Stranger Danger

I know. It's like you've forgotten who I am, as it has been so long since I last posted. SORRY GUYS!

The last few months have been a whirlwind of new job loveliness and quite frankly, time has ran away from me on a daily basis!!

I do however still have a long list of FODMAP recipes to post. Be good to let me know what one you'd like to see first? Your choices are...

• FODMAP Nibbles
• Mexican Meatballs with Red Rice and Salsa
• Moroccan Lamb and Warm Couscous Salad
• Homemade Chicken Tikka Masala
• Winter Vegetable Pasta
• Easy Fish Pie (no sauce required!)
• Butternut Squash and Red Pesto Pasta

Will try and get my technological brain on and create an official poll. Oh aye.

In other news...

Crohn's is relatively settled. Had a few hiccups from the nether regions and I'm waiting to be referred to the Rectal Bleeding Clinic. I'm sure you can fill in the gaps there. No one wants to read about bleeding bums and recipes in the same post!

Got the dietician on December 23rd so will make sure I do an update after that. As it stands, to be honest the FODMAP hasn't done a great deal with the bloat. But I was told it may help, may not help, may take 2 weeks to notice a difference, may take 6 months.

Good ol' trial and error Crohn's at its best!

But for now I shall bid you farewell (not for as long as last time!) as I have the BIG REUNION to look forward to tomorrow *10yr old self screams*

Oh and some Christmas shopping. As I haven't done any yet. Cripes.

See what I mean about time running away from me?!

X

FODMAP Time

So I have completed my first full week being on the FODMAP diet, and it will be going on for the next 7 weeks (8 weeks in total)

I was determined that when I started it, I would be strict and do as the booklets say, as I really want it to make a difference! And although it's been tricky, I am now getting into a routine of different foods I can and cannot eat.

Because of this, I will be posting recipes of various meals I've had - essentially turn my blog into the occasional food diary, if you will.

Recipes will be posted on my newly added 'Foodies' page, which can either be accessed along the top tabs, or by this link: http://www.harrietsgotcrohns.com/p/foodies.html

Any queries re foods I've used, etc. please get in touch!

X

@Harriet_IM 

Namaste

Starting yoga tonight.

Organised through my office - which is an added bonus, as it means I can't miss a class with it being straight after I've finished my working day. Plus it will firmly put exercise back on the map of my life.

Very excited as I'm so ready to get back into exercising properly again! More so now I know internally things are settling down/going in the right direction for once!

I'm also excited as yoga will not only help with the physical side of losing weight, toning up...but also the mental side.

And it seems perfectly timed as I have my first counselling sesh this Thursday.

Namaste indeed.

X

The Joys of the Unpredictable

Well this morning didn't go as planned!

Didn't eat anything new/different last night...body seemed to do its normal thing of eat, toilet, toilet, bed. Yet this morning - jeewhizz. No fun at all, my friends.

Stomach was bloated and a tad painful (nothing new there), went to the toilet as per the usual morning routine. But the nausea that came with it! And the physical need to want to actually be sick! Uhh indeed.

45 mins later, got dressed - whilst sweating like it was 130 degrees - and left to get the tube. Until the overwhelming urge to both go to the toilet and vom came back. Cue a mad dash back down my road and straight into the bathroom.

It's so draining though. And then it makes me cry. And I was still really hot so sat on my bathroom floor to cool down (totally normal). Rang my manager, explaining my mini escapade and that I was running more than a little behind. Fortunately he was understanding and just told me to calm down, see how I feel and let him know...

At work now though. Still feeling a tad on the unstable side (body, not mind this time!) with my stinging post-cry eyes, but I shall power through as only one can. Until tomorrow anyway!

So yes. That was my morning and it's fair to say I wasn't expecting the first few hours of today to result in me essentially hugging the toilet and crying.

I still don't know why my body did this? Could it be the Azathioprine being all weird as I'm only one full week in?

You have to laugh though. It's all so bloody unpredictable.

X

What's been going on...

It's been a weird few weeks!

It's almost like I don't know what went on, as so much happened. I guess the best place to start, would be to pick up where I left off; counselling telephone assessment.

To make it a bit more fun, I've named each bit after a song. Why not! Sing it if you like...


Mr Telephone Line

So they called me on the Thursday, at exactly 9:10am as promised. It's always a bit strange doing these assessments, as I would prefer it's done face-to-face, but means to an end and all that. Went through all the questions with the lady - who was so lovely, which helped - and she informed me that the next step would be her passing on my info to her supervisor and they will be in touch.

