All the Things

Not really sure how to start these posts now, when it’s more of a current health update, as opposed to the woes of yesteryear (NB: 2020). But if I’m going to ramble on about certain IBD situs, then I guess I might as well keep you informed with the now...

Had my appointment with Gastro on Monday. Essentially my bloods say I’m anaemic again and I need another iron infusion; they want to get up my arse with another colonoscopy to assess post-op if my 12 weekly home injections of biologic meds needs increasing to every 8 weeks instead; to try not to lift my sons due to the abdominal hernias and then could I please shit in a pot for a stool sample (my words, not theirs). All this before pending surgery, if covid deadlines allow. So that’s a barrel of laughs ahead!

And whilst I’m dreading any letter that arrives with a hospital postmark in case it’s my kidney operation date, I had one arrive this week for the eye hospital because *spoiler alert* apparently Crohn’s can also affect your eyeballs and get inflamed there too. Specsavers weren’t too sure what was going on in my left eye and thought it best I got referred to the eye specialists. Lovely time.

I mean, I’d be lying if I said I’m ok with the volume of things that seem to be happening in one go? So as a distraction I’m going to try and complete my half marathon walk this coming week. Ideally in one day, but, you know, I’m a little bit broken inside ha. Plus it’s also very warm at the moment - don’t want to be chafing as I stride up a hill with a big stick.

Will let you know when I’ve walked my walk and whether I can stand up by the end of it. For now though, I plan on sitting in my garden in the sunshine and listen to my children play. Make the most of the fleeting British summertime.

X

My JustGiving page 

10 Year Challenge

You may have been aware of the latest internet craze called the #10yearchallenge? Essentially a then and now (or at least a 'then') from 2009. Why someone felt 2019 was the year to look back from is beyond me? Surely 2020 would have been better, as a multiple of 10. Or maybe I'm just thinking too much about this.

Anyway. I hopped on the bandwagon on this drizzly Wednesday, after many a day of scrolling through various social media platforms seeing people's throwback to a decade ago. Glow ups, etc. Lovely time. And I put up a picture of me from ten years ago.

But it wasn't until I started looking through my own photos properly from 2009 that it dawned on me: I've been having my own 10 year challenge. January 2009 was the month I got diagnosed with Crohn's. 2009 was the year that what I thought I knew of my health was all change for forever more. A whole decade of diagnosed IBD.

I pretty much spent all of my 20s - in one way or another - poorly. In hospital. Lying down because it hurt to get up. Sleeping on a narcoleptic level. Fat. Thin. Steroid moonface. Taking medication. Injecting medication. Having an IV for medication. Keyhole surgery. Robot surgery. Slice me open surgery. Hospital admissions. Inpatient. Outpatient. Too many perianal abscesses to mention. Too many visits to a toilet. Too many medical professionals looking up my asshole.

In January 2009 I was presented with a challenge I didn't know I'd have to face; a challenge that had mini-challenges en route. But Jesus Christ it has absolutely been the making of me.

And here we are now! Yes OK, I'm like 17 operations in (who's counting?!) But I am in my 30s. Married. Mama. Now a homeowner (what a palaver that was - will pick up that topic of convo another time). Back working on a magazine portfolio that I love so much. Things are actually really good! And I'm so happy that everything finally seems to be falling into place for me and mine.

Sure, I still have to do an assessment of where all toilets are if I'm out for a family walk. Or there might be times where Mummy just needs to have a quick powernap before we watch Teenage Mutant Ninja Turtles for the 6th time that day. There might also be times - like now - when I'm sitting on a train and I catch my reflection in the window and it's apparent that my tired bags have developed their own bags. Eye bags on eye bags. It's quite a look and I don't think any form of makeup layering is going to help this face out.

I don't mind you see, because besides being rather tired, I am content. I have spent three days in London doing meetings and what not for work and it brings me joy. But not as much joy as stepping off the train to be greeted by my husband and son will bring me. My boys. My little team.

