The Crohn Way Soirée

On Friday we held a launch event for my book ‘Go Your Crohn Way’. It was AMAZING. Being an inexperienced ‘author’, I’d never even attended a book launch let alone held one for myself, so it was a very daunting prospect! Thank-fully I have an amazing partner who took the reins on the majority of organising the event; he also acted as the host with the most; welcoming everyone along, introducing the night’s activities and even holding a Q&A session with me! VERY FUN.

We held the launch in The Royal Society of Edinburgh, a beautiful building within jaw-dropping distance of Edinburgh Castle. The RSE was created in 1783 by Royal Charter for “the advancement of learning and useful knowledge” and has a strong medical background. It’s also IMPRESSIVE AF. I certainly don’t profess to be learned enough to ‘teach’ anyone anything (although I can name AT LEAST 10 breeds of cat in under a minute), but I do hope my book offers some useful knowledge on how to live a full (and happy) life with IBD.

The launch allowed for me to talk a little about the basics of Crohn’s Disease and Ulcerative Colitis, and read a little from my book. That was SCARY. My knees were a-knockin’ and I was breaking into a cold sweat but I got to the end of it without passing out and no one left mid-way through so that was a bonus! James (my BF) and I had a Q&A where I fielded brilliant questions from our guests. Many of which almost had me sobbing but I was running on too much adrenalin to even coax out a tear at that point. We had delicious canapés and wine and social networking, and a book-signing! THAT was a thrill in itself – people actually queuing up to have me sign their books like a real life author! I loved every minute; especially meeting some who had come such a long way to attend the event.

There was such a great and inclusive atmosphere in the room that we couldn't fail to feel comfortable. Bowels have never felt so entertaining.

Today, a couple of days later, and now that we have both come down from our ‘successful-event-high’, I feel overwhelmed. I've cried more than once today. Not because I'm unhappy, absolutely not, but because I feel so incredibly thankful. Mainly for the people in my life who have supported me from day one in pursuing my dream of getting this book out into the world. I'm thankful for my partner James who I adore a little more every day. But most of all I'm thankful for those people trusting in me, buying my book and enjoying it, and TALKING ABOUT IBD. I hope you all enjoy my writing, I hope it sits nicely in your bathroom and most of all I hope it helps to open up conversation about IBD! Which really is the whole point. One of the best days of my life has also given me an incredible opportunity to share my story with the world. I hope it helps you tell yours; even if it’s just to the doctor.

You can buy ‘Go Your Crohn Way’ here or from all good retailers! à https://www.amazon.co.uk/gp/product/1848193165/ref=s9_simh_gw_g14_i1_r?pf_rd_m=A3P5ROKL5A1OLE&pf_rd_s=desktop-1&pf_rd_r=54BGRG8C8B5ESAGM3A23&pf_rd_t=36701&pf_rd_p=867551807&pf_rd_i=desktop

Book Up A Storm

I've neglected the blog a wee bit lately. Sorry about that. But with good reason! 

I’ve been so busy with book promotion, (how weird is THAT sentence?!), my real life full time job and stuff at home in my personal life that I feel like I've barely stopped to catch my breath let alone pen a blog post.

So here's what's happening. My first (and hopefully not last) book on living with Crohn’s Disease ‘Go Your Crohn Way’ came out 5^th May!  

Since my first book was published it's been an incredibly exciting time in my life, a genuine whirlwind and I've cried a LOT of happy tears. 

The outpouring of love I have received since the book was published has been overwhelming and completely unexpected!  Not that I think my friends and family are monsters who wouldn’t support me; but because I have been totally single-minded in focusing on doing the work (of which there is a LOT) to get it out into the world. I hadn’t stopped to think that other people would particularly care, or be in any way affected by something I had written. But at the end of the day I WANT people to be affected by the book: isn’t that the whole point? To raise awareness of an unspoken condition, to help give an understanding of life with chronic illness, and to help those suffering feel they are not alone and capable of living an AMAZING life? YESSSSSSS.                  

I had no idea having a book published would all be such an emotional experience! It’s not just my friends and family who have showered me with praise and encouragement, its people I’ve ‘met’ online, on Twitter and Facebook and through my blog. People I know well and people I don’t. How wonderful is that?

