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!)

X

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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Ouchie

Oh today is not a good day. My stomach has been hurting since I woke up this morning; it's so bloated and painful.

I don't know if any of you are familiar with a choreographer called Martha Graham? But she did a piece called Lamentation and this is exactly how my stomach is feeling...

So stretched, and just...ouch.

I've been trying to stick to mainly liquids after the trial I discussed with my GP - but have found that soups and jellies do not give me the energy I need to function as a normal human being, if I was to do it long-term. So I have signed up for a proper liquid diet that a normal person would use, and hoping to tailor it accordingly to what works best for me!

I am planning on writing a few posts and keep you guys up to date with the weight loss and general goings on when I start it at the end of the week. If anything, just to keep me on track!

In other news, the new hospital called me on Friday. I have an appointment with them this Thursday. OH YEAH. I'm excited for it, as I'm hoping it will give me the opportunity to go through what's been happening thus far. And generally explain how it seems to have ground to a halt, with regards to seeing why I'm still having problems. I guess, it gives me the chance to start from scratch?

I feel it's very similar to when I moved from my diagnosis hospital to my current one; things had started slowing down and I didn't seem to really be getting anywhere. Then after moving I got a good two and a bit years of people wanting to help me.

As annoying and inconvenient as it is having to move hospitals, if it gets me to the point where I am officially in remission, or at least have a year's worth of normality, I will be a happy lady.

And at least I can feel a tad more pro-active with getting things looked into.

X

Early Menopause?

I'm going to say no.

But jeewhizz I cannot cope with these  hot flushes!

I constantly feel like my body is on fire. Even getting dressed in a morning is beginning to stress me out (clothes/bloat issue aside)...

I have a shower, have a sloosh, wash my hair. Get out, get dry and get dressed.

And oh! Might as well start all over again as suddenly it's like I've been walking through a desert on the hottest day of all time.

I can hover my hand over my scalp and the heat radiating out of my head?! It's like the heating is on full blast. It's very odd.

But now, even at nighttime my bodily functions are going haywire. Waking up multiple times for the obvious IBD symptom, but also because I am too darned hot. And not in like a hey, sexy lady kinda way. JUST VERY CLAMMY.

I tweeted about this issue the other day, as I am curious to know if it's a general Crohn's thing, or if it's related to my Humira. General response seems to be a meds issue - woop to the side effects, once more.

I'm off to throw some water on my face...

Until next time!

X

Lesson of the day

Scrambled egg does not help my stomach.

I thought I was being clever as it would slide on through the digestive system. Alas, no.

Welcome Bloaty McBloatedson.

X

Liquify Me

I am on Day 3 of my liquid diet.

I went to the GP beginning of this week, inquiring about getting to the bottom of my bloatedness.

In order to do this effectively, I need to lose some weight (even though I want to anyway) to try and determine what is swelling, what is bloating and what is excess chunkychunk.

I'm only doing this for 5 days - based on advice of the GP - before I then consider long-term liquid diets [if necessary]. Mine for the time being consists of what I could find in a supermarket that was liquid and low in fibre.

FYI, there's not that much. As obviously high fibre is typically better for a body...just not my body.

I did however find a few things that I like, some things I'd not had before, but all the while kept in mind my wanting to lose weight.

So I have been keeping a food diary and noting down how much fibre is in what I'm eating; apparently less that 10-15g a day is a pretty good amount [when on a low fibre diet, obvs. Not in real life for normal bodies as higher is better, etc.]

Slight hiccup in that I went out for dinner with my friend last night...

When asking a place what their Soup of the Day is, it's not often expected to be answered with "erm...tomato...and mint?" Needless to say I wasn't going to be having that for dinner!

I then asked for an omelette, to no avail. So, margherita pizza it was. OOPS.

To be fair, it was bloody scrummy! But my gosh did I notice the difference in my stomach afterwards?!

I literally ballooned. Like BAM. Baby tummy is back.

I think it's fair to say that I would take the slight hunger pangs on the liquid diet, over the feeling of bursting out my skin with the solid food.

But I have a predicament...I don't know if what I'm doing is helping me. Well it is. Hang on, let me explain.

Liquid diet = help to lose weight but also (hopefully) eradicate the bloat.
Low fibre = help clog you up and not poo so much.

Surely if I start going to the toilet-toilet less, then I'll be bloated with poo pain anyway?!

X

Reassessment of the Situation

I got whisked off to Bournemouth for a mini weekend break with my boyfriend, as a belated birthday treat. And it was so nice. The weather (for once) was lovely and I was looking forward to being away from the hustle and bustle of London town.

We had a stroll down to the beach to then walk across to the pier and make the most of our surroundings. But what I wasn't expecting, was the way I felt when walking along the seaside.

You may remember I wrote a post a while ago about Torso Envy? Well here it was, shoved in my face.

It wasn't just the fact that I am at a weight where I feel uncomfortable to have any form of skin on show - it was seeing all these tummies, so tanned and flat. It's not even that everyone looked like a cover star, they just had normal stomachs.

But it hit me like a ton of bricks; the difficulty I have of finding ANYTHING to wear as my bloat is so large, the embarrassment of not wanting to wear anything suitable for a beach in case it clung on the rotund flamonge. It just sucked.

Obviously I didn't want to ruin the mood of the weekend, so asked if we could sit in some shade so at least I wasn't a sweaty, bloated lady.

And don't get me started on my forward-thinking for after we'd been out for dinner: don't eat too much in case we're not near a toilet, don't make a big deal about maybe not staying out and that an early night would be better, play it down that basically I just want to be able to poo in peace.

Thank god I have an understanding boyfriend.

So I have decided that as I seem to be having no luck with food (always eat low fibre, etc.) I am making an appointment with my GP to see about a liquid diet.

The only time I haven't been bloated in any way, was when I was first out of hospital having been on only fluids. As soon as solid food passed my lips, it was like someone inflated my insides and won't let it go back down.

Also, seeing as my consultant at my current hospital thinks it's ok to wait a few months for me to see a dietician, I'm going to inquire about this. Because I want to lose weight. I really do.

Not only do I have the bloat making things difficult, I now dread having to go outside as I don't know what to wear.

It's not a case of let's not be silly now, I'm sure you'll look lovely - it's the panic in having to find anything to fit me.

I've lost count the number of times clothes have made me cry recently; most ridiculous being in the Maternity Section of Topshop in Oxford St where I cried into a wall of t-shirts as I wondered how I ended up standing there, without a baby but an overwhelming need for loose clothing.

Yet despite the element of positivity I have of going on a liquid diet, I am also increasingly aware that one for Crohn's is designed to help maintain weight...as we know, losing weight is a common symptom of Crohn's (I would welcome this right now?!)

So how do I do it? Because standard liquid diets are higher in fibre/have fibre supplements, as this is helpful for a healthy gut. But I don't have a healthy gut. So what the bloody hell do I do?!

X