Free And Diseasey

On the morning of my surgery, 3 years ago today, I was playing a wonderful game of make believe. I was carrying out an Oscar- worthy performance of 'being OK'. All for the benefit of my loved ones.
But also a little for myself.
Mainly to attempt to conceal the stomach churning terror I was feeling.
The truth is, no matter how cool a customer you may think you are, when the realisation hits that you are about to undergo surgery- all reason tends to float out the window, along with any ounce of courage you may have held onto. Undergoing a procedure that will, at best; change your life, or at worst; end it, is a prospect just a shade above horrific.

There are several little bits of the whole event you possibly won't expect, (and will quickly forget after you've been doped and sliced).
For example, shortly after being welcomed into hospital, waving a shaky-handed farewell to your relatives, you'll most likely be left to your own devices in a cold room while surgical stockings attempt to cut off your circulation. You'll be bombarded with sometimes graphic information, on what's about to happen then asked to place your unsteady signature on a piece of paper that informs you amongst various other side effects the following procedure may proffer; death is also a distinct possibility. SIGN ME UP!!
You'll wait. And wait. And wait. The longer the wait the less resolve to remain calm you'll have.
And then, finally after hours of playing every possible scenario over and over in your fuzzy head, you'll be whisked through to theatre.

I remember only snippets of my own particular scalpel-based episode. I mainly recall internal freak outs with external, almost Buddhist like, serenity. I was almost proud of my other worldly façade towards the outside world, I thought the doctors and nurses would be mightily impressed at their brave patient. Perhaps even give me a gold star at the end of it, or a morphine flavoured lollipop. Preferably the latter.

The last thing I remember before going under was lying on the operating table and being asked what operation I was about to have.
I went blank. I started to cry.

"I can't remember the name of it!? Oh god!! Something to do with my bowels! Oh god please I'm sorry!" 

I started to weep and panic (I cringe now thinking about it) and the nurse laughed his proverbial socks off at the state of me. Reassuring me he just needed to know I was 100% aware of what was about to happen.

I was never more aware of what was coming than in that moment. The sheer panic at the mere idea that I would be denied that surgery, reminded me exactly why I needed it in the first place. Because I wouldn't be alive if I DIDN'T have it.

The surgery isn't the hard bit. The fear is. Fear of the unknown. But the unknown is a better place.
I was there, shivery and terrified in my surgical stockings, for a purpose. To save my life.
And what could possibly be scary about that?

Everything I Crohn

Hello again. It’s almost 3years since I had life-changing surgery for Crohn’s Disease. Around the start of 2011 as a new year had begun, for me it seemed like the end rather than a new beginning. I was utterly hopeless and the idea that I would have to go through horrific surgery with the possibility of months of recovery, a colostomy bag and a life-long scar was almost too much to bear.

By the arrival of my operation I was seriously ill. I had, within the last 6months prior rapidly gone downhill. I was not eating (it wasn’t physically possible) I was in gut-wrenching agony every day (no form of pain relief could touch it), I couldn’t sleep, or walk further than a few steps without almost passing out, and most vitally; id mentally given up.  Now don’t get me wrong here, I was depressed yes; but I hadn’t given up on life. At least not on the lives of others anyway.  I was completely in love with my partner and adored those around me to the point of stalker-ism, there was absolutely no way on Earth I would have considered doing anything to cause them heartbreak or upset.  What I mean is that I had reached a devastating point of acceptance. I had come to see that nothing would change for me – no medication or treatment had worked, in fact things had escalated to the point I couldn’t bear getting out of bed in the morning, so I couldn’t see what the point in moaning about it was.  This in my mind, was my unfortunate life now and I simply had to get used to it.
The pain was unbearable and frequently reduced me to tears, I felt I had to try and find a way to fit my life around my illness – get to and from work, hold down my job and maintain some semblance of a social life, all the while trying to hide the fact that I felt that something was slowly but determinedly ripping my insides out from the inside.

Everyone knew. I was and always will be; a hopeless liar.

I gradually came round to the idea that not only was this operation essential; it may actually serve to make me feel better. This seemed such an unlikely resolution that I chose not to focus on it and instead worried intensely how I would cope with a potential colostomy bag and how brutally unattractive I’d be with a massive scar down my front. I really needn’t have worried; on either front. I didn’t end up with a colostomy and my scar hasn’t put my partner off the idea of jumping my bones on a regular basis no more than perhaps having my head and limbs removed might. (That wouldn’t either).  I’ve come to accept my scarring as a part of my body now, much like my long and decidedly repulsive E.T style toe. (Although that particular toe-acceptance took more than 3years).