Whilst I waited, I threw myself into work as I really am loving my new job...and my hard work paid off as I was awarded with Employee of the Week and won a £50 voucher at the end of my first month!

But I digress. Back to the phonecall.

They called me the following week to let me know what they'd decided was the best route of action for me, based on the answers I gave. Originally I had asked for individual counselling as I didn't find the CBT group too helpful last time.

However, they proposed another group for me. One that is specifically for people with chronic diseases. Worth a shot I guess?!

This all begins on 17th October, right in the middle of the working day, for an hour. Inconvenient at best, but I know that a few weeks counselling in the short-term will help me cope better in the long-term.

Which brings me nicely to my next update...


Manic Monday

Except it wasn't a Monday. It was actually a Friday. And I was in a meeting that I had arranged with my manager and my HR department.

Obviously I'd rather not go into great detail, but brought it up to let you guys know why I decided to arrange the aforementioned meeting!

Due to the unpredictability of Crohn's, and my medical history combined, I decided it would be best to gently broach the subject - more as a just in case.

I wanted to make a plan. I wanted to know that I wouldn't have to feel guilty on those days where I'm running late because I can't get out of bed/leave the bathroom/make my way in without a toilet stop-off.

I also wanted to know the work procedures in case I needed another op/went into A&E out the blue (both of which have happened to me whilst being a working girl. Not that type of working girl. Just a girl. At work. In an office).

And of course I needed to inform them of the various regular appointments I had coming up; counselling every Thursday from 12:30-1:30pm for 6 weeks, the regular blood tests now I'm on Azathioprine, my dietitian appointment on the 21st..

Naturally my mind flapped due to the following thought process:

*AREN'T YOU GLAD YOU HIRED ME?! I'LL BE THE EMPLOYEE WITH 75,000 APPOINTMENTS DURING MY PROBATION PERIOD*

But it turns out that this company is pretty damn fantastic and openly said they will do as much as they can in order to support me - as long as I'm open with them (within reason obviously, as no one needs to no bowel movements down to the second!) But I think is fair enough - as I've definitely learnt from past experience with university/employers that it's best that they're made aware of what's going on. Otherwise I'll only be a hindrance to myself!

All in all. Very pleased I decided to bring it up now, whilst things aren't as crazy as they have been. And at least I know there are contingency plans in place...because my body is a strange one sometimes.


Doctor, Doctor

I also had the hospital last week, to get a round up from all my previous scans. The good news is that my insides seem to be calming down and I seem to be the closest to remission that I've ever been.

One would assume this would make me feel very happy, however I actually felt a bit odd.

I don't know if it's because having not long started on Azathioprine my body feels all over the place - and I guess I don't necessarily feel all that well, yet.

Like I'm being told my body is the best internally, that it's been for a long time. But for some reason my mind and general well-being doesn't match that at the moment.

I guess it's also because all that I've known since 2009 is the ups and downs of Crohn's...but mainly the downs with regards to ops/treatment/meds, etc.

So now I need some time to adjust. But I'll get there though. Especially with all the upcoming appointments which should really help me over that final hurdle and into remission.

Who'd have thought?!

X

PS: Each subtitle in the post is linked to YouTube if you do actually want to sing along ;)

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!

X

Skyscraper

Also, forgot to mention a few things that came up whilst talking to my GP; mini epiphanies (in the middle of a breakdown), if you will.

I didn't quite realise that one of my main issues with the whole Crohn's thing is that I seem to be a micro-manager, for almost every part of my life. And as I'm sure you all know by now, one of the main selling points of Crohn's is its unpredictability.

Because there is no cure - at the moment - Crohn's will be underlying problem in everything I do. And despite my best efforts at not letting it get me down, I'm yet to experience life for a decent amount of time where it isn't my main concern. So that in turn, makes it hard to imagine life different to how it is now.

I also came to the conclusion (sensible or otherwise) that I think I am always going to struggle with accepting myself fully as a Crohnie. Until I am able to accept myself for who I am now, not who I was.

There really is nothing I want more than to get back on my boat of positivity and get out of this skewed dip. But nonetheless, it was interesting to hear myself talk about the above because I didn't really know they were such an issue.

Mind boggling. In every sense.

