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. 

***

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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10 Year Challenge

You may have been aware of the latest internet craze called the #10yearchallenge? Essentially a then and now (or at least a 'then') from 2009. Why someone felt 2019 was the year to look back from is beyond me? Surely 2020 would have been better, as a multiple of 10. Or maybe I'm just thinking too much about this.

Anyway. I hopped on the bandwagon on this drizzly Wednesday, after many a day of scrolling through various social media platforms seeing people's throwback to a decade ago. Glow ups, etc. Lovely time. And I put up a picture of me from ten years ago.

But it wasn't until I started looking through my own photos properly from 2009 that it dawned on me: I've been having my own 10 year challenge. January 2009 was the month I got diagnosed with Crohn's. 2009 was the year that what I thought I knew of my health was all change for forever more. A whole decade of diagnosed IBD.

I pretty much spent all of my 20s - in one way or another - poorly. In hospital. Lying down because it hurt to get up. Sleeping on a narcoleptic level. Fat. Thin. Steroid moonface. Taking medication. Injecting medication. Having an IV for medication. Keyhole surgery. Robot surgery. Slice me open surgery. Hospital admissions. Inpatient. Outpatient. Too many perianal abscesses to mention. Too many visits to a toilet. Too many medical professionals looking up my asshole.

In January 2009 I was presented with a challenge I didn't know I'd have to face; a challenge that had mini-challenges en route. But Jesus Christ it has absolutely been the making of me.

And here we are now! Yes OK, I'm like 17 operations in (who's counting?!) But I am in my 30s. Married. Mama. Now a homeowner (what a palaver that was - will pick up that topic of convo another time). Back working on a magazine portfolio that I love so much. Things are actually really good! And I'm so happy that everything finally seems to be falling into place for me and mine.

Sure, I still have to do an assessment of where all toilets are if I'm out for a family walk. Or there might be times where Mummy just needs to have a quick powernap before we watch Teenage Mutant Ninja Turtles for the 6th time that day. There might also be times - like now - when I'm sitting on a train and I catch my reflection in the window and it's apparent that my tired bags have developed their own bags. Eye bags on eye bags. It's quite a look and I don't think any form of makeup layering is going to help this face out.

I don't mind you see, because besides being rather tired, I am content. I have spent three days in London doing meetings and what not for work and it brings me joy. But not as much joy as stepping off the train to be greeted by my husband and son will bring me. My boys. My little team.

To be honest...I'm not sure where this blog post is going. Am I waffling? I just knew that I had to take a moment to acknowledge the ol' decade long anniversary of knowing my insides were broken. And that however shit things might have seemed at times, it works itself out. Ish*

Here's to the next ten years.

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

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

Ass Issues

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

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

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

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

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

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

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

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

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

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

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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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3 More Sleeps

Just 3 more days for my to fill my time as a pregnant woman, waddling around with a small human inside me.

I can't quite believe we're here already. Mentally I feel about 30 weeks pregnant - like I just haven't been pregnant long enough to be able to have a baby on Friday. Yet physically I am more than aware that it's almost that time.

As I mentioned in my last post, I have now compiled all my #bumpingalong photos and it's amazing to see the change in my body. Especially when there are particular photos I see and I remember thinking wowza my bump is huge when in reality it was probably week 18 and more of a swollen bloat-type bump compared to what it is now!

This is my final #bumpingalong at Week 38; non-maternity clothes (Topshop size 12 dress and a size 12 cardigan from Primark), paired with thick and wild pregnancy hair that I don't quite know what to do with.

And here is my journey from Week 14 to Week 38 with a few extra bump shots thrown in for good measure...

Admittedly the lack of consistency with square photos has really niggled at my OCD, but hey ho. The sentiment is the same when you compare the earlier photos to the ones from the third trimester. So big and round.

#bumpingalong aside, I have spent the last few days of my nesting getting my head around the forthcoming c-section, as I realised I haven't thought about this procedure the way I would have with my Crohn's ops. I'm not too concerned with the recovery part of the c-section because of having had previous abdominal operations, I'm pretty used to negotiating my way around with pain down that way (oh so glam). However saying that, I've never had to recover from a major op with a newborn. So will let you know how that goes!? It's when you let yourself think about what is actually being done though; cutting through the abdomen and uterus. But I just want what's best for baby; I am confident and happy with both the gastro team and midwives that have looked after me at my hospital. I'm in good hands and that's all I can ask for.

