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 

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.

X

*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!)

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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Thirties

We are 30 weeks pregnant. THIRTY. That only leaves 8 weeks until we're booked in. Whatever happens in the coming weeks we will definitely have a baby in 59 days.

Had a bit of a tricky weekend and subsequent morning today, mind. Heartburn still causing me grief - so much so I vomited on myself in the shower from burping. Nice. My Braxton Hicks are certainly getting stronger and making it much harder to stand up straight when they're present. All part and parcel of entering the 8 months preg club I guess!

However what I wasn't expecting this early was to lose a little bit of my plug.

There's no way to discuss it without being gross, so if preg detailed talk is too much, scroll down to the safe zone my friend...

Naturally, reading up on your mucus plug isn't the most pleasant of topics but something that needed to be done when you see what can only be described as a blob of clearish snot where it shouldn't be. A quick phone call with my midwives confirmed that as there was no pink in colour or blood, labour isn't imminent (can be anything from a few hours or few weeks if the full plug, or 'show', has happened). But that it does sound like some has come out and to keep an eye on things down there, rest up, etc.

Now I'm contending with pressure in my nethers, knowing baby is head down and that I'm without some of my plug. Please don't try and leave just yet oh miniature one! I haven't even packed your hospital bag!

*SAFE ZONE*

Needless to say there will be a delayed #bumpingalong picture as I am not wearing anything that's publicly acceptable; pants, t-shirt. A for-my-eyes-only vibe. I did manage to shave my legs all on my own though - except now they look like sausage meat.

So quick catch up on our first antenatal class last week for you: it was all about Intervention & Caesareans, the latter being the main bit for us. Hearing about being induced and seeing some of the tools used made my tummy go all funny. Yet strangely, talking frankly about the proceedings in a c-section didn't really phase me. I guess it's because I've had 14 ops with my Crohn's so a surgical set up is almost more favourable for me than a natural one!? Surgical is my natural set up.

Tonight's class is all about boobies. Well, officially Feeding Baby. But breastfeeding and bottle feeding, I believe. I've tried to get a bit of a head start and started reading 'Breastfeeding Made Easy' by Geraldine Miskin as I'd love to be able to breastfeed my human that I'm growing. I am aware however that it's not something all mums are able to do, whether by choice or otherwise, so I don't want to put pressure on myself if it turns out that my boobies can't do the feeding.

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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

Junk = Rubbish

I genuinely do not even know where to begin:


rambling
adj

1. straggling or sprawling haphazardly; unplanned: a rambling old house
2. (of speech or writing) lacking a coherent plan; diffuse and disconnected
3. (Botany) (of a plant, esp a rose) profusely climbing and straggling

No, I haven't suddenly become a plant or an old house. But I can sense this post will lack a coherent plan, for want of a better phrase. So apologies in advance, dear reader, as this post will contain a disorganised rant about what I saw on BBC Breakfast this morning (18th June). Mainly because I'm still super peeved by some of the content.

For all you IBDers in the UK, I'm sure you would have heard about the segment that appeared on National breakfast television this morning. And if you're still not aware, let me tell you a bit about the ridiculousness that is Dr Sally Mitton...

"If you have a lot of junk food in your diet before your diagnosis, it actually makes you more likely to develop Crohn's disease...a lot of antibiotics - particularly in younger life - seem to be more likely to develop this condition."

Yep. Ignore everything you've ever been told/read/researched. We all ate bad food as a child, and lo and behold...CROHN'S DISEASE. FOR THE REST OF MY LIFE.

Lets look at the stats first - as I found this really quite concerning. In the year 2003/04 there were 4937 reported cases of young people being admitted to hospital with Crohn's disease. In the year 2013/14 that number had quadrupled to 19,405. In a decade?!!

Obviously I am all for raising awareness of IBDs in the public domain. If I wasn't, I wouldn't blog, tweet, post on Facebook, Instagram and do every other world wide web option. Let alone be as vocal as I am about with my peers. However, the most important thing to remember is that if you're going to put it on a platform accessible by many, i.e. BBC Breakfast, then perhaps make sure that the information being given is correct? And if it isn't correct (because you don't know), don't suggest or assume things. It only compounds and makes it a hell of a lot harder for us to clear it up.

For a gastroenterologist to make such a sweeping statement as she did? I was genuinely dumbfounded. Granted I had not been awake long and was still sleepy. But when I saw her talk I shouted at my TV and immediately burst into tears. Lord.

I just couldn't believe what I was watching?! I tweeted about it and since then, my Twitter has gone nuts. It really has struck a chord with a lot of people.

And I think (unfortunately) that although Crohn's and Colitis UK went on BBC Breakfast to raise awareness, they're now going to have to help us IBDers in the real world, clarify exactly what we go through. Don't tell me that at the age of 26, something that I ate when I was 7 has given me this disease.