X

PS: Stumbled across this song whilst watching last weekend's X Factor (sad I know). Pretend it's not about a boy and a relationship, but more a person and their depression. It's a great one to sing out!

Skyscraper

Human Jenga

I went to the GP on Monday.

One of the things she said to me really hit home, as I'd never thought about depression in that way, as there's not always a particular trigger for the dips...

I was in the middle of playing human Jenga. Hypothetically, with pieces being removed for various reasons I stayed standing - and although things seemed all right, I wasn't as balanced as I thought I was and it toppled.

So I've been referred back to CBT counselling - but this time she's requested individual as opposed to group, as the group one wasn't such a benefit for me. The people in my group were having issues with things they could change. But this was my problem. I was in there because I couldn't cope with things that I had no control over, couldn't change.

Now I wait for the counselling chaps to call me, quiz me on how I feel about everything and anything, and then wait for a letter with my level of depression. Ooh such fun.

Naturally I'm worried about how this is going to effect work and my relationships; all of them. Not just the need to leave to talk about my life to a stranger. But the days when I'm feeling low. The days when I don't even want to get out of bed, let alone leave the house.

All I can do now though is know that I'm doing everything I can to go back to 'normal'. Whatever that is.

X

For Fellow IBDers

This post is for all my readers that have an IBD as you will know EXACTLY how I feel today.

The pain in my stomach is bad, but hey ho that's part and parcel. But what I am struggling with today is not being able to walk more than 5 metres without genuinely feeling like I'm going to shit myself.

It's exhausting.

And after the commute from hell this morning, I've got a feeling today is going to be a tricky one..

X

*****

So I was just browsing the internet, as you do at lunchtime, and I found this: People who are having a worse day than you

Made me laugh! (But not too hard, in case I pooed haha)

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

Summertime Stories

Well hello there!!

How has everybody been? Good summer?!

I hope you've all had a bloody lovely time whilst I've been away :) As I said in my last post, was off for a few festivities so took a mini break from blogging and now I'm back to reality it is time for me to update you all on WHAT'S. GONE. ON.

So...


Colonoscopy Day

This was such fun (erm....?) not really, no. The pre-camera-bum-time was lovely! My new hospital is marvellous. I got a navy robe, some tote bed socks, hospital gown [standard] and even the paper knicks weren't too bad!

During the colonoscopy however - URGH - it was horrible. I briefly remember crying whilst drugged up to my eyeballs. They told me after that they had to give me 25% more drugs than they normally would for someone my age, except I don't remember and the boyf had to fill me in. Guess that explains why things are quite blurry for me.

The doctor said that things were relatively ok though, which is good news. And just that there was an old fistula inside. Come again?????

It's obviously fine now so...shouldn't be worrying?!! *panics in silence for a moment*

But I have the hospital this Thursday for a catch up from all the new scans and tests I've had over the last month. Will be sure to ask what it all means!


In other news...


Surfs Up!

And down to Newquay we go for Boardmasters with my girls. SUCH FUN. Had an amazing time; totally chilling out on the cliff top with ciders, floral headbands and good company.

But my lord! One word. Portaloos. They were summin' else!!

Fortunately I met a very nice man that was not only the bouncer for the disabled toilets within the main arena, but also conveniently understanding about Crohn's #winning

In all seriousness though. Bit of ol' R&R was fabio. Good job too, as I was off to Spain the next day!


Espagnol

After a whirlwind weekend in Cornwall it was straight down to Bristol to fly to Spaaaain. Viva la Espagnol!

Did a road trip with the better half: Almunecar, Granada, Madrid, Toledo, Salobrena, Cerro Gordo.

All I needed was a bumbag [or fanny pack if you're reading this in America. In which case, thanks for reading! We're international baby!!] sorry, I digress. Basically I would have become the ultimate tourist.

Foreign foods are naturally tricky for someone with IBD, but managed to find some tasty treats for the journey!

Saw some amazing places and really enjoyed finding hidden gems in the depths of Spain. Would definitely go again and explore some more!

Hi I'm Harriet, your new employee

And now to today, the first day of my new job. All very exciting!

Just need to try and keep my Crohn's under wraps for a while as there are lots of things to look forward to in starting my new career [although I seem to have a suspect lump on the other side of my bum cheek, but ssssh]

To be honest though, I feel like I need another holiday to catch up on sleep.

I am utterly exhausted, albeit from three bloody wonderful weeks.

