Saturday, 15 December 2012

It'll be Crohnly This Christmas

Itll be Crohnly this Christmas

Depending on your religious persuasion, Christmas can mean many things to many people. Religion aside, for most people, regardless of your faith, (or lack of), it's traditionally a time of over-indulgence. A phrase that in itself can strike gut-wrenching fear into the heart of any Crohnie.
Don't get me wrong, I love Christmas. I love getting to spend time with my loved ones and fighting with family i haven't seen for 12months. I adore exchanging gifts that we've bought one another because we care and because the adverts say we have to. I love decorating the house and getting into debt along the way. Joyous.
No, I joke (sort of). I do enjoy Christmas. I always have.
However now my feelings towards this time of year are a strange mixture of excitement and nerves. As ridiculous as it may sound I also feel a vague sense of loss. At how much I used to enjoy the aspect of over-eating and drinking.
With Crohn's your body has an annoying way of telling you in no uncertain terms when you have HAD ENOUGH PUT THE CHIPOLATA DOWN. A phrase heard painfully often in my life.
Some would think this is a useful tool for ones body to have, a sort of early warning system that gently reminds us to cease eating for fear of feeling like a sumo wrester later. Only it's not a 'gentle' reminder. It's agonising cramps in the stomach, sickness, sweats and shivers, rushing to the toilet and feeling faint. Celebrate good times c'mon!
The first Christmas after my diagnosis I was on a liquid diet. And I don't mean I was being all Scottish about it and knocking back the sherry from 8a.m.
Unless you have been through this you have no idea how difficult it is. A diet of only milkshakes that aren't even milk in the most vile flavours imaginable. My personal favourite was Rotting Corpse, (although they lied and wrote 'Forest Fruits' on the label).
Surrounded by a massive table of food and drink I had to suck on Rotting Corpse from a wee straw. This made not only me miserable, but my whole family uncomfortable and sorry for me. I think at one point there was even an offer of introducing some turkey to the liquidiser. I politely declined.
Thankfully this Christmas will be much better. I'll be able to eat (in moderation) and drink (in even more moderation). I will attempt to pace myself, and maybe only have one selection box for breakfast instead of two. Only 3 baileys before dinner instead of 12 and just have a wee sniff of the trifle.
I'm dreaming of a pain-free and FUN Christmas for me and YOU.

Merry Christmas x x

Monday, 3 December 2012

Diseasey Street

This past week I've been a physical and emotional write off. I've had (and still have) a horrendous flu-chest-throat-head-bug-thingy (to give it it's proper medical name) that I'm struggling to shift.
This may sound like a mere inconvenience when you consider I have an incurable disease, but that's exactly my problem; I already have Crohn's, why do I have to put up with this nonsense too?!
Obviously as Crohnies, we are far from exempt from other health issues, in fact the opposite, we grab any bacteria and germs flying around and clutch them to our bosoms like selfish lovers who won't let go. It's our crappy (pun intended) immune systems that cause our bodies to go temporarily insane and collect as many other problems as we can like some kind of macabre hobby.
Plus, having the disease also means it can take a ridiculously long time to shake these things off. Talk about mixed signals, body.
So this week I've lost my voice, had a perma-headache, had streaming eyes, running nose, blocked nose, felt faint, legs like lead, zero energy, zero appetite, sweats and shivers, and a cough to wake the dead, amongst others. Lovely.
Now I know this is all natural during the first flush of Winter. My problem is that I can't just get over this type of thing like a 'normal' person. I have to deal with this AND Crohn's. if anything that makes it even more annoying in my eyes; why can't I deal with this when I'm coping with Crohn's everyday? I get frustrated at my own body for being so bloody useless.
Now my partner takes a different view on this. He thinks it's kind of romantic to him in a way that I'm ONLY dealing with this and not Crohn's for a change. He thinks it's cool that he sees me with a cold like 'normal' people (there's that word again) and not doubled up with Crohn's pain. This is a nice way to look at it I reckon, and it has made me think about how much of a drama queen I possibly could become if left to my own miserable devices.
But right now, as I type this, my fingers dripping with sweat, barely able to lift my useless head, I can't help but resign myself to the knowledge that Crohn's has taken this round.