Whereas my Crohn's ops were a literal pain in the arse accompanied with hope that it'll calm down a wee bit and edge me to remission, at the end of this hospital visit we will have the most amazing little person in our arms; someone that we made and are ready to love unconditionally for the rest of our lives. This is why I am so excited for Friday - if not before - as it will be life changing in the most wonderful way and it's an adventure that we are more than ready to begin, as our own little family. Our own line on the family tree. A little unit of three ready to take on the world.

Now to make some more soups for the freezer. Mama's gotta eat.

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Planning a Planned Arrival

Can't quite believe we're so close now! We had our 34 week appointment today with the c-section doctors, which naturally got me thinking about how you plan for a planned arrival...

I'm very much in the stage of pregnancy where I am completely freaking out, my dreams are stupidly vivid, I can't sleep for baby movement and all I can do is worry about what lies ahead. Will I be a good mum? Will baby be ok? What actually happens in a caesarean? I've read a lot recently that confirms that all of the above is normal and of course it's good to share my thoughts because it's not unusual to worry. It's a huge thing, after all! We've made a human being. I'm just going to have to wait and see, as I can't get myself all worked up over the unknown (a mantra I lived by with my Crohn's).

But my appointment today made me a tad nervous; it's the same as with my Crohn's ops in that you essentially consent to everything and wait and see what we find when they open you up.

We had confirmation today that due to previous abdo operations, my Gastro team will be in the theatre with the c-section team, myself and my other half. Hopefully when they make the incision, my bowel and scar tissue haven't caused too much of a problem in which case the Gastro team can bid farewell and then we can get baby out in a routine way. If however it obstructs what needs doing to access baby, they'll do their bit and then let the obstetricians take over. A little revolving door of surgeons around my nethers, if you will.

Like with any surgery there are risks; although there's been talk of a stoma and colostomy beforehand when I had my resection back in 2013, I didn't realise that it could be something that pops up in regards to when I deliver my baby. I guess in my mind I kept my bum issues separate from my front bum bits. There are of course risks associated with a routine c-section too, with everything from wound infection and bleeding to a hysterectomy. So yes, I'm a little worried. But as I used to say with my Crohn's ops, I was just another bottom to them - and this is just another caesarean. We have planned as much as we can and all we can do is hope that everything runs smoothly! In 30 days time.

Now I'm officially on maternity leave (post following shortly) I am just going to put all my energy into nesting and try not to let my worries get the better of me. And I'm also going to avoid reading some of the shite on the internet about how a c-section is the "easy way out" and that I'm "not giving birth" as I've had my baby "surgically removed".

I'll have to get back to you on that.

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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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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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It's only been 2 years

And my hasn't it flown by?!

A brief update wouldn't go amiss, otherwise you're probably wondering why do I even need to start reading this blog? Who even is this rambling person that just pops up online after a two year hiatus?

Well that person be me, my friend. Harriet, off of Harriet's Got Crohn's that has now decided to be called Hattie online. Sure. Let me try it out. See if it fits. And so far, I'm quite the fan.

It would be easy to say I don't know where to begin, but then that doesn't really help much with an 'update' per se. So maybe it's best I do a quick run through on the Crohn's to get the medical bit out the way and then we can talk about all the fun things that have happened and are happening!

So...

Can't remember what operation number I was on when I last blogged, but I've now had 14. Most recent being another pain in the ass one in December 2015. Care still under the Gastro team at Guys & St Thomas' which is hands down one of the best hospitals I have ever had the experience of being looked after by. They couldn't be more aware of what's going on with me individually and when I'm there I don't feel like just another hospital number. I feel like a person.

To be honest, that's probably why I haven't felt the need to blog for such a long time as - although I haven't been well - I've had a much better support system from the people qualified to help me when I'm ill. And it took me moving hospitals countless times to realise that it shouldn't be an unusual feeling; to feel like you're being looked after when you need it, by the professionals who are there to help you. So yes. Still very much team Guys & St Thomas'.

Meds-wise, I still struggle with the whole Humira injections and have been told off many a time for bad adherence. So we're currently on hold with that whilst they see if Azathioprine can do the job on its own for a while. If it can, ace! No more spring-loaded pens into the abs of steel (ha! Who am I kidding?! No steel here) Will make sure I keep you in the loop with that one. Meds, not my six pack development as that is totally not a thing.

