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.

X

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.

X

Woah to 2

WE ARE HAVING ANOTHER BABY *klaxon*

We're going to be a family of 4. Two children. A second spud due for arrival in September. Woah.

I still find it quite mind blowing that my husband and I coped (?!) with the secrecy of those early pregnancy days, whilst our first born was having the worst health experiences of his little life so far. Such a dramatic overlap.

The six weeks of knowing there's a new human growing, but weren't yet scanned and in the 'safe zone', all the while being tested in ways that you hope to never be tested as a parent... I found that really tough. My emotions went through the ringer; wanting to do everything for my son yet trying to stay calm for the unborn. I wanted to shout from the rooftops that we were expecting another child, so please bear with me if I seem wildly overemotional. And yes I would like some gas and air in the ambulance, thank you please. However, we had to make sure our son was all right and another few weeks of sshing about the bab wouldn't hurt. Now we've been scanned. We've seen the tiny spud. My rooftop shouting can really take off.

We actually found out we were expecting the day before our son's first seizure episode. Talk about highs and lows in a condensed space of time! But due to terrible period maths on my part, I had no idea how pregnant I was. I did guessing based on whether I took multiple tampons to my Christmas do - even with that, I wasn't sure if that meant I was nearly finished or had just come on? So in short. No. I don't know when my last period was. I just knew that the four different tests all suggested that there wasn't going to be another period anytime soon. All sticks pointed to POSITIVE.

It was all very surreal because that technically meant that we were going to be parents of two. Jesus. The toddler terrible twos are very much a thing we're in the middle of - so what happens when you have a toddler and a newborn?! I once heard the phrase that when it comes to multiple children, two is a zoo. And there we were... positively pregnant with a second. Zoo, here we come.

Did the relevant admin with the midwife and got booked in for our dating scan. We were so close to being able to tell people (as long as all was well) and I could sense the anticipation of no longer having to dress in a sack and walk like Quasi Modo to hide the bump. Yet as I mentioned with my bad period maths, our scan meant we were actually only 10 weeks pregnant. So not able to officially announce the second bab - and equally not pregnant enough to have the first set of screenings, either. This also meant another due date after measuring the little thing. Back in two and a bit weeks to do the proper dating scan then!

The longest two weeks of all time, yet there we sat, looking at the new bean on the screen. I cried. I've felt so emotional this whole pregnancy - not sure if it's because of the timings/circumstances around when we found out? Or that my awareness has heightened with regards to pregnancy not going the way it's supposed to. It's most likely a combination of all, but at least I had the take home from that appointment that our new bean was doing well. Everything looked as it should. We also had another due date now they could actually measure crown to rump...it's a late September baby! (Minus a week or so due to elective c-section so my arse doesn't fall out in pushing, thank you Crohn's). So yes, now we can tell friends and family the good news. I can be preg and proud.

I'm so pleased that I took the time to blog every week when pregnant beforehand - and despite my slack writing since then - I have decided to do it again with this bab. I'm currently 15+6, my turn of the weeks being on a Wednesday. I want to document all the iddy biddy feelings and share how different (or not) they are from the first time round. And I'm going to try and be a trendy mum-to-be with an outfit post each week too. Because my word, this bab has popped right out. Muscle memory, or whatever it is... I don't know how I'm going to dress this speedy bump. Unitards? Tents? I'll be sure to share the weekly outcomes regardless.

X

In my 20s

Yes, in my age but also my baby weeks.

I am now 20 weeks and it's also the week of our scan where we get to see our baby again! I CAN'T WAIT TO SEE THE SMALL HUMAN. It's like the Christmas Eve feeling. Roll on this afternoon...

#bumpingalong this week was a maternity monochrome affair in leggings from asos (size 10), vest from New Look (size 12) and then a non-maternity kimono from H&M (size 10). I have broadened my maternity gear significantly now, so getting dressed every day isn't so much a guessing game of what still fits or not!

Ha ruddy ha

Some of my new maternity items include a slogan t-shirt (I don't know what's happened to me) and a second pair of maternity jeans. Now I embraced the overly elasticated waistband my first pair brought me - but this pair?! Something else entirely. No extra waistband...just a whole new section of material to hold your trousers up. Gone are the days of tucking anything in then!