Sunday, 11 November 2012

#NHBPM 20th November

'Write about Regimes, Medicines..'

Throughout the first few months of my life with Crohn's Disease, the doctors and nurses caring for me ran me through a variety if different treatments and drugs to try and get my symptoms under control. Looking back now, I went through a pretty huge amount of trauma at an alarming speed.
Over the course of around 12months, I'd been on a liquid-only diet, I'd had a course of steroids, was on Azathioprine, and a veritable banquet of other drugs; my symptoms never improved. Eventually the only option left was surgery, my Crohn's was so advanced this was done pretty swiftly and thankfully, it's worked. It has taken away the worst affected area and since then I've been feeling so much better.
After my surgery I joined a drug trial my hospital were running. This trial is specifically designed for Crohn's patients having had the same operation as me, to see if their symptoms are eased by the drug post-op, or, if no medication the best way to go. To make sure the trial results are accurate and successful, I won't know if I've been on the drug it a placebo until the trial comes to and end (it's 3years long).
The drug I may or may not be taking is called Mercaptopurine. When I first started the trial I was on quite a high dosage. I was vomiting, constantly nauseous and faint. My dose was reduced until my symptoms were manageable then eventually these symptoms stopped altogether. I've been relatively well since then.
Some of the more pleasant side effects of this drug are, weight loss, hair loss, stunted periods, skin rashes, weakness and nausea. I've suffered, and suffer from the majority of these, but as these can also be attributed to Crohn's, it's impossible to establish what's causing them.
The trial will be finished (for me anyway) in just over a year and I'm a little anxious. What happens if it's the drug keeping me from getting sick? Do u stay on it? What if I've been taking nothing all this time? Do I continue in the same vein and cross my fingers or try something new?
Change can be good as far as medication goes, but where my troubled colon is concerned, lets stick to what we don't know for now anyway..

This post was written as part if WEGO Health #NHBPM - 30 posts in 30 days

#NHBPM 15th November

'Nominate Someone for a Health Activist Award'

I took a slightly different approach to this blog post due to some recent, very sad events.
I've nominated lots of amazing bloggers for HA awards and I'm very excited to see if any of the fab folks I've nominated make it to the winners podium. I think there are so many worthy winners and the calibre if writing this year is so high. All these people deserve recognition and I could have written this post about any one of them. But instead I chose to write about someone I can't nominate.
This is someone I became dear friends with, (as much as you can be friends with someone online), but never met.
Mimi, or @Pythonette1 as she was known on Twitter, where we 'met', passed away earlier this month.
She was one of the first people I'd found on Twitter with Crohn's Disease like me, and was a complete breath of fresh air. She was warm and funny and had an amazingly positive outlook on life. This couldn't help but rub off on anyone who came across her. She helped me realise I could live a happy and fulfilled life despite my recently diagnosed condition.
She was friends with so many people on Twitter and I know they l share the same sense of loss I do. The loss of a friend and the sadness of not having been able to say how my h she meant to us when she was still around.
When I heard of get passing I cried. Real tears. I've never cried for someone I've never met. Apart from when I'm watching 'Beaches' obviously, but that's a given.
Talking of beaches, Mimi lived in Australia. We often joked about swapping climates for a few days. I live in Scotland so we were literally on different sides of the world. She kindly offered to pop some glorious sun in the post and I'd fire back some our cloudy skies to give her a rest from the heat.
Mimi was a constant support to me, and hundreds of other Crohnies. Whatever came her way she dealt with it head on - and never forgot to ask how we were at the same time.
She sent her smiles in 140 chars here's to cheer us on, on an almost daily basis. That's a real skill, and one of the many reasons she will be so sorely missed. RIP Mimi xx

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days


#NHBPM 18th November

'Advice for Someone Caring for a Crohn's Patient'