X

Summer Holiday Time :)

Just a quick note to say that I am festival-bound tomorrow, nice and early...but I'm sure there will be many a toilet tale to tell in my next post when I'm back online!!

Then once festivalling is done I am off to Espagna for a week or so with the boyf. Naturally this means there will be a slight hiatus in blogging as I have every intention to CHILL OUT.

Sorry guys! However when I am back in England and with my iPad, I shall update you all on my colonoscopy day, festival mishaps and Spanish stories...

Until then amigos!

X

It's been a while!

Hello one and all. And massive apologies for being slack with blogging!

As you know from my last post, a lot happened in a VERY short space of time *wipes sweat off forehead* but now things have quietened down a tad, which gives me an opportunity to update you all on what's gone on :)

So, I lost my job. But now I have a new job! Had my first interview for it last Wednesday, with the second interview this Monday. And by Monday afternoon I got told they were hiring me!! Super quick and wonderful.

The good thing is I don't start until 27th August, which means I can go on my two holidays and get all the new hospital stuff done before I start. Generally just chill...out...

I was initially worried about getting employed - in any job - due to having Crohn's and everything that it brings. But I brought it up in my first interview as I didn't want to potentially get through to the next stage, and that then be a reason for them not to hire me (I know they can't use that as a reason, but it's a worry all the same!)

But it's fine as I am an employed citizen once more!

And now for a Crohn's update: today I was hanging out in a toilet (not in a George Michael way)...

...as I had my first MRI in the new hospital. THREE MRI UNITS they had. Three! Swanky.

Naturally I only needed the one machine. And as you probably know, before you get scanned for a small bowel study you have to drink from the bottle of death. (NB; not an actual bottle of death)

Welcome the constant poos.

Tomorrow I begin my colonoscopy prep ready for Tuesday. Been a while since I've had one of those, but I feel that if they're in there, they can see everything. And hopefully I'll get some answers re the ol' flamongey bloat.

So to end this post, please read the next part in the tune of Craig David "7 Days"

Have some laxatives on Monday, camera up the bum on Tuesday, resting in my house on Wednesday. And on Thursday, Friday and Saturday I am festivalling.

Nervous about pooing excessively at Boardmasters festival. But we shall cross that shitty bridge when we come to it!

X

What a week!

I don't even know where to begin - but this last week has been one I do not wish to repeat anytime soon!!

When I last posted, it was Thursday and I had been feeling rather odd. And now I shall divulge more as to why...

I had the first part of my Cat Scan on Monday (mmm radiation) but I also went to my GP that day.

If you follow me on Twitter you may have seen I posted about a rogue mole playing up the other week, so off I trotted to the GP last Monday. Basically I got referred to a Skin Cancer Clinic which totally knocked my brain. Yes, my GP was following procedure, I know a lot of the treatments IBD patients have are also related to cancer, and Humira can make your body do strange things. But no one had ever said the C word to me. It has quite the effect.

Anyway, I'm happier to talk about that now as I had the appointment today and tis benign. YAY for one part of my body doing the right thing!

However on the advice of the senior doctor I am booked in to have it removed as they don't want it to potentially cause more problems/worries in the future - especially whilst I'm on Humira.

To top off what was a pretty shitty Thursday [see here for my ramblings on that day] I got called into my office at work that afternoon. And well, I lost my job.

The magazine I was working on wasn't doing too well (I checked if it was down to me and was assured it was a problem with the product), and I was the only salesperson on it (the other staff being editorial for other mags too) so by default goodbye to Harriet. What a shit day.

What was more annoying about it was they moved my probation period due to my op, and so I was still in it when they let me go. No redundancy pay for me! Just more stress and worry about what the bloody hell I'm going to do with my life!

Naturally, I have since wondered whether it was an indirect way of getting rid of me without saying it was because of my Crohn's. I let them know in my interview you see and although it's quite a grey area, I understand legally they can't get rid of me solely on that basis.

Does make the mind play tricks on you though. And it also makes me panic that I'm going to have to go through the same thing all over again with a new employer. Any of you reading this that have an IBD, will know the difficulty in getting teachers/lecturers/tutors/employers to understand what it's like living with a chronic disease.

Just feel incredibly lost at the moment, like the rug has been pulled from under me and now I have to get myself back to normality with no clue of what I want to do.