I suppose the subject matter of the book and the fact that it’s so personal has emphasised how people who love me are reacting to it. It feels to me a very cathartic experience; I’ve also found myself in a privileged position of putting something out into the world that may help people feel less afraid, isolated and alone. I wrote this book because it’s something I would have loved when I was diagnosed. I wanted to know that I’d have a life beyond my illness – something I didn’t think possible when i was being pummelled into insignificance with descriptions of my unsightly bowel and medical terms I didn’t understand.

I cannot describe how exciting it is seeing you all with your copies of MY book. When my partner saw his name on the inside cover (it’s dedicated to him, my parents and wet wipes) it was so incredible I wished that I could see his face could stay that way forever.  It’s all such a surreal experience and one I never thought would actually come to fruition. Every day is a treat and I don’t care that the hype will inevitably die down because my book will be in people bathrooms for years to come and I LOVE that fact.

I truly hope you enjoy it. And if all else fails, it’ll make the most luxurious toilet paper. 

Celebrate Your Bowels, C'MON!

It’s rapidly approaching World IBD Day!

Which, as we all know stands for ‘Inflammatory Bowel Disease’. Well done class! It’s a day where we aim to raise awareness of Crohn’s Disease and Ulcerative Colitis. Traditionally conditions that often go unspoken due to their ‘invisibility’ and complexity.

It’s very easy to fall into the trap of keeping quiet about these illnesses.

We find people often don’t understand just what is involved in living with a chronic illness, so we just don’t open the dialogue. After all, it’s easier that way isn’t it?

NOPE.

Not talking about IBD makes it shameful. It implies that as patients we have something to hide, something to be embarrassed about. It allows ignorance to run rampant, like a dinner party held by Donald Trump and UKIP. It causes insecurity, anxiety and confusion. When we remain mute on the subject of our illness we allow others the space to come to their own conclusions. Conclusions which are wrong, 99.9% of the time.

We have to talk to ensure we are consistently reaffirming the point that we have absolutely nothing to be ashamed of. We are living with illnesses that massively affect our lives and should remind ourselves often, that leading ‘normal’ lives around an abnormal illness, takes huge courage, humility and strength.  

So what to do to spread the word? And is all awareness ‘good’ awareness? Well it’s certainly vital we teach those outside of our illness what it entails, and how it affects our lives; but how?

I feel education is of the utmost importance. How can you expect strangers to comprehend your illness when you can’t really explain it yourself? I have Crohn’s Disease and I’M still learning about it. I experience something new every day. It’s never ending.

We need to help one another educate ourselves and others.

If you are knowledgeable about IBD then share! Don’t patronise other patients. When you do that you only make them retreat further into their diseased shells.

When I was first diagnosed there was so much information to take in it was utterly overwhelming. It was almost impossible to distinguish the accurate from the hyperbole. Everyone has their own horror story to share and none of them help ease a worried mind.

Use days like ‘IBD Day’ (and every day) to share your knowledge and support those who maybe don’t have as much of it as you. Don’t just raise awareness; raise the bar. Give the gift of information. It’s the most useful gift you can give; it’s non-returnable, recyclable and never gets old. 

On IBD day in 2013, I spoke in public for the first time since whispering a Philip Larkin poem aloud age 14, at a conference held in Birmingham aimed at raising awareness of IBD. I was asked to speak at the event by John Bradley, an author and all round lovely man. He has written on Crohn’s Disease himself (The Foul Bowel - http://www.amazon.co.uk/Foul-Bowel-Survive-Thrive-Disease/dp/0986620009/ref=sr_1_1?ie=UTF8&qid=1459157445&sr=8-1&keywords=the+foul+bowel ) and at this event he encouraged me in my pie-in-the-sky dream of writing my own book on my experience of IBD.

I went ahead and did it, and an actual real-life publisher has picked it up!

My own book Go Your Crohn Way – A Gutsy Guide in Living with Crohn’s Disease (http://www.amazon.co.uk/Go-Your-Crohn-Way-Disease/dp/1848193165/ref=sr_1_21?ie=UTF8&qid=1459154188&sr=8-21&keywords=crohns+disease) is out 5^th May!

The day after IBD Day I’ll officially ‘launch’ my book with my friends, family and favourite man in existence. If Jon Hamm is unavailable it’d be nice if my boyfriend was there too. My knees will knock once again as I try to talk in front of anyone more than my cats.

I truly hope you enjoy my writing; it contains my heart, soul and remaining guts.

