Tuesday 30 April 2013


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

Not in the slightest bit dramatic.
But it is hurting me haha.

Monday 29 April 2013

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!


Saturday 27 April 2013


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!




Next Friday.

10:15am start.

Few hours of drinking weird medical stuff and investigative scanning.

Game on.


Thursday 25 April 2013

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 surfa

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!



Wednesday 24 April 2013

Hunger Pains

Sorry for moaning, BUT I AM SOO HUNGRY.

I am going to make sure I request that future scans - where lack of food is required - are no later than 2pm.

There's a rumbling in my tummy that is very loud...I feel empty.

And being anti-social at lunchtime at work is no fun. But the food aromas were torture! It's a lot easier to not be hungry in the house on my own on scan day.


Woe is me. Let's go get scanned.


Tuesday 23 April 2013

Ms Motivator

We've bought an exercise bike!

And not just any bike, a Davina Magnetic Exercise Bike...[sounds good?!]

The Davina magnetic exercise bike lets you burn through calories and tone your legs in a comfortable, low impact motion.
It has 8 levels of tension control so that you can increase the intensity of your workout as your fitness improves or simply vary the resistance within workouts.
It includes a centre console that reports on the various aspects of your workout.


I have also quit the gym. Well almost.

Now I know you're probably thinking where's the logic in that?! You're trying to lose weight, not gain weight. But alas, my friends, there's a method in my madness;

I don't have energy at the best of times, but am very much aware that I am borderline Chubster again. I also have to deal with the unpredictability of what may or may not happen with the hospital and what that will do to my general health and well-being. Whilst this is happening, I find it very hard to justify paying £40 odd per month when I've been a handful of times due to crappy Crohn's.

Moral of the story? If Crohn's is ever going to be helpful, it's when you're trying to quit the gym ;)

Which leaves me with the predicament of HOW do I lose weight, when I'm not a member of the gym anymore?!

This is my plan...
  • A 10 week workout (minus stomach crunches/sit ups until at least May 5th due to post-op rules ha) with the aim to lose around 2 lbs a week
  • No carbs in the night time
  • Aiming to introduce natural anti-inflammatory foods into my diet
  • Trying to stick to a low fibre diet for the bloat
  • Start going to salsa and ballet

But another predicament arises as low fibre foods are not very helpful for weight loss. WHY OH WHY IS THIS SO HARD?!

Take puddings: suitable suggested foods include ice cream, jelly, custard, lollies. Foods to avoid...any containing fruit or nuts.

It basically means in order to eat the right foods for my body, I'm going to have to work out super hard to get rid of this extra weight (uhhh) but I'm post-op so there's only so much I can do for the time being?!!

Got my contrast ultrasound tomorrow though, so at least then I shall hopefully have an idea of why I'm super bloated all ze tiimmmeee. And if anything, I may find out how to amend my diet accordingly.

If all else fails....................


Wednesday 17 April 2013

Who's the Chubster?


I am the Chubster.

After having a browse on the ol' tinternet (as you do) I thought I might look up my BMI out of interest...especially as I got weighed at the hospital on Monday - bang up to date measurements, and all that.

It appears I currently have a BMI of 26.17 which means I am classed as overweight. Not that I needed the NHS website to point this out...

To get right in the middle of what is considered a healthy BMI [in this instance, around 22] it seems I would need to lose 10kgs. And I'd like to - believe me! That's a weight I always seemed to be, around 8.5 stone...just before I got really poorly. Then I went down to around 7 stone. Awful awful awful. I was a Skinny Malinky. But now I'm around 10.5 stone and, quite frankly, don't want to be.

Diet-wise, it's been pretty stable. The Crohn's medicine and accompanying side effects, not so stable. And this is evident in my ever-changing body shape...

Ideally, I would like to be a good size 10. I currently average a size 12, sometimes a 14 (if anything, to give my arm-arse* some room ha). It's not that I'm grossly unhappy at this size. It's just hard to feel like 'me', as I was always so active and weight was never something I had to worry about. And even if my weight did fluctuate, I was so body confident (but not in an arrogant way, no no!) just content.

You know when you read about drastic dieters and their photo which shocked them into losing weight? Well ladies and gentlemen, I am going to show you mine *cringes*

I cried. I wondered how I could look like that when initially, I couldn't keep any weight on?!

Me at a healthy weight
[post-diagnosis and a few months after my first operation]
Arrival of the Chubster, NYE 2011. Formerly known as Harriet.

Since the Chubster made its first appearance, I have tried to shift some pounds. But it's very difficult when eating is such a tricky little thing.

I did lose a whopping 6 kgs when I first came out of hospital this year. But it's crept back on, along with the bloat... which makes me wonder, if they could cut out my bloat like I was made of Play Doh, would I miraculously be around 9 stone?!

