Saturday, 28 December 2013

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

Saturday, 21 December 2013

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


Monday, 16 December 2013

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. 


Saturday, 7 December 2013

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.


Sunday, 1 December 2013

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…


Thursday, 21 November 2013

The Gutty Professor


Lately I've found myself in a bit of a funk. Not the Bee Gees-disco-ball-Saturday-Night-Fever kind of funk unfortunately, more of a Want-to-bury-myself-in-my-pillow-until-Spring kind of a funk. 
I've felt as though I'm rotting away like a discarded apple core and there's been nothing I've found to pull me out of these blue moods.
There is of course a reason for all this drama; I've been ill. Well, ill-er than normal. I've been in the midst of a particularly nasty flare-up, (I still am), and I'm worried about what lies ahead. I've been trying my best not to wallow in this misery, as I generally try to be as positive as possible in living with Crohn's, but sometimes it's hard to pick yourself up and get on with it AGAIN and AGAIN.
It often feels entirely hopeless when you are sick for prolonged periods. The word 'incurable' really hits home and it's incredibly infuriating.

I've felt in the last few weeks that I've been grieving for my former life. This feeling comes in spurts and normally goes just as quickly as it arrives. Much like a continually disappointing lover. 
Like any loss in life it's something you rarely get over, you just learn to live without it. The trouble with this particular loss is that I AM still living with it. 
 
In 'lifetime' terms I'm still relatively new to my disease. Although it certainly feels as though I've been suffering from the illness for the majority of my life. It's when the symptoms pile on top of one another that it starts to become more of a burden to carry than a diseased companion along for the ride. Like right now. 
Grieving is of course a slow and painful process; especially when you find yourself fighting the murderer of your former life on a daily basis. Slightly disturbing analogy perhaps but a lot of sick-leave makes for a lot of crime-drama viewing.
 
I'm only able to write this post as I think I'm slowly starting to come out of this particular blue spell. There is of course no getting away from my Crohn's Disease and there's certainly no quick fix, so why choose to linger in the misery? Because it's not a choice. It's an inescapable routine and I often feel I just have to ride it out until things don't feel so bad in head as well as body. 
 
Eating and drinking hurt. I can't sleep. I have a relentless headache and shivers and sweats. I feel faint and nauseous all the time and have 0.00% energy. It's hard to get through the day without wanting to weep at the utter uselessness of my body and it's even harder telling people that that's how I feel.

I don't ever want pity from anyone, and I certainly don't want anyone I love to feel sad for me in any way, and I believe I speak for the vast majority of Crohn's patients in airing those thoughts; but I do want people to realise that there's more to Crohn's than just a little pain and a lot of money spent on toilet roll. 

                                                       

Friday, 15 November 2013

Diseasey Street

When you live with a chronic illness you begin to become acutely aware of how other people react and adapt to your condition. There are two particular extremes of behaviour that have become the most prevalent in my life. These behaviours show themselves when someone around you is unwell themselves. 

Some seem to be a acting under the false pretence that because I am ill, I won't want to hear about their current situation. Or worse, that they are somehow belittling my condition purely through expressing their own symptoms. I hear constant cries of "...But it's nothing like you are going through..", or "...But obviously you have it worse.." almost immediately after talking about themselves. Like they've caught wind of the words that have just come from their own mouths and feel insta-guilt. 
There is no shame in being a sick friend of your sick friend. Please try to remember that our illness is a PART of our lives, not all of it. We want to know that you are doing ok because we care. In fact most Crohn's patients will profess that they've found themselves to be more accepting and understanding of others conditions through adapting to their own. We have simply become more awesome despite Crohn's. 
It's unnecessary to feel you cannot be open about your own issues for fear of offending us. It personally takes a lot more than telling me you have the flu to offend me. Although please do remember to choose your moments and activate your common sense; i.e. Complaining about a rash when someone is on a life support machine probably isn't appropriate. Or so that nurse told me anyway. 

At the other end of the sickness scale, some people will feel more inclined to talk about their own illness to sufferers of chronic illness because they consider us to be some form of walking-talking fount of all medical knowledge. It's certainly true that in living with Crohn's we have been probed more regularly than E.T's phone. We mostly have a vast and varied knowledge of medical procedures and medications. We KNOW pain relief and the signs of an oncoming flare-up. But we are not doctors. (Well I'm sure some of you are but you know what I mean). 
On the whole we are happy to help and advise when you come to us with a problem, just again bear in mind that it's tough for us and we don't always have the energy to solve our own medical mysteries ourselves let alone yours. 