I relay this story to mainly remind myself that giving up never solved anything. I have felt low since, and I’m sure I will again, but accepting those feelings is where I will always fall down. And stay down. Myself, and anyone else in my similarly diseased boat must remember never to give up hope. It may feel that you are fighting a losing battle with your body but try not to think of it as a fight – that way you are constantly setting yourself up for a fall. Crohn’s is an incurable disease – it will always have the upper hand, but YOU have a functioning mind and, (depending on your religious persuasion), soul; if you choose to use them positively they will always win out.

Another Rear Older

The few days between Christmas and New Year are always strange. If you aren’t back to work yet and are anything like me, you usually spend the time eating left-overs, watching old films you’ve seen a million and one times and generally trying to maintain some festive spirit; all the while secretly wishing it was all over with. Don’t get me wrong, I LOVE Christmas and everything it entails (except the credit card bill that arrives in January of course..), I just feel it can be a massive over-indulgence-fest that often leaves you feeling a little hollow at the end of it.

Perhaps this is why so many people make resolutions and promises to themselves as we approach the start of a new year. A fresh start, the first page of a new diary, something to look forward to. After all that’s what we are all striving towards isn’t it? Something to look forward to.
Very few of us relish what we are already so lucky to have. I’d have included myself in that sweeping generalisation in the past. In fact I still do. I don’t make resolutions when a New Year begins, but this year I have a few things I want to change and maintain in the months to come. I don’t want to mentally bully myself into accomplishing them because all that will truly achieve is me kicking myself and feeling miserable if the worst happens.

2013 for me hasn’t been great. I’ve experienced incredible pressures in my personal life, financial strife, sickness and family worries. My job has left me feeling unfulfilled and I’ve found myself in a battle of wills with my own lack of motivation to make any of those things better. This is the first issue I need to address – I need to find a balance between finding my motivation and maintaining it and beating myself senseless when I fall off the hypothetical wagon. It’s easy to know what you want out of life but harder to put those wants into solid plans of action. It’s also too easy to blame any of your apparent failings on your illness. Something I have professed again and again that I have never done, although when alone and in my quiet moments, can I really say that’s the truth? I’ve never decided not to go for something I’ve wanted because I know it will exacerbate my Crohn’s? I’ve never allowed myself to be held back from things I want because I’ve assumed it will make me ill? I’ve never decided not to go ahead with something because in the end my illness will always get in the way? I’ve done all of those things. And I hate myself a wee bit for it.

That’s what I need to work on in the coming year and for all my years to come; not letting my own fears get in the way of living my life to its fullest. My disease is a part of me; literally; and always will be. I’m always professing to everyone else how massively important it is not to let illness stop you from achieving whatever you want but when I really think about it, I’m just as guilty. I KNOW logically Crohn’s is making my life more difficult, it will make things harder and it will tire me out. It will mentally shatter me if I let it. It’s a battle of wills that I am more determined than ever to win. What would I have to show for my life in 30/40 years’ time when I’m still silently blaming my condition for my way of life? Nothing but bitterness and disappointment. That’s not who I am and certainly not who I want to be.

I have no one to answer to but myself. And as a new year begins I hope to remember that.

Happy New Year x x x

Colonoscop-Glee

This past week has been an emotional rollercoaster to say the least. It started with a Monday of bowel preparation in.. preparation for my Colonoscopy on Tuesday.
Now I finally know the inspiration behind that song 'I Don't like Monday's'. (Hope your backside has recovered Mr Geldof).
Bowel prep for me is by far the worst part of the whole colonoscopy procedure. It's a day/day and a half where you are only permitted to drink fluids and down pint upon pint of a foul tasting formula intended to 'clear you out'. This is swiftly followed by rushing back and forward to the bathroom for said 'clearing out'; again a similarly unpleasant experience.

On the morning of the colonoscopy I was almost excited; glad to have the prep over with and looking forward to getting a cup of tea in a few hours and a decent snooze thanks to the lovely sedation. However, this didn't go as planned.
I expected to breeze my way through the whole event, having been through it several times before I felt I was well versed in what it entailed, and knew if I just relaxed it would all be over before I knew it. This time I was nauseous. I was calm at my impending Kodak moment but annoyed that I felt relentlessly queasy with a pounding headache. I just put all of this down to the effects of not having eaten and the horror of the bowel-prep. T
he colonoscopy itself was incredibly traumatic. It seems trifling even mentioning it now but it was surprisingly painful and VERY uncomfortable. I was wide awake the entire time and seemingly felt every manoeuvre of the scope. Ouch. The sedation itself is not designed to knock you out, just relax you - needless to say it didn't work. I can only remember flashes now, the main one being a creepy looking man in scrubs giving me the evil eye and squirting a syringe into the air like a scene from some horror film in which my backside is about to be involved in a Human Centipede type calamity.

