Lets Talk About Crohns Baby

A couple of weeks ago I received a lovely e-mail from a young woman who also has Crohn's and reads my blog. (I hope you are reading this!) She commented that reading my story has made it easier for her to cope, and how nice it is to hear someone being honest about the disease. Apart from making me a wee bit emotional, this got me thinking as to why Crohn's, and bowel diseases in general are considered such a taboo subject? Why, in 2011 are many of us still uncomfortable discussing our rear-ends and what goes on back there?
Its very sad and depressing, as the truth is, there are many more people than you think with this disease. Infact you could be sitting next to someone with Crohn's right now, whilst you read this! OMG locate a wire brush and some Dettol quicksmart! You might catch something! This type of ignorance reminds me of my primary school days when we heard on the school grapevine that Queen legend Freddie Mercury had Aids. The word quickly spread that you were not to use the same toilet seat as someone "like him" (i.e homosexual) as you would "catch Aids", and heaven forbid actually having a smooch with one! Even at that tender age I remember thinking WTF? Before WTF was even in my vocabulary.
Again, in search of knowledge I went to the font of Crohn's knowledge that is my Twitter feed and asked my fellow Crohnies what misconceptions they have come across being Crohns sufferers. The responses were amazing, some made me laugh at the sheer ignorance of people and the things they come out with regardless of the other persons feelings. Most just made me angry, the venom in some people regarding the disease can be staggering. One of the most common replies related to peoples reactions when discussing Crohn's. Surprisingly, similar stories came up, mainly relating to family members and friends either flat out denying their is a problem or completely underestimating the seriousness of the disease. Crohn's can kill. This is unfortunately a fact. Not in an agressive 'you have 6weeks to live' type way, but there are countless complications and health problems related to and caused or exacerbated by Crohn's that in extreme cases it can lead to the pearly gates. This is not something I like to dwell on, mainly because its bloody terrifying, but also because it's hard enough trying to live with Crohn's on a daily basis without the cloud of a soiree with G.Almighty hanging over you.
This may go some way to explaining my rage at people writing Crohn's off as "just a stomach ache", "just a bit of cramp" , "just a little tummy pain". Let me tell you now, I have never experienced pain like I do with a flare-up. Pain that is so relentless and unforgiving that you start to go a wee bit mental and would gladly place a gun in your mouth to take your mind (and head) off it. Easy to say as there is no way to describe pain to someone on the outside of your Crohn's bubble. Unless you use the fail-safe NHS describe your pain between 1-10 method, '10, always a 10!'
Other common complaints that arose from my question were related to toilet-times. Many have been told what people assume they can and cant eat and others that they must be at the toilet all the time. Or worse that you must have 'accidents' regularly. I am a 28 year old woman, I havent had an 'accident' since I was a bambino, and even then im sure I was probably mortified about it..
I do occasionaly have an urgency to go the loo and do occasionaly spend quite a bit of time in the bathroom. (We have a book shelf in there..) It really is rubbish enough having Crohn's without people making yukky assumptions about what goes on down there.
A lot of people also dont appreciate the other symptoms of the disease, the sickness, aching bones, tiredness and issues with food. Many jump to the conclusion of anorexia and eating disorders, not realising its not that we dont want to eat, sometimes its just really, really sore when we do.
What I would like is simple. If you are a nice person and you have semblance of interest in my disease (and or rear-end) then just ask! As many questions as you like. Dont assume you know all about it (when it comes to my backside you certainly dont) and dont expect me not to want to talk about it. I dont want you to pity me as there is nothing to pity, im still me, just a bit more diseased than I was! Im not embarrased about it as its happening to me, and if you are then thats fine, lets not go there.
That really is the BOTTOM line.