I’m finally starting to feel proud of myself. Not only for writing my book; which in itself has been HARD. But because I previously thought that every nasty procedure, every stay in hospital, every day when I’m in work when I want to be hibernating in bed, was just life. My life. That I don’t deserve praise for what I should be doing. I don’t want it, don’t get me wrong, but I do want to start praising myself for these little victories. As should everyone with a chronic illness. Things such as getting out of bed, getting dressed and carrying out a day’s work aren’t akin to running a marathon for most people; but they are for us. Therefore it’s really ok to give yourself a pat on the back when you cross your own finish line.

IBD is an incredibly debilitating condition which has no cure. It causes agonising symptoms at its worst and is an endless inconvenience at best. It can be ‘controlled’ and ‘managed’ but nothing more. It affects it’s sufferers in minor and major ways, and can floor patients at the drop of a diseased hat. But it’s taught me the resilience of my fellow ‘crohnie’s’ is both surprising and wonderfully unrelenting. It’s spurned me on when situations have been as hairy and rough as my legs during a Scottish Winter. It’s given me faith in myself and my future – it’s not bleak and it’s not going to be all about Crohn’s. It’s going to be as bright as I want it to be, as bright as I allow it to be. NOT as bright as my disease allows. 

On days like IBD Day, and every day, being ‘aware’ of IBD isn’t just about learning what the gruesome side effects are; it’s also about reaching out a helping hand to another human being who might not necessarily look sick, but just might need it.  

Crohn Fine Day

Something I often wonder is when, if ever, I’ll be able to break out of that habit of trying to appease others over MY illness. I spend probably an unhealthily large chunk of my life telling people I’m ‘fine’ or implying that I’m much better than I am.

The truth is this is done 99% of the time because it’s easier. Although that does by no stretch of the imagination make it right.

Much as I talk about my illness, outside of blogging and writing I do like to try and maintain a ‘normal’ life. Something which I suppose is a goal I’m currently finding unattainable.

So where does the urge come from? This compulsion to make everyone from family and friends, to doctors, to colleagues I barely know, feel better about how I feel? And why?

I’m asked how I am but I still often find it borderline impossible to be honest. I think the key is the disappointment I receive. When I see frustration or upset flash across a loved one’s face, or even something resembling boredom from a relative stranger (‘you’re STILL ill?’) – It’s the feeling I’ve almost let someone down. My body failing is making me feel less like a social butterfly and more like an antisocial moth.

It’s important to remember the consequences of these actions however.

Denying the seriousness of your condition or dismissing how you feel as a triviality can have a much farther reaching impact than you may think. Telling your doctor you are ‘fine’ or playing down symptoms so as not to appear a ‘nuisance’ is the main issue: at the end of the day medical professionals are there to help you – they can’t do that without ALL the facts. You are a puzzle waiting to be solved, don’t expect Dr Columbo to be able to piece you together with vital clues missing. Tell them everything. Get over yourself if they look at you the wrong way, make snide comments or even YAWN directly in your face – rise above: that just makes them the ignoramus. How they react should never silence you to admitting your pain or fears. It may make it harder I grant you, but they’re not there to be your BFF.

Next, friends and family – I’m up there the worst offender for this one. I fall back into the ‘I’m fine!’ habit more than I cry at pictures of kittens in bowties (and that’s a LOT). I can’t speak for all of you of course, but for me it’s the sadness I can’t handle. The well-meaning titled head “awws” and the preceding 20 questions on why you aren’t better yet. All 20 of which I can never provide satisfactory answers to. Don’t get me wrong, I never discount the love and care of my friends and family as being an annoyance, I adore it and cherish them. I wouldn’t be who I am today without the love and support of everyone in my life: but sometimes it just exhausting being the one who has to give the bad news again and again. I don’t want to be the one who upsets people I love. That’s a natural reaction I reckon. Unless you have a heart of stone I suppose, and my heart beats for my loved ones, Jon Hamm and kittens in bow-ties.  

But it’s comforting to know that if that heart had trouble beating, there are people in my vicinity who can help with that. People who are trained to put me back together again physically, and the people I love who are trained in getting me back together again mentally. None of them can heal me if I don’t show them my wounds. So I’m trying (again) to resolve not to say ‘I’m fine’ when I’m not, and to put my health before appeasing strangers. That’s more than fine as a place to start isn’t it? 

My Little Brown Book

My first book on Crohn’s Disease will be published in a mere matter of weeks on the 21^st May! I’m very excited to share it with you. Here I have gifted you with an extract from it (completely GRATIS!!!!) I know, I’m too kind, I’m just a giver. Hope you enjoy!

