the inflammation from March never really went away and was now an actual blockage. The urgency of an op, the seriousness of it. The fact that it's not just me; it's my husband and two boys that are relying on me to pull through this flare. 

Because of covid, there were the obvious and expected delays with things which inevitably allows thinking time. When you're on your own in a hospital bed, the mind can really run wild. But I got my op; resection in the small and large intestine, with an incision down my stomach and a new belly button for good measure. The optimism was creeping back in, and now it was all focus on the recovery. That was until I got a temperature, got incredibly distended and couldn't pass wind for days. They say after that type of surgery that your bowels forget what their job is, so to try walking around and what not, trying to encourage bowel movement. Never have I willed on a fart as much as I did during this time. Any sort of humility and decorum had long gone.

The fart never came.

Instead, I got another NG tube and was having litres of dark green fluid syringed out of my stomach. I had another CT scan because they thought I had a leak from where the new bits of intestines were joined together. Fortunately I did not have a leak - I guess things were just going to take their time and test me physically and mentally as we went on. But yeah sure. Was in hospital for a little while and then once I'd done the enigmatic poo we'd all been waiting for, it was time to head home again and start the next stage of recovery.

Recovery took longer than I'd thought and hoped it would, but I also knew I couldn't push myself too much. To go slow, rest, look after myself. And after six weeks or so I was miles off the state I was in before my operation and I felt able to look forward to the good bits.

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Side note - Probably worth mentioning here that a kidney consultant rang in Autumn last year to discuss the CT scans I'd had when an inpatient in March. Turns out I have a couple of kidney stones knocking around. After many a phone appointment and consultations in hospital since, I'm now actually waiting on another operation in the next few weeks. 

I want to do my walk before I'm back in another post-op recovery period. If you'd like to help my fundraising, the link is below...

Harriet's Walking - Walk It 2021

Thank you in advance, you wonderful people.

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Second Fitting

I say second; it was the second occasion and only one seizure, as opposed to the first instance of multiple seizures with what seemed like no end in sight.

It was our son’s outpatient appointment on Friday following up from everything that went on 6 weeks ago. Off we sent him to nursery, as per, on the basis we’d be picking him up at lunchtime to take him to the hospital. He’d been a bit snotty that morning so we gave him some Calpol – as you do – but didn’t think too much of it because he was fine? I got a call an hour later from the nursery to say that they’d taken his temperature and it was up past 39 now (considering he’d had medicine less than an hour prior, this didn’t sit too well). My husband went to collect him and I said how I’d meet them at the hospital as planned, later on that afternoon.

But then I got another call from the nursery, from my husband’s mobile. Not to panic, but he’s with our little boy and the ambulance is on its way as he’s having a seizure. My heart sank. I cried a bit.

I left work and drove straight to the nursery to find my two boys in the back of the ambulance, critical care on its way and prepping to do blue lights into town to the hospital. From what I could gather, there was only one seizure this time… but it lasted twenty minutes. So, it’s still atypical. We still don’t know why it’s happening. The only constant we have so far between these two occasions, is that his temperature had spiked. Except this time there were no obvious leads into the fitting, as in he wasn’t visibly ill on Thursday. Whereas last time he’d been a bit clingy and feeling sorry for himself that week and you could have said he was under the weather, somewhat. But off we went with the sirens to A&E at the children's hospital.

However this time I felt a strange sense of calm. He’d only had one fit. He’d stopped on his own. He didn’t need additional intervention for anything. Just some oxygen, I mean sure, his little bod was stressed. But he was talking, and he wanted to eat and he wanted to drink. As long as there were no more fits, we were just going to be observed by the doctors: the usual obs plus prepping his arms with ‘magic cream’ in case we needed bloods and (somehow?!) we needed to get a urine sample off of a toddler who is still learning how to wee in a toilet. Help.

Long story short, his obs were fine and remained stable the whole time we were there. The only bit of drama was when we tried to do his urine sample; he ended up doing a weewee all over his Daddy’s leg like a scene out of Dumb & Dumber. Little bit of a dribble to start with which we knew wouldn’t be enough for them to test. But then the wee just kept coming! The pot was filling up and then the power of the weeing meant it was now going in and essentially straight back out onto my other half. Oh how we laughed. The delirium/relief/tiredness from the morning’s events had kicked in. And there we were, in A&E, sick and injured children around us. And we were laughing. One of us covered in piss and the other one holding said piss, in a pot. And our boy, naked from the waist down looking at us like we’re mental. But the wee was fine. He was fine. We were allowed to go home.