Crohnly Just

Crohn's Disease is a 'crohnic' condition which means at times it can be very difficult to live with.
Crohn's is not caused by stress, but emotional stress can influence the course of the disease and exacerbate the symptoms.
In my experience, stresses relating to family, friends and relationships are the main causes of a flare-up. As Crohn's is so unpredictable, this is not always the trigger, but it certainly helps to give me that extra wee kick in the guts im always so grateful for.
When im worried or upset, it's almost instantaneous the way my stomach echoes my mood. From intense pain to spending more than my fair share of me-time with the toilet, stress is usually the main catalyst. Of course the stresses of the disease itself are bad enough - painful and often embarrasing symptoms can cause worry and discomfort all of their own, leading to a vicious crohnsy-stressy-circle which is hard to break free from. God knows, God knows I want to break free ;)
So, in order to try and minimise stress in my day to day life, i've been researching the apparently most effective means of reducing stress. I now hold the keys to a stress free existence, and if you too would like a slice of this stress-free pie, read on.

1. Spend Time With Friends
Laughter is allegedly the 'best medicine' - although im sure after years of university, medical school and time spent on hospital wards, doctors may disagree. It is however, proven that spending time with people whom we love and enjoy being around makes us feel all warm and fuzzy inside (I think thats the medical term), therefore causing relaxation and minimising stress. During stressful situations, our immune system gets depleted and making time to relax with friends can boost this back to full capacity.
2. Avoid Unnecessary Conflict
I am not an argumentative person, in fact I hate arguing. It causes me nothing but grief. I know people who relish a good argument and purposely wind people up in order to get into one. This is not my idea of a good time. Being argumentative, in most cases, causes stress for both parties. It should really be a case of trying to look at the situation objectively to decide if its really worth the stress. Look for a solution rather than continually beat each other over the head with the same points.
3. Realise Your Own Limitations
Lots of stress is caused when we try to take on too much. Work, responsibilities, and making time for family and friends can get on top of everyone. We often end up doing more than we really should, especially if you are a martyr like me who will spend an entire day off washing, cleaning, sweeping, mopping and scrubbing then complain she's not being taken away to the ball at night in a giant pumpkin :(
I've had to learn to just say no - difficult as I hate letting people down, upsetting or offending anyone but a little bit of assertiveness goes a long way.
4. Time Management
Trying to prioritise your day helps reduce stress. Make sure you do the most important jobs first (usually the least pleasant ones), the unimportant jobs will always wait. Try not to put off the un-pleasant tasks - even thinking about these, and your lack of backbone in putting them off will cause stress to creep in.
5. Look At Things Differently
When things are bothering you the most stressful thing you can do is dwell on the problem. Try to see things in a different light where possible. If the problem is light, try using energy savings bulbs or candles. Talking things over with someone impartial helps to get another perspective and can stop things getting blown out of all proportion. People not directly involved in a stressful situation can see things as they are without the emotion clouding their view. Or the smoke from those candles.

Other good relaxation techniques include engaging in physical activity (calm it) - any type of exercise works off the biochemical changes that can occur when you are stressed. Breathing exercises and massage are also good to help your body return to its normal healthy state.
So there you have it, follow these simple rules and stress will be a thing of the past. As long as you dont dwell on the past then you've just added another thing to dwell on. Sorry about that.
In my excitement to help you all lead stress free lives i've neglected to have any dinner, so clearly following my own advice and prioritising my time and putting the most important jobs first there.
You are welcome. And relaaax.
*faints*