Talking all things body...you may recall a post or 9 about the weight gain from all the medicines I've had over the years. Well the heaviest I got to was 75kg. Now at only 160cm it doesn't take a genius to work out that I was past the point of plump. Then the fickle finger of fate stepped in and through another flare up I went back down to my natural weight of 53kg. Only problem was that it was in a period of three months - so all eyes on me from a medicinal point of view. Doctors everywhere. All the tests. But since coming off the multitude of meds my weight has plateaued and we're doing ok!

No remission officially as of yet, but hey, it's already been 7 years since diagnosis and no remission. What's another 7 or so!?

I think that covers it from a health point of view. I'm sure if it hasn't I'll be blogging about it now I have definitely got the blogging bug back whilst typing this *excitable scream*

Hmm. Now what else has happened since I've blogged last. Oh I don't know. OH YEAH. I GOT ENGAGED.

Officially a grown up. A Mrs-to-be.

All very exciting. All very romantic. Many things to plan. Many things to think about. So many wonderful things to look forward to over the next year.

And that's where the glamour of Crohn's brings you straight back down to earth; when you look at wedding dresses online and consider the ease in which you can go to the toilet toilet. What a bride I'll be.

But now you'll all be there as part of the journey, too.

X

Dusting off the trainers

So here's Jamie and I after the BUPA London 10k in 2010:

This was just over a year since I was diagnosed - and whilst I was still pretty fit because of uni - we decided to enter the race and raise money for Crohn's & Colitis UK (formerly NACC).

I would always say that at school I was a sprinter, as opposed to a long distance kinda gal. And anyone who knows me will agree with me when I say that I am NOT A RUNNER.

I think the fact that I bought trainers purely for the run underlines my lack of cardio activity haha. And going 'training' but taking my oyster card (just in case, obviously) probably didn't help much either... *hangs non-athletic head in shame*

But I did the race in 1hr 10mins and more importantly, I survived! Just look at the joy in my face!

Due to the amount of ups and downs that followed though, meant that I never really got a chance to monopolise on my new found fitness (!) however now that I am probably as close to remission as ever, it's time to dust off my trainers, get fit and get running!!

Would sincerely appreciate any form of donation; however big or small.

The race itself is on Sunday May 25th 2014 which gives me plenty of time to get training. Without my oyster card as back up this time.

You can donate in a variety of ways, as I'm sure you're all aware. But just to clarify you can do the following:

• Through our Just Giving page
• By clicking the widget on the left hand side of my blog
• Or text HSJD50 with the amount you wish to donate to 70070

Thanks so much for reading this and for your continued support with my blog.

You guys rock.

X

Snap Happy!

I have FINALLY worked out how to create a gallery for my blog!

I've put the majority of the photos that appear in my blog on the page, allowing you a closer look (if you want to anyway, as there are a lot of post-op ones!)

Available through this link or you can click the 'Gallery' tab across the top of the page.

Apologies if you're of a squeamish nature - but hey, ho. 'Tis part and parcel of Crohn's...

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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?!

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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...

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A&E Adventure

I went down to A&E yesterday.

Even when I was sitting waiting, I still did not consider myself a typical A&E patient. But means to and end, and all that.

I went down as I am still incredibly bloated and uncomfortable, and after calling my consultant yesterday I was advised to go to A&E to be seen.

So off I went; first stop the triage nurse.

I explained I'd had my operation back at the end of January, and she was appalled that when she looked up my file, the latest correspondence was my discharge letter dated 4th February.

I sat back down and waited for my name to be called, and then went through to the second assessment. He essentially explained I was in a stalemate: I wasn't an emergency patient, but he could understand why I was there and why I was so frustrated.

It drives me insane that I have had to jump through all these hoops to just be seen by someone?!

Anyway. 

He told me he would put me on the majors list where I could see a doctor and they could feel my tummy, then take it from there.

At which point my friend arrived to keep me company (I had been there nearly three hours at this point) and we took a moment to look at the craziness that is an Accident & Emergency department...drunks, vomiters, people who couldn't bend their knee but walked around the room anyway, a man that banged his hand on a door and had taken no pain killers but said he thought he might as well come down to A&E. The mind boggles.

Trotted through to majors when I was called and let the man have a good push on my stomach - I cried a little - but he said that from what he can feel, there isn't anything abnormal post-op to be worrying about. That in itself felt like the weight of the world had been lifted off my shoulders. If someone had told me that three weeks ago I wouldn't be so worried!

But he did say that he thinks there might be something else going on (didn't I tell you?!) and that I might have to change my medicine. Cocktail of meds, take 5.