‘It’s widely known that very few people are 100 per cent comfortable in discussing their bowel movements, and until I was diagnosed with Crohn’s Disease, I would certainly not have considered myself amongst them. It just wasn’t really the ‘done thing’ in my household. I’m not sure if this mild prudishness goes back generations or was just more of a trait within my own immediate family, but it’s certainly something I became more acutely aware of as my problems in that department began to escalate. I realised I felt vaguely uncomfortable and borderline ashamed about discussing anything untoward that may have been happening below the love handles.

I don’t, in any way, blame my parents for this. I don’t blame anyone, for that matter. It may have absolutely nothing to do with my upbringing, but there was obviously some reason I felt so unpleasant about discussing my own rear end. It’s just one of those things I can’t quite place. This ‘thing’ however, made it decidedly more difficult for me to be as honest as I could with doctors and nurses when they were struggling to diagnose my illness. I felt it was easier to nod in agreement with their suggestions than to express the full extent of the aforementioned ‘uproar’ I was experiencing down there. I wanted to save myself the red-faced humiliation, and no matter how much I was told they’d ‘heard it all before’ I couldn’t escape the fact that I was actually being forced to talk about POO. MY poo for that matter.

This fool couldn’t handle her own stool.

This missus couldn’t discuss her faeces.

This burd couldn’t debate her own tur…you get the general idea.

In Crohn’s Disease a patient’s toilet activities are very important indeed. What ends up in the porcelain can be an incredibly vital clue for doctors in establishing the extent of the disease and its effects on the body. Medical professionals can discover so much from just a small, unassuming stool sample. Not only that, but they can also garner a huge amount of information from simple questioning. All of which means as a patient you really have to get to grips with ‘talking shit’. Normally an absolute BLESSING for me. They will need to know specifics. What consistency is it? Is there blood in it? How much is there, and how often are you going? I’m never particularly comfortable with this kind of bizarre quizzing, but I’m slowly trying to learn to get descriptive about it. In fact I now find that more people around me feel they can openly discuss their own bowel movements, whether I want to hear about it or not. As though I’ve unwittingly become some strange form of poo guru. A Poo-ru, if you will. People have started asking me what it means when this, that or the next thing happens in their bathroom. I absolutely do not profess to be any kind of expert on matters of the rear, however I do have extensive knowledge of various unsavoury scenarios that people tend to think gives me insight others perhaps don’t possess.

Many new (and old) patients also find this type of ‘in-depth’ colon-versation difficult to take to at first. Most of these patients, thankfully, find that they eventually become immune to the discussions with medical professionals that take place around that area. They come to realise, as I’ve had to, that it’s essential, unfortunately, in helping the doctors do their job to the best of their abilities. At the end of the day, it’s our health on the line; therefore we should do everything in our power to help ourselves get better. I often find myself getting incredibly frustrated by the fact that there still seems to be such a stigma attached to Crohn’s Disease. This stigma spreads itself across several other bowel-related illnesses for that matter. We, as humans, are all essentially the same; we all take in food and water in the same way and all expel it in the same way too. So why should we be embarrassed to discuss these things openly? That’s not entirely true of course, humans with Crohn’s often find their bodies (and in particular their bowels) don’t work in quite the same way as those without, however much we would like them too.

When you have been established as a Crohn’s patient, you may find a lot of your doctor’s time can be spent at your rear end. Not a thought I’m sure you, or your doctor, will particularly relish. Colonoscopies and other similar procedures can be invasive and often require ‘probing’. You know – that thing that aliens always do in films when they come down to Earth for a visit. One could certainly say it is an alien concept, for a stranger to drug you then shove a camera up your back passage without so much as a mojito for your trouble. Then, as if that weren’t enough, for you all to sit around and watch the show on a screen! WITHOUT any popcorn. It’s an absolute scandal! I exaggerate, obviously; you do get a mojito (if you go private).’

For more of this nonsense you can purchase ‘Go Your Crohn Way’ when it is available to buy from 21^st May (and it can currently be pre-ordered from Amazon). You can sign up to email alerts from my publisher here:

http://www.jkp.com/uk/go-your-crohn-way-34107.html

Go Your Crohn Way

I’ve been having a bit of an existential crisis lately. Not to the point that I’m so much as questioning everything in my life, but more why I have I set myself up for failure. I’m launching a book in a few weeks; I’m throwing a launch party and have been posting the link to said book all over social media in a bid to drum up interest. I’ve told EVERYONE – including the bin-man and local window cleaner. I’m both excited and absolutely terrified in equal measures. I say ‘failure’ because one of the great qualities of my personality is my ability to jump straight to the pinnacle of anxiety by assuming the Worst Case Scenario wherever possible.

