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 

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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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.

X

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.

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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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...

X

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...

X

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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What's been going on...

It's been a weird few weeks!

It's almost like I don't know what went on, as so much happened. I guess the best place to start, would be to pick up where I left off; counselling telephone assessment.

To make it a bit more fun, I've named each bit after a song. Why not! Sing it if you like...


Mr Telephone Line

So they called me on the Thursday, at exactly 9:10am as promised. It's always a bit strange doing these assessments, as I would prefer it's done face-to-face, but means to an end and all that. Went through all the questions with the lady - who was so lovely, which helped - and she informed me that the next step would be her passing on my info to her supervisor and they will be in touch.

Whilst I waited, I threw myself into work as I really am loving my new job...and my hard work paid off as I was awarded with Employee of the Week and won a £50 voucher at the end of my first month!

But I digress. Back to the phonecall.

They called me the following week to let me know what they'd decided was the best route of action for me, based on the answers I gave. Originally I had asked for individual counselling as I didn't find the CBT group too helpful last time.

However, they proposed another group for me. One that is specifically for people with chronic diseases. Worth a shot I guess?!

This all begins on 17th October, right in the middle of the working day, for an hour. Inconvenient at best, but I know that a few weeks counselling in the short-term will help me cope better in the long-term.

Which brings me nicely to my next update...


Manic Monday

Except it wasn't a Monday. It was actually a Friday. And I was in a meeting that I had arranged with my manager and my HR department.

Obviously I'd rather not go into great detail, but brought it up to let you guys know why I decided to arrange the aforementioned meeting!

Due to the unpredictability of Crohn's, and my medical history combined, I decided it would be best to gently broach the subject - more as a just in case.

I wanted to make a plan. I wanted to know that I wouldn't have to feel guilty on those days where I'm running late because I can't get out of bed/leave the bathroom/make my way in without a toilet stop-off.

I also wanted to know the work procedures in case I needed another op/went into A&E out the blue (both of which have happened to me whilst being a working girl. Not that type of working girl. Just a girl. At work. In an office).

And of course I needed to inform them of the various regular appointments I had coming up; counselling every Thursday from 12:30-1:30pm for 6 weeks, the regular blood tests now I'm on Azathioprine, my dietitian appointment on the 21st..

Naturally my mind flapped due to the following thought process:

*AREN'T YOU GLAD YOU HIRED ME?! I'LL BE THE EMPLOYEE WITH 75,000 APPOINTMENTS DURING MY PROBATION PERIOD*

But it turns out that this company is pretty damn fantastic and openly said they will do as much as they can in order to support me - as long as I'm open with them (within reason obviously, as no one needs to no bowel movements down to the second!) But I think is fair enough - as I've definitely learnt from past experience with university/employers that it's best that they're made aware of what's going on. Otherwise I'll only be a hindrance to myself!

All in all. Very pleased I decided to bring it up now, whilst things aren't as crazy as they have been. And at least I know there are contingency plans in place...because my body is a strange one sometimes.


Doctor, Doctor

I also had the hospital last week, to get a round up from all my previous scans. The good news is that my insides seem to be calming down and I seem to be the closest to remission that I've ever been.

One would assume this would make me feel very happy, however I actually felt a bit odd.

I don't know if it's because having not long started on Azathioprine my body feels all over the place - and I guess I don't necessarily feel all that well, yet.

Like I'm being told my body is the best internally, that it's been for a long time. But for some reason my mind and general well-being doesn't match that at the moment.

I guess it's also because all that I've known since 2009 is the ups and downs of Crohn's...but mainly the downs with regards to ops/treatment/meds, etc.

So now I need some time to adjust. But I'll get there though. Especially with all the upcoming appointments which should really help me over that final hurdle and into remission.

Who'd have thought?!

X

PS: Each subtitle in the post is linked to YouTube if you do actually want to sing along ;)

5 days to go

I had my pre-operative assessment today. Good news is, I am fit enough to have my operation! First hurdle successfully leaped over.

When I arrived I had my height and weight taken: I'm still 160cm even though I tried hard to be taller, but to no avail. And my weight was 66.6kg. Not a great sign! 666/the Devil, etc ha. It also frustrates me because it makes me realise how much weight I've put on whilst being on ruddy steroids. But there's nothing like a spot of heavy surgery to shift those pounds! (Although not a recommended course of action haha)

Then I had my blood pressure and temperature taken. All was well, apart from the slight issue of my pulse...average healthy range for someone my age is 50-70 and mine was a casual 122. Needless to say, I was slightly nervous...*stay calm*

I wandered down to the next nurse to go through the thousand questions to make sure I'm fit and well for general anaesthetic; are you diabetic? Have you had a stroke? Have you ever had tuberculosis? No to all of the above. Done.

Blood test time. Except my right arm decided I had no blood to give and ran dry like the Nile in a drought. So now I have a hole in either elbow crease to make up for the empty first arm. (Right side again, see? What is it with that side of my body?!)