I often try to detach myself from my condition and consider for a while what it must be like to live with, or just be around someone with an incurable illness.
This is harder than it sounds. On my first few attempts at this I'd think 'That must be hard when I do that' or 'Thats unfair on then when I do that' - but I'd always come back to 'BUT IT'S WORSE FOR ME'. No it's not. Not necessarily.
On the whole my loved ones don't ever complain or voice any gripes they may have about 'caring' for me. I can only assume this is out of consideration for me. They don't want to make me feel bad, or cause me any guilt. After all, I'm dealing with enough, and none of it is my fault..
But let's take a moment to consider how my illness affects the people around me. In ways extreme to mild, Crohn's is always there. Therefore it's always the big fat diseased gooseberry when my partner and I go out for dinner. It's waddling around badly and embarrassingly when my friends and I go out dancing. It's trailing behind like an OAP when I'm out shopping with my Mum. This in itself means my condition has to be considered by me AND my loved ones in every little thing we do.
As far as caring for a Crohn's patient goes, it requires a lot of patience. Not because I am difficult or I complain, but because when Crohn's comes to the party it's often not invited, and causes so much awkwardness we often have to leave early. Thankfully my close friends and family (and most of all my partner) have this patience in abundance.
Caring for someone with Crohn's is not really about the physical acts of mopping up sick, cleaning a toilet it dabbing a fevered brow, (although these may be required from time to time, sorry it's in the small print), it's more about learning to adapt, and help the patient adapt to their new situation. It's also important to be brutally honest from time to time - feeling constantly rotten can get you down in a big way, so it's vital you have people around you who have a pair big enough to tell you to snap out of it.
It's equally important, as the patient, to appreciate that the people you love would never try to hurt you, so when they tell you to calm down it cheer up, maybe, just maybe they know what they are talking about.
It's all about finding a balance between learning to cope on your own and allowing others to help. Crohn's can be a damn nuisance, but don't let it get in the way of your relationships, if you do, Crohn's wins again. Not on my watch soldier.

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

#NHBPM - 11th November

'Your fave thing not health related, that likely improves your life'

I've thought long and hard about this one, and no, I'm not slipping in innuendos to warm you up for an x-rated favourite thing. This posts is 100% suitable for under 18's.
For me, that old cliche "Laughter is the best medicine" is so true. Of course Morphine is good too. If you can combine the two EVEN BETTER.
I love to laugh. I know that in itself sounds obvious; who doesn't? But I love it. When I know I am going to be around people who make me chuckle I get happy little butterflies in my stomach. I get giddy spending time with funny people. I forget for a whole I'm ill.
When you spend a lot of time in hospital, you treasure those very short few hours when you get to see the people you love. My family are FUNNY. My friends make me LOL big time, and my other half is HILARIOUS. These are all excellent qualities to be around when you feel like everything is bleak.
When all you feel us pain and can't see a glimmer of light, let me tell you, telling me a story about someone falling over will take me from nought to sixty in the happiness stakes in less that 30seconds.
I love Twitter too. I follow lots of funny funny people. So even if I can't be around humour in a physical sense, I can laugh at the people in my phone any minute of the day.
I love to watch comedy programmes, see funny films, go to comedy gigs and I LOVE to see people fall over. It's approaching Winter here and my chuckle muscles are getting giggly just thinking about the outcome of folk negotiating icy streets wearing badly gripping shoes. BRING IT ON.
With a chronic illness, you can choose to let it make you miserable, or you can choose to be better than your condition. I laugh at myself a LOT. Let's face it, Crohn's is ridiculous and it should be treated as such. You have to eat yet your body doesn't want to let you. Nature is playing the biggest joke on you it can. Don't be a spoilsport, just go with it. LOL.

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days.

