Half Marathon Plodder

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

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

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

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

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

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

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

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

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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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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.

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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Headspace

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

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

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

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

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

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

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

And know that the rest will sort itself out.

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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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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.

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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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Flammable Insides

Heartburn in the later stages of pregnancy is quite possibly the worst feeling I have ever experienced in my life. Slightly dramatic, perhaps. But the level of discomfort is something else?! It's not even just around when I eat; 'tis all day, errrr day. Acid, ooph, ouch, burp, oh bit of food's come up, lovely, ahh the burn, nausea, burp, rub chest in annoyance. Repeat to fade.

I had tried the 'Princess and the Pea' approach of all the pillows in bed but that's just impractical and annoying. So popped to the GP and have been given some Omeprazole to take and this can also be boosted with Gaviscon as and when, if required. I feel a tad like my Nana - she's always got the Gaviscon to hand.
It's funny how heartburn is also something that mums have said they really don't miss now they're no longer preg. For someone that has never had heartburn before, I believe I too will look forward to the day when I don't feel like there is FIRE TRAVELLING UP MY OESOPHAGUS AND INTO MY MOUTH.

Onto more exciting news though...we're 29 weeks today and have our first antenatal class tonight! This session is all on Intervention and Caesareans. Got to have my game face on and I imagine this will obviously be key to what lies ahead for us. Intrigued to see what the other parents-to-be will be like too. Young, old, first baby, etc. New parenting friends.

There's also another mini heatwave this week. Joy. Please note the high level of sarcasm. All I want to do now is wrap myself up in a woolen poncho, sit indoors and let my preg body spread. I don't want highs of 30 degrees thank you when I'm having to commute. Not now...it's mid September. When is Autumn happening?! Naturally this means that I'm still (begrudgingly) dragging out the Summer items and today's #bumpingalong is a non-maternity H&M jersey dress in a Small.

A nautical buoy

I feel like my bump has really changed shape over the last week. It's become more round? I haven't been very pregnant on my sides - my profile has always been very OUT and from the back I still don't look too preg. But the bump has suddenly become very much like a big ol' massive ball. And can anyone see my ass? It's grown enough to find it's way out of my knickers and cause me consistent wedgies, but side on it appears to be M.I.A.

I also feel like my torso isn't long enough at all to house this baby though. Everything is starting to feel very squashed internally; all up in my ribs and right down into my vagine. How the baby is going to find room to keep growing I just don't know! Someone is going to have to start rolling me to wherever I need to be as my metamorphosis into a human weeble continues.

(Officially) 9 weeks to go.

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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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Baby Showering

I was treated by all my nearest and dearest gals to a bloody lovely Baby Shower this weekend. Such a wonderful day. And of course as soon as I walked in and sat down I had a cry because, hormones. But in the loveliest way, naturally.

Few snapshots of vintage tea party fun:

We're also (somehow) at 28 weeks today and I seem to have embodied all of the stereotypical third trimester feelings in the last week: taking forever to roll over and get comfortable, only to realise I was more comfortable where I was. My desire to wear trousers is ever decreasing. Not being able to get up without moaning. And of course the approach of can't reach it, don't need it. 

Which brings me nicely to my #bumpingalong for today. Disclaimer in that I'm very tired and generally moving is annoying me. I also have a baby who is full of the hiccups. So today you've got me in what is considered perhaps an impractical/unprofessional, yet comfortable fleeting moment at my desk.

NB: This is not how I sit all day. Oh but if only I could.

Clothes are all non-maternity as fortunately I bought clothes many moons ago that were apparently built for a pregnant woman's figure anyway! So loose jumpsuit/pinafore item (?!) is from asos and is a size 12, paired with a size L H&M jersey stretchy top. Choker and red lippy optional - I just felt a bit French when getting ready this morning. I also need a hair wash, but you can't have it all.

With regards to the miniature human's nursery we're pretty much there now! We've got a few major items still to get, like the pram and car seat, but we're more than happy to wait a while to get those. The nursery has taken shape in the way that we hoped it would and now all that's really missing is our little person. Everything they need is just SO small. My heart explodes every time I go in the room because it makes me realise how real everything is now and how everything is going to change. But again, in the loveliest - albeit challenging - of ways.

Almost there!

From a building point of view things have slowed down now, but from an admin and midwife point of view it seems to only be just beginning! I have the midwife twice this week as I am O negative blood type which means I am part of 15% of women that are rhesus negative. Because of this it means I have to have an Anti-D injection at 28 weeks and maybe again at the birth if the blood of myself and baby were to cross. It's not so much a worry with this pregnancy, it may just mean that some extra care is needed to avoid any problems if I was to get pregnant again.

Essentially, if my baby is rhesus positive and their blood gets into my bloodstream, my immune system can develop antibodies against the rhesus antigens. If I was to be pregnant with another rhesus positive baby next time round, my antibodies can attack that baby's red blood cells which could potentially result in haemolytic disease of the newborn. This leads to anaemia and jaundice in the baby. [More info] So injection visit is the plan for this week!

Now all I really want to do is have a bath and a lie down whilst this active baby carries on dancing.

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Hips Don't Lie

But Christ on a bike can they hurt!?

I saw on MadeForMums an article about waddling when pregnant; whether it's a scientifically proven thing or you know, you waddle because you kind of think you're supposed to and what not. (Spoiler alert: it's a fact) But I am really coming into my element to take the lead role in March of the Penguins.

Me, just waiting for my gals.

It's to do with your centre of gravity shifting and it can happen from as early as the end of your first trimester. Makes sense when your body shape starts to noticeably change from then - it really does make you do all the waddling though!

I'm sleeping much better - probably due to the fact I'm currently anaemic - but also because I have my pregnancy pillow, so I am more comfortable. Thing is, despite this I'm waking up and not being able to walk very well... the only relief is holding my own hips and doing a Mick Jagger-esque strut as I loosen up. I just need the inflated lips and I'm basically him. Albeit musical talent aside.

Are there any good tips for easing the hip pain though? Or is this another one of those things that's part and parcel of my ever-changing pregnant body, so deal with it vibe? *waddles ever so slowly to a soft chair*

Another bodily change that's so on the cusp it's kind of terrifying is my new look Jabba the Hutt belly button! I have scars in and around there from previous abdo surgeries, so it's getting pushed out in all directions at the moment. We currently have the top half almost out/bit bumpy and the bottom half is sort of flush. My belly button beforehand was like a crater so it's most odd seeing it as it is now, with its nod to Jabba. Regular updates to follow (or perhaps not...for everyone's sake).

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Nil by Mouth

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

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

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

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

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

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

Enjoy the sunshine!

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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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Crazy Week

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

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

BUPA London 10k Time

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

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

Thanks again for all your support!!

Birthday Fun!

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

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

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

And so to this week...

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

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

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

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

Onwards and upwards IBDers!!

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TWO WEEKS!

Two weeks yesterday until my 10k run.

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

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

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

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

OR

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

OR

Click the widget on the left hand side of my blog

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

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

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

Every cloud and all that!!

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Achy Bones

I have achy bones. Oh so achy.

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

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

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

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

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

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

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

Ta!

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Hmmm...

Well today was unusual, to say the least.

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

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

*Skip past usual prep admin*

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

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

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

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

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

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

But there is good news!

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

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

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

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

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

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Sitting, Waiting, Wishing

Oh lordy.

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

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

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

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

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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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