Such a mum-to-be purchase

Flattering angle perhaps? My bump looks smaller...

Other half and I have also been taking polaroid photos every four weeks (supposed to be every week but #bumpingalong in clothes was more convenient) and we decided the other day to do a comparison of week 12 and week 20's bump. Obviously I am aware that my body has changed shape...but seeing the two photos side by side. Well...see for yourself...

I still have 18 weeks to grow. What's going to happen to my body?!

[Excuse the poor quality of the photo of the photos]

Will blog again once we're scanned because quite frankly I can't think straight when I'm this excited/nervous/anxious. WAH.

Baby baby baby.

X

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'.

X

Hospital Fun

HI GUYS!

I appear to be becoming quite slack at regularly posting - but it's only because I've started a new job and it is all very very busy!

I'm sure once everything has settled down it will give me the opportunity to post more often.

So a quick update from where I left off:

• Had the hospital last Thursday; generally good news with regards to results from the colonoscopy and MRI. My doctor did tell me that although there were signs of inflammation, it was general Crohn's stuff so nothing I can really do about that other than keep on the meds!

• I've officially been put back on Azathioprine now; didn't get on well with this AT ALL last time. But he explained how I shouldn't really be on Humira on its own (why I didn't know this before is beyond me)

• And obviously I did the honest thing and told him about the lump on me backside. He said it seems superficial and not too much to worry about - but because of my history he has put me on antibiotics. Not Metronidazole though which is a plus! As after 10 times with that and 10 ops regardless, it's nice to know there is an alternative. However, as with all my lumps on bums, if nothing has changed within ten days then I am back into see him for a meeting with the surgeon for another EUA.

Reeeeeaaallllyy hoping it sorts itself out as I love my new job and don't want any unnecessary time off (one could argue an op is in fact necessary, but you know what I'm trying to say!)

My doctor also feels that once I see the dietician (mid-October) that I could actually be in a position where my Crohn's is relatively under control. Music to my ears!!! But he did say he's still a bit baffled with the bloat as medically, all my things check out normal...

Now. My old hospital sent me a letter the other day. This was a double-edged sword really, as it contained the results from the CAT Scan I had a little while ago (good) but also a sentence which really ground my gears (bad)...

"Miss Stevens did not attend her Outpatients appointment today. I hope this is not been due to an administrative error."

WHERE DO I START?!

I'm not too sure how many departments I have to call again to inform them that I have left the hospital and joined a marvellous one?! Also. Why be so quick to reference my not turning up/administrative error when I spent over six months fighting with the administrative system!?

Anyway, ranting aside, the letter said the following: The SeHCAT scan has revealed severe bile salt malabsorption with a total body retention at day 7 of 1%.

That doesn't sound too great, but it seems to be easily fixed. Doesn't explain the bloat though, just the watery insides haha (sorry if you're reading this over lunchtime)

And on that note, I am off to get some lunch myself.

Taraa chaps!

X

It's been a while!

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

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

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

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

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

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

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

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

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

Welcome the constant poos.

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

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

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

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

X

Mind Games

I am very much a positive person when it comes to looking on the brighter side of life, and what not. But I seem to have hit a wall.

I wouldn't say that I am 'depressed' again - I am just having a hard time trying to stay upbeat about me and my body.

Weight issue aside (because you all know how I feel about that), I don't understand how I can get better when no one knows why certain things are happening inside me...ok, yes, I am under investigation again, but at a snail's pace. And the snail is asleep.

At least before when I'd be a bit down about the whole thing, I knew I had a scan/appointment/consultation around the corner and we were working towards getting me better.

But their lack of urgency is even more apparent with the appointment letters I got through this week. My surgical follow up appointment is for December. My cat scans are in the middle of July and my gastro follow up is near the end of August. Great work.

I really don't want to have to get more poorly before someone does something to help?!

I guess I feel like I did before I was diagnosed with Crohn's; I know things aren't normal and despite what the medical people say to me, it's not making a blind bit of difference. When there's a fundamental problem with my body - especially my digestive system - whatever I do right now, isn't going to change anything.