I'm not having that. Not at all. If that was the case, there wouldn't be any bloody junk food available for the fear of people developing Crohn's. Utter shite. All of it *slaps keyboard*

Look at me when I was 18. That is not the body of someone who's eaten all things junk food. That is the body of someone who's intestines have gone mental and started attacking itself. But the beauty of hindsight is that I was ever so blissfully unaware. Although in a weird way it's something to marvel at, for all the wrong reasons...I just look really odd; all mouth with a small head and a skinny little bod.

As David Barker of Crohn's and Colitis UK said;

"We need to do more research into these areas to better the understanding of the disease."

And when the suggestion of junk food and antibiotics was brought up again, he verbally slapped it down with what we all were thinking, in that "the reality is, we don't know."

If you missed the news this morning, or want to get riled up again (like I have most definitely been guilty of this afternoon) you can see the full clip here: Crohn's on the BBC

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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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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

Blur

Today has been a blur of exhaustion from last night's insomnia, Tramadol-induced sleep and bloated pain.

Looking at the photos below it's obvious why I was allowed a seat both in and out of London this morning.

I say this morning...as I went into work as normal, and realised that I really shouldn't have bothered; I was so bloated and hadn't even eaten at this point, and was running on under 4 hours sleep. My insides felt like they were about to burst and I already felt emotionally drained - all before 10am.

(I would also like to clarify that there is definitely not a baby in that tum of mine!)

So back I went, homeward bound and waiting to hear from the GP as they had no appointments left.

They have managed to chase my surgeon and get my appointment brought forward to next Wednesday (yippee!) but I know there's not much anyone can do in the meantime. I also know I'm not an A&E case. So when the on-call doctor called me back today I just wanted to know if there was anything I could do to feel better.

She told me to rest and prescribed me some peppermint oil capsules, and got told to buy Buscopan and the like, to help relieve the bloating symptoms. Thing is, mine is part of my Crohn's and so there's no guarantee that any of these things will help...

To help with the pain today I took paracetamol and tramadol which I was given when I was discharged. I don't seem to have any problems with tramadol, apart from a handful of weird side effects, for instance:

• The feeling of being totally and utterly disconnected and spaced out from the world. 
• Having the itchiest nose of all time. 
• Tiredness. 
• Hot sweats waking me up. 
• Biting my own tongue in my sleep. 

Last one concerns me!?

So that has been my day. Kind of sucked ass. Made me fed up and weepy. Frustrated. Again, that word which seems to pop up ALL the time.

But onwards and upwards and here's hoping some over-the-counter stuff will help me feel more comfortable. Then I can concentrate on preparing myself to give my surgeon a bloody piece of my mind come Wednesday.

X

Bloat... Moan... Bloat... Moan... Moan... Bloat

I literally feel like I'm going to burst.

This is what I was dealing with in the middle of the night, last night:

And no I wasn't naked. You just couldn't see my legs because there seems to be a slight bump in the way. And by slight bump I mean massive flamonge.

After posting it on Twitter (out of boredom and also out of the hope that someone will be able to say what's going on) I had a few people message me to say that even after their bowel ops, they were yet to experience this rotund being that is my bloat and that I should demand some answers/more info from my doctors...[thanks @HayleyShort and @Johnbradley1]

In my last post I explained that I'd been to see the GP and that I was trying to get hold of the surgeon's secretary to get my appointment moved forward so I can be seen.

Well JOY OF JOYS, that has happened. My appointment has been moved forward to 3rd April. It's not like that's almost a month away.........oh wait. It is. And I am not totally comfortable with being one big ol' bloated mess for another 3 or so weeks.

Problem is, I'm not yet at that 'terrible' stage where I would class myself as in need of A&E. But if push comes to shove and that's the only way I'll be seen sooner, then so be it.

I just think that it's quite frankly, bloody ridiculous that I am having to find ways to sneak into the system. Driving me nuts. Uh oh pistachio. (NUT PUN)

To be proactive I have since decided to email my bloat to my GP in the hope that as she has a medical title, she may be able to get somewhere with this whole thing. Will keep you posted!

Do any of you IBDers get bloated like this? Surgery aside. As I seem to have gone back to how I was pre-op, and I wouldn't have known I'd had the operation if it wasn't for my newly acquired scar...

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

A bum on my tum?!

As you know, I had the stoma nurse yesterday and I came home with this lovely mark drawn onto me in permanent pen...

So it seems that it is extremely likely I will be waking up with an ileostomy bag. IT'S IN PERMANENT PEN FOR GOD'S SAKE! And this will be my site marking for the surgeon when I'm knocked out cold on the operating table. To make sure it doesn't disappear before Monday I was entrusted with a faithful Sharpie pen, which I am having to use to colour in my new mate a few times each day.