Wednesday, 7 November 2012

#NHBPM 9th November

'Advice for new Patients'
(Bonus Prompt)

When I read this prompt I thought, "That's a nice easy one". I picked up the laptop to type and my fingers didn't move. Why?
I figured this should be easy advice to give, it's not so long ago I myself was a new Crohn's patient. I should be an expert on bestowing my freshly garnered knowledge!
Well the truth seems to be I'm not. My diagnosis took a long time. Various potential causes for the pain I was suffering were touted before I finally knew what I was dealing with.
Apparently this is more common than Crohnie's would like. It would be wonderful if Crohn's was easy to diagnose, but it's not. It can be incredibly difficult and frustrating for doctors and patients alike.
When the diagnosis has been confirmed, it opens up a mixture if confusion, sadness, anxiety, and for me; relief. Relief to know what I was dealing with. A relief to know what I'd tried to prove all along, that there really was something wrong with me.
Of course that wasn't exactly something I'd been happy to confirm - I by no means wanted to feel like that, and I certainly didn't relish hearing the condition I had (have) was incurable.
I suppose the best advice I could pass on to new patients just getting to grips with Crohn's is to learn everything you can about your condition. Knowledge is one if the best weapons against the disease. Think of it as a pre-emotive strike; you can't stop what's happening to your body, but you can arm yourself with as much information as possible so you know what lies ahead. For me, that took a while to click. I really didn't want to know the in's (and more importantly) out's if my colon and beyond. I felt horrible and uncomfortable, and the last thing I wanted was to talk to others whining on about what terrors lay ahead. I can't say I was wrong to feel that way, because that was my initial reaction, and I can't apologise for my feelings. However, knowing what I know now, I realise that sharing my story and hearing from other sufferers, CAN be a positive thing.
Growing my knowledge on Crohn's has been a great help. It's awesome to get the insight from patients going through it and not just doctors.
Another important nugget of advice would be to be patient. A patient Patient if you will. Don't pressure yourself into recovery mode, or try to get back to the way you were Pre-disease. Stress and Crohn's make for unfriendly bedfellows so this is the last thing you want. Believe me.
Don't feel bad if you have difficulty in adjusting to your new body either, it will take time, so please don't beat yourself up if you feel you should've made more progress. What you are going though IS a big deal.
Finally, don't be afraid to let others in. You may feel alone in this bit you are not. Your lived ones may be as confused and frightened as you are, so don't shut them out. Let them help you navigate your way through this. Again, this is easier said than done, and the urge might be to push people away. But no one said this was going to be easy! Being one myself, I know that us Crohnies's are a tough bunch. We have to be to put it the hours fighting this disease on a daily basis. You are too. And you don't have to fight alone. X

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

Tuesday, 6 November 2012

#NHBPM 7th November

'Redesign a Doctor's waiting room'

Now I'm no Lawrence Llewelyn- Bowen, (a flamboyant interior designer, Non-Brits), mores the pity. But I do know a thing or two about spending time in doctors surgeries. As I'm sure most of you are aware, waiting rooms are places in which you are often forced to do a lot of just that; waiting.
This, when you are feeling nervous and anxious, or feeling like death (or all of the above), can be a rather frustrating prospect. I know doctors and nurses are very busy people so its understandable at times we may be waiting later than our initial appointment time. Not every patient can be dealt with in a window of only a few minutes of course. So what could be done to make these places more comfortable whilst we wait?
For one, comfier seats. Ok so I don't expect to feel like I'm at home, or have my rear housed on some velvet cushion, but I would like to sit on a chair that doesn't make me feel like a geriatric. Or on a seat so solid I can feel everyone of my backside bones in action. Some of us have issues down there y'know?
Secondly, all these depressing health posters. Get rid. We are here to see the doctor already, do we really need to be worrying about a million other things we might have, or catch while we are here? It feels like we are sitting in a mobile version of WebMD - "Do you have Cancer?", "Have you checked your prostrate?" - Look give it a rest. I checked my prostrate last week and it's gorgeous as ever ok. Leave it.
I propose, pictures on one wall of semi-naked men, semi-naked ladies on the other, and for good measure, cute wee kittens and puppies on the ceiling. Covering all bases there I'm sure you'll agree. Taking everyones minds off their troubles in the process and, as an added bonus, giving the doctor a head start (if you'll pardon the pun) on the severity of any potential erectile-dysfunction cases he may be dealing with.
Finally, I really think it would help, I can't really explain why, to have those doors like off of Star Trek as we walk into the doctors office. Or better still, a smoke machine like off of Stars In Their Eyes ; "Tonight Matthew I'm going to be.. CURED"

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

#NHBPM 10th November

'Should people post about their/ their loved ones health on social networking sites?'