So in conclusion, please talk to us when you are sick and grant us with the same compassion we try our best to offer you. Let us help you when we can to the best of our ability. Because anything you do to remind us or make us feel that we are not who we once were is more offensive than ever telling me about that weird spot on your backside. While I'm eating. 

                                                     

Sunday, 10 November 2013

Crohn Fishing


I've had a rough few weeks. Thankfully not all entirely due to Crohn's; various other issues have recently begun to pile on top of one another until I'm seemingly fit to burst. 
Of course it's a well-known fact that Stress and Crohn's are about as compatible as ice cream on toast, so it really goes without saying that the stress of the last few weeks hasn't exactly led to the healthiest I've been either. 

I usually see myself as a pretty optimistic person. Especially where my disease is concerned. But lately it seems that no matter what I seem to do to attempt to drag myself out of the doldrums, I get yanked back in.
I've been experiencing all the tell-tale symptoms of a Crohn's flare; shivers and sweats, dehydration, mouth ulcers, loss of appetite and that old chestnut; abdominal pain, to name but a few. 
The signs of active disease are there and unfortunately I'm at a bit of a loss physically and emotionally to fight them off at the minute. Of course I have been carrying on with life regardless and trying to put these symptoms to the back of my mind, but when they start to increase tenfold and all at once, it becomes more difficult to keep a lid on things. 

I’m feeling more positive after having seen my consultant this week. He, and the nurse I see regularly are very easy to talk to and both know their stuff and me, inside out. (Quite literally.) The consultant will have me in for another MRI in a couple of weeks and then possibly bring my scope date forward from the New Year to late 2013. Not the best of news but certainly reassuring that the issues I’ve been having lately aren’t being ignored. I’m also very bad for making excuses for my symptoms, i.e. “I’ve been stressed lately so it’s probably just that” and swiftly brushing how I’ve been feeling under the carpet as if I’ve somehow brought it on myself.  This time I just laid myself bare (not literally obviously; the last time I did that I got a restraining order), and left it to the experts to get all Sherlock Holmes’y on my bowels. The consultant said he can definitely feel a “mass” which could potentially be something to worry about or not – best case scenario it’s just inflammation due to stress which will dissipate when the stress does.
Whatever the outcome of all these forthcoming tests is that the bottom line, (pun always intended), is that I will deal with it. If I have to have another camera manoeuvred where God didn’t intend it to be; so be it. If I have to have another surgery and 4months worth of biscuits rammed down my gullet; BRING IT ON. People come through much worse. Just knowing I’m being well looked after and my worries are being investigated already helps ease my troubled mind.


Not sure why I’m telling you all this, suppose I still see this blog as a form of public diary. It somehow helps to air my diseased laundry in public. Plus if even one of you takes heed and sees the doctor yourself if you are worried about something that doesn’t seem right, then it’s worthwhile. Don’t be a martyr to your body like I was for so long, the only person your holding back is yourself.  


Tuesday, 5 November 2013

Dr Strange, love

 
When you live with a chronic illness, spending lots of time in hospital or with your doctor tends to come with the territory. It's a requirement we have as patients in order to maintain as good a level of health as we can. 
So it stands to reason then that we will often end up forming relationships with medical professionals which are based on (preferably mutual) trust and respect. This isn't my very public way of breaking bad news to my partner of course, so let me explain what I mean..
 
The doctor must treat you with as much dignity and patience as possible, whilst keeping your details confidential and preparing for consultations with as much background as possible to hand. A patient also has responsibilities of course; we are expected to be honest and open about our symptoms, and to follow any given advice to the best of our ability. It's a mutually beneficial relationship that can develop over time.
After several weeks, months and maybe years with the same doctor, these patient/professional relationships can be a massive comfort. It's incredibly reassuring as a patient to feel you are being listened to, and even more importantly; being understood. An unprepared and uninterested doctor makes for an unhappy and anxious patient. 
 
I've been very lucky with my treatment in the years since my diagnosis. I've felt my consultants and nurses have ensured I'm well aware that help is only a phone call away if I'm really struggling and that their support is always around me like a safety net. Although not literally because that would be really weird. And probably breaking some major rules.
 
