Returning of the Sandwiches

You may recall my comparison of a ham sandwich in a service station and that of buying maternity clothes, a few posts back. And then how I said I'd do a separate post on the asos haul because, FASHION.

Well essentially this is it - but it's more along the lines of how clothes online don't always look like that in real life. Duh. So I am returning aforementioned ham sandwiches - not all of them mind, the snakeskin booties and polonecks made the cut, as did a white shirt.

That is me in the white shirt.

It's maternity and quite sack-like but it's very comfortable. There's something about a classic white shirt that makes you feel a bit back to school, but alas it's probably one of my favourite items in my newly reformed capsule maternity collection.

As I mentioned before, maternity clothes aren't cheap but there is a definite requirement for them. I've decided to refine my approach to the sartorial challenge and wear as many non-maternity items as possible whilst I can. And only buy maternity bits because the non-maternity equivalent just won't do; for instance, jeans or bras. This is also because I'm starting to realise that I need to easily get my booby out when the child has arrived and my money would be better spent on a nursing bra and shawl, compared to another jersey dress that clings onto the bump in all the right places because it says maternity on the label.

The next black hole of mama fashion that's crossed my mind - albeit way too early: maternity wear postpartum.

I am very much 'just bump' so far in my pregnancy, and bearing in mind how much my body weight has changed over the years with all the different meds and generally my Crohn's Disease, I was ready to expand everywhere. I'm also aware that when my baby comes out of my body I expect to look down at my newly scarred tum and see a somewhat deflated balloon (a final visual for the pregnancy wind, perhaps).

Like I've alluded to before, I am in utter awe of the body and what it does during pregnancy and I don't see why that would change once the miniature person is out of me. If anything I think I'll be taken aback even more so. Because they made it out. The human will be out of my body and in my arms. I don't want to feel the societal pressure of snapping back a la every single celeb in the sidebar of shame on Mail Online. Your body changes for 9 months so I'm expecting at least 9 months for it to return to its 'normal'. And if it doesn't, who cares?

On that basis alone, I imagine that me and my maternity jeans and booby-bearing nursing bras will remain pals for a good while after birth. And that is fine.

I've still got a lot to do before then anyway. You know, like stay being pregnant for another 12 weeks and survive this mini heatwave again.

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Dr Mitton's Response

Kirsty Bruce - one of the many proactive IBDers - emailed Tom Smith, the Chief Executive of the British Society of Gastroenterology after the initial #junkfood debacle and today received a reply.

Saw it on Facebook and asked if I could share as it is definitely worth a read!

I thought you'd like to see the text from a statement that Dr Mitton has released this morning. See below. 

Tom Smith 

----- 

20th June 2014 

First and foremost I would like to apologise for the distress that I have caused by what was shown on the BBC to all Crohn's Disease and Ulcerative Colitis patients. I was unable to respond more quickly to the reactions to this report due to very heavy clinical commitments. I feel that what I said and the subsequent coverage has been misinterpreted and I would like to clarify this now. 

I said that Crohn's Disease occurs in those who are genetically susceptible and that the unexplained recent increase in numbers diagnosed amongst young people in the UK is likely to be related to lifestyle. I did mention pre diagnosis diet and multiple courses of antibiotics as possible factors preceding the development of overt disease in some cases. I did not say that junk good or frequent courses of antibiotics CAUSE Crohn's Disease. I am very aware there are many patients with IBD who eat a very healthy and nutritious diet and have always done so before their diagnosis. 

However, since the initial report on 18th of June there have been subsequent newspaper and television reports that focus on the assumption that Crohn's Disease seems to be "caused" by junk food and multiple antibiotics. This is not my belief and is a distortion. 

I did not mean to imply any element of self-infliction and I am appalled to think this could set back public perception of IBD or that sufferers might be blamed for their own pain and misfortune. 

I would like to sincerely apologise again for the distress that my comments have caused. 

Dr Sally Mitton
Consultant Paediatric Gastroenterologist

Make of that what you will, but like I said, wanted to share with you all.

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And so it begins...

Well hasn't today's press been full of hard facts re IBDs?! How about noooooo.

Without going into detail again (as yesterday completely and utterly drained me) here are the links of what I've come across in the online media today:

Daily Mail - "Junk food blamed for soaring rate of Crohn's disease among young"

The Times - "Junk food and antibiotics blamed for rise in Crohn's disease among young"

The Telegraph - "Crohn's disease in teens jumps 300 per cent in 10 years fuelled by junk food"

And what was in this morning's Metro:

Good morning to you, Dr Mitton's lies. It's been so long!