After the scope I was given my tea and sandwich and it was divine. However not long after this was devoured the nausea returned and I was anxious to get up and get out of there. I was to speak to the nurse to discuss the results, a moment I always find strange; surely its more a job for my consultant and at a later date when I'm not still semi-sedated and unable to properly take any information more than my own name on board. Nevertheless we had the discussion and I was told I have a large area of active disease, highly ulcerated and with polyps thrown in for good measure. All of this around the resection site (where I'd had the last area removed through surgery). She said I was not to worry then sent me on my merry way.  
I was devastated. I was also still sick. I then threw up all the way home and from around 5.30 'til 4am. Thankfully I'd had the foresight to request a sick bowl, and to pick my boyfriend's Mum who spent years as a nurse as my lift home. I was well looked after and my poor boyfriend dealt with me shivering, sweating and shaking all night in between violently vomiting.
I was also crying. A LOT. I couldn't believe I was back to square one again, worrying about getting fired onto an operating table and stressing about having to deal with this level of pain until that happened. It suddenly felt more horrific when trying to eat - I knew what was going on inside and that made me feel repulsed at the reality of trying to pass food through. (I didn't say my feelings were founded on anything other than my own temporary insanity). I was utterly shocked as I genuinely thought the pain I'd been in was just brought on by stress.

A few days passed and I was to meet with my consultant. He reassured me that things were not as serious and as urgent as I'd been led to believe. He advised most of the ulcers and polyps had been taken away for testing and he would report back if there was anything further to cause concern. He advised me they have caught this flare-up quickly and at the moment there was no urgency for surgery. They would be taking me off my drug trial and starting me on steroids and other experimental drugs over the course of the next few weeks.

I went into his office white as a sheet and came out almost skipping.
I am chuffed to bits that surgery is not in my immediate future and keeping my fingers, toes and other bendable bits crossed that the next few weeks of treatment will get things under control and give me some relief. I've been back to work since and its become apparent although I'm not getting up close and personal with a scalpel anytime soon, I'm still sick. As trying to walk more than a few yards without passing out or throwing up have proven. I still need to take it easier and reduce my stress levels and I plan to do just that over the festive period.
I hope you all do too. 

Thanks to each and every one of you for your continued and unbelievable support over the last few months. I hope 2014 holds everything you wish for. But mainly good health and happiness.
Merry Christmas x x

Things Can Only Get Bitter

In being diagnosed with a serious and/or chronic illness, it's initially very dependant on your attitude as to how you deal with it. After this initial shock dies down you have to actively make a choice; to survive and thrive or just survive. 

I've seen both sides of this particular coin in my short experience in living with Crohn's Disease. I've even been through both of them myself. 

I go through ups and downs with my disease, physically and mentally, on a very regular basis. This unfortunately isn't uncommon and can be incredibly difficult to cope with. Feeling down when in consistent pain or in being forced to spending prolonged or regular periods of time in hospital is natural; you have to make allowances for this and try to be kind to yourself. On the other hand ensure that when you are well you allow yourself to 'forget' about your illness if you can, and enjoy your life to its fullest. 

It can be upsetting when you encounter people who seemingly choose to focus on nothing but the negative. I've learned to steer clear of these attitudes wherever possible, whether it be in my personal life or in the realms of social networking. If someone's constant negativity starts to wear you down or have an affect on your own mental health, then show them the metaphorical door. This isn't always as easy as hitting an 'un-friend' or 'un-follow' button. If the person is closer to you than just a tiny face-box on a screen, then try to talk to them; explain you feel they always look on the dark side of life and might be better suited to trying to keep things positive. If this doesn't work first time, persevere if you feel they are worth the effort. If they still choose to put their energy into misery and bitterness, slowly phase them out. That might sound harsh, but it's really not, it's another tool for helping maintain good mental health. 

You are already going through a consistently difficult time, you need people around you who care, want to help in any way and who make you feel life is truly worth living. You must of course give the same back in return to your loved ones. Let them see you are thriving despite your condition. You have no idea the difference it makes to your own outlook and to the way others see you. 

Bitterness and anger at how unfair the hand you've been dealt is, will eat you up. It will impact on your health and on everyone around you. Remember that everyone faces trials in their lives, you are not unique in your pain. Don't play the martyr, if you need help then simply ask for it. You'll be surprised how accommodating people will be when you carry yourself with dignity and choose to live DESPITE your condition. 

No one can take your pain away, (although doctors can give you some lovely lovely painkillers..) but people can help you through it. But only if you accept your lot and make the most of the life you STILL HAVE.

Get better not bitter. 

Go Your Crohn Way

I’ve written a lot in the past about how drastically relationships can be affected in living with a chronic illness such as Crohn’s Disease. Mainly because it’s something I have struggled to adapt to since I became ill myself.