On that note, I shall leave you with some info from the Crohn's & Colitis webpage:

Crohn's and Ulcerative Colitis can affect young people during their education, or as they become established in their career. Most sufferers can be maintained in remission for most of the time, and are able to lead a full working life. Unfortunately, some who have severe disease do not achieve their educational and career potential.

X

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.

X

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.

X

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.

X

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

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...

X

25

Today is my birthday!!

I am 25 years old - officially at 8:57pm.

Without sounding like a complete sap, I suppose I'm not really where I thought I would be at 25; I'm not yet married, I'm not dancing full time, I don't own my own house.

I guess when I was younger, being 25 seemed exceptionally grown up.

HOWEVER, I have managed to nab myself an amazing boyfriend, keep an excellent support network of friends and famm, get a job in an industry which is oh so fun and I get to work with people who are ace.

Oh and I got Crohn's. But that's by the by...

So tonight I am going to have a cocktail or 5 and dance until the sun comes up, as I have a tactical day off tomorrow.

Me as a young'un

Oh yeah. Birthday. Yeah.

X

More Exciting News!

As you know, I was asked to write a guest post for Me and IBD - and now it is LIVE.

I wasn't sure what to write about and ended up going with my gut; in every sense of the word.

Would really appreciate it if you would have a read through and let me know what you think?

Thank you!

X

My Saving Grace

For now, anyway...is my GP.

She's amazing. I love her! So helpful.

Unsurprisingly, after the day I had yesterday I was starting to lose my faith in the NHS and what happens now. Fortunately, my GP is a star and let me vent to her on the phone today. We mutually agreed that I wasn't really getting anywhere with my current hospital - and that it's probably best a fresh set of eyes view my bloat.

So I'm off to the doctors after work today to pick up a referral form!

It's nice to have my faith in GPs restored, as I'll be the first to admit I was a bit sceptical in the role they play for someone with a chronic disease; but I think it's because I wasn't settled geographically and it made it a lot harder to see the same person each time.

At least I know my current GP wants to help me, wants to make sure I'm doing ok...it's nice. Because it's certainly not easy trying to get on with things when it seems as if it's all going to shit.

*****

I know I had a proper rant in my post yesterday - sorry. But I was just so angry (still am, to be fair) and felt so utterly disappointed and let down.

I don't understand how they were so blasé with me? And - if you're reading between the lines - suggest that my bloat is potentially my fault, as it's due to the weight I've put on.

No it isn't. My insides aren't working properly, and I know this as I'm the one who's dealing with it first-hand. I just need someone to listen to me.

Hopefully by getting referred to a new hospital, I will be able to get somewhere in finding out what's happening inside me.

Here's hoping...

X

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.

X

Rash!

I keep coming out in a rash...

I usually refer to these as my 'stress rashes' and I'm going to assume it's because I am SUPER NERVOUS about the hospital later.

 

I just want some answers. And hope that I may get to enjoy my birthday next Tuesday haha - but is this more wishful thinking...?!

X

Interview

I did an interview not long ago for a friend's beauty website...not entirely Crohn's related, but Crohn's certainly gets mentioned a fair few times!

As today is World IBD Day, Catrina very kindly published it this evening.

Would love for you to check it out.

Secrets of a Beauty Addict

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It's World IBD Day!

Happy World IBD Day everyone!

Hopefully we are all now a bit more aware of Inflammatory Bowel Diseases?!

There was a symposium at Birmingham Children's Hospital today - unfortunately for a variety of personal reasons, I couldn't make it :( but I am intent on hearing all about it, nonetheless!

http://www.worldibdday.org/

From the hashtagging on Twitter just after midnight on 19th May, it made me feel proud to be a Crohnie.

I loved the feeling of unity to help raise awareness of the little buggers that are IBDs...

It only takes a second to search 'World IBD Day' on Twitter to see the number of people discussing, tweeting, retweeting all day.

Nice one guys!

Here's to finding a cure!

X

I just don't know...

...what to do with myself.

I have essentially shed a small tear every morning: I like to plan an outfit, as I'm quite the flapper in a morning routine and it's normally impossible to get myself out of bed.

The problem is, what I have laid out to wear is normally ruined by the fact my bloat has not changed shape or size in the night. It's driving me crazy!! None of my clothes are fitting me anymore - even my loose ones - and I'm not prepared to go out and buy maternity clothes to cater to my bloat I shouldn't even have.