Prior to my eventual diagnosis I was passed from pillar to post before eventually being herded down the right path towards a viable resolution. I realise now how difficult Crohn's can be to diagnose and the various plethora of tests and procedures normally required to get the medical mystery solved. Of course diagnosis is really only the beginning, it can then take an even longer time to find the right form of treatment for each patient. Everyone is different and everyone reacts to treatments and medications in their own unique way, which unfortunately can often require the doctors to start with trial and error until they make a perfect match. Like some warped Blind Date but with medication and patient instead of two lonely singletons. (Where Cilla Back fits in to this analogy I have absolutely no idea.)
How the patient reacts to these treatments can also change over the course of a lifetime as the disease can be so changeable, and annoyingly, incurable. 
 
When you are lucky enough to have someone in charge of your care who takes the time to get to know you and not just treat you like another pest to cross off their list, it's a truly wonderful thing. This is why is can be so worrying when changing doctors for reasons out with your control. It's an anxious time for a patient and can feel like starting from scratch again. Infuriating, especially if you've previously dealt with someone who knew your condition inside out. Often literally.  
Try your best to help your doctor wherever possible. It's their job to help you feel as good as you  possibly can; hindering that because things are not moving as quickly as you'd like really doesn't help either of you. I'm learning to be more open with my consultants, I usually try and make excuses for my symptoms, or find the answers so they don't have to; but the fact is I'm the sick one and they are the sticking plaster. If I keep that in mind I cant go far wrong.
 




Saturday, 2 November 2013

The Ring


As it’s around Halloween, traditionally the scariest time of the year, I thought I’d use the more stomach-curdling aspects of Crohn’s Disease as the basis for this post.  Enter if you daaaaaaaaaare!  (A statement, incidentally, you should never use as a chat-up line).
Crohn’s is known as an ‘invisible illness’ which means that thankfully we as patients can keep the majority of our symptoms under wraps. This can be an absolute blessing, as if anyone was to see what was going on the inside on the outside they would think they’d entered the set of a horror film.

The condition of our insides, tend to leave a lot to be desired. I try to remember I have a disease which means my body is diseased – hence the hideous images that conjures up. When I had my first colonoscopy several years ago I thought I’d be a cocky and confident patient and stay as awake as I could to view my guts on the big screen like some warped masochistic horror fiend. This lasted mere moments before the drugs rendered me dozy, but the images have lasted a lifetime in my memory. I was, and am amazed at having been able to see my insides on some form of bizarre live feed, and the experience wasn’t entirely un-pleasant. I was shocked to see how horrendous the inside of my body looked. I felt hopeless at the realization that no matter how much make-up or body lotion I slavered onto myself, I would still be ‘ugly’ on the inside. The disease was still killing me from the inside out and that in itself was a terrifying prospect. After surgery things have improved but the illness itself still regularly reminds me how many horror sequels it’s capable of...
Having Crohn’s tends to demand a massive amount of time getting intimate with the porcelain. We often have to dedicate hours of our day to sitting on the toilet until our body decides to give us a well-deserved break. This allows for a lot of reading time and Candy Crush time amongst the crucifying pain. Because we are using the facilities so regularly we can often find ourselves having agonising backsides, chills, sweats and even masses of blood from the rear. This can either be due to tearing, or something more sinister. The first time I attempted the toilet after my surgery the pain was so incredible I thought I was DYING. In fact I reckon I would’ve gladly taken a bullet to the head at that moment to end it all. Although perhaps a bullet to the rear would’ve been decidedly more effective.
Although the illness is generally at its worst on the inner body, it tends to show itself on the patients outer-casing at times too. For me it’s mainly my skin and hair that are likely to be most badly affected. My skin becomes dry and chaffed and my face breaks out. My hair falls out in clumps and becomes dry and brittle. My lips turn white when I’m dehydrated and I lose all colour from my face. Not really a massively noticeable concern right enough as I look like a cast member from Twilight as it is.

These are all highly unpleasant symptoms, part and parcel of an even more rotten condition.  But most should be used as an early warning system to alert us that something is not right. Act on your symptoms and don’t just accept everything Crohn’s throws at you. Learn as much as you can about your illness so you can be prepared if things go downhill. If it helps, keep a medical diary to watch for any potential patterns and changes in your condition, it can be a massive boon when speaking to your doctor.
So, all scary stuff. As a rule I generally don’t like horror films as I’m a big mad fearty, but I’m certainly nowhere near as repulsed by gore anymore thanks to my experiences post- Crohn’s. I can now even watch an entire episode of E.R without almost gagging. So swings and roundabouts eh?