So until he fits without a temperature, we’re assuming febrile convulsions, as before. If he fits otherwise then we most likely have an underlying issue that needs to be found. We’re due an EEG in the coming weeks to check his little head and then the rearranged outpatient appointment to follow.

It’s obviously just going to be one of those things and we simply have to hope that each time it happens, the seizures are few and far between and that we’ll get to the bottom of it sooner rather than later. Because it just makes you realise how fragile your little person is. But equally, how tough they are too.

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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.

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

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

Ass Issues

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

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

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

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

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

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

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

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

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

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

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Return of the Ass Invasion

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

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

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

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

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Thirties

We are 30 weeks pregnant. THIRTY. That only leaves 8 weeks until we're booked in. Whatever happens in the coming weeks we will definitely have a baby in 59 days.

Had a bit of a tricky weekend and subsequent morning today, mind. Heartburn still causing me grief - so much so I vomited on myself in the shower from burping. Nice. My Braxton Hicks are certainly getting stronger and making it much harder to stand up straight when they're present. All part and parcel of entering the 8 months preg club I guess!

However what I wasn't expecting this early was to lose a little bit of my plug.

There's no way to discuss it without being gross, so if preg detailed talk is too much, scroll down to the safe zone my friend...

Naturally, reading up on your mucus plug isn't the most pleasant of topics but something that needed to be done when you see what can only be described as a blob of clearish snot where it shouldn't be. A quick phone call with my midwives confirmed that as there was no pink in colour or blood, labour isn't imminent (can be anything from a few hours or few weeks if the full plug, or 'show', has happened). But that it does sound like some has come out and to keep an eye on things down there, rest up, etc.

Now I'm contending with pressure in my nethers, knowing baby is head down and that I'm without some of my plug. Please don't try and leave just yet oh miniature one! I haven't even packed your hospital bag!

*SAFE ZONE*

Needless to say there will be a delayed #bumpingalong picture as I am not wearing anything that's publicly acceptable; pants, t-shirt. A for-my-eyes-only vibe. I did manage to shave my legs all on my own though - except now they look like sausage meat.

So quick catch up on our first antenatal class last week for you: it was all about Intervention & Caesareans, the latter being the main bit for us. Hearing about being induced and seeing some of the tools used made my tummy go all funny. Yet strangely, talking frankly about the proceedings in a c-section didn't really phase me. I guess it's because I've had 14 ops with my Crohn's so a surgical set up is almost more favourable for me than a natural one!? Surgical is my natural set up.

Tonight's class is all about boobies. Well, officially Feeding Baby. But breastfeeding and bottle feeding, I believe. I've tried to get a bit of a head start and started reading 'Breastfeeding Made Easy' by Geraldine Miskin as I'd love to be able to breastfeed my human that I'm growing. I am aware however that it's not something all mums are able to do, whether by choice or otherwise, so I don't want to put pressure on myself if it turns out that my boobies can't do the feeding.

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Getting Low

This baby is down, but certainly not out - yet.

And I obviously am referring to baby's position in my uterus, rather than their emotional state.

Saw the midwife on Wednesday and I explained exactly how I was feeling with regards to the pressurised nethers. We had a listen of baby and their little heart was pumping away nice and regular; always a relieving feeling. But my bab also took the midwife by surprise with the force in which they kicked...we have a strong one inside! My midwife said how typically you get the ripples and what not at this stage, but always good to see such strong movement from the baby. Well done to our human.

She then did the usual process of feeling where baby is positioned and straight away said that she could understand why I am so uncomfortable. It appears that baby is definitely head down and very low - usually found around the mid-thirty weeks [that matched up to all the bits I read online in forums, etc.] However for me not to worry as baby can stay there for a good while and they've not yet twisted around to be engaged. Naturally though, I would quite like the miniature one to stay in there as long as possible please! But the other half and I also understand that baby is going to come, when baby is going to come and there's not much we can do about it! In the meantime we've been told to keep a closer eye on my Braxton Hicks as they've been causing me quite a bit of pain and discomfort - but irregularly, which is the way we want it to stay for now. If in doubt then we call the midwives and talk through what's going on and take it from there...