Anyone who has experienced a prolonged period of illness, or suffers from a chronic and/or incurable condition, will more than likely have established rather quickly who you can count on in your hour(s) of need. This discovery in itself can be both a blessing in disguise and a heart-breaking process in equal measure.  People you have perhaps known the majority of your life or felt close to, are suddenly starting to distance themselves from you and you can’t quite put your finger on why. Of course you know it’s because you are sick, but you don’t want to accept that this person would back away from you now; at the moment you need them most. It can be difficult to admit to yourself and can leave you feeling worthless, alone and in a strange state of limbo whereby it seems the illness is changing every aspect of your life.

Personally, I’ve been incredibly lucky in my own relationships. There are a few acquaintances that have slipped by the wayside as I’ve travelled along on my diseased journey, but that’s ok.  I know now that I’ve changed in a few ways; for the better. I’m the same woman I always was but now I don’t tolerate nonsense. I don’t tolerate anyone making me feel small or in some way less of a person because I am ill. I choose to have people in my life who make me feel loved and who make me feel safe, happy and like ME. I’m sick and will be sick until I’m here no more, so I want to make the most of my time. Especially when so much of that time can be spent with my head/backside down the toilet, in bed or in hospital.

There is absolutely no shame in discussing these feelings with your friends. If they feel initially uncomfortable in talking about your condition that can be wholly understandable. There can be a huge shift in your lifestyle that can affect your social life/romantic life which can’t help but affect those around you. It’s important you make allowances for that and allow them time to accept these changes too. However I’ve done that for too long. I now know that the friends I have put my well-being above anything trivial like a night out. If I can’t make a date I let them know and they never pressure me, never show annoyance (even though I’m sure sometimes it must grate) and always ask for my welfare above all else. They know how much I try and how much I care for them and I’m finally accepting it’s ok to be cared for in return.

I’m sure that’s perhaps not as much of a revelation to lots of you as it is to me but I suppose that says more about my lacking feelings of self-worth. I’ve allowed myself to be worn down my Crohn’s over the years and that in turn has given me cause to be walked over like a badly worn doormat.

The men and women in my life are the best people I’ve ever known. I have a close knit group of friends and close family who are there for me 100% of the time. They know they have this unspoken promise reciprocated and it makes for a feeling of security and love that leaves me blissfully happy. I love my friends and feel that love in return like a cold flannel on the face when I’m having a hot-flush.  Sometimes literally.
Ridding your life of toxic people or just dead-wood in your friendships makes more room for the good ones to get in. It can be hard enough to make time for your loved ones, so don’t waste valuable time on those who don’t deserve it. That should really be a general rule for life, illness or not.
Making allowances for the way your illness affects those around you is crucial. But accepting feeling like a burden is never ever to be tolerated.

Don't Worry, Feel Crappy

I’ve spoken before about how massive a part stress can play in causing or antagonising Crohn’s symptoms. When I first heard this I thought it was mad. I thought it was a daft new-age theory to suggest that minimising stress could ease my disease. However, having now lived with the condition for several years now, I’ve come to realise what a terrible catalyst stress and periods of upset can really be on the body.  

For me, and apparently many other Crohn’s patients, these stressful episodes can cause flare ups of the disease which often linger around long after the stress itself has subsided. Very annoying. When I feel stressed, or am having a difficult or upsetting time in work or in my personal life, I tend to feel the symptoms build and build to a crescendo whereby my bowels digestive symphony is totally out of tune. I feel run down and all the issues I normally have to deal with on a day to day basis become amplified. I am zapped of energy and this in turn doesn’t serve to help in dealing with trying to get on top of the aforementioned stress in the first place. It can all get too much and cause periods of major blue moods if you don’t catch it in the act. 

Stress can have a devastating effect on the body and is often unavoidable. I try as best I can do keep my life as stress-free as possible, but this is easier said than done. Long after the stress has passed I find I’m left with a resulting flare up and the consequences thereof. This often lasts anything from days to weeks after and can be difficult to deal with. For me this particular resulting flare has now lasted over 2months, and has been so vicious and nasty that the hospital have been trying to pierce and probe me for Scotland. They’ve also been running tests on me too.  Hopefully this is just a flare up and can be managed with something as simple as a change of medication, as the idea of being back in the same situation as I was during my initial diagnosis is too much to bear thinking about. It will only stress me out, and that’s the last thing me or my bowels need.

In speaking to many of you about how stress affects you and your Crohn’s, many of you share my experiences. In fact many of you have called Crohn’s ‘the gift that keeps on giving’. I couldn’t put it better myself – Crohn’s makes many of our lives a misery on an everyday basis then increases it’s annoyance tenfold when we are already under incredible stress elsewhere.  Helpful. It’s just another horrible irony in living with Crohn’s that the worse you feel mentally the worse you will feel physically, and vice versa. You can feel you are constantly fighting a losing battle against your own body. But then again what is the alternative? Lie down to it? Well maybe just for 10minutes…