Tuesday, 22 October 2013

Comfort Crohn


 When I started writing this blog, about 2 and a half years ago now, it was to fill my time.
To keep me amused after my surgery and to keep my mind active and focussed on something more constructive than daytime TV. I was mind-numbingly bored and recovering at home after having had my first (to date) major Crohn’s surgery. I had a bowel resection; which to the uninitiated is a procedure whereby the surgeon removes a small part of the patients’ bowel and intestines, the aim being the subsequent removal of the most badly affected area of disease.  In my case the operation was thankfully a success and the most badly affected part of my insides ended up in a surgical waste disposal somewhere rather than killing me from the inside out.

It was a terrifying time in my life and being in and out of hospital was a whole new world which was relentless and depressing in equal measure. I was unbelievably relieved to be granted this operation which I’ve been consequently advised after the event; proved to save my life. I was expected to come round from the operation with a stoma; I didn’t, another fact I took as a victory. I was gushing with joy (and the morphine was wearing off…) at the outcome of my surgery. My scar now remains to show how far I’ve come since then. It’s more like a proud battle scar in my mind now than something I initially saw as a repulsive eyesore. It all seems a lifetime ago at this moment and I am incredibly grateful I’ve been nowhere near as ill as I was back then. I’m not under any illusions that I won’t be in the same position in years to come. I’m very aware that due to that pesky incurable aspect of my condition, I will most likely get worse rather than better and that any further surgeries I may have to undertake will be decidedly riskier than the first. But I know how determined I have become, and that I will run the risk of anything to make sure I can be as healthy as possible and can make the most of the life I am so lucky to have.
The reason I’m reliving all this for you is not to be maudlin and self-pitying, but to reiterate to anyone reading that there are always going to be trials in your life. However small or insignificant they may seem compared to others, and you will always be tested. How you deal with those tests is truly in your hands. You can allow yourself to lie down to the challenges in your life and let yourself be steamrollered into the ground, or you can choose to be bolder than you thought possible and face hard times with enthusiasm and hope.

In the last few years I’ve been uploading these posts it’s become apparent that many of you enjoying reading my writing. Being Scottish and therefore practically incapable of accepting a compliment this in itself is a bold move for me to admit. I’ve discovered how much I love writing; and this blog in particular. It’s like a public diary for me (without all the explicit stuff, and by that I obviously mean how many Jaffa Cakes I can eat in one sitting) and a form of therapy in a way; to know many of you feel as I do, disease or not, serves to remind me I’m not insane. And that I’m not alone. So I suppose this post is really just to remind you all the same thing. My wonderful friends and family have shown me in the last few weeks that I am truly loved. It feels good to be reminded, because sometimes its necessary. I want to spread some of that warmth your way. Whoever you are, you are not alone, the feelings you feel are real and things are never as bad as they seem. There is always someone willing to listen if you are willing to talk. Open up and let someone in. I mean that in the least sexual way possible of course. My Dad might be reading this.

And it’s 12 by the way.
12 bloody DELICIOUS Jaffa Cakes. My proudest achievement to date.
 
 

Sunday, 20 October 2013

To Each His Crohn


My blog posts have been pretty down in the mouth lately. That’s mainly because I’ve been feeling distinctly below par. Both mentally and physically. The two tend to run in tandem for me where Crohn’s is concerned.   I try my best to remain positive when symptoms strike, but it can be incredibly difficult. I’ve spent most of the week throwing up, rushing to the toilet and in pain.  
The problem with pain and Crohn’s is that if you’re anything like me you can forget how bad it can be until it invariably strikes again. Pain can vary from slightly annoying cramp-like niggles to the feeling you are being stabbed in the stomach with a red hot poker. Frequently unbearable and can often impede anything from walking long distances to simply sitting upright.  
The pain is awful and can be relentless. But it’s not the discomfort that gets me down as such; it’s the potential for interference of plans. When the disease starts to involve itself in my social/work life is when it really hits home how much of an impact it has on my life. I hate when it’s necessary to change plans and let people down due to my illness. I can’t stand when my condition affects my work and get unfeasibly frustrated when I can’t perform even the simplest of tasks without almost keeling over.
Lately I’ve been thinking a lot about my future and what I want out of life. Obviously in an ideal world, Crohn’s Disease wouldn’t be top of my list. But I’m stuck with it.  

One of my favourite lines from one of my favourite songs is ‘You get the love that you allow’. I want to have the disease that I allow. What I mean by that is that I intend never to lie down to my illness. Unless I’m under general anaesthetic I imagine. Whilst I am well, I will relish it and when I’m sick I’ll deal with it with as much dignity and grace as I can. Behind closed doors of course; there is frequently little dignity in a bowel condition. When Crohn’s interferes in my day to day life I’ll try my best to dedicate the time I need to get better so I can feel like ‘me’ again and not an invalid.
Crohn’s can take away such a considerable amount of control from the patient that it’s essential you retain as much as you can of your life ‘pre-Crohn’s’.
I aim never to allow what can be seen as a negative to cloud the positives in my life. How I manage that is really up to me.