I have a feeling that this will be ongoing; but hopefully in a positive way, and the backlash from IBDers is publicised as quickly as this misinformation spread.

I was having a conversation on Twitter last night and the point was raised in that surely the figures will have risen so dramatically due to more people being aware of symptoms...not being afraid to seek medical advice. But we all know what Dr Sally Mitton thinks.

So onto this evening where I am momentarily stepping away from the #junkfood madness and hoping, willing England to win against Uruguay.

COME ON BOYS!!!!

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Junk = Rubbish

I genuinely do not even know where to begin:


rambling
adj

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Ring Ring

So I have a telephone assessment tomorrow. For my mind.

This makes me nervous but it's all for the right reasons!

I just have to hope I'm not on la toilette at the time of the call - as my body doesn't like an interruption to its own schedule...

Haha - taraa for now!

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Mind Games

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

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

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

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

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

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

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

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

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Pure Rage.

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

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

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

I'm close to punching my computer in frustration.

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

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

Well it's a no from him!

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

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

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

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

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

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

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

Thank you ever so fucking much for absolutely nothing.

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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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Scan Ramblings

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

And so we begin...

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

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

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

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

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

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

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

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


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

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

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

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

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

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

In Other News

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

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

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

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

X

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

Nothing to report...

Here's me...

Still bloated as ever, just sitting down this time.

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

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

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

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

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

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

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

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

Is that really too much to ask?!

*****

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

*****

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

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

Bloody side effects.

Haha, if only.

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Dead End

I don't even know where to begin, guys.

I had the hospital last Wednesday, and genuinely thought I would get somewhere with regards to the administrative fuck up. But alas, t'was not meant to be; I didn't even get to see my surgeon.

I saw his registrar. Yes, I'm sure he is a very pleasant man, but he is NOT who I wanted to see and he also had little to no response when I asked him questions. Very unhelpful.

When I asked why no one had been in touch he explained that unless there is a complication in surgery, they see Crohn's patients one year after discharge. That's all very well and good, except he was looking at my discharge letter which clearly stated that I must be seen within six weeks. So I am still without a decent explanation.

This has lead me to visit P.A.L.S in person (more so they could physically see how distressed this is making me - as crying on the phone doesn't help much because I can't speak!) but also so I could see how I go about complaining.

Now, if you don't know me...I'm not really one to kick up a fuss and complain...until now. As the way I see it is this: I don't want this to happen to me again, and I certainly don't want it to happen to anyone else.

After speaking to a lovely lady I met in hospital when I was in for my surgery, it appears she too is having similar problems with the surgical team/aftercare. So we're going to buddy up and make sure our problems are heard. Hear hear!

I am also trying to see if I can get my consultant appointment brought forward from April 15th, as this bloat is tooooooooooooo much. It's breaking me down, both physically and emotionally and I'm teetering on the edge ha. More about that in another post though!

So there we go.

All something and nothing.

Just hope that it starts to improve.

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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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Torso Envy

I'm strangely nervous about admitting this to you all: I have torso envy.

Whether it's friends, family, strangers on the underground, people I walk past in the street, my monthly magazine...I look at their torsos, more specifically their stomachs. 

I'm envious of people who don't have a bloat. And when they say they do..pfft darling it's a mere molehill compared to my mountain. But it's not like I am yearning to be a size 6 or anything, because even a Kardashian can still rock those curves and reignite my torso envy.

But I don't have a curvy figure. Never had. I'm lost in a womanly limbo. And now I'm constantly round on the front as well.

As a brief background for you, I danced ALL THE TIME. From the age of 3 up until my last year of university. Sometimes it was 6 days a week. I never had to worry about what I ate, what it may or may not do to my body. How my figure was shaped. But obviously Crohn's changed this. And that's ok.

It's ok because shortly after diagnosis I read John Bradley's "Foul Bowel". And it was so helpful. Taught me to look at Crohn's with a whole different perspective; treat it like an arranged marriage: I didn't ask for it, but I have it and need to adapt. I can't look at what I once was, as I won't be that again. And that is what I have done.

But it still doesn't stop your mind wandering off and perving on ladies' stomachs... #awkward.

Sad thing is, I'm writing this whilst I'm on the tube and I'm close to tears as I reminisce how I once was and how little I had to worry about ha.

*****

It's now night-time and I am still just as bloated and exhausted. I'm fed up and I've broken. It has brought me to tears.

Can honestly say I didn't think there would be a moment where I am so empty - through stress and worry - that I physically break down into tears whilst stirring my baked beans in a saucepan. 