To add to my woes (dramatic, I know), this week is completely dragging; all I need to do is get to Monday and see a person face-to-face at the hospital.

But then this is a dilemma, as it's my birthday a week Tuesday and it's also Bank Holiday weekend. Anyone that's had a stay in hospital knows weekends aren't exactly fabulous for care at the best of times. Let alone a three day weekend.

So what do I do? Wait to see what the doctor says on Monday, and hope he doesn't send me in just before the long weekend? Surely if my scans were super bad, someone would have already been in touch?

But then again, you would have assumed someone would have been in touch already with a follow up appointment from my scans three weeks ago?!

And another thing which has really ground my gears is that what I have planned over the next week or so, were things I booked before my operation in January - on the hope that I would be fully recovered and able to properly enjoy it all. Except I'm not fully recovered. I'm essentially where I was 6 months ago.

Why does it constantly feel like I'm going around in circles?!

X

Wow

I hit 15,000 views on my blog.

THANK YOU!

I decided that because of this, I would pimp it out and add some new pages (which you can see across the top bar...) And then I thought, why not go crazy and make it an official website. So I did!

The old link will now redirect you to www.harrietsgotcrohns.com

How exciting! *does a crazy dance*

I think the ol' cliché I'm looking for is...Go big. Or go home.

So I went big. And it's all down to you guys :)

X

Exciting News!

I have some exciting news to share with you all!

The Crohn's and Colitis UK Press Office has been in touch with me, and asked if I would write a guest post for them.

OH YEAH.

Once it's written and live, I shall share the link through here...and they have told me they will put my post up on meandibd.blogspot.co.uk, tweet about it, put it on Facebook and also on their main website www.meandibd.org. So I'm very flattered to be asked to get involved!

Here's the thing; I have free reign over what topic I can write about.

Most of what I write is based on my day-to-day activities and challenges with me and my Crohn's - apart from the depression post. And although I have an idea of what I may write about, I wanted to check with you guys to see if there was anything in particular you'd quite like me to cover?

My initial thoughts was going to be based on me and my bloat - as it's such a MASSIVE part of me at the moment! And so look at the difficulties in feeling feminine when you don't have a waist, on how hard it is to find clothes to fit you when you don't need maternity...and kind of see where that takes me...?

But if any of you have a topic in particular you'd like me to write about, please either leave a comment on here, email me (harriet.c.stevens@hotmail.com) or tweet me (@Harriet_Pure) as I'd really like to hear what you all have to say!

X

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...

X

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.

Bank Holiday Lols

Just a quick one to say that I'm Bristol-bound for the Bank Holiday weekend, so will most likely give blogging a miss.

Need to be a social butterfly, darlings!

But I already have the beginnings of a drafted post from today's MRI (what an experience)

So don't you fret...I shall post oh so soon!

Enjoy the long weekend!!

X

Balancing Act

Hmmm... yesterday didn't go so well.

Went to work as normal, had a niggling pain and felt a bit spaced out - but planned on just cracking on with the day.

Then I threw up. And then again.

Cue journey home and the hope that I didn't vomit on the underground.

When I got home I had some Oramorph, as it's the only painkiller that totally wipes out the pain. But it also meant that I was knocked out for 5 hours (didn't even get to watch the whole of Pocahontas!)

So this morning I have decided to work from home and will be going into the office this afternoon for a meeting. Power through, and all that.

It's just soooooo frustrating. And it's wearing me down.

It's the unpredictability of what's going to happen with my MRI on Friday...what I'll be told in the follow up appointments...and what this means for my own life and working life.

I'm not sure how to find a balance of doing 'normal' things, when I don't even know the true extent of what my insides are doing and what happens next?!

X

Ouch

This is how I feel today, with regards to my tum...

Not in the slightest bit dramatic.

 

But it is hurting me haha.

 

X

Sleep? Yes please.

I am struggling to stay awake and finding it very hard to just be awake...

I had to take some morphine yesterday as my stomach went into overdrive where pain is concerned, but this brought me to the inevitable post-morphine voms this morning.

And I haven't pooed at all today! WHAT IN THE BLAZE IS HAPPENING!?

I think this is partly the reason why I have continued to feel nauseous all day. Wahhhhhh.

In the meantime, going to try and get a cheeky doctors appointment for some pain relief that doesn't make me drowsy - so at least I can get through work this week before my scan on Friday.

Here's hoping I don't fall asleep on the tube and miss my stop!