I've even started Googling to see if I am the only person in the world who can't lose weight with Crohn's. FYI, I'm not. I just find it quite interesting, as I was always warned off dieting because you can lose weight so quickly with Crohn's [although I seem to have missed this particular symptom for quite some time now...] But it seems there is almost a subculture of Cronhnies who - try as they might - can't seem to shift the weight and don't know why.

I read somewhere that it could be down to malabsortion so the metabolism slows right down. BRILLIANT.

I have trouble knowing what to eat with my Crohn's anyway, and it's something I often discuss with my consultants. What is typically deemed good for you in a healthy person, is not so healthy for my insides; brown rice, seeds, vegetables. I need a relatively low fibre diet, which is fine! Except it doesn't help when I can't control my weight gain as it is!

I would also happily go to the gym and get super-active again. Except I'm always so bloody tired or in post-op recovery, that I just don't have the energy to do it.

It's a never ending cycle guys! And one that I'm keen to break.

So, I have made it my mission to take back control of my ridiculous body and try my damn hardest to slim down to a size 10. I'm not fussed how much I weigh and whether my BMI is ok. I just want to feel comfortable in my clothes; and not comfortable like 'oooh jogging bottoms fit me well' haha. Comfortable like 'hey guys, I look and feel great!'

To begin, I am going to start a food diary for two reasons: detect trigger foods for the bloat and to make me aware of what I'm eating.

I think I'm going to post a few food diary entries on here - even ones where I know I've not had the best day - as it will be an incentive to keep going with it.

Wish me luck amigos!

From the Midi-Chubster
...formerly the Chubster...
formerly known as Harriet


*arm-arse is the bit by your armpit where you have excess skin, thus creating a skin fold which looks like a bum.

Tuesday 16 April 2013

Nothing to report...

Here's me...

Still bloated as ever, just sitting down this time.

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

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

It seems that they have whittled my bloat down to the following reasons:
  1. I have a collection based on infected scar tissue
  2. I have a collection from an abscess which has formed inside me
  3. The stricture they removed has since been replaced by another one where my intestines re-joined
Any of the above do not make me jump with joy. But to be honest, if I have any sort of conclusive answer in the next few weeks, then it will make me feel a bit better.

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

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

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

Is that really too much to ask?!


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


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

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

Bloody side effects.

Haha, if only.


Thursday 11 April 2013

Body Struggles

Well today's been fun (?!)

Running late this morning, as I couldn't find my little cool bag to put my Humira in to take with me to work. Slight panic.

Cue a menopausal hot flush on the tube with a mini strip because I felt like my body was on fire, just from the swift jog to the station.

Did aforementioned Humira jab and bled through onto my dress. Excellent injecting skills Harriet.

And I'm still bloated like a pregnant lady...look, no feet!

I also found out today that I have my CT Scan on 24th April at 5:15pm. So not too far away, except I can't eat for 8 hours before...I'm going to die of starvation! The temptation in an office job is the biscuits. Damn the biscuits. Must. Avoid. The. Biscuits.

Normally it's not so bad as my appointments tend to be in the morning, so those 8 hours are mainly made up of me being asleep - therefore not eating. Obviously. Unless I had Nocturnal Sleep-Related Eating Disorder, where you sleep-eat (unless maybe I do? That's why I'm always bloated and don't know why haha)

In other news, I am trying to work out how to go about my appointment this coming Monday when I get to see my consultant.

Out of all the medical people I see, the Gastro team are the ones where I can have a moan and not feel bad about it because they're actually helpful. But I'm already worried that there won't be much they can do, and it will be a case of 'need to see your surgeon' again...

We shall see what happens!!



Wednesday 3 April 2013



I posted yesterday afternoon about me and my depression. I have to say I am overwhelmed with the reaction in such a short space of time.

Not only did my hits hop up in hundreds during the night, but I also had people get in touch who I haven't heard from in a while. Overall, the messages have been extremely supportive and positive, and it's amazing to know that my story has given people strength in some way. But a few wondered if it would be better to keep this element of my life more private, as it's a difficult thing to deal with.

Firstly, I would like to say thank you for your concern. But I promised myself when writing this blog that I would be open and honest. This for me, is a type of therapy where I can tell everyone and no one at the same time.

If I can be so open about what my bowels are up to, why can't I also talk about what my mind is up to? After all, it's all part of the person that I am.

I'd also like to point out that at no point have I been on anti-depressants - it's not that I believe they don't work, I just don't think they have been right for me. And throughout my life I have (and will) find ways to help me get through the really shitty times.

All in all, I am a generally cheery person with a positive outlook on life and my Crohn's...but I am also only human and I can't be strong all the time.