Had my bloods and did a urine sample. Joked I might be pregnant - I'm not. Although at least if I was it would be a funny story to tell! And so off I went home...

Then this morning I was in a race with what seemed like everyone else in South West London, to get an appointment at my GP. I got one, so it was fine. But within 7 minutes from opening, all appointments for the day had been booked up. Madness!!

And I got called today from the hospital (shocking, I know) confirming my appointment for tomorrow at 12pm. Although I am paying a visit to P.A.L.S tomorrow, too...Patient Advice and Liason Services...as I have some complaining to do. Will let you know how that pans out!

But yes, went to see my GP earlier and the angel that she is, gave me a prescription for oral morphine. OH YEAH, MORPHINE YEAH.

She also mentioned that it is worth looking into Coeliac disease - and this isn't the first time it has been mentioned to me. So I guess it's another thing to add to my list to discuss with the doctors when I see them tomorrow and April 15th.

Just call me Multio Diseaseo haha.

(Quite concerned I've just got this photo hanging around on my iPad ha. But it's apt, so...)
((Check out the bags under my eyes HA-ha-horrendous))

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Underground Manners

So I'm eating lunch at my desk at work; classic mac and cheese (again), and I'm half way through my first working day. So far so good!

Well, that's if you don't count my tube journey this morning.

I think that Transport For London need to produce a badge similar to expectant mums' "Baby on Board" for people that are post-op after abdominal surgery. At NO POINT is it ok to be elbowed in the stomach, when you're flat against the wall anyway, and then be tutted at as if it's your fault you just happen to be standing there (!)

I don't think so Sonny Jim.

But unfortunately, I didn't manage to tell this woman what I thought...I just cried. I'm such a sap.

I was already nervous about travelling in rush hour as I haven't done that for a good while! And then I get Hong Kong Phooey-ed on my morning travels (another retro reference for you cartoon lovers out there - if in doubt, see below).

Moral of the story so far? Pad up and get even. Elbows at the ready!

Or maybe I should leave slightly later to miss the initial 'rush' part of rush hour.

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Home Sweet Home

Oh hi there. Sorry for the few days of nothingness.

Slowly been adjusting to being back at home...

Don't get me wrong, I bloody love it! But it's also quite a challenge, as you're very protected in hospital; things at the right height, a variety of bars to hold onto in the bathroom, your medicine brought to you as and when you need it. And obviously I don't have all of this at home, but I am fortunate enough to have an amazing boyfriend. Literally couldn't have done any of this without him.

They also said around 80% of my recovery will be done at home - so at least I know it can only get better?!

But for now, here's a brief round-up of what you've missed this week:

FOOD

Managed to have (and finish) macaroni and cheese last night. Also successfully eaten smooth mash potato with gravy. Everything else has been either jelly/custard/yoghurt/soup. On the plus side, have now lost just over 3kgs since last week...every cloud and all that. But MY GOD I cannot wait to eat a proper meal! I'm fed up of salivating over food adverts haha.

TOILET TIME

This, I've found the strangest. After a bowel operation, there's the natural expectation of changes in bowel activity. But apart from the few days last week (NG tube, and what not) my insides have gone right back to how they were; 5-6 times a day, and extremely loose. But I'm assuming that as I heal, this will change to a more 'typical' toilet time? As surely part of the point of my op was to help me have normal day-to-day activities.... Who knows? Only time will tell.

MY WOUND

Well this is looking ever so neat and tidy! I'm actually very pleased with how it's turned out. As it's not something in which you have a choice in the aesthetics, I was preparing myself for a mash up of scars on my stomach. But the surgeon has done a fab job, and hopefully as it fades over time, it will be part of a natural crease in my skin.

I also had the ten staples removed today. Very odd experience. I'm slowly getting feeling back in that area (as the nerve endings were severed) so only felt the last three staples being removed.

Still on my antibiotics for the collection they found under my wound - don't want to leave myself open to any complications. But with an outpatient appointment scheduled for a few weeks time, we are on the right track!

MY MIND

I'm also noticing that I have a mini mental battle with myself. In some ways it's harder being on bed-rest post-op, than it was being at home before my op. This is because to avoid boredom before, I would clean/tidy/general potter around my house. Whereas now, all I can do is sleep. Because cleaning/tidying/general pottering around my house will do more harm than good.

All in all, just need to get used to general movement as each muscle slowly kicks back in, and my nerve endings stand to attention. But already noticed how each day genuinely makes a difference. 