Myself, I consider the above question to be two entirely separate issues. As my health is 'mine' and 'my' life - I feel it's my right to discuss my condition openly with the world at large. I feel it helps, me and others, to understand my illness. I try to shy away from talking about the involvement of my friends and family. I express how much they mean to me and how they support me throughout my illness, but I never talk about any issues they may have, outside of my Crohn's Disease.
I think there is a major difference between being open about my life and talking about people who perhaps would be uncomfortable about being thrust into the blogging spotlight. It's not my place to discuss anything about my family other than how they affect my life.
This can often prove quite difficult when writing my blogs as they play such a big part in my life. I'd never want to divulge anything that made my loved ones uncomfortable, and if that issue ever arose, it would be deletion central!
I understand why some may openly talk about their loved ones health issues. It may help them cope, and understand. It may help to tell others, perhaps for support outside of the family, or to share information. As I do, for my own condition.
However, the difference between doing all this for yourself and doing it for someone else is that it's THEIR life. Their privacy. The first concern should always be the person you love and what they want. I know if the colon was in the other body, my family wouldn't want me to quite so open about them as I am about myself. And I understand that.
People's privacy is just that, private. Why would I encroach on that?

This post is written as part of WEGO Health #NHBPM - 30 posts in 30 days

Monday, 5 November 2012

#NHBPM 26th November

'Interview your Health'

Today the author of this fine blog, Miss Kathleen Nicholls, will be interviewing her Health.
Let the fireworks commence!

KN- "Hi Health, are you well?"
H- "Hi Kath! Wel.."
KN- "No point in answering that one really as clearly, CLEARLY, you are not. Neither of us are, are we?"
H- "We'll I think thats a little harsh.."
KN- "The fact that you are an absolute bastard isn't up for debate, the question is WHY?"
H- "If I could first defend myself.."
KN- "No. You can't. Because I can't defend myself against you now can I?"
H- "Ah, we'll I see where you are coming from.."
KN- *yawns* "Skip to the part where you explain your complete bastardness please"
H- "I feel this is going nowhere. I sense so much hostility from you.."
KN- "Really? Really?! You've brought this on yourself big guy! I was happily going about my business until YOU decided to ruin all that by landing an incredible disease on my arse. Now I have to navigate my way through life with symptoms I wouldn't wish on my worst enemy, spend time in and out of hospital and have bits of my once untarnished body mutilated by the surgeons knife.."
H- "We'll obviously I'm very sorry you feel that way.."
KN- "Oh your 'sorry?!' What use are your apologies to me?! Are you going to make us better? Are you going to perk up your act and start acting like a normal person?"
H- "Oh do stop whining! Christ I can't talk to you when you are like this! Always the drama queen.."
KN- *aghast* "I am NOT!"
H- "Are too"
KN- "Am not! Right this is ridiculous. I'm understandably very angry with you and you don't seem to care."
H- "I do. I'm diseased too you know. We are in this diseased body together"
KN- "But I can't do anything about it- you are in control"
H- "I can only give you the hand nature dealt us, rely on you giving me a helping hand and staying positive"
KN- "Im positive that your an idiot"
H- "Oh grow up"
KN- "What, so now my growths stunted?! Because again that's YOUR problem"
H- "I don't have to sit here and listen to this"
KN- "Oh yes you do. In fact I think I need the toilet again.."
H- "No, please, not again.."
KN- "You've brought this on yourself. That, and that curry we ate 5hrs ago. Lets go"



#NHBPM 25th November

'How have your goals as a patient evolved?'