For baby's arrival, the man and I have been doing a countdown to week 38 as that's when we're booked in for our c-section, but there were suggestions of working back from week 37 instead as medically this is when they consider a baby full term; anywhere between 37 and 42 weeks is good. So say for instance our little one makes an early appearance at 34 weeks, technically they're only going to be 3 weeks early (from what's considered a full term baby) as opposed to 6 weeks early (with the 40 week total). Does that make sense? I believe baby just gets extra layers of fat after 37 weeks that aren't essential to life - they're all readymade by then.

In other news, H&M aren't helping the situation when it comes to tiny clothes. So it appears I accidentally bought some more for our tiny person.

BUT WILL YOU JUST LOOK AT THE HAT.

Had my rhesus injection this afternoon which was just a big ball of crap feeling in my arm. Will only have to have this again if baby is of a positive blood type and our bloods cross at birth. To be honest, a crappy injection will be the least of my concerns when I'm there all c-sectioned! (Is c-sectioned a verb? Strong phrase all the same). Such a predicament though with my Anti-D injection; I'm right handed but I also sleep on my left. What arm to sacrifice for the day?! I opted to give up my right arm as I have every intention of getting horizontal to nap asap. Complete preparation for our first weekend of nothing.

No official plans and I can't ruddy wait. Ahh to just lay down in soft clothes with my bump guardian...bliss.

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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.

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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

Journey to Bump

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

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

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

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

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

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

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

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

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

Unless the little human makes an early arrival.

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World IBD Day

Today is the 19th May and that means one thing...it's World IBD Day!!

This year Crohn's & Colitis UK have made it their mission to highlight the importance of Specialist IBD Nurses, as they make such a great difference to patients' lives.

I remember when I met my first IBD Nurse back in 2009 at Chelsea and Westminster. Her name was Stephanie and she was the support I needed at a time when it seemed like my whole world was about to change. She spoke to me like a person - not just a hospital number - and understood that there was an emotional side to my diagnosis and that it was important to know she was there if and when I needed her. Her role for me at the time included everything from a long conversation at my appointments, ending them with that reassuring squeeze; right up to sending her a text message when I wasn't sure if I was A&E worthy with one of my many abscesses.

I'm now in a fortunate position again where at my current hospital there are a team of Specialist IBD Nurses, with a dedicated phone number should I have any queries about my care or condition. But I know I'm one of the lucky ones to have these amazing people at my disposal. There are countless IBD patients who are yet to experience how beneficial Specialist IBD Nurses can be.

According to the Crohn's & Colitis UK website, across the UK there are at least 100,000 people with IBD that don't have access to a Specialist IBD Nurse. With 63% of IBD services in the UK unable to meet the needs of everyone affected.

"[Specialist IBD Nurses] are a lifeline, providing vital information and support in the most appropriate way for each patient. The care they deliver is invaluable and they help hundreds and thousands of people cope with this devastating disease. We need to shout loudly the importance of Specialist IBD Nurses to ensure more patients have access to them."

Their campaign 'More IBD Nurses - Better Care' still needs a few signatures to reach their goal of 1000 people. Please take a look and if it matters to you, please sign!

There are around 300,000 of us in the UK, and millions more around the world living with IBD: we need to use #worldIBDday to continue to spread awareness and make a difference where we can.

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Across the UK, at least 100,000 people with Crohn’s and Colitis don't have access to a Specialist IBD Nurse and 63% of IBD services in the UK don't have enough Specialist Nurses to meet the needs of everyone affected. - See more at: https://www.crohnsandcolitis.org.uk/get-involved/world-ibd-day#sthash.VPtKm7VK.dpuf

That’s why we’re asking you to go purple on World IBD Day, Thursday 19 May, to help raise awareness of the 300,000 people in the UK, as well as millions more around the world, who are living with Inflammatory Bowel Disease (IBD).
This year we also want to tell everyone about the importance of Specialist IBD Nurses who make such a big difference to patients’ lives.
Across the UK, at least 100,000 people with Crohn’s and Colitis don't have access to a Specialist IBD Nurse and 63% of IBD services in the UK don't have enough Specialist Nurses to meet the needs of everyone affected.
They are a lifeline, providing vital information and support in the most appropriate way for each patient. The care they deliver is invaluable and they help hundreds of thousands of people cope with this devastating disease. We need to shout loudly about the importance of Specialist IBD Nurses to ensure that more patients have access to them.
By joining our 'More IBD Nurses - Better Care campaign, you'll be lending your voice to call for better access to Specialist IBD Nurses, meaning better care across the UK.
- See more at: https://www.crohnsandcolitis.org.uk/get-involved/world-ibd-day#sthash.VPtKm7VK.dpuf