Which is why I am in the middle of moving hospitals on the hope that whoever I see next will be able to help me out...

X

Pure Rage.

I have just returned from the hospital and I am absolutely livid. Fuming.

I am running over the conversation with the doctor over and over in my head, and doing the typical thing of 'if only I'd said that'. Hindsight is a wonderful thing.

What is NOT a wonderful thing, is coming away from the hospital after waiting stupid amounts of time to be seen by someone, to then get told I will need to shit in a pot and have a scan within the next 6 weeks. Oh and here's a slip for a follow up appointment at the end of August.

I'm close to punching my computer in frustration.

AND THEN to make matters worse, we decided to go over my scans...

You know, the ones where they mentioned I may have an abdominal fistula? Shed some light on why I'm always so bloated and in levels of pain that need Oramorph to ssh them?

Well it's a no from him!

Because apparently it looks like it's just a bit of muscle inflammation...Or he said maybe it's to do with the weight I've put on...

How fucking kind of you to point that out. It's not like I'm unhappy putting weight on or anything. It's also OBVIOUSLY stupid of me to think that something must actually be wrong with my stomach. But you carry on, even though I haven't seen you since before October. Carry on chap.

You're right. All of the pain and struggle is just the weight I've put on. So yes, let's get an appointment for me to see a dietician.

I didn't realise being fat meant that your stomach:body ratio went completely disproportionate, you were always bloated and you are hard in certain areas of your stomach. That it made you feel sick once you've eaten and your poo still sounds like you're weeing. This is clearly down to the weight I've gained! And how convenient it all got worse after my operation!

Even the boyf tried to help me out as he could see I was getting agitated and teary. Nothing makes you more frustrated than when you say your piece, followed by 'Mmm yes. I appreciate that.'

NO YOU DON'T. NO YOU REALLY DON'T. Otherwise you would not let me stay this way for the next few months.

The way forward? More investigation. And for now? I just have to stay exactly as I am - ol' chubby me - until I get scanned within the next 6 weeks. And even then have to wait at least a month after that until I speak to someone face-to-face again.

Thank you ever so fucking much for absolutely nothing.

X

I just don't know...

...what to do with myself.

I have essentially shed a small tear every morning: I like to plan an outfit, as I'm quite the flapper in a morning routine and it's normally impossible to get myself out of bed.

The problem is, what I have laid out to wear is normally ruined by the fact my bloat has not changed shape or size in the night. It's driving me crazy!! None of my clothes are fitting me anymore - even my loose ones - and I'm not prepared to go out and buy maternity clothes to cater to my bloat I shouldn't even have.

To add to my woes (dramatic, I know), this week is completely dragging; all I need to do is get to Monday and see a person face-to-face at the hospital.

But then this is a dilemma, as it's my birthday a week Tuesday and it's also Bank Holiday weekend. Anyone that's had a stay in hospital knows weekends aren't exactly fabulous for care at the best of times. Let alone a three day weekend.

So what do I do? Wait to see what the doctor says on Monday, and hope he doesn't send me in just before the long weekend? Surely if my scans were super bad, someone would have already been in touch?

But then again, you would have assumed someone would have been in touch already with a follow up appointment from my scans three weeks ago?!

And another thing which has really ground my gears is that what I have planned over the next week or so, were things I booked before my operation in January - on the hope that I would be fully recovered and able to properly enjoy it all. Except I'm not fully recovered. I'm essentially where I was 6 months ago.

Why does it constantly feel like I'm going around in circles?!

X

Circus Act

No, I'm not joining the circus. Although if there's a space available for a Bearded Lady?

Haha, lies. I have a goatee instead.

(I don't, and that is not me in the picture - 
just for added clarification!)

I have called this post 'Circus Act' because I am fed up of jumping through hoops to see someone from the hospital.

Why is it so hard?!

I went to the GP yesterday because I am still in pain, bloated and generally mehh. And I wanted to see what was happening with my scan follow up. But according to the doctor I saw, abdominal fistulas are not a painful thing to have as they're embedded deep in the tissue. Erm...