Will try not to leave it so long before I post again...

X

Operation: COMPLETE

As you know, I was hoping to keep up to date with writing down how I was feeling whilst I've been in here. Except that was more difficult than I imagined as I've essentially slept most of the last two days.

So here's a recap of what I can remember since Monday...

Monday

 

7am and we arrive at the Surgical Admissions Lounge. I get told I'm last on the list - but there were only three people in total for gastro surgery, so that wasn't too bad! 

However I didn't get to go down until 3pm, and needless to say by that point I was absolutely starving and in desperate need of a glass of water. Turns out I could have had water up until midday, but no one checked as to when I'd be going down until it was too late for me to drink anything.

 

I'm now gowned up, holding my man's hand in the lift as we descend down to the operating theatres. Turns out he could only step out the lift with me, as he wasn't allowed through the double doors: cue brief mini emotional breakdown, cuddles and lots of "I love you"s. 

Luckily I had such a LAD of an anaesthetist. I asked if they could prolong that floaty feeling before I started to panic/get knocked out. And that he did. Nice one Mr.

Woke up about an hour and a half later in recovery in excruciating pain. I was awake enough to have a sneaky peak into my gown...and there was no scar down the centre! Wahoo! But I was still in a lot of pain so they got me hooked up to the PCA machine asap.

After a four hour wait I finally got to go up to my ward - spaced out of my brain and very emotional - ready to just crash out and sleep.

Tuesday

 

Had a really difficult night's sleep. Woken up every hour for observations and then needing to press my PCA button to knock me out enough to fall asleep again.

 

The good news is that I had my first set of visitors coming in the evening and I also managed to walk to the toilet twice (despite the crippling pain) 

I also got to see the pain team and my surgeon. The pain team agreed that I could stay with my PCA machine for a little while longer *phew* and the surgeon gave me the full details of what I had done in theatre...

• I have had four inches of my bowel removed; a resection as opposed to a strictureplasty
• I have had my appendix removed (?!)
• No need for a central scar as they could do all they needed in my right hand side
• There is no ileostomy bag as they were able to do what they needed, without putting in a stoma

All in all, I'm pretty pleased with what I woke up with!

 

Despite drifting in and out of sleep during Tuesday, I got woken up to have my dressing changed. This was going to be the first time I saw my actual scar.

*SQUEAMISH ALERT*

And here is the beauty...10 staples and straight across a very swollen and tender abdomen...

I've also realised that I now find the most simple tasks very tricky and painful. And I have to remember that it's ok not to push myself too hard. This is because I've needed oxygen every time I sit back down....I'm such a doofus. Just need to take things slowwww.

 

I felt very nauseous last night though. I don't know if it was because I had a bowl of custard? (This was one of the first things I was recommended to eat since Sunday). Or if it was the over-use of my PCA machine haha. Either way, yuck yuckity yuck yuck.

Wednesday 

Better night's sleep last night. Only woke up three times and managed to sleep through to 7am. Go me!

 

As it stands, I am now on free fluids (instead of just sips) and this includes tea, coffee and soups. Awaiting some soup for my lunch, but I'm not confident that this will go well based on my custard escapade from last night.

 

It's still tough in here though. And I quickly learnt that crying doesn't help my pain. And also headbutting my lampshade will also increase the amount of pain in my stomach. Stupid reflexes and muscle tensing.

Until next time my lovelies...I best get back to my bed-rest.

X

1 day to go

So it's almost time; tomorrow is almost here.

I packed everything yesterday, so I could spend today relaxing and trying not to worry about what's happening tomorrow. And I realised that getting ready to go into hospital is very much like getting ready to go on holiday - albeit I will be on my way to the Surgical Admissions Lounge in the early hours, not the check-in desk at Heathrow.

You have to plan what clothes to take with you. You have to know what toiletries you need. You put aside some reading material. Update your iPod with relaxing songs. You have a shower, wash your hair and shave your legs...

 

See? Very much like holiday preparation.

 

But as you all know, I'm not going on holiday.
 

I hope you don't think I sound shallow or vain for plucking my eyebrows, shaving my legs or straightening my hair before I go in tomorrow. But for me, these are my little bits of normality that I am not going to have for a while. And if it makes me feel better knowing that my shins are as smooth as a baby's behind, then so be it.

 

I am praying to God that everything goes as well as it can for me before, during and after my surgery. But naturally I am also worried. I'm shitting myself, (although not literally speaking). 