My turn to ask the questions...

It wasn't the nurses fault, but it was annoying because any questions I had about my surgery came back with the same answer: "we're not sure and won't know until you've had the operation."

So here's a list of things I still don't know:

• How long will my operation be? 
• What exactly will they be doing?  
• How long do you think I'll be in hospital for afterwards? 
• What are the chances of me having an ileostomy bag? 
• How many pairs of knickers will I need to pack?

I think you'll agree that all of these are very important questions - especially the last one.

There was also some new information I learned today. That is, there is a chance I will have an ileostomy bag (which I knew already) but also I will wake up with a catheter attached to me. This will essentially make my nethers redundant.

But I will also be attached to a machine for PCA; Patient Controlled Analgesia. PCA consists of a machine that is fixed to a stand by my bed, and connected to me by a tube directly into my vein. I will have a handheld button to press when I feel pain, and then a small dose of the medication will go straight into my bloodstream. Now I think that is pretty damn cool. Medical science amazes me sometimes!

But yes, a warning to any of my visitors: if you're boring me I may press the button and drift off into a nice morphine-induced sleep haha.

My official countdown has now begun. Until next time...

X

That awkward moment...

When you're in a leotard and tights, in a ballet class at university and you're worried that if you do a split leap you may inadvertently shit yourself. Not ideal, I think you'll agree?

Well this was pretty much my thinking during every dance class whilst aiming to get my BA Hons in Dance Studies at Roehampton a few years ago.

Luckily I never actually pooed whilst dancing. But still, I certainly mastered the art of the quick strip when getting to the toilet (FYI, never underestimate the difficulty of stripping when in 75 layers of Lycra)

So there I was: just turned 20, in my second year of uni up in London, living the dream of dancing every day. And then it all took a casual turn for the worse.

And by casual, I mean UTTERLY HORRENDOUS.

It's the little things you notice at first...how suddenly it's a lot trickier to finish a meal without feeling sick. How the ones closest to you start wondering why you're pushing your food around your plate, but never actually finish a meal. The weight loss. All of these things tend to compound to (apparently) mean one thing to the ones who love you. I must have an eating disorder. Of course! How silly of me to think otherwise (?!)

To be honest I can see where they were coming from; I was a dancer up in London living away from home for the first time. Each time I was home from uni I was that little bit thinner. Eating was tough. When I'd finished eating I sat in the bathroom for a while. Didn't look great.

But what they didn't realise is that at no point was I voluntarily getting my food back out my body. If you can find me anyone who can poo on demand, well...I'd give them a bloody great high-5.

And this is what I found most concerning. The amount I had to go to (what I call) the toilet-toilet.

Now after reading up on this, the average amount for a normal person to poo can range from three times a day, to once every three days. Either way, I was suddenly going a lot more than this. And by a lot more, I mean at one stage going 18-20 times PER DAY.

So this lead me to visiting the Student Medical centre on a regular basis, as I was convinced all was not well with my internal plumbing.

"You've got IBS"
"This is your normal"
"You may have Coeliac disease"
"Let's strip back and build up each food group"

I'm sure if you are a fellow IBDer, then these will most likely be things you've all been told at some point.

I had another blood test...turns out I had Helicobacter Pylori. To you and I, that's a duodenal stomach ulcer which was in some way helpful as it explained the constant-vomiting-when-eating I'd encountered. But I still wasn't convinced this was my main problem.

So I gave it a fair shot, I did as I was told. That was until I had a quite horrifying experience whilst on the toilet-toilet.

WARNING - descriptions ahead
Those of a queezy disposition may like to skip the next paragraph

The best way to describe it would be if someone had poured a tin of red paint into my toilet; completely liquid and red. Yes, you guessed it! It was blood. A lot of it. And at this point I'm around 7 and a half stone and not really able to keep anything in me, at either end. Unsurprisingly, I was shocked/panicked/scared and so I cried. I sat on my bathroom floor and sobbed. What was wrong with me? Why was this happening?

Come morning I'm back down the medical centre for another blood test, desperate to find out what was going on. But still nothing conclusive.

*Forward to the Summer holidays when I'm back at my home-home*

I have a lump on my bum and it hurts. Sneezing hurts a surprising amount (so many muscles down there?!) and it doesn't seem to go away, so naturally I go to see my GP. Turns out I have an abscess?!

"Take these antibiotics for three weeks. The lump will stay but the pain and swelling should subside."

Sure it will...

Three weeks later, the lump is still there and if anything it's bigger. So I see a different doctor and he sends me straight to A&E, where by all accounts, I should have gone three weeks prior.

Long story short: abscess drained and packed and a few weeks later I'm back at uni and at the Student Medical centre, hospital note in-hand.

"You need to see a Gastroenterology specialist, now."

Oh hi Chelsea and Westminster hospital. Seems you and I are going to become good friends...

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