I beg to differ my friend. Well, not my friend. My relatively unhelpful doctor man.

To be fair to him though, after his ridiculous sentence re my pain, he put together a letter which was addressed to my illusive surgeon and also my gastro consultant. It said everything that I want to say to them; how I'm close to making a complaint as it's gone on for so long, how I have no idea what's happening with follow up and no one seems to be telling me anything, how I have on-going symptoms which, quite frankly, are not ideal for general day-to-day living.

I then asked when I could expect to hear from someone at the hospital. He said the only thing I could do was to wait until someone gets in touch. Heard that before!

Fortunately (I guess) I have an outpatient appointment with the gastro team on 20th May. So if I haven't heard anything by then, at least I will be in the hospital speaking to a person face-to-face. Except this isn't even anything to do with the gastro team?! They've already told me it's for the surgical department. So God knows where that leaves me in all this?

Maybe it's better I join the circus after all...

X

Scan Ramblings

The original draft for this post was short and sweet. But by default it has turned into another late night/early morning ramble because I can't sleep.

And so we begin...

I made a friend. A friend who was also having to drink TWO JUGS of ridiculous laxative type water: that cleared me out big time. [I just love the accents, 0:32] Cue mini scuffle between the two of us for the toilet.

She was under investigation to see whether she had Crohn's (cheeky opportunity for a blog plug, but also for support to know she's not alone, even though it may sometimes feels like you are.) But meeting her reminded me of how messy your thought patterns are when you're first finding out what's wrong with you. And even now, when you know what's wrong with you, you just need to know *specifically* what's wrong this time.

I know we didn't exchange numbers, but if you are reading this, I hope you're ok and if you need anything please get in touch.

It's crazy when you actually take the time to have a mini-reassessment of how much your life alters when you're diagnosed with Crohn's. Well I'm sure it would for any chronic disease...but I have Crohn's so I couldn't possibly comment on others - I have no experience!

It isn't just the obvious physical side of things that change; symptoms and what not. It's the mental side; how your perspective on things can be so different from what they once were.

When you're going about your daily business and realise that you've already done a mental calculation of where the nearest toilet is, can you get there in time, god I hope there's toilet paper, oh it's fine I have tissues in my bag already. Maybe even some spare knicks...just in case.

Things like that were never something to be concerned about before. But back to my scan...

I got scanned - lying on my stomach, wtf?! Got blurry vision from the injections, said my goodbyes and plodded on (both figuratively and literally).


That's it. I have no more news haha. I am now waiting for the cogs of the NHS to get turning, as I eagerly await what they've found inside me.

I am scared though. I feel like a vain, shallow person too. And I tell you for why!

I was Google imaging (don't) enterocutaneous fistula as I have discovered that this is the medical term for an abdominal fistula, which is intestine to outer skin. And the potential op/healing/management/scarring scares the living shits out of me. It's all just so open! And just, there.

I won't put any pictures on here in case some of you are reading this with your lunch or dinner. Wouldn't want to make you ill!

I already have a few scars on my tum and obviously I would rather feel better, than have less scarring but with aliens inside me. But I just feel like I'm going to need help to essentially cope with how I will look after surgery. It just seems so, I don't know, bleurghhh.

Pfft. My head just seems full again, like it was when I first started my blog back in January; so many questions, not so many answers.

In Other News

Now I'm not sure if I'm being paranoid, but I can pinpoint particular areas of excruciating pain on my tum. Plus the whole bottom-right-hand-side-not-my-actual-bottom-quarter of my stomach still feels incredibly numb. I suppose the best way to describe what it feels like when I touch the numb bit is this...

When you were a child (or a not so sensible adult) and you tied an elastic band around the end of your finger until it went blue. And the you touch things with that finger whilst you wait for the blood to come back. It's like that. You know you're touching it, you can feel it a little. But then also can't really feel anything at all.

So there we are. This week I am on abdominal-surface-busting watch, NHS hunting and trying to find out what happens now.

For a girl like me who loves a bit of organisation in my life, this is not so easy!