Thanks again though to people who have got in touch - it means a lot that not only do you take the time to read my blog, but to reach out and contact me because of that makes it all the more worthwhile.


"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."

Tuesday 2 April 2013

Well that's depressing

Before I start, I would firstly like to point out that this post is going to be pretty tough for me to write, as I have promised myself to be brutally honest with how I feel.

I say this because I have been told before that I had moderate depression. According to the NHS website, moderate depression has a significant impact on your daily life. And that it does, my friends.

It only takes a quick Google search of 'depression' to reveal a plethora of websites, forums and blogs - all with the same question; is depression the last taboo? An article from the South Wales Echo points out that one in six people experience depression at some point in their lives and is one of the UK's most common illnesses, yet it is often misunderstood.

Now I'm not here to give a lecture on the ins and outs of depression, with the views and thoughts of others. But whilst I am here, I am going to tell you about my personal experience with the bugger and how it makes me feel sometimes.

The reason why I want to talk about it now, is because I am really struggling at the moment.

But also because quite frankly I can't be arsed with counselling again - I have too much going on as it is with the hospital, let alone trying to squeeze in a Tuesday afternoon for an hour's chat over the next 8 weeks.

Nothing in particular this time has triggered some mental trip that I'm on. Whereas previously I have been able to pinpoint what has made me slip, I think this time it is just a complete culmination of all the crap from the hospital over the last 6 months and I'm mentally exhausted.

There are days when I genuinely don't feel like me, which in turn frustrates me that I can't understand why I feel that way. It's like I have so many questions but no answers. It's odd.

For instance, there have been times where I feel so disconnected from the world that I just stare into space and then burst into tears. I don't know why, but it's just what my body does. I'm still trying to work out if it happens because it's my only way of releasing all the stress?!

On more than one occasion I have shed a tear in the shower and then done the classic movie-moment of collapsing and just sat with my legs crossed, with water running over me. Like that will help in some way...although it's more than likely to give me a cold. So not a course of action I recommend haha. [And don't even get me started on the mortifying moment when there seems to be no water in front of you, yet you stand up and it's like a bloody tidal wave because your ass has made a human dam]

But I struggle with the lack of understanding about my own mind: Why do I sometimes feel a certain way? Why can't I stop myself feeling so down? Why am I crying all the time? Why, at times, do I feel utterly hopeless?

To give you an idea of some of the symptoms, this is what is on the NHS website:

Psychological symptoms include:
  • continuous low mood or sadness
  • feeling hopeless and helpless
  • having low self-esteem 
  • feeling tearful
  • feeling guilt-ridden
  • feeling irritable and intolerant of others 
  • having no motivation or interest in things
  • finding it difficult to make decisions
  • not getting any enjoyment out of life
  • feeling anxious or worried 
  • having suicidal thoughts or thoughts of harming yourself
Physical symptoms include:
  • moving or speaking more slowly than usual 
  • change in appetite or weight (usually decreased, but sometimes increased) 
  • constipation 
  • unexplained aches and pains
  • lack of energy or lack of interest in sex (loss of libido)
  • changes to your menstrual cycle
  • disturbed sleep (for example, finding it hard to fall asleep at night or waking up very early in the morning)
Social symptoms include:
  • not doing well at work
  • taking part in fewer social activities and avoiding contact with friends
  • neglecting your hobbies and interests
  • having difficulties in your home and family life

Over the years I have been to a variety of counselling, ranging from one-on-one to Cognitive Behavioural Therapy. All helpful in their own ways, and seemed right at the time.

The CBT group I went to just over a year ago made me aware of rumination...

Rumination is defined as the compulsively focused attention on the symptoms of one's distress, and on its possible causes and consequences, as opposed to its solutions.[1] Rumination is similar to worry except rumination focuses on bad feelings and experiences from the past, whereas worry is concerned with potential bad events in the future.[1] Both rumination and worry are associated with anxiety and other negative emotional states.[1]

[via Wikipedia, a trustworthy source ha]

I didn't realise until it was literally spelt out in front of me, how often I was ruminating. And since then, I do try really hard to distract myself when I can feel me wallowing in my own misery (now where's that sympathetic violin gone?)

But sometimes guys, I just don't have the energy to do it. And I allow myself to wander off into 'woe is me' mood and then immediately regret that decision...It's just quite tough to always be a happy cheery lady when I want to just close my eyes and run around aimlessly because I don't know what else to do.

So there we go. A disorganised ramble of me, my mind, some facts and stats on depression.

Apologies that this post may not be the most legible, but hey - my mind is muddled as it is haha!

Thanks for reading, and letting me blab on. It has certainly made me feel better.


Dead End

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

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

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

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

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

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

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

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

So there we go.

All something and nothing.

Just hope that it starts to improve.

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