I also learnt yesterday that my incision is not where I thought it would be; it's going to be down the centre as opposed to the bottom right of my abdomen (similar to an appendix scar area)

I am also using this weekend as an opportunity to eat everything I'm not allowed to eat when I'm out of surgery (as they could cause problems/blockages with my bag). That includes:

• Onion
• Tomatoes
• Asparagus
• Popcorn
• Garlic
• Peas
• Winter root crop vegetables
• Cucumbers
• Lettuce

There is a whole other list of foods which I will have to slowly introduce back into my diet - as my stoma nurse put it "you will have your bum on your tum."

She also explained how some of her patients get quite attached to their stoma and give it a name; I am open to suggestions!

Getting very nervous now as there's only two days to go! I am sort of teetering on an emotional edge haha. But I will be fine.

Ahhhhhhhh! 

Will post again tomorrow as my final post pre-surgery.

Hope you've all had a lovely weekend, and thank you for the continued support by reading this.

X

3 days to go

I'm struggling today. Not sure why, nothing in particular has happened. Just feel a tad weepy and down in the dumps.

I know I'm nervous about going to the stoma nurse later, but I think because it's also my last appointment before my surgery. Plus I know then that all I have left to do is get my stuff together and get packed for Monday.

I asked if I needed to bring anything with me to today's appointment. She said I could bring a favourite item of clothing in case they can work around it. But to be honest, my wardrobe looks like it belongs to someone in their second trimester of pregnancy...so that option is null and void.

This is because I have, what I call, my Bloat née Flamonge.

It never leaves me, it's got me seats on the tube and on buses. And if my operation is a success and my bloat departs, in a weird way I will really miss it!

To cheer me up, I am bringing moral support to my appointment in the shape of my very good friend. When we are together, there is many a spontaneous burst of song - and I feel this is the best form of company as there is a high chance of tears again (...from me, not her...obviously)

I've also decided that as wifi is unlikely in hospital, I am going to write down everything I'm feeling anyway and upload them onto here when I'm discharged or have Internet access - whichever one comes first. So there may be a little while from my last post on Sunday. Apologies in advance!

Will let you know how I get on later.

Ta ta for now.

X

5 days to go

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

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

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

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

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

My turn to ask the questions...

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

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

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

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

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

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

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

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

X

I'VE GOT A DATE!

Hooorahhhhh!

I have finally got an actual date for my op! *dances around the room*

I knew my op wasn't far off, as I was told that I could always go through A&E this week and get seen that way (effectively cheat the system), especially after the amount of time I've already had to wait.

But I found out today that I am booked in for next Monday 28th January.

All systems go for pre-operative assessment this week and another trip to the stoma nurse on Friday.

Then...It. Is. On.

X

It never runs smoothly

And by this I am referring to elective surgery.

I know I've only just started telling you all about Crohn's and me, but as I have a lot coming up I feel you guys need to be up to date!

So...

The general process for the mind goes something like this:

1. Finding out you need surgery 
2. The planning of said surgery 
3. The appointments leading up to surgery 
4. The amount of people you must speak to in order to find out when you'll be having the surgery
5. Learning to hang up before you scream ungodly words at strangers from the Admissions department
6. Maintaining the patience of a saint and the organisational skills of the Queen's PA

As I mentioned before, I'm due to have my tenth Crohn's operation in a matter of days - yet it seems to have been an almighty struggle getting to where I am now...

It was way back when in October 2012 and I knew I was having a bad flare up.

Feeling so lethargic; just getting to and from work was proving difficult because I had no energy. Then there was the time I sat on the work toilet floor throwing up any contents I had inside me. Needless to say that wasn't one of my finest moments. And of course the inevitable poos.

I went through the motions of GP, steroids, see how you go. Except this time nothing changed. So I changed the dose and strength of steroid. Still nothing changed.

Now I find myself in the outpatient department of St George's in Tooting (NB: transferred hospitals after my 9th abscess op. All shall be revealed later on in a dedicated post just to talk about lumps in bums) but it seems the best thing to do is have a blood test and an ultrasound to see what's going on inside of me.

In a nutshell, to quote my hospital letter...

"Her recent oral contrast ultrasound scan showed a stricture of around 9cm in the terminal ileum which narrows to 4mm"

That's right kids! What I consume has got to get through 4mm in order to continue its journey to my bum hole. On the plus side (I guess) at least I now know why it's near on impossible for me to do what is considered a normal poo.

So to fix this I get told I will need an operation.

My mindset translation for that moment in time
Totally ok with this (cue emotional breakdown)
I've had ops before (but not one this big)
Everything will be fine (course it will - please sense the sarcasm)

Was supposed to have a strictureplasty through open surgery at the end of November. But only found out last week that my operation is approaching *rejoices* after months of being 'urgent' and on top of a list, yet never seen by the surgeon. Talk about stuck in an admin rut.

And that's where I am now.

It's a funny old thing, knowing you're going to have your biggest operation to date. Hoping it's going to be life-changing for all the right reasons.

X