A Mind Of My Crohn

The world is filled with vanity, where beauty and perfection are portrayed to be everything.
Very hard therefore to try and keep up with the image of a woman the papers, magazines, films and adverts expect us to be. Harder still when you have a disease like Crohn's. One where your whole body (outward and in) can change in a matter of hours. When I'm in the midst of a flare-up the disease affects my hair (making it dry, thin and fall out at times), skin (dry and sore), makes me bloat to beach ball proportions, gives me hot flushes, makes my face chalk White and makes my bones and body ache all over. Pretty difficult to feel confident and attractive when all that's going down.
Plus the added bonus of a big Crohn's related scar. I've talked about my scar before, and I am a lot more comfortable now and have gotten used to the fact its going nowhere. I don't wince (as much anyway) when I catch sight of myself in the mirror, and can touch it without creeping myself out. Still find myself covering up though incase anyone outside my comfort zone may see.. I suppose I'm still petrified some mean person will catch a glimpse and run for the hills or vomit on my shoes. Highly unlikely but an irrational fear that's as yet not shifted.
Women have beauty shoved down their pretty little throats everywhere they turn these days. Sex and supposed 'perfection' sell literally everything - a gorgeous model in a slinky dress will sell anything from a new Audi to Anusol.  And we lap it up as they are far more beautiful than us and maybe if we own that product we too can be just as beautiful? No. And it's inconceivable that we put so much pressure on ourselves to look, dress, and act a certain way in order to feel accepted, usually by people we don't even like. Madness. Of course I'm no saint, I am guilty of the same things, I covet beautiful shoes as much as the next woman (or man, I'm no sexist) thinking what kind of massive difference they will make to my life, when all the while knowing that in reality I'll just own another pair of handsome shoes to gather dust in my wardrobe.
Having this disease I know I will never be conventionally 'perfect', if there even is such a thing. But I am unique. I have a funky scar down my stomach, leftover as a memento from where an amazing woman (again I'm sure with the help of some excellent male nurses..) removed a really, really ugly bit of me. That can only be a beautiful thing :)

Attack of the Crohns

As Crohn's is essentially an inflammatory bowel disease, most people assume the main issue is difficulty in toilet related activities, but few realise how much it can screw with your whole body.
Unless you are a sufferer yourself, it's hard to understand just quite how debilitating Crohn's can be.
Take my day so far. I have a day off, just requested at random, cheeky day off through the week to have a lie in and maybe get down to a bit of housework. That was the plan, and it's gone ok so far, I tried to have a lie in, and managed til 7.30am, as was continually wakened by a rumbling stomach, queasiness and a what can only be described as a beast of a headache.
So I got up, forced a bit of tea and toast then took a look around the kitchen- bomb-site was a pretty accurate description. So I decided to get down to a spot of serious Autumn Cleaning. Swept and mopped, scrubbed, washed, laundered and polished for a good few hours until the place was spotless (well sort of) Still not quite my mums standards but nevertheless. Then, feeling dirty (not in a good way) I retired to the shower to rid myself of my hard graft.
Stepped in the shower to find I couldn't lift my arms above my head due to the excruciating pain in my gut every-time I tried. Within seconds my stomach was swollen up to about the size of a 6month pregnant woman's and after stepping delicately out of the shower it took me approximately half an hour to summon up the courage to stand up straight.
Here we go again. So now I'm back in bed feeling like a waste of space. Every time this happens it feels like my body is saying, 'I appreciate what your trying to do here but it's just not going to happen is it? Now SIT' - (quite forceful my colon in my mind).
It's a pain in the rear (pun intended) when this happens. Not just as it's quite literally very, VERY painful and uncomfortable but also gives that feeling of helplessness, can't I do a few simple chores without paying for it later? Isn't it enough I've spent a day off cleaning without knocking me for six after so I can't actually ENJOY what's left of it? (I don't know who I'm even directing these questions to anymore).
My partner recently said I don't talk about it much, just say I'm sore but don't elaborate. I admitted this is because, I suppose, apart from boring him with endless symptoms, I bore myself at times. I mainly want to try and just forget it exists, and talking about it forces my mind to focus on it. It's at times like this when it my body makes it impossible to forget. Without sounding melodramatic, it does feel at times as though my body is punishing me. And for what? Cleaning? STONE HER!
Working? HAVE HER HANGED!
Having a social life? ELECTRIC CHAIR!
All of which at times feel like an appealing alternative when I'm in pain.
I think I'm going to try a bit of reverse psychology on my ass (again pun indented) and start doing something worth being punished for like robbing a bank or stealing a Kinder Egg from a small child, and see if this pleases my bowels instead. If I end up in jail, please send loo roll, Thank-you x