X

PS: Sorry-for-all-the-hyphening
PPS: I know I'm all wobbly-brained again; I shed a tear watching Ashley Banjo's Secret Street Crew earlier because it made me miss my dancing days. I'm officially a worried wimp. For the international readers amongst you, to be fair even the UK guys, it is not a show to cry about. Ever.

Balancing Act

Hmmm... yesterday didn't go so well.

Went to work as normal, had a niggling pain and felt a bit spaced out - but planned on just cracking on with the day.

Then I threw up. And then again.

Cue journey home and the hope that I didn't vomit on the underground.

When I got home I had some Oramorph, as it's the only painkiller that totally wipes out the pain. But it also meant that I was knocked out for 5 hours (didn't even get to watch the whole of Pocahontas!)

So this morning I have decided to work from home and will be going into the office this afternoon for a meeting. Power through, and all that.

It's just soooooo frustrating. And it's wearing me down.

It's the unpredictability of what's going to happen with my MRI on Friday...what I'll be told in the follow up appointments...and what this means for my own life and working life.

I'm not sure how to find a balance of doing 'normal' things, when I don't even know the true extent of what my insides are doing and what happens next?!

X

MRI

Next Friday.

10:15am start.

Few hours of drinking weird medical stuff and investigative scanning.

Game on.

X

Little bit shit

As you all know I had my scan yesterday; originally planned as a CT and changed to a contrast ultrasound.

I didn't eat anything yesterday (as informed by the accompanying rules to the letter) and arrived ready and waiting. Fortunately it wasn't a contrast ultrasound after all, so no weird aniseed/vanilla/medicinal drink to have *sigh of relief* it was just a normal scan - I just needed to be empty inside for them to have a good ol' browse.

In my mind I told myself that I didn't really care what they found, or how bad it was, as long as I knew what I was dealing with...

Well they found something!

It seems I have an abdominal fistula. That's a little bit shit.

At this point I may have shed a tear or five.

I don't know if I cried because it was relief at there being a reason why I'm so bloated. Whether it was pure dread because after already having two previous fistula in my ass region, things didn't go so smoothly [did I tell you the time I had 9 perianal abscesses?!]

So yes. This it seems, is what's giving me grief.

Although not talked about much, abdominal fistulas are dangerous and difficult to manage for both the medical team and the patient.

By definition, a fistula is an open passage connecting the abdominal organs to the external surface; in layman's terms, it's a hole between one of the abdominal organs out to the skin's surface.

Based on when the problems started going crazy, I'm going to take a stab in the dark and state that this is the reason I have the fistula:

Fistulas caused by complications from surgery may involve an incomplete closure of an incision made on an organ or from an inadvertent nick by the scalpel that doesn't heal and may become infected.

Read more: About Abdominal Fistulas | eHow.com

***

I got told I will be called today - haven't as of yet - with a time and day next week to go get MRI'd for further detail.

Also on the chase for a follow up appointment with the surgical team. AGAIN.

***

To cleanse my brain, I called one of the lovely girls I met in hospital last night, as I felt like I needed to question/worry/rant about what I'd been told and I know she's been through something similar.

She was so helpful and told me what to look out for with my scar, how I was feeling etc.

Although I've had two fistula in my bum/pelvis, the abscesses it caused were near the surface, but were never really visible... unless you were in a yoga-twisted-acrobatic-move-with-accompanying-mirror. And by 'you' I obviously mean me. Because it would be a little bit weird if you were doing it too.

Whereas with this abdominal fistula, it's right in my insides and I'm assuming from what I've been told, it will be trying to work its way to the surface - typically through the weakest part of my skin. How convenient I have a 10cm scar right in that spot.

Apparently the redness of my scar should have gone down within (maximum) a month post-op. Well this is what mine looks like today...

Outfit theme of the day: Club Tropicana drinks are freeeee

 

  

(Please also excuse the lower trouser elastic imprint - part and parcel of the bloat and wearing clothes)

But as you can see, my scar from my kidney op is nice and white (near my belly button). Granted this was from 2009, but once the scab fell off it was pretty much like this straight away. So another thing to keep an eye on, I guess!