To be honest...I'm not sure where this blog post is going. Am I waffling? I just knew that I had to take a moment to acknowledge the ol' decade long anniversary of knowing my insides were broken. And that however shit things might have seemed at times, it works itself out. Ish*

Here's to the next ten years.

X

*I mean nothing is a guarantee. But all in all, I guess if you can find the positives where possible and then just ensure to have a ruddy good time?

PS: I'm running out of sentences to apologise for my MIA blogging. I do get annoyed with myself that it's so infrequent. But I guess it's going to have to be as and when, probably the best way forward. So until next time...(whenever that is!)

Headspace

If you follow me on social media, you would have seen that this week has been quite a challenging one for me - especially with regards to my Crohn’s and how I’m maybe not handling it in the best way this time. It’s an emotionally draining disease: the rollercoaster of feelings you can have in such a short space of time is quite overwhelming and this particular flare up seems different. I don’t know why, it just does. In all likelihood it could be down to the fact that I currently have no ‘normality’ yet; I’m still in a settling in period. My mundane routines are shot to hell what with the relocation from London, being a newlywed, going back to work after Maternity Leave and the mum-guilt associated with that. My support network is still there, oh for sure. But my personal go-to coping mechanisms aren’t necessarily.

I guess I just don’t feel like I have that guarantee this time, where my mind doesn’t need to flap so much (I have zero reason to think things won’t be ok and I am more than aware at the irrationality *eye rolls at self*) But for instance, these are the things I worry about…how I haven’t been back at work long enough to feel like I can prove myself, e.g. when my insides go mental don’t worry guys! Because when I’m healthy, oh I’m grand. Or to know how to function as a Mummy when really poorly. Or worrying about WHAT IS THE ACTUAL PLAN WITH MY CROHN’S. And when you’re sitting in a hospital bed on your lonesome in the middle of the night, you can’t help but let your mind wander.

There just seems so much uncertainty and for a woman who likes a plan…this one’s tough.

I spoke with my IBD nurses at the hospital and they recommended reaching out to the psychologists here. I’ve always been very vocal how for me counselling has been a great help – I’ve tried a variety over the years from one-to-one youth counselling, to a more general CBT approach and also group sessions for people with other chronic conditions. And now I feel that I need another outlet. For who I am as a person now. As a mother. As a wife. As a new West Country bumpkin. Where do I fit in and how do I learn how to manage with my Crohn’s for the current set up? Excuse the wanky term, but that’s a ‘journey’ that I’m going to have to go on and hopefully find out some of those answers.

I need to learn that only I put pressure on myself to be worrying for everyone one else in the world. But hey, once a worrier! But also that it’s key to know it’s all right that there’ll be things out of my control and everything will be just fine whether I’m in hospital or not. Whether I sit in this bed for another two weeks or I’m allowed home tomorrow. And that I’m also no use to anyone if I don’t allow myself time to get better: do as I’m told. Do as the doctors say. Rest when told. Let my body do its thing. Because my Crohn’s alone looks to be laden with many more hurdles and challenges over the coming months and I need to be ready for that. And it’s something I’ll be sharing with you all for sure.

From a more general standpoint as it stands with regards to my care, we are yet to manage a full meal. However we have had the camera up the ass today – wonderful Friday morning activity – and also had another x-ray to see what the bloody hell is happening inside me. There is a pesky 30cm section of small intestine that was found back in Summer 2015 and it was something we were ‘keeping an eye on’. Well the eyes have been subsequently peeled and nothing has changed so… but herein lies the problem. 30cm is a sizable chunk of small intestine. We don’t just whip that out willy nilly now guys. When discussing the large intestine, there are slightly more options surgically speaking – in that you can actually take it out completely if needs be. But when it comes to the unusually named small intestine (bearing in mind you have around 6m), you can’t live without that. And the more you chip away at it with resections, the more you leave yourself susceptible to future complications. Nutritional issues, feeding through tubes, being open to more serious diseases. Lovely stuff. So we’re tackling this from a medical point of view first. We’re mixing up the meds. We’re changing the doses. We’re hoping that I haven’t indirectly been overdosing on azathioprine as my weight has dropped. To quote the surgeon, is the resection off the table? No, not particularly. Is it something that requires urgent intervention this week? Also no.