Sunday, 13 October 2013

Crohn to Pieces


Lately I’ve forgotten who I am. I feel a little like I’ve lost my identity.  I haven’t valued myself enough, if at all, and I am struggling to establish where I fit in in my own life.
Everything is up in the air and people who I have previously never doubted have suddenly executed U-turns which have knocked me for six. I’ve spent the last few weeks feeling quite forlorn and alone and I have been struggling to see past it. I’m writing about my woes because I feel it helps me think more clearly. I apologise in advance if it sounds at all whiny. If you regularly read my blog you’ll know this is never my intention. And if you know me in ‘real life’ you’ll understand why I’m being cryptic. Sorry about that.
I’m frightened of the future. I am afraid of what lies around the corner and unsure of my role in the world. I’ve never felt this way before and this is possibly what frightens me the most. I’m not depressed; anxious perhaps, but I don’t feel hopeless. Just a little bit afraid.  Before now the only things that scared me were Jenny Long Legs and those illustrations in my childhood story book of people with no features on their faces. ARRGH.

My disease is active and helping out my current stresses by acting up. This just adds to my already existing worries and makes life that little bit harder. For once it’s not my main concern but it serves to remind me that no matter what life throws at me I’ll have to consider my condition in everything I do. I’m blue and feel dejected. I know I need to pull my big girl pants up and get on with life but at the minute it’s easier to hide in a cupboard till it all blows over. Not literally of course, I’m also claustrophobic. (Should really have mentioned that under ‘things that scare me’…).  Living with Crohn’s Disease takes its toll and when stressful situations arise it’s hard not to feel sorry for yourself. I generally steer clear of this course of action as it’s a trait I find abhorrent in others. I prefer to focus on the positives and the rest tends to follow suit. Although it feels lately there haven’t been many of those positives to cling on to.

For once I don’t really know where I’m going with this blog. I think I’m just trying to remind you (and myself too probably) that you mean something to someone. You are special and unique and when you forget it make it your priority to surround yourself with people who love you and remind you.  The thing is, it’s very important to remember you are important. You offer something to the world. No matter what anyone else tries to tell you.  I need to take some time to remember that myself. Maybe I should just try to get over all those things that scare me.
Thanks for listening, I’m off to jump into a wee cupboard filled with Jenny Long Legs and cuddle someone without a face. X



Wednesday, 9 October 2013

I'm So Tired of Being A-Crohn

Whether you live with a chronic illness or not, it's important to surround yourself with positive people who are a source of inspiration wherever possible. 
My parents, brothers and group of closest friends are a never ending fount of inspiration to me. They smile and endure the difficulties life throws at them, and come out of every challenge they face that little bit stronger.
Individually they are all incredibly different people, with often polar opposite outlooks in life, but they all have their humour, kindness and enthusiasm for life in common. 
They are all human, therefore they often fall to pieces and air any gripes they may have, but they never whine. Never weep and wail about how hard done by they are - and if the urge ever takes them to do so, they do it with dignity; behind closed doors or in confidence of a loved one. They keep their personal lives private and share their highs and lows with the people who deserve to hear them. 
I hope over the years I have developed even an ounce of their strength and resilience. 
I'm not trying to make you jealous here at how unbelievably awesome my friends and family are; just trying to remind you to focus on those that matter to you. Take inspiration from the way the people you love are. 
 
Crohn's is still such an unspoken and 'embarrassing' illness that it's often easy to forget that people can still feel awkward or ashamed to discuss it. I certainly don't think that's right, or healthy, but unfortunately it's the way of the world at the moment. 
I'm not ashamed of my illness. I don't feel I ever have been.
There was such euphoria when I found out what was wrong with me that it cancelled out any potential horror I may have felt at the realisation I'd be thinking about my bowels everyday until I kick back in my grave. 
It's not a well known illness so it's one we often need to explain again and again. This can be relentless and frustrating and just really, really BORING. That's why I find it vital to have people in your life who 'get it' and who would never think less of you because of what you suffer from. Oh and most importantly; who would never pity you. 
There's no reason to ever feel alone with your disease. Open up to those around you and they may surprise you by showing you just how wonderful they really are.X

                                                         
 