If I can get anything out of this ridiculous situation, I'd hope that it's at least a few months of normality and that it won't be too much longer until I generally feel better - both physically and mentally.

I'm doing ok. Just feel a bit let down by my body haha.

Fret not, as in the meantime, I shall look forward to the weekend where I shall be painting my nails, getting my hair cut off and enjoying what's left of the sunshine!

Toodleoooooo

X

Hunger Pains

Sorry for moaning, BUT I AM SOO HUNGRY.

I am going to make sure I request that future scans - where lack of food is required - are no later than 2pm.

There's a rumbling in my tummy that is very loud...I feel empty.

And being anti-social at lunchtime at work is no fun. But the food aromas were torture! It's a lot easier to not be hungry in the house on my own on scan day.

#LessonLearned

Woe is me. Let's go get scanned.

X

Ms Motivator

We've bought an exercise bike!

And not just any bike, a Davina Magnetic Exercise Bike...[sounds good?!]

The Davina magnetic exercise bike lets you burn through calories and tone your legs in a comfortable, low impact motion.

 

It has 8 levels of tension control so that you can increase the intensity of your workout as your fitness improves or simply vary the resistance within workouts.

 

It includes a centre console that reports on the various aspects of your workout.

Snazzy.

I have also quit the gym. Well almost.

Now I know you're probably thinking where's the logic in that?! You're trying to lose weight, not gain weight. But alas, my friends, there's a method in my madness;

I don't have energy at the best of times, but am very much aware that I am borderline Chubster again. I also have to deal with the unpredictability of what may or may not happen with the hospital and what that will do to my general health and well-being. Whilst this is happening, I find it very hard to justify paying £40 odd per month when I've been a handful of times due to crappy Crohn's.

Moral of the story? If Crohn's is ever going to be helpful, it's when you're trying to quit the gym ;)

Which leaves me with the predicament of HOW do I lose weight, when I'm not a member of the gym anymore?!

This is my plan...

• A 10 week workout (minus stomach crunches/sit ups until at least May 5th due to post-op rules ha) with the aim to lose around 2 lbs a week
• No carbs in the night time
• Aiming to introduce natural anti-inflammatory foods into my diet
• Trying to stick to a low fibre diet for the bloat
• Start going to salsa and ballet

But another predicament arises as low fibre foods are not very helpful for weight loss. WHY OH WHY IS THIS SO HARD?!

Take puddings: suitable suggested foods include ice cream, jelly, custard, lollies. Foods to avoid...any containing fruit or nuts.

It basically means in order to eat the right foods for my body, I'm going to have to work out super hard to get rid of this extra weight (uhhh) but I'm post-op so there's only so much I can do for the time being?!!

Got my contrast ultrasound tomorrow though, so at least then I shall hopefully have an idea of why I'm super bloated all ze tiimmmeee. And if anything, I may find out how to amend my diet accordingly.

If all else fails....................

X

Nothing to report...

Here's me...

Still bloated as ever, just sitting down this time.

As you can see, nothing has changed. And I'm definitely not with child.

I had the hospital yesterday and I was sincerely hoping for some answers, or at least good news. I suppose you could say I had answers......well we're halfway to answers anyway.

It seems that they have whittled my bloat down to the following reasons:

1. I have a collection based on infected scar tissue
2. I have a collection from an abscess which has formed inside me
3. The stricture they removed has since been replaced by another one where my intestines re-joined

Any of the above do not make me jump with joy. But to be honest, if I have any sort of conclusive answer in the next few weeks, then it will make me feel a bit better.

I got told yesterday that my CT Scan on April 24th has been changed to an Ultrasound with contrast. Apparently it's because I cannot be exposed to that much radiation in a short amount of time (my last CT Scan was 02.02.13?) I don't care what type of scan I have - as long as it shows up what in the blaze is happening!

Whilst I was at the hospital yesterday we did some bloods to test for Coeliac [and everything else] so I think I can call end of next week to see whether I do...

I also really hope that I'm not chasing a follow up appointment after the scan; will be the last thing I need. But also that I can be sat down and told exactly what's going on, and what happens now.