I don’t always feel this abject terror. It often comes then leaves just as quickly; much like a selfish lover.

But I do feel it today. I feel a panic of “WHAT ARE YOU DOING!?” / “WHO WILL READ THIS?!” / “WHY DO YOU THINK YOU ARE SUCH AN EXPERT?!” – all valid questions I grant you. Because these queries buzz about my head like doubting Thomases’ around … Jesus? IDK I appreciate I’ve gone off-piste here, but what I’m trying to say is that it makes it harder to focus on why I am doing what I am doing.

I have spent over a year of my spare time writing a book about my experiences in living with Crohn’s Disease because I want to show the wider world that there is life beyond chronic illness. When I was diagnosed I was utterly terrified of what the future held for me; or even if there was a future. I didn’t want to live in constant pain and I didn’t want to be ‘different’. The truth was of course, I always had been. I just didn’t know it. I started my blog to help myself – it was a marvellous and magical coincidence that it helped others – so now I write to help people like you.

I don’t profess to be an ‘expert’ on all things IBD – I don’t have an encyclopaedic medical knowledge and I don’t know what some things/symptoms/medications feel like because I haven’t done/experienced everything. Neither have you.

But I do know how it feels to live with a chronic and debilitating illness. I know how it can and does affect every aspect of your life and I know some ways to make life feel a little bit better. Many of those ‘ways’ involve medication strong enough to flatten an elephant but again I’m not a Doctor here so please seek medical advice before popping pills galore. Primarily talking about your condition helps - especially with people who love you – or/and with people who understand what you are going through.

But haud the bus here, I’m, not giving up all my tips and tricks away gratis! – my publisher would have my (remaining) guts for garters.

So I am probably contractually obliged to say that you can sign up to email alerts for my book Go Your Crohn Way here:

http://www.jkp.com/uk/go-your-crohn-way-34107.html

And/or pre-order it from Amazon here:

http://www.amazon.co.uk/Go-Your-Crohn-Way-Disease/dp/1848193165/ref=sr_1_1?ie=UTF8&qid=1457786598&sr=8-1&keywords=go+your+crohn+way

So while I certainly struggle with the idea of actual real life humans reading my ramblings I hope you know that I write for you and for me; life is tough and I want to make it less tough for you if I can. That’s why with every copy of my book will be a voucher for enough drugs to flatten an elephant.

KIDDING, MUM. 

Slice Of Life

Dear Surgeon, 

{name removed to protect privacy} 

You probably don't remember me. That's fine; you see people like me everyday. 

But I remember you. Just over five years ago you saved my life. 

I don't quite know where to begin in expressing how thankful I am for that. 

Perhaps I could send you a card with a heartfelt message in it - (done that). 

I could cuddle you against your will, post-surgery - (done that). 

I could ugly-cry on you in a morphine-induced stupor and tell you I love you - (yes, I've sadly done that too...) 

But all of that would (did) probably embarrass you. 

When I say you saved my life I mean that quite literally. You performed a surgery which served to stop me exiting this world much earlier than I would've liked. 

However in doing so you also gave me my life back. I hadn't realised it was gone until I woke up. 

I'd all but given up hope of ever getting better. I'd resigned myself to a life of pain; I was in a pit of despair. 

Then I woke up and I was alive. I felt something like happiness for the first time in a long time and it was wonderful. 

I'm not sure how much of this I successfully expressed on the afternoon of my operation. I think I said something like "THANK-YOU I LOVE YOU I LIKE YOUR EYESHADOW THANK-YOU I LOVE YOU", but I'm sure you could read between the lines at what I truly meant. 

I know you probably think this is all over the top, and that you were just doing your job, blah blah blah, and maybe that's true. 

But I want you to know I am grateful for you and all you have done for me. You saved my life and gave me the chance to help others by sharing my experience. I can't ever repay you for what you and your amazing colleagues have done, and continue to do for people like me everyday, but I hope knowing I am alive and thriving goes someway to stand as a testament to your handiwork. 

Keep on slicin'; you're ever so good at it. 

All my love and intestines, 

Kathleen xox

P.S. Where do you get that eyeshadow, it's beautiful?