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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Tongue Biting

I have a love/hate relationship with Tramadol.

I love it because it takes away the pain. I hate it because the side effects are getting out of hand.

I was off work again today as my bloat, pain, poos and exhaustion were all still hanging around (shock) so I decided today needed to be a bed day.

Also helpful being in bed as Tramadol makes me ever so sleepy...but as I said yesterday, I seem to be biting my own tongue in my sleep. And my god, today I clamped down so hard I made it bleed :(

Sorry for the ridiculously unattractive face-pulling, but as you can see, this is not ideal.

When I go to the hospital on Wednesday I'm going to see if I can get a painkiller that is as strong as the Tramadol, but doesn't make me bite myself haha.

So bizarre.

http://www.ehealthme.com/ds/tramadol/tongue+biting

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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.

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Underground Fashionista

I'm hoping at some point in the near future to either be:
a) in remission
b) have my Crohn's relatively under control - don't we all?

So in the meantime, I have decided to branch out and look at the fashion and beauty side of having a chronic illness, as well as continuing to tell you all of my little Crohn's escapades!

***

Quite frankly, there are times where I look and feel like shite, and there's only so much concealer one can use to hide those bags from your insomnia nights.

I also feel that by doing this, (hopefully!) people will share any hints and tips they have with dealing with the bloat, the bags under the eyes, the all-round wellness of life ha.

***

I think the best place for me to start, is with the daily battle of the London Underground and the common misconception that I am at least 3 months pregnant.

Yes, there are days where I am totally ok with this because I'm tired and would love to have the seat - so I take it. Sorry if that makes me a bad person!

But the thing I find the most annoying, is that these are normally the days where I am in the baggiest clothes I own or at least think I'm concealing my flamonge quite well. Apparently I'm not!!

So would it be better for me to wear tighter clothes? I highly doubt it. This is because I tried to wear Spanx for the first time the other week and it pushed my guts in places they clearly didn't want to go and I threw up. No sleek body outline for me then haha.

I also find it hard as someone who has a vested interest in fashion and the latest trends, and general SHOPPING, to then come to the realisation that how I thought I'd look in my mind is not how the 5'3'' rotund-in-the-stomach girl actually looks.

Don't get me wrong. I still dress in a way that makes me happy and makes me feel good! But as always with a chronic illness, there's that underlying frustration...

So a spot of leg-guitarring will always help.

 

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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?!

 

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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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