Is that really too much to ask?!

*****

I'm looking into a nutritionist at the moment - if anything, just to fill some time between appointments. But I want to know at the end of the day, I have exhausted every possible angle before I get told there's nothing they can do. Any advice or contacts welcomed, tweet me on @Harriet_Pure

*****

On a lighter note, I was in excruciating pain on Sunday evening and I think I may have taken my Oramorph too close to the previous dose. Never in my life have I felt soooo spaced out, itchy, nauseous, drowsy.

Quite funny when I think about it now - walking around like a zombie, almost kicking my cat a few times. But at the time I couldn't see the wood from the trees.

Bloody side effects.

Haha, if only.

X

Body Struggles

Well today's been fun (?!)

Running late this morning, as I couldn't find my little cool bag to put my Humira in to take with me to work. Slight panic.

Cue a menopausal hot flush on the tube with a mini strip because I felt like my body was on fire, just from the swift jog to the station.

Did aforementioned Humira jab and bled through onto my dress. Excellent injecting skills Harriet.

And I'm still bloated like a pregnant lady...look, no feet!

I also found out today that I have my CT Scan on 24th April at 5:15pm. So not too far away, except I can't eat for 8 hours before...I'm going to die of starvation! The temptation in an office job is the biscuits. Damn the biscuits. Must. Avoid. The. Biscuits.

Normally it's not so bad as my appointments tend to be in the morning, so those 8 hours are mainly made up of me being asleep - therefore not eating. Obviously. Unless I had Nocturnal Sleep-Related Eating Disorder, where you sleep-eat (unless maybe I do? That's why I'm always bloated and don't know why haha)

In other news, I am trying to work out how to go about my appointment this coming Monday when I get to see my consultant.

Out of all the medical people I see, the Gastro team are the ones where I can have a moan and not feel bad about it because they're actually helpful. But I'm already worried that there won't be much they can do, and it will be a case of 'need to see your surgeon' again...

We shall see what happens!!

X

Update

There is no update as such, because there is only good news! There is NO LEAK!

Although my CT scan was technically inconclusive due to the contrast liquid not getting far enough in me, it seems that I have a lot of inflammation around my new wound site. But importantly, no signs of a leak anywhere.

Unfortunately, the rest of the detail is lost on me, as I happened to be in the toilet (how apt) when the registrar came around this afternoon and she spoke to my other half instead.

Since then however, the registrar has popped back to see me to give me all the gory details; I have a small collection by my wound site, but this is due to the time elapsed since my op, (i.e. not that long!) and will settle in a further 2-3 weeks. But I can also start to introduce food slowly now, which is fab as I've been on sips of water essentially the last 6 days.

Moral of tonight's bedtime story? I do not have a perforated bowel and I can start to eat again.

So now I can sit back and watch Splash haha. What a Saturday!

X

Advice from Ronan Keating?

Dear old Ronan once said, "life is a roller coaster" and that it is my fellow readers.

As today has already been completely different to yesterday.

I couldn't sleep properly at night. Any which way I lay down, pain would screech through my insides. And I also welcomed back a bloat with a vengeance. It was also the first time in a few days that I have needed Oramorph to get me through the night.

My surgeon's registrar came round this morning, had a feel of my tummy. Then again. And a bit more. And it hurts. Fuck.

She is extremely concerned as things are not how they should be; my temperature spiked during the night, it hurts to move, and it seems distended again. But different to Thursday, as I do not feel sick at all and have since opened my bowel.

She thinks....there may be a leak.

A leak? A perforated bowel? Either way, things are not ok. And I am panicking.

*******

I have just returned from a CT Scan and am awaiting the consultation for what happens now, and what they have found.

From what I gather from this morning, if there is a leak but it is all contained and my body is dealing with it (albeit slowly) then I can just have some antibiotics. If it isn't contained, then I believe I am back into theatre.

But don't fret, as it is no reflection on my surgeon's skills. Unfortunately with Crohn's, the tissue will always be diseased and things will not always heal well due to it being an auto-immune disease.

So I guess it's just one of those things.

X