So it’s time to get my game face on. It’s time to get my headspace sorted. Take those 3 minutes a day to meditate and zone out. To plan whatever is within my remit to prepare for.

And know that the rest will sort itself out.

X

Junk = Rubbish

I genuinely do not even know where to begin:


rambling
adj

1. straggling or sprawling haphazardly; unplanned: a rambling old house
2. (of speech or writing) lacking a coherent plan; diffuse and disconnected
3. (Botany) (of a plant, esp a rose) profusely climbing and straggling

No, I haven't suddenly become a plant or an old house. But I can sense this post will lack a coherent plan, for want of a better phrase. So apologies in advance, dear reader, as this post will contain a disorganised rant about what I saw on BBC Breakfast this morning (18th June). Mainly because I'm still super peeved by some of the content.

For all you IBDers in the UK, I'm sure you would have heard about the segment that appeared on National breakfast television this morning. And if you're still not aware, let me tell you a bit about the ridiculousness that is Dr Sally Mitton...

"If you have a lot of junk food in your diet before your diagnosis, it actually makes you more likely to develop Crohn's disease...a lot of antibiotics - particularly in younger life - seem to be more likely to develop this condition."

Yep. Ignore everything you've ever been told/read/researched. We all ate bad food as a child, and lo and behold...CROHN'S DISEASE. FOR THE REST OF MY LIFE.

Lets look at the stats first - as I found this really quite concerning. In the year 2003/04 there were 4937 reported cases of young people being admitted to hospital with Crohn's disease. In the year 2013/14 that number had quadrupled to 19,405. In a decade?!!

Obviously I am all for raising awareness of IBDs in the public domain. If I wasn't, I wouldn't blog, tweet, post on Facebook, Instagram and do every other world wide web option. Let alone be as vocal as I am about with my peers. However, the most important thing to remember is that if you're going to put it on a platform accessible by many, i.e. BBC Breakfast, then perhaps make sure that the information being given is correct? And if it isn't correct (because you don't know), don't suggest or assume things. It only compounds and makes it a hell of a lot harder for us to clear it up.

For a gastroenterologist to make such a sweeping statement as she did? I was genuinely dumbfounded. Granted I had not been awake long and was still sleepy. But when I saw her talk I shouted at my TV and immediately burst into tears. Lord.

I just couldn't believe what I was watching?! I tweeted about it and since then, my Twitter has gone nuts. It really has struck a chord with a lot of people.

And I think (unfortunately) that although Crohn's and Colitis UK went on BBC Breakfast to raise awareness, they're now going to have to help us IBDers in the real world, clarify exactly what we go through. Don't tell me that at the age of 26, something that I ate when I was 7 has given me this disease.

I'm not having that. Not at all. If that was the case, there wouldn't be any bloody junk food available for the fear of people developing Crohn's. Utter shite. All of it *slaps keyboard*

Look at me when I was 18. That is not the body of someone who's eaten all things junk food. That is the body of someone who's intestines have gone mental and started attacking itself. But the beauty of hindsight is that I was ever so blissfully unaware. Although in a weird way it's something to marvel at, for all the wrong reasons...I just look really odd; all mouth with a small head and a skinny little bod.

As David Barker of Crohn's and Colitis UK said;

"We need to do more research into these areas to better the understanding of the disease."

And when the suggestion of junk food and antibiotics was brought up again, he verbally slapped it down with what we all were thinking, in that "the reality is, we don't know."

If you missed the news this morning, or want to get riled up again (like I have most definitely been guilty of this afternoon) you can see the full clip here: Crohn's on the BBC

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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

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

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

Reaction

Well.........

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.

X

"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."

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.

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