Tuesday, 27 September 2011

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

Sunday, 25 September 2011

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.

Wednesday, 7 September 2011

Crohnly A Matter Of Time

Around this time last year I had my long-awaited colonoscopy and finally got my diagnosis confirmed. Since then , my body has changed dramatically.(In my eyes at least). My skin is dry and chapped, my hair is lank and thin, my face is podgy with a second chin not far off, my weight is constantly fluctuating, and now I have a beast of a scar down my front.
All these physical changes aside, the biggest change has been my outlook on life. I feel now that I know what i'm dealing with, and have accepted this is the way my life will be, I am much more positive about the future. There is no longer a big black cloud of doubt hanging over me, waiting to hear what's next round the corner.
I've noticed that now I worry a lot less about the things that really were never worth worrying about in the first place. Little issues ("OMG I forgot to take the bin out!") pale into insignificance compared to what I, and my family and friends, have had to contend with in the last year.
Early 2010 I was in constant pain, so intense most of the time that I genuinely thought I was a goner. I was a complete wreck both physically and emotionally. So down, as nothing the doctors seemed to say made an iota of a difference. They were the ones who were supposed to 'fix' me - and because they couldn't I began to accept my life was going to have to consist of almost unbearable pain most of the day, while struggling to maintain a full time job. That was not easy - when I was in work (I had a lot of sick leave) I was either running back and forth from the toilet or struggling to stop myself passing out with the pain or throwing up at my desk.
I used to be quite an irritable person, easily annoyed and impatient at times. When the surgeon removed a part of me all that went too! Maybe all my negativity was stored in that wee diseased bit of bowel?!
Either way I feel lot more laid back these-days. Perhaps partly due to the immense feeling of gratitude I have for the fabulous doctors and nurses who looked after me and quite literally, nursed me back to health.
Being ill has also shown me how amazing my family and friends truly are. They have never once faltered in showing me endless support, from practical help like lifts to and from hospitals, open ears to listen to my woes, or just a comfy shoulder to cry on. People really don't appreciate what they have or who they can rely on until the proverbial hits the fan.
The problem now is, as i've discovered this new found bliss, i'm struggling to see how everyone else around me is carrying on as normal! Why haven't they picked up on my chilled out demeanor and adapted it too? Without sounding too much like a mad cult leader, I will lure them to the Dark (Bright?) Side eventually..
I think my new laid back, practically horizontal attitude may wear thin soon enough, probably more for me than anyone else as i'm still a paranoid-worrier-control-freak at heart. Nevertheless I am enjoying trying not to sweat the small stuff. With the hot flushes I have i'd be drenched.

Sunday, 4 September 2011

The One and Crohnly

When I was in the midst of arriving at a diagnosis, the doctors often asked if there was any history of Crohn's Disease of IBD in my family.
I would confidently say, No, my family are relatively healthy, my parents have never had any major health issues to speak of, and certainly no problems relating to 'bums and tums', to put it mildly.
However my Grandmother did. Peggy had Celiac Disease for a lot of her life and ate a gluten-free diet.
This was never particularly unusual for me as this had been the norm in her kitchen, and for as long as I could remember she had this complaint. And complain she did. She baked her own gluten-free bread, which she detested with a passion. She also liked to play the martyr during special occasions and family meals, where she would deny herself so much as a bread roll for hours, at pains to explain in detail what the outcome would be were she to consume so much as a bite, then give in and eat it anyway, spending the rest of the evening predicting how many hours of the next day she would spend on the throne. All during dinner.
I miss my Gran terribly. I adored her.
We lived in a small block of flats for the majority of my youth and she lived in the flat directly above. She was situated in an ideal spot to escape to when my parents just didn't understand me! or they had the cheek to give me a telling off! Each time she would take my side without question - regardless of how ridiculous or immature my argument was. She also gave amazing hugs.
My Grandad passed away about 5 years before I was even a twinkle in my mothers eye. My mum tells me that Peggy never really recovered from her husbands death, and when I made an appearance, I "filled a hole in her heart". She doted on me and my brothers and we spent a lot of time together as she was practically a live-in (upstairs) babysitter. Our favorite activity was doing the entire 'Birdy Song' routine from start to finish. We got that bad-boy down to a fine art.
I like to think there is a link between Peggy and I - it's just a shame the more likely one is our tummy troubles. My Gran passed away when I was around 19. Her health had been deteriorating steadily for months and she was becoming more and more confused and forgetful. It was heartbreaking to watch this once so vibrant and fiercely intelligent and witty woman wither away. I was there when she passed and was utterly devastated.
As she died long before I became ill myself, we never got the chance to talk about it. I now wish i'd paid more attention when she spoke of her health woes. There are a million questions I wish I could ask about what she went through.
Scientists and researchers are constantly looking for a deeper understanding of the connections between Celiac and Crohn's. They have begun to focus on genetic variants that trigger inflammation in the gut. They say a better understanding of the genetic connections will likely pave the way for new treatments for symptoms common to both conditions, such as the aforementioned inflammation.
Researchers in Italy have recently determined that those with Crohn's also have a high prevalence of Celiac Disease, and many patients recently diagnosed with Crohn's have been advised to begin a gluten-free diet at the time of diagnosis. Personally, this is the only diet i've yet to try since my own diagnosis. Probably due to my memories of my Gran producing a rock solid loaf of 'bread' from the oven that tasted like cardboard.
I like to think that wherever she is, Peggy is egging me on to have that extra bread roll. If only so I can spend the rest of the night moaning about it. x