As a 'blogger' and a Crohn's patient, I've found my 'goal's' have changed pretty significantly since I was first officially diagnosed.
Originally, my main concern was with myself. I wanted to get well and desperately wanted the doctors to get to the bottom of my illness.
Post surgery, my concern was healing and learning to negotiate my way past having a huge scar where I was once unblemished, and filling my days while I recoup rested.
Since then, now almost 2years after the operation that saved my life, my 'goal's' are more focused on helping to try and educate and inform others on my illness. And, where possible, offer support to others going through the same thing.
I've also become so much more interested in learning all there is to know about Crohn's disease and educating myself on how best to help my symptoms, outside of the hospital. I've also decided to become more open and honest about my condition. With everyone, from close family to doctors and nurses. I've tried to adapt to my illness as best as I can, and make a negative a positive, whenever possible. I'm evolving with my disease, hopefully for the better.

This post is written as WEGO Health #NHBPM - 30 posts in 30 days



#NHBPM 21st November

'Write about Mental Health'

Although Crohn's Disrase is a condition mainly affecting the body, it's also, possibly somewhat surprisingly, a condition that can also be a major factor in the decline of a patients mental health. Depression, and similar issues are unfortunately quite common in Crohn's sufferers, and patients dealing with long term or similarly 'chronic' illnesses.
As Crohn's is incurable and the effective treatment can be incredibly difficult to pinpoint, it can be a constant battle to cope with the frustration.
Personally, I've found this aspect of being a Crohn's sufferer to be one of the biggest challenges to face. Mainly because there is no easy answer. Crohn's can be incredibly unpredictable and this unpredictability can also be very difficult to cope with.
When I was at my worst and awaiting surgery, I was in constant, excruciating pain. This in itself was almost unbearable for me, and also my friends and family to deal with.
Getting no relief from this led to very black moods and hard times. I tried to remain positive, but this, as anyone who has ever felt this way knows, is easier said than done. Talking, I've found, always helps to ease a little.
Of course sometimes, when u feel down of unhappy with my lot, I don't want to be around anyone, I just want to be alone in my sadness and wallow. But this doesn't help. It's hard and painful for me and my loved ones. My partner is wonderful in helping me open up and it's comforting to know he is there when I need him.
But I also know how hard it must be for him to live with someone who struggles with these feelings.
For me, talking helps greatly. It helps to share the burden with someone. Even if you feel alone there is always someone, somewhere who will be willing to listen. X

This post is written as part of WEGO Health #NHBPM - 30 posts in 30 days

#NHBPM 6th November

'A time you took the high road..'

Being a Scottish lass, 'taking the high road' is something I'm well versed in.
Other than vague directions though, 'taking the high road' obviously has another meaning..
Other than the excruciating pain, sickness, constant fatigue and fainting, amongst others, Crohn's hasn't really caused me any major problems. In the grand scheme of things.
In terms of accepting help, and letting people in - that's where the big issue seems to be with me. I've had to get to grips with being a 'patient' and not being able to do some things for myself.
Crohn's can in itself be a very debilitating illness. At it's worst, it leaves you weak and helpless. For someone who strives for independence, this can be incredibly frustrating.
I wouldn't say I'm a 'difficult' patient. I don't complain often or whine about my misfortune. But I don't open up enough to explain what I'm going through. Which can be just as difficult for others; how can they help when they don't know the extent of my symptoms?
So for me, 'taking the high road' is learning to loosen the reigns a little and accept help. I'm still struggling with this, but I'm hoping it will get easier. I suppose I expect too much of myself and I'm not yet ready to let go of some of the things I could do easily 'P.C' (Pre-Crohn's). This will come. But finding the balance between retaining my independence and letting people in, will be one of my harder challenges.

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

Sunday, 4 November 2012

#NHBPM 5th November

3 Things I'm Thankful For 

1. My family & Friends
Without this motley crew I don't know where I'd be. I have a wonderful relationship with my parents, my partners parents and our surrounding families. I am very fortunate to have some amazing friends who I know I can turn to for anything, even if it's just a spot of reassurance and a cuddle.
They have all been tirelessly supportive of me pre and post diagnosis, and continue to take an active interest in my development with my disease. They have grieved with me on the loss of my pre-Crohn's life and pushed me to see a life beyond it. They always listen when I want to talk and always seem to know how to perk me up. I love them beyond belief and my colon and I are blessed to have such fantastic support.