As you all know I have the hospital on Wednesday to see my surgeon.

I am tempted to see if I can get a sneaky appointment with my consultant beforehand; I am worried that I'll walk in so pumped up and ready to complain, that I will essentially just burst into tears and not say anything I want to.

They simply must understand how much they've messed me around and how that effects me as a person - I'm not just a hospital number.

I also have a frazzled mind as I am convinced there is something else going on inside me. Going on the NHS website and typing in 'bloat'...only IBS (Irritable Bowel Syndrome) comes up. Nothing to do with Crohn's.

It's becoming increasingly clear after my op that the pain and the constant bloat are too much at the forefront for me to ignore. And it is starting to piss me off, as I can't seem to do normal day-to-day activities without something happening.

Call it women's intuition. Call it a gut feeling. Either way, I just know things aren't ok and I want answers asap. But I do definitely still have Crohn's haha.

However, I've learnt from before it is best to stop your mind wandering off to places it doesn't know, because then you worry about worrying about something unknown.

I am the human personification of "The Never Ending Story"...and I'm sure I'm not the only one, unfortunately.

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Follow Up = New Patient...obviously

 sec·re·tar·y
/ˈsɛkrɪˌtɛri/ Show Spelled [sek-ri-ter-ee]  

noun, plural sec·re·tar·ies.

1.

a person, usually an official, who is in charge of the records, correspondence, minutes of meetings, and related affairs of an organization, company, association, etc.: the secretary of the Linguistic Society of America.

2.

a person employed to handle correspondence and do routine work in a business office, usually involving taking dictation, typing, filing, and the like.

 

 

Apart from looking up the definition of what a secretary is supposed to do, there's not much to report unfortunately;

 

Still have an appointment on 3rd April.

GP still hasn't heard back from my surgeon/his secretary.

Still bloated as hell and waiting for my appointment to be brought forward.

 

The only information that has come to light yesterday, is the reason for the lack of urgency with regards to my appointment: I was down as a new patient. Not a follow up. Even though my discharge notes stated that I must be seen within 6 weeks - if not before.

 

If it wasn't for a stubborn GP receptionist ringing the hospital on my behalf, I doubt I'd even have that nugget of info...

 

Begs the question, if I didn't pester them in the first place for an appointment, would I even have my one on 3rd April?!

 

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...

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Oh Monday, Monday

I completed my first full week back at work. GO ME.

And naturally, I was feeling a tad sleepy and the like, towards the end of the week...(may or may not have cried a little in exhaustion on Friday afternoon at my desk) but also had a spot of bother in the pain department.

Welcome back Bloat nee Flamonge. That didn't last long.

Seems my bloat can't bear to be apart from me for more than a few weeks. Orrrrrrrrrrrr it's down to the fact that all is not well with my insides - still.

*cue violinist and their sympathetic melody*

So I popped along to my GP yesterday as I wanted to be told I was unnecessarily worrying and all is well. Except after a feel of the ol' tum, it appears that my infection collection (new phrase) has returned and I'm back on antibiotics. Same ones as when I was discharged.

Apparently they can give a false sense of security and that I can feel good, when internally I'm perhaps not. Which is why I need to have my post-op surgical review brought forward to within the next week.

WHICH WOULD BE ABSOLUTELY FINE IF I HAD A LETTER WITH SAID APPOINTMENT IN THE FIRST PLACE.

But I didn't/don't/probably won't.

Welcome back admin rut. Again, that didn't last long.

This has since led me to ring the surgeon's secretary - who's job title suggests she does secretarial work, I don't know, LIKE POSTING LETTERS TO PATIENTS!! And apparently I am supposed to have my appointment within 6 weeks of being discharged. Granted, I am yet to reach this 'deadline', but according to Ms Useless McUselessness, I'm not even on the system for follow up. HOW?! But it's all fine, as she will "let Professor Kumar know you called" Ok. Sure. Fine. Whatevs.

The reason why there is an element of urgency with being seen is because:

1. I am rather bloated (so much so, there will be a post following this one to discuss it)
2. I am in quite a bit of pain
3. My wound and the surrounding areas have gone hard
4. According to my GP there is a vast amount of heat coming from the wound itself

All of which leads her to believe there may in fact be a little old leak. Deja-bloody-vu.

My mind would be ok with all the shenanigans if the CT Scan I had in hospital actually had a conclusive result. Alas, twas inconclusive. So we just don't know.

All I can do for the time being, is a spot of positive mental attitude in the hope that meds will sort me out.

Ta Ta for now...

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