That’s why we’re asking you to go purple on World IBD Day, Thursday 19 May, to help raise awareness of the 300,000 people in the UK, as well as millions more around the world, who are living with Inflammatory Bowel Disease (IBD).
This year we also want to tell everyone about the importance of Specialist IBD Nurses who make such a big difference to patients’ lives.
Across the UK, at least 100,000 people with Crohn’s and Colitis don't have access to a Specialist IBD Nurse and 63% of IBD services in the UK don't have enough Specialist Nurses to meet the needs of everyone affected.
They are a lifeline, providing vital information and support in the most appropriate way for each patient. The care they deliver is invaluable and they help hundreds of thousands of people cope with this devastating disease. We need to shout loudly about the importance of Specialist IBD Nurses to ensure that more patients have access to them.
By joining our 'More IBD Nurses - Better Care campaign, you'll be lending your voice to call for better access to Specialist IBD Nurses, meaning better care across the UK.
- See more at: https://www.crohnsandcolitis.org.uk/get-involved/world-ibd-day#sthash.VPtKm7VK.dpuf

That’s why we’re asking you to go purple on World IBD Day, Thursday 19 May, to help raise awareness of the 300,000 people in the UK, as well as millions more around the world, who are living with Inflammatory Bowel Disease (IBD).
This year we also want to tell everyone about the importance of Specialist IBD Nurses who make such a big difference to patients’ lives.
Across the UK, at least 100,000 people with Crohn’s and Colitis don't have access to a Specialist IBD Nurse and 63% of IBD services in the UK don't have enough Specialist Nurses to meet the needs of everyone affected.
They are a lifeline, providing vital information and support in the most appropriate way for each patient. The care they deliver is invaluable and they help hundreds of thousands of people cope with this devastating disease. We need to shout loudly about the importance of Specialist IBD Nurses to ensure that more patients have access to them.
By joining our 'More IBD Nurses - Better Care campaign, you'll be lending your voice to call for better access to Specialist IBD Nurses, meaning better care across the UK.
- See more at: https://www.crohnsandcolitis.org.uk/get-involved/world-ibd-day#sthash.VPtKm7VK.dpuf

And so it begins...

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

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

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

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

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

And what was in this morning's Metro:

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

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

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

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

COME ON BOYS!!!!

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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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Sigmoidoscopy What?!

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

Nope, I'd never heard of it either.

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

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

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

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

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

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

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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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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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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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In the media, darling.

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

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

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

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

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

#PooTaboo

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

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

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

Sorry back on track.

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

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

Take for instance last Friday:

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

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

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

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

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

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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

It's been a while!

Hello one and all. And massive apologies for being slack with blogging!

As you know from my last post, a lot happened in a VERY short space of time *wipes sweat off forehead* but now things have quietened down a tad, which gives me an opportunity to update you all on what's gone on :)

So, I lost my job. But now I have a new job! Had my first interview for it last Wednesday, with the second interview this Monday. And by Monday afternoon I got told they were hiring me!! Super quick and wonderful.

The good thing is I don't start until 27th August, which means I can go on my two holidays and get all the new hospital stuff done before I start. Generally just chill...out...

I was initially worried about getting employed - in any job - due to having Crohn's and everything that it brings. But I brought it up in my first interview as I didn't want to potentially get through to the next stage, and that then be a reason for them not to hire me (I know they can't use that as a reason, but it's a worry all the same!)

But it's fine as I am an employed citizen once more!

And now for a Crohn's update: today I was hanging out in a toilet (not in a George Michael way)...

...as I had my first MRI in the new hospital. THREE MRI UNITS they had. Three! Swanky.

Naturally I only needed the one machine. And as you probably know, before you get scanned for a small bowel study you have to drink from the bottle of death. (NB; not an actual bottle of death)

Welcome the constant poos.

Tomorrow I begin my colonoscopy prep ready for Tuesday. Been a while since I've had one of those, but I feel that if they're in there, they can see everything. And hopefully I'll get some answers re the ol' flamongey bloat.

So to end this post, please read the next part in the tune of Craig David "7 Days"

Have some laxatives on Monday, camera up the bum on Tuesday, resting in my house on Wednesday. And on Thursday, Friday and Saturday I am festivalling.

Nervous about pooing excessively at Boardmasters festival. But we shall cross that shitty bridge when we come to it!

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