2. The NHS.
They literally saved my life. My Crohn's was incredibly advanced when I was finally diagnosed and it meant the only option left in the space of a few months was surgery. i had an outstanding doctor who pushed for my surgery all the way and the care I was shown before and after was incredible. I was back on my unsteady feet in no time and have been monitored closely since. I know I have several options on who to call in the case of a Crohnie emergency and that in itself is incredibly reassuring.

3. My Writing.
This may sound slightly pretentious, but I absolutely adore writing my blog. I love the fact that people out there (not just my mum) take the time to read it and I love that it has opened up a whole new hobby to me. I have caught the writing bug and it's helped me greatly in coping with my illness. It's helped me to see I am not alone, and neither are any of you.

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days 


#NHBPM 12th November

'Call BS on something. What's something that's just ridiculous?'

Where Crohn's Disease is concerned, there are so many ridiculous theories on what it is and what it entails, that I lose count. On an almost daily basis someone will comment on my condition in the most ludicrous way that I have to laugh. Either that or physically restrain myself from punching them between the eyes. I've developed a method whereby I have someone on hand to tie my hands and feet when the urge arises. Not as enjoyable as it sounds. Of course I can often get past that, as the man I bunny-hopped towards and head butted discovered.
I digress.
The main issue I've found in the difficulty most people seem to have in understanding Crohn's is the massive lack of knowledge of the condition. Speaking as someone who lives in Scotland I had never heard of Crohn's until I got it, now I know many people from my neck of the woods, a few very nearby, who have the same illness. I suppose it's understandable I hadn't encountered it, no one I knew had it and as far as I knew I didn't- but surely at some point in my life it would've been mentioned? I often think why is this? Is it the embarrassment of discussing your illness, or fear of how people will react? Or just, like me, the occasional boredom of having to explain Crohn's all over again?
It could have a LOT to do with the inane comments and opinions we as Crohnies have to contend with.
Now please don't get me wrong, I am always happy to talk about my disease, it's a massive part of my life and I'm in no way ashamed of my illness. I'm happy to educate people who honestly want to know more and are open to listening.
What I don't like, is constantly having to go through the rigmarole of disputing idiotic 'facts' about Crohn's. During some conversations I often feel I'm batting away a pesky wee fly buzzing about my ear WHO JUST WON'T DIE.
Some of my fave's and most quoted are as follows. I've helpfully provided the answers too. Feel free to print this off and push it down the gullet of any Crohn's-baiting-quiz masters you may come across;

Q: "You have Crohn's? You must be at the toilet all the time?"
A: "No. I have difficulty digesting food which often means I need the toilet more than most, but if I were at the toilet 'all the time' that would mean I'm going right now. And I'm clearly not. OR AM I?"

Q: "It's just like IBS isn't it?"
A: "No. No it's not. IBS is a 'syndrome' not a 'disease'. IBS does not cause bleeding and does not put you at risk of colon cancer. It does cause abdominal pain and bloating, and diarrhea. It does not require surgery, cause skin irritation, fevers, weight loss, anemia, loss of appetite, rectal bleeding, fistulas, strictures, depression, arthritis, liver complications, fibromyalgia, or osteoporosis, to name but a few. Clear?"

Q: "It's just a sore stomach?"
A: "If you consider living with a pain similar to labour pains on a daily basis 'sore' you are stronger person than most. The pain normally comes in waves causes excrutiating pain all over the stomach and back. This can last days to weeks, without relief. Longest labour known to (wo)man"

These examples are just a drop in the colon to the others I could list. But I didn't want to be writing this post til the end of time, I know you all have lives beyond my blog.
So, if you think you are and expert on the wonders of my disease, please don't patronise me by telling ME what i'm going through, because I ALREADY KNOW. If you want to find out more, just ask me - the response you get will be a helluva lot friendlier than the other option.

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

#NHBPM 4th November

What's In Your Bag Everyday?