Wednesday, 25 September 2013

Ache It Like A Polaroid Picture

The other day I got to thinking whilst flicking absentmindedly through my virtual photo album (my phone).
I've always loved photos. Not of myself you see; I don't think I've been photogenic since around 1983 and even then I was probably screwing my face up at having to eat a Rusk. No, I love taking photos. Of my friends, family, anything the makes me happy or that I feel will remind me of my happiest moments. I have countless photo albums with Polaroids and actual photographs you can actually hold in your actual hands, from the days before I cautiously dipped my toe into the world of smart phones and digital cameras. 
I love to look through these photos when I'm feeling a bit blue or fed up. They remind me that my life isn't, and hasn't ever been, all about being sick. 
It's pretty much been confirmed that I've had Crohn's Disease for most of my youth, but I've only 'officially' had it since 2010. I don't like to think my disease has massively affected my life, but that would be foolish. And a lie. 
 
In the beginning, Crohn's made me unhappy, caused me to drift from friends at times, made me shut off from the world and generally become a misery guts for prolonged periods. But has it really? Or was that just my chosen mentality brought on by my situation. I fear the latter.
Although I constantly preach that Crohn's can have a major affect on your mental health as well as your physical (which I still firmly believe), I feel a lot of the responsibility falls on the patient to combat this. You need to take control of your life, in the moment and in the future. Decide if you are going to lay down to an incureable illness or strive to be the best you can be despite it. Again I choose the latter. I'm not by any stretch of the imagination saying I've gotten there yet, but I will. 
 
When I look back through my photographs I don't see misery and sadness, I only see the physical ravages of Crohn's; my hair falling out and becoming thin and dry, my moon face from excessive steroids, my stance; hunched up and uncomfortable, my skin; broken out and painful, my scar from surgery, the pain in my face and of course, my positively skeletal figure. 
These are all unfortunate reminders of how ill I've been in my recent past, but they make me feel positive rather than forlorn. I know the signs because they are documented and neatly stored in an album. I know what to watch out for when I'm becoming sick again and I know I can still live my life to it's fullest regardless, even when I'm at my worst. 

Say cheese! (But only a slice for me, I shouldn't really have dairy..) 


                                            


Saturday, 21 September 2013

Here I Go Again On My Crohn..

I'll be getting a new boss at some point this week. This isn't major news in itself, but to someone with a chronic illness who has an absolute belter of a boss, it's a teeny bit heart-breaking. Don't get me wrong, I'm thrilled for her moving on as she is beyond lovely and deserves to be blissfully happy in her work, BUT, I'm also incredibly anxious as to what will happen when she's gone. 
I'm fairly sure my new manager will be great, know their job and a super person, it's just that the thought of starting from scratch in explaining my illness fills me with utter dread. 
Crohn's is such a complex disease with so many symptoms that it takes time, patience and effort on another persons behalf to get to grips with everything it entails. My current boss took the time to learn all about it, inside and outside of work, she listened and helped in any way she could, and did everything she could to make my time at work more comfortable. She also just knew over time, when I was sick and trying to hide it from her and focus on my work. I feel I can talk to her about anything and not be judged or thought badly of and she knows I respects her enough never to take advantage of her kindness. 
I know it's a lot to expect to have that same level of care from someone new, especially straight away, but I can't bear the thought of not having it at all. It may take years to get even vaguely close to the understanding she has of Crohn's with someone new, if it even happens at all.

Small changes like this to a 'normal' person are difficult enough as it is; as a race we are generally frightened of change, even on a small level like this. But when you have an issue which goes unseen and often unspoken, one which people often struggle to grasp, it can be incredibly frustrating to start afresh. It can often feel you are constantly trying to justify why you are STILL sick. 
My previous boss didn't get it. He wanted a nice easy case of employee is ill then well - back to work as normal, when in reality he had me; in and out of hospital with minimal information to provide him with, I wasn't getting any better and had no clue when or if I would. 
My current boss understands that if I can't contact her straight away it's because I'm in agony/on the toilet/in hospital/all of the above. She knows I'm not and would never take advantage of my work due to my condition. But then she knows me. 
That's why the prospect of a stranger who doesn't is scary. 
Its an intimidating thought but I suppose the best I can hope for is someone understanding who is prepared to listen. And isn't afraid of the unknown..*
*my rear end..

                                                  
 

Saturday, 14 September 2013

Diseasey Rider

This week is 'Invisible Illness Awareness' week. 