X

Predicament

Obviously I have a swollen tummy at the moment, and I also have some excess weight in that area too. Here's the thing: where my kidney scar is, my skin doesn't do a natural fold on the right-hand side, it likes to do a diagonal fold (when I'm not swollen like a balloon; a deflated balloon, if you will).

In the wee small hours whilst alone in the bathroom...just checking out the deformed bloat...I had a discovery...

Where my diagonal fold is, it puts pressure on whatever the feck is going on inside me, which makes the whole toilet debacle all the more painful. Meaning I have tensed stomach muscles from the actual action of going t'loo, and additional pressure from skin folds pushing my insides places it clear doesn't want to go.

I feel like my right side is playing its own game of tug of war - except it's pushing, not pulling. So I guess nothing like tug of war at all, actually.

Anyway, you get the point I'm trying to make.

But here's my predicament, as I'm not going to have abs of steel in the immediate future. Unless I find a toilet that's like a sun lounger with a reclining option, I'm pretty screwed for the time being.

That is all!

X

MRI

Next Friday.

10:15am start.

Few hours of drinking weird medical stuff and investigative scanning.

Game on.

X

Little bit shit

As you all know I had my scan yesterday; originally planned as a CT and changed to a contrast ultrasound.

I didn't eat anything yesterday (as informed by the accompanying rules to the letter) and arrived ready and waiting. Fortunately it wasn't a contrast ultrasound after all, so no weird aniseed/vanilla/medicinal drink to have *sigh of relief* it was just a normal scan - I just needed to be empty inside for them to have a good ol' browse.

In my mind I told myself that I didn't really care what they found, or how bad it was, as long as I knew what I was dealing with...

Well they found something!

It seems I have an abdominal fistula. That's a little bit shit.

At this point I may have shed a tear or five.

I don't know if I cried because it was relief at there being a reason why I'm so bloated. Whether it was pure dread because after already having two previous fistula in my ass region, things didn't go so smoothly [did I tell you the time I had 9 perianal abscesses?!]

So yes. This it seems, is what's giving me grief.

Although not talked about much, abdominal fistulas are dangerous and difficult to manage for both the medical team and the patient.

By definition, a fistula is an open passage connecting the abdominal organs to the external surface; in layman's terms, it's a hole between one of the abdominal organs out to the skin's surface.

Based on when the problems started going crazy, I'm going to take a stab in the dark and state that this is the reason I have the fistula:

Fistulas caused by complications from surgery may involve an incomplete closure of an incision made on an organ or from an inadvertent nick by the scalpel that doesn't heal and may become infected.

Read more: About Abdominal Fistulas | eHow.com

***

I got told I will be called today - haven't as of yet - with a time and day next week to go get MRI'd for further detail.

Also on the chase for a follow up appointment with the surgical team. AGAIN.

***

To cleanse my brain, I called one of the lovely girls I met in hospital last night, as I felt like I needed to question/worry/rant about what I'd been told and I know she's been through something similar.

She was so helpful and told me what to look out for with my scar, how I was feeling etc.

Although I've had two fistula in my bum/pelvis, the abscesses it caused were near the surface, but were never really visible... unless you were in a yoga-twisted-acrobatic-move-with-accompanying-mirror. And by 'you' I obviously mean me. Because it would be a little bit weird if you were doing it too.

Whereas with this abdominal fistula, it's right in my insides and I'm assuming from what I've been told, it will be trying to work its way to the surface - typically through the weakest part of my skin. How convenient I have a 10cm scar right in that spot.

Apparently the redness of my scar should have gone down within (maximum) a month post-op. Well this is what mine looks like today...

Outfit theme of the day: Club Tropicana drinks are freeeee

 

  

(Please also excuse the lower trouser elastic imprint - part and parcel of the bloat and wearing clothes)

But as you can see, my scar from my kidney op is nice and white (near my belly button). Granted this was from 2009, but once the scab fell off it was pretty much like this straight away. So another thing to keep an eye on, I guess!

If I can get anything out of this ridiculous situation, I'd hope that it's at least a few months of normality and that it won't be too much longer until I generally feel better - both physically and mentally.

I'm doing ok. Just feel a bit let down by my body haha.

Fret not, as in the meantime, I shall look forward to the weekend where I shall be painting my nails, getting my hair cut off and enjoying what's left of the sunshine!

Toodleoooooo

X