Crohn Marrow

I've always had a tricky relationship with food. Most of my early life was spent eating a few bites of a meal then instantly feeling sick. Sounds silly now, but I actually thought it was always me eating too much and I felt sick because I'd stuffed myself. Drivel. For a start I didn't eat big portions. I almost never had a breakfast and barely snacked. I never had any form of eating disorder, although a few friends have since admitted they thought I might have. I became accepting that this was just the way of things- I would feel ill when I ate and that's the end of it. It's easy to look back now and see all the signs of Crohn's but as I'd never known anything different I didn't think anything of it. I remember being bugged by someone who used to tell me I ate "like a bird" - I always wanted to say, well if you ate two bites of a meal and felt full, bloated and uncomfortable you'd lay off the jumbo portions too.
But now I know what's been causing the problems all along, I'm trying, VERY slowly but surely to establish what I can and can't eat. Easier said than done. There are so many different symptoms to Crohn's Disease it makes it almost impossible to pin down a definitive diet, as every food affects sufferers in different ways.
For example, I recently asked some friends on Twitter who suffer with Crohns what foods they simply cannot tolerate. About 20people replied but I  was quite surprised that only 3 or 4 similar answers came up- the others were all individual to each person.
The main areas they pinpointed to avoid though were nuts, citrus fruits, green vegetables and milk.
For me, a year after my official diagnosis and I am still slowly finding out what I can and can't have. Seems red meat, nuts and milk are the main killers for me. How predictable. Wine also annihilates my insides so I avoid it like the plague now (most of the time..)
The general cons census is that it seems in the vegetable world, greens are pretty much out of the question. Spinach, lettuce, peas and cabbage are major no nos. This is due to their fibrous content. Too much fibre can irritate the gastrointestinal lining and cause a build up of gas, therefore leading to muchos discomfort. This isn't too much of a downer for me as I always rebelled against the "eat your greens" patter of my childhood, technically I was ahead of my time in leaving those badboys on the plate.
The more sensible alternatives are apparently peppers, mushrooms, sweet potato and onions. All roasted or boiled to  within an inch of their veggie wee lives. :( Pureed soups are good too- or as I like to call it 'potential baby food'.
Not being very positive here am I? Probably has a lot to do with writing this post before I've had my dinner..
In all seriousness Crohns is not the end of the munching world- in most cases you can still eat the things you love, just in moderation. And to be honest most of the things I did adore eating, BC (before crohns) have now gone down in my estimation. Like a fleeting romance they mean so much to you for 5minutes, you realise they are no good for you and just can't look at them in the same way again. (I'm talking about you, Mr Fjhitas).

Crohnly Fools & Loo Rolls

How much information is too much information when it comes to talking to people about Crohn's Disease?
This is a poser that regularly plagues me.
I have a comfort (now anyway) with my partner and close family and friends, where I feel I can tell them pretty much anything relating to how I'm feeling, and let all my worries out. However when it comes to discussing ACTUAL SYMPTOMS it's a case of still feeling a bit like I have to vet myself before off loading. All my own doing by the way, this is by no means because of their attitudes.
Where my partner is concerned, we live together, so nothing can be hidden in terms of how I am psychically or such things as how long I spend (or what I'm doing) in the toilet. He doesn't flinch when I talk (sometimes in detail) about the state of my under-carriage or how badly I've sabotaged our bathroom. The main issue for me at first was the worry in my mind that how could anyone continue to find me attractive when I'm doubled up in pain or when I've created destruction and devastation of the toilet? Clearly as I'm joking about this, its no longer an issue for me. He constantly reassures me how he feels and that, scars, sickness and however close and personal I get to the porcelain, wont change that. This is a massive relief to be able to talk so openly about it all.
I feel I can talk in the same way (well to a point) with my mum and specifically two close friends (one suffers from a similar tum related issue and the other is a nurse so neither of them flinch at the image of me letting rip - sometimes literally).
The only problem that arises here is that I still sometimes feel I have to remind them that I am coping fine and will feel better soon, as because they care, they worry and I hate causing that.
Now when meeting acquaintances the dilemma rears it's head - how much do they REALLY want to know? In most cases, as little as possible it seems, in my experience at least.
Here are 2 possible 'stop and chat' style  scenarios that may occur (and have for me) as a 'Crohnie' ;