It's a week in which I assume, we aim to highlight  the struggles that people with un-seen conditions have to endure in their day to day lives. 
Great, but the only slight snag with that I find, is the 'highlight' part. By it's very nature an invisible illness is just that; invisible. So how can we possibly show you what goes on inside? 
Put simply, we can't. 

It's often said that if people could see what goes on under the cover of a Crohn's patients skin they would think differently about how they treat said patient. Well I would hasten to add that that would potentially be the case if anyone, healthy or otherwise, were suddenly to start parading around skinless and as naked as the day (before) they were born. 

It's true to say that having an 'invisible illness' can be both a curse and a blessing. It's incredibly difficult to explain that you feel like death warmed up when people on the outside don't see any physical change whatsoever. It can become increasingly frustrating, and often feel like you are trying to 'prove' yourself to others, when really it's the last thing you have energy or time for. 

I wholly admit I often find the 'invisibility' of Crohn's a challenge; but on the whole it's funnily enough the one aspect of my condition I am mildly grateful for. 
I feel it allows the patient to claim a bit of their control back. YOU decide to tell someone, YOU decide who you want to know and YOU can power through it without having to tell a soul if you so desire. 
Crohn's can take away so much of your dignity, and affect such a huge chunk of your life that I find having that power over what I choose to conceal and what I choose to reveal, an immense relief. 
I don't have to tell every single person I meet what's wrong with me from the get go, I can disclose the ins and outs of my barmy bowels when and if, I see fit. 

However, although this sickly cloak of invisibility can be a found to be a bonus, it often leaves you in awkward positions in which you feel helpless to express yourself..
Today I was at the shops, I felt tired and weary when I left but by the time I'd gotten through my short shopping list and was awaiting the bus I felt AWFUL. Panicky and hot, sweating and shivering and in incredible pain. I was breathing through the cramping and willing myself not to pass out. I focused on the bus pulling up at my street and getting my keys in my door and breathe breathe breathe.. 
The bus arrived and I was motioned on by a neighbour, sat myself down and sighed with relief at the thought of being home in a matter of minutes,  only to hear this from a few seats back; 
"There was a pensioner at that bus stop and she just stepped on before him.." 
UNBELIEVABLE RAGE. 
The 'pensioner' in question is 52 and happens to be the kindly neighbour who motioned ME to step onto the bus before HIM, after ME having initially stepped back to let HIM on. He had also just come direct from the gym where he works out twice a week, along with his coaching commitments for a football team of under 14's. And I NEARLY PASSED OUT GOING TO AND FROM THE SHOP. 
I left the comment hanging in the air because I almost sobbed at the sheer embarrassment of it all, but mainly with frustration. 

There will ALWAYS be people out the there who will judge you. She decided because I was younger than this man that I was both rude, and clearly healthier and more able bodied than him. Wrong on both counts. But nevertheless she felt it necessary to mumble insultingly regardless of having any facts at her disposal.

We are all guilty of judging others based on appearance. If you disagree with that comment then you are a liar. (See what I mean about judging others?) 
But what we need to change is the idea that just because you can't see someone is in pain doesn't mean it's not happening. Don't decide to slate someone or assume you know better when you can't see what we can feel. Had a man gotten onto the bus with a broken leg, he would've been accommodated and pitied because he was VISIBLY struggling. How do I defend myself against insults based on a condition you can't see? 
Think before you speak. 
Will what you are about to say enrich yours or anyone else's life? Or will it just end up the basis of a blog by a raging Crohnie? 
You be the judge. 
 

Monday, 26 August 2013

How Far Crohn Are You?


I’ve had a busy couple of weeks. I’ve turned 30, threw a super fun 80’s party, worked a ridiculous amount of overtime and got a shiny new ball of terror (kitten). There’s been good news and bad news, happiness and sadness. Fun is always a little peppered with glum. It’s not ideal but its life.

But what of those who live solely in the glum every day? I’ve noticed lately that I’ve become a little distant from the Crohn’s ‘community’ – Twitter, Facebook, etc. Not through choice of course, but I’ve noticed I’ve been losing Twitter followers and finding those of my circle with Crohn’s tend not to engage with me unless it’s related to our disease. Now you might think this is to be expected as the reason these people are following me in the first place is due to us having the illness in common; or perhaps because they’ve taken the time to read my blog. However I imagine it would be horrifically mind-numbing if I were to post every tweet and every update about my life with Crohn’s Disease. I personally can’t think of anything worse.

