Half Marathon Plodder

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

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

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

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

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

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

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

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

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All the Things

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

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

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

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

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

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My JustGiving page 

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. 

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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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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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Breast Foot Forward

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

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

Mother Pukka X Parent Apparel jumper with all my parenting feels

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

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

*Haven't actually done this, FYI*

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

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

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Return of the Ass Invasion

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

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

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

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

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I'm Pooped

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

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

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

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

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

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

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

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

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

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

Pregnancy Lent

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

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

Talking of bottoms...seamless link...

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

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

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

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

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Half Time

So although Monday was my 19 weeks, it was officially my halfway point as I'm booked in for my c-section at 38 weeks. Where has the time gone?!

Also had the hospital on Monday to see the Crohn's midwife team - I explained to them that I'd been feeling a tad under the weather the previous week but wasn't able to tell them if it was Crohn's, pregnancy, or a combination of the two. Got my bloods done to check all my levels for general pregnancy but also IBD and they said they would be in touch if something came back off kilter.

Then there I am yesterday at my work Summer Festival with a missed call from the hospital. WAH. Luckily they called back; I was dreading it a bit as they said they'd only call if the results weren't fine...Turns out it wasn't my Crohn's flaring which was a massive relief - my inflammatory markers were hardly noteworthy. It's my iron.

I've always been borderline anaemic for as long as I can remember, but on the right side of normal, still. It seems that now my iron levels have dropped quite a lot since being preggers and my hemoglobin levels are rather abnormal. Still no giving blood for me then! Oopsy daisy. I'm putting this decrease in iron down to essentially being a vegetarian because meat is still making me feel poorly. Looks like I'll have to go on prescription iron for a while to make sure that I'm not a temporary narcoleptic whilst growing the bab and to also make sure I eat more spinach like Popeye for an extra boost. Just not looking forward to the side effects of the iron tablets (oh my Crohnie bowels).

But enough about that! Onto the nice things! Here's me #bumpingalong for week 19 in a maternity purchase from asos in a size 10, plus my new 'mum' barnet. Look at my bump...it's getting so big carrying my mango-sized baby. Ahh.

This baby is so active though! I find it all so amazing and surprising as I am only 19 weeks - I feel lucky to be experiencing such movement already.

We were starting the foundations of nesting for after our scan next week and there was one moment this weekend where our baby was going nuts! I didn't even have to get baby daddy's attention as it was so noticeable through my clothes. Our baby is definitely in a routine now, so I'm aware of when to keep an eye out for the dancing and can move my Kicks Count band around another number.

Am hoping to capture the moving on video and if I do I will share on here. It's magical/like something out of 'Alien'.

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Journey to Bump

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

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

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

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

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

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

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

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

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

Unless the little human makes an early arrival.

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Still flaring?

And my level of frustration towards my Crohn's has skyrocketed this week!

I have the first of two hen doos on the weekend, followed by the second next weekend...then my holiday on 11th August...and then the two weddings at the end of the month. Not to mention my full time job.

I certainly do not need to be tired, vomiting, shitting out water and crying. Nope. Nahhh. No. Definitely not.

However, I do have my gastro consultant appointment on Thursday of this week. I'm not expecting anything amazing to come out of it, but just having them prod my stomach and realise how hard it's gone - in a weird way makes me feel better as it would confirm that I'm flaring.

I know it sounds ridiculous as I'm 5 years into my IBD journey - but sometimes I find it hard to determine if I'm officially in a flare up, or just really struggling with the day-to-day symptoms of Crohn's; the fatigue, the loose stools, etc.

I'm also curious as to what people think about Azathioprine? I have a very up and down relationship with it and I'm considering stopping it after I've spoken to my consultant about other options.

Either way, hopefully they'll be able to patch me up for the Summer!

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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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Model Material

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

This sits uneasy with me.

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

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

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

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

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

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

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

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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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New person?

Almost feeling back to normal. If normal was a thing.

All the symptoms that caused me to feel like a bag of broken marbles have disappeared... now it's just a case of powering through the remaining weeks of Pred! Also have the dietician on 14th and then catch up with my consultant in about a month to see how things are.

I'm not a fan of steroids as I feel it gives a false sense of security; it giveth with one hand and taketh away with the other *puts away rose tinted glasses* However, if it's patching bits up that don't make sense - even if it is only for a number of weeks - then that's a hell of a lot better than continually feeling AWFUL. And at least I'm back at work now!

And I've also joined a gym! I know. I am basically a new person. Went to Zumba Step on Wednesday...almost died. But if you pardon the pun, I am one step closer to have an ass like Shakira Shakiraaaaaa. Might as well try and turn the rapid weight gain into something that resembles a bootay instead of a Teletubby.

But yes, as I've been in this relatively normal state for a week or so now, it's let me plan and do some wonderful things! 'Twas the other half's birthday last week which meant we could have a countryside escape for the weekend. Visited a National Trust village called Lacock (oh matron) and relaxed in a converted cottage in Devizes. Simply scrumptious. Makes me want to go all Cath Kidston, put on my wellingtons, bake a pie and leave it on the window sill of my thatched cottage.

 

And now to this weekend where I will be exploring Winchester with some old girlfriends. Many giggles to be had with these two lovelies... 

And I can't bloody wait.

Catch up soon amigos!

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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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