Disconnected

Today I feel like I've been punched in the brain.

My poos and pains are no different from any other day - but today I just feel disconnected, like I'm having an outer body experience.

I say to colleagues that I'm feeling 'poorly' but I don't even know what I mean when I say it? It's like it's a handy generic sweeping statement to let them know that I am having a bad day.

Sitting in the work toilet having a cry is not how I wanted to start my day. But even when crying, I didn't know why I was or what the reason may be...

I want to assume it's because I'm a little overwhelmed with everything (moving hospitals, paperwork and what not) but even that should be a generally positive experience; I've been waiting ages for things to get moving in the right direction.

So I guess we put it down to my dips that I sometimes have. And perhaps I need to stop looking for a reason every time I feel a bit crappy.

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Jerking Limbs

I sort of wanted to write about this, but then again I didn't. Because I don't know what it is or why it happens!

But essentially, for a while now my upper body - mainly my arms - randomly jerk out and twist, or one shoulder hunches up super fast (and it's becoming more frequent)

It's so difficult to explain! So tricky in fact, I don't even know what to type into Google...

Sometimes it hurts; not so much from doing the action, more what the action was. The other day it happened and it felt like I'd just given myself a crick in the neck. Other times I have accidentally hit myself when it's happened.

I have to laugh about it, because I do find it mighty odd. But my boyfriend points it out more often now, as do my colleagues, but I've never really known why I'm all twitchy and limby ha.

I don't think it's anything to do with my medicine I'm on/have been on. But I also haven't been looking for a correlation between the two? 

The only way to describe it would be to say it almost feels like I'm getting a shiver, but I don't shiver I just throw an elbow/wrist/arm/shoulder out.

I'm such a weirdo haha.

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What took me so long?

I had an appointment yesterday and all I can say is: why in the world did it take me so long to move hospitals?!

To start with I was amazed by the waiting area - it was like an airport in the year 3013. I loved it...

• You check yourself in by either scanning your letter, or putting in your details on a machine
• When that's done you plonk yourself down on a chair - anywhere - as there are screens all over the shop
• Your name will then appear on screen when you're ready to be seen, accompanied by a gate and a room number
• BOOM BABY! Off you trot to your appointment

Nifty little check in machines

Waiting area (main part)

Coffee whilst you wait?

Initial technological excitement to one side, I was actually very impressed with everything at St Thomas'.

The doctor I saw clearly loved his job and seemed knowledgeable about everything gastro. 

He pointed out that there were multiple things he wanted to check out, and to be honest, I'm a little bit miffed my old hospital didn't bother doing any of the following...

1. Check my B12 levels; as after a resection it's apparently important to keep an eye on this
2. Book me in for a colonoscopy; as St Thomas' have a rule that 6 months after intestinal surgery things should be checked to see all is well
3. Check my enzyme levels; as it's not advisable to be on Humira on its own, so checking to see if I can go back on Azathioprine too
4. Have another MRI; as he isn't convinced what they were looking for in my most recent one was the correct investigation
5. Check my thyroid; as I explained the weight gain issue (as in never lose any despite eating little and exercising)

All in all, he spoke to me like I was a human. He also didn't just assume that the bloat was my fault, unlike my previous consultant. And he said I will hear from a dietitian within a matter of weeks for additional advice.

AND he gave me a card for the IBD Team so - and I quote - I never have to feel like I don't know what's going on again. 

He also said that he sees a few other patients who are always super bloated. All of the time. Yet not all of them have an IBD. Interesting.

That in itself was a relief because it meant I knew I'd hopefully get somewhere with the ol' flamonge.

So I have a lot of investigation coming up, but that fact that he is so keen to find out what's happening with my Crohn's, my bloat and me makes me one happy Crohnie.

I now have a rejuvenated excitement for the future (again!)

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Uncomfortably Numb

Uhhh. I am fed up of moaning (I'm boring myself), but I need to have a vent. Sorry.

Obviously I posted yesterday saying how my bloat was super uncomfortable and painful. I also had areas of my tum where the feeling had gone away again? Couldn't feel my fingernails going across? Just numb.

Well, today is no different - if anything it's a bit bigger. And most shocking of all is that I didn't poo yesterday. AT ALL.

This is an alien experience as it's been a bloody long time since not pooing has been something to worry about. Today I have been once and it hurt ever so, but it wasn't a proper toilet time - if you know what I mean?

I have even resorted to a McDonalds to get things going since then; no luck thus far. I have had some high fibre Ryvitas; again, no luck.

Why can't I poo properly?! What is happening to my body?!

I am becoming the opposite of the main symptoms of Crohn's...fatter and pooing less.

And I have no idea why.

It's not like Crohn's has decided to go away.

At the same time though I am kind of hoping the bloat and pain hangs around until Thursday for the hospital. It's always annoying when you have an appointment and your body is well behaved. It's a false sense of security!

As for today, I have an awards do with work at The Dorchester - a proper snazzy affair. And I'm going to turn up looking preggers and wanting to poo.

Joy.

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