Scenario A -
"Hey! How are you?"
"Hi! I'm good thanks, how are you?"
"Great. I'm..." (*insert whatever they wanted to talk about in the first place here*)

Scenario B -
"Hey! How are you?"
"Hi! Well I'm utterly shattered, have barely left the toilet for over a week, I'm struggling to stop from throwing up as we speak, almost passed out earlier, have entirely no energy, haven't eaten a proper meal in god knows how long, my skin and hair are in a terrible state and I'm in unbearable pain! How's things with you?"
"Oh that's awful.. Hope you get that sorted soon then. I'm..." (*as before insert conversation here but with added discomfort*)

In Scenario A, there is NO info given regarding my Crohn's, therefore leaving the road clear for the other person to wax lyrical about whatever they wanted to wax lyrical about in the first place.
As you can see Scenario B was similar in response but with an uncomfortable Crohns-style awkwardness left handing in the air. So as my little example shows, it's usually better to make like a Pez and only dispense tiny chunks of information at a time when requested. The people worth bothering about will keep sticking in coins for you to dispense more. (Absolutely no idea where I'm going with that..).
I like to keep my info to a minimum - people who need, or truly want, to know will be honoured with my toilet and tummy tales, and those who don't, wont.
Peace, love and loo rolls x

Crohnly Time Will Tell

I haven't blogged for a wee while. Partly because our laptop is all but knackered, but partly because I assume when I'm feeling normal' I don't really think there is much to talk about.
Then the revelation came to me that it's GOOD to feel GOOD. I am actually allowed to bask in the happy feeling of having gone a few days without any symptoms.
It takes a lot to allow myself to enjoy feeling well. This might sound ridiculous, but it's very hard to just relax and enjoy even a few hours without pain or sickness as I'm constantly waiting for it to hit me, or worse, thinking theres something worse on the Crohn's horizon and this is just my body lulling me into a false sense of security..
I've also found myself reverting back to my old "I'm fine" patter, even with the closest of friends. I suppose this is because I don't want to worry anyone, and because I really do want to be 'fine'. Maybe if I say it enough I will be? But then I know this isn't a magical Disney world where if I wish upon a colon my dreams will come true. This is a lifelong disease, which if I'm honest I still don't think I've really come to terms with.
It's much easier now to tell people and explain it all to strangers even, but it's almost like I'm talking about someone else. Then it occasionally hits that it's actually happening to me. Daft eh?
Even with a constant reminder in the form of a scar, and seemingly endless rumbles from my defunct stomach, I still sometimes think in the back of my mind it's something that will pass. I don't really know if I'll ever get over this feeling, suppose I will eventually when I've served a good few years with it, but for now I'm still (clearly) a bit baffled by it all.
But let's focus on that feeling good I was talking about earlier. I have had a very stressful couple of weeks and yet have had little to no, major symptoms. Very unusual. Don't get me wrong though, I've still felt decidedly rotten a lot of the time, but no real pain, just niggles, as if my tum is giving it ; 'I'll let you off for now, but just so you don't forget about me completely, here's a wee jab to the guts! And another!' - Cheers stomach, cheers.
I need to learn to shake off the feeling of waiting for something to go wrong and enjoy the Crohn's-free moments I get. 'This is My Moment' as Martine McCutcheon once said, and while I can eat and visit the bathroom like a regular person, I shall try and make the most of it. That is after being tarred and feathered for just quoting McCutcheon of course.