Social networking is an amazing outlet for people living with chronic illness, and specifically those affected with conditions making it almost impossible for them to leave their home. It can be a life line and a wonderful way to develop friendships and build a support network. For those reasons and more I would never bad mouth these methods of support. However I do feel it can often be used negatively which ends up doing more harm than good.

When I was first diagnosed with Crohn’s I scoffed at the very idea of speaking to anyone with the same illness as myself. The mere thought of it seemed abhorrent to me. I’m not entirely sure why this was; I think I was mainly in denial that anything was wrong with me in the first place. It’s a pretty strange feeling to explain to someone who has never experienced such a diagnosis. It was easier for me to attempt to focus purely on getting out of hospital and not really thinking much further beyond that.  It was too hard to deal with the idea I wasn’t ever getting better. At least that’s how I felt at the time. Reverse rose-tinted spectacles if you like.

Those who use social networking as a support network or community, (and I would consider myself amongst them) have often vastly different expectations. Many assume simply because someone else has the same condition that it instantly establishes a bond. In my opinion this is not the case. Don’t misconstrue what I mean by this; I am more than happy to help anyone in any way I can; offer advice, a listening ear, a virtual shoulder to cry on, or a giggle if at all possible. But Crohn’s and all its foibles and various difficulties are only a PART of my life. Crohn’s is not, and never will be, all I am.
If that means I am somehow in the wrong for not devoting more of my time to it then so be it – everyone is entitled to their opinion and mine’s is just as valid as the next diseased person. I like to think it’s possible to dip in and out of a community without being reprimanded or frowned upon for such an activity. I don’t think it’s particularly ‘healthy’ for people struggling with health issues to spend all day every day talking, tweeting and posting about their woes. I know this because I’ve done it. Many times! I’ve been lonely in hospital and bored in bed with a sick bowl, but on the few occasions I’ve told the world and its wife about it, I’ve just felt a wee bit daft and a big bit pitiful. So when I feel that way I tend to stay away from my phone, or write a blog. And often not go on to publish it until I’ve read it back post-drug-fuelled-pain-haze.

I want to know you are well so I can rejoice and be happy for you, I want to know you are struggling so I can try to help; I don’t want to know your every bowel movement. I have more than enough of my own to contend with...


 
 

Tuesday, 20 August 2013

Top Trumping

When in the midst of a pretty nasty flare-up recently, someone said, by way of offering comfort, that I should remember 'there is always someone worse off than yourself'. 
Maybe surprisingly I don't take that as a comfort and am always slightly baffled by the phrase itself and the insinuations that go along with it.
Personally, I know that when i'm ill, I try to remind myself that there are people out there suffering much more than me; not because it makes me feel better about myself, in a smug competitive suffering sort of way; but because it brings home how lucky I am to have Crohn's and not something much worse.
I can't for the life of me understand why anyone would relish the prospect of another human being enduring more pain and suffering than them just because it makes them feel better about what they are going through. It's childish in my eyes. It reminds me of the playground and how petty arguments were started because one pupil had a better pencil sharpener than another. 

There appears to be a strange class-system in the world of chronic illness. Some people love to tell you how much time they have spent in hospital or how many surgeries or procedures they've had to endure. Like a warped game of Top Trumps. Where really there are no winners. 
Of course this attitude is common, but thankfully I've encountered more of the other end of the spectrum, where people just want to help, advise, and care for others, not pummel them into oblivion with their woes until they submit and admit you are indeed the sickest person in the room. 'I see your flare-up and raise you a bowel obstruction!' Congrats! 

Ideally, if I could, I'd love to follow in Michael Jackson's footsteps and heal the world, make it a better place, etc. Although he seemed to go slightly awry with that plan..
But in reality all I can take are minuscule steps to try and help people understand that we are all in it together. I know that people look at me and often think 'thank god I don't have that..' but I know that some are also filled with a bizarre envy, seemingly under some false pretence that as Crohn's patients we get special treatment. There are no immediate 'benefits' to living with chronic illness, no red carpet at the hospital door and no gold credit card for the vending machines; we might be back and forward to doctors and consultants more often than most but that's because we need to ensure we manage our illnesses as effectively as we can. It's tiring. It's not to get time off work, skive or get sickly brownie points or pity, because on the whole that is the last thing we want. Most of us want to live as normal a life as possible, under abnormal circumstances.

If you are reading this and in disagreement with everything I've written then it's possible you need to take a look at your attitude towards your condition before it overwhelms everything else in your life. Try to look at the world as a place where we try to lend a hand to someone on need, not show them how your hand is on much worse condition than theirs. Trump them with kindness.