 

I'm so scared. I'm scared I might get a perforated bowel. I'm scared I might not wake up. I'm scared that even if it goes well, it's going to take me a very long time to feel like me again.

 

I know these are all normal thoughts, but it's a bloody weird feeling. Because I totally know it is to make me better and put me on the path of remission for my Crohn's. But it's also incredibly overwhelming when you just sit back and think about what's actually going to happen to me...(though some parts are still quite vague!)

 

But don't worry about me guys. I'm allowed a wee blip at times. My mind is very much full of Positive Mental Attitude as well! 

So it is time I bid your farewell for now, as I enjoy my last night of freedom before the fasting begins. 

Wish me luck!!

X

Arse, Bottom and Bum (squared)

For all those mathematicians out there, you may have noticed I wrote three different words for your backside, followed by 'squared'. That's because...

3 x 3 = 9

And 9 is the number of abscesses I have had over the last three and a bit years.

The only way to talk about these lovely little lumps and the pain/trouble/embarrassment they've caused me, is to give you a brief overview of some of the more memorable ones.

August 2008

This was the first abscess I had, and will always be the most memorable - not only because of the pain before, during and after - but because I was having to self-pack the open wound when in Cuba with the man. Oh and whilst in Cuba we got stuck in Hurricane Ike. First time the resort had been hit by a hurricane in 45 years...not ideal!

Once an abscess has been drained, it must be packed with what I named wadding. Think of it as a cavity in your tooth; it must heal from the inside out to avoid further infection, so less wadding must be put in each day. FACT: This is because skin heals faster than tissue.

The pain is indescribable. It's simply awful. I don't know if it's because it is unnatural to have medical tools digging around in your body tissue when you're awake, or if it's because they were perianal abscesses. (Hopefully I won't need to explain exactly where they were...? I'll give you a clue: perianal)

But I got through it and back to uni and continued my investigation into why I got this little bugger in my bottom.

June 2009

This was my second abscess in a matter of months. The difference with this time was I knew I had Crohn's and they were able to tell me that abscesses were something that I was going to be prone to. 

However I soon learnt that what happened back in August with the medicine, was going to be a pattern that kept repeating itself: "Take the metronidazole, the lump will stay but the pain and swelling will go." YES. YES IT WILL....NEVER. Here we go again...

August 2009

This one is memorable because it was so close to my kidney op. And it was also the one where my surgeon at the time (from Chelsea & West) decided the best course of action was through surgical intervention and to place a seton inside me.

For ease of understanding, a seton is a surgical-grade cord which (in my case) went through my bum hole, threaded through the fistula embedded in my pelvis and came out of my bum cheek. This was then tied together and gravity (?!) would pull the wire up towards the surface. Ta da!

The aim is to allow healing of the fistula without too much interference, as too much prodding down there could lead to incontinence. This was obviously not something I wanted to be worrying about! "Oh I need the toilet...ahh it appears I've already been."

I got told I would have the seton in for around 3 months, where they would then remove it and all would be well. Except I got another three abscesses whilst with said seton, which meant me and my wire were together for around nine months.

May 2011

Now this has to be my favourite of all the abscesses, because the circumstances are so ridiculous.

I knew I had an abscess and was back on metronidazole, but I also had a weekend in St Ives planned with one of my best friends and decided I was going to go, whatever. And what was to say that this time the meds wouldn't work? I had a longer prescription, I felt better in myself, I had high hopes.

So we went out for dinner and I knew on the walk that things were not great. Skip a few hours and I'm throwing up blood in the toilet, my best friend's on the phone to the ambulance and I have an ass throbbing like I'd had the skin ripped right off me.

Cue operation #8 down in Truro A&E and an odd phonecall to your boyfriend (who's currently in Bristol) to tell him you're about to have more surgery....in Cornwall. On the plus side, I did learn that St Ives is probably one of the most relaxing places to recover. And I also got a spontaneous mini-vacay as the man came down to see me. What a marvellous ending to an unusual (and extended) weekend away!

Last but by no means least...September 2011

This was my last abscess operation where they found that I actually had two fistulae and they were able to lay open the one closest to the surface. And it seems that that was the one that was causing me problems as (touch wood) I haven't had another one since. Yeahhhhhhh!!

I realise I've basically mentioned them all! But as you can gather, I pretty much had an abscess encounter every three months from June 2009. It's been exhausting.

Without ending on a bum note (pun intended) that's the end of my abscess recap.

Hope it wasn't too detailed for you haha.

X