Having Crohn's Disease means that on a daily basis I get up close and personal with the porcelain. I often have to visit the facilities wherever I am, so that can require ensuring I have suitable 'back-ups' in case a flare strikes.
I have a BIG handbag. And strong shoulders. If your brave enough, take a peek inside my handbag;

Bum Wipes - Soft moist loo roll. This is one if the best inventions by modern man/woman. Using loo roll on your rear all day can be very painful and irritating on your skin. These are great to have in your bag to use instead as they keep your nether regions soft and FRESH.

Spare Knickers - Pretty obvious one here. Accidents can happen. Mortifying accidents. So it's always sensible to have a spare pair tucked away just in case the worst should happen.

Painkillers & Medication - I always have my medication in my bag and at home. Some in my bag on the off chance I can't get home and have to miss it. Far from ideal. Plus, painkillers like Ibuprofen and Tramadol/Co-codamol are always in there as pain strikes on a daily basis. The thought of bit having anything with me at all would send me into a panic and worsen my symptoms.

Vaseline - Anyone who knows me will be aware I have a pretty hardcore Lipbalm addiction. I usually have (probably weirdly) around 4 or 5 tubes on me at any given time. Skin and lips get dry due to my condition so it's handy to have on hand.

Moisturiser - Again, I have dry skin most of the time, as Crohn's affects every part of the body, so I like to have a wee tub of something to keep me soft as peach ;)

Sick-bag - Horrid thought I know, but when I'm having a flare I feel queasy most of the time. And as I spend a LOT of time on public transport, getting off in time is sometimes not an option..

Mobile - My phone is always with me, the reason it gets a mention here is because it contains my next of kin's number under 'ICE' - this, in the UK is the word paramedics use to find which family member to call in an emergency. Very handy if the worst (after needing spare knickers obviously) should happen..

This post was written as part of WEGO Health #NHBPM - 30 posts in 30days

Thursday, 1 November 2012

#NHBPM 1st November

Why I Write About my Health..

The main reason I write my blog has changed quite a bit over time. I started writing shortly after my surgery for Crohn's Disease in early 2011. It was on the suggestion of my brother, who thought it may be a good way to pass the time during my recovery. On writing my first few posts I felt odd. As it takes a while to grow an 'audience' or gain people who followed the blog I often considered stopping altogether and felt foolish, like I was embarrasing myself. Thankfully, the encouragement of my brother and my close family and friends inspired me to keep writing. Soon I was hooked. It felt as fun as writing my diary, but in public. I started to enjoy it more and more as more people began to read it and comment, and I began o make friends through the sharing if stories and information.
I opened my writing up to a bit of a wider audience by posting my blog on Facebook and Twitter, and suddenly I found people from all over the world were reading my daft diseased tales. The thrill of knowing strangers were enjoying my writing was another boost. It meant my blogs were interesting to people outside my clsoe circle. Plus it gave me something to keep my mind active and off my bowels when I was off work and in a bad way.
Don't get me wrong, I by no means think that I am a great writer! I know I am distinctly average, but I do think my blog offers quite a unique twist on traditional health writing. I try to write in a humorous way, I want to show my disease is not all I am. That for others suffering it's not the end of the line.
I begun writing for myself, now I like to think I write for others. I want my blog to appeal to people who suffer from Crohn's and those who don't. I want it to help people laugh at their condition and feel they are not alone. For thse who don't have Crohn's but perhaps know someone who does, I want it to help express to them what it's like living with the disease, and to inform them on what Crohn's entails.
Bold ambitions for a silly little blog I know, but something positive to aim for I think. If I can achieve at least one of those aforementioned ambitions, i'll be a very happy diseased bunny indeed.



This post was written as part of WEGO Health #NHBPM

Tuesday, 30 October 2012

#NHBPM 3rd November

I don't know about this, but I'd like to..

I couldn't pin-point one thing in particular for this post. Probably because the truth is, I'd like to know EVERYTHING there is to know about my condition.
This thirst for knowledge has grown more so since my surgery last year. A once squeamish woman has been replaced by a ghoulish and diseased woman with an insatiable appetite for the operating table.
I've become fascinated by the ins and outs of my body. Pre-Crohn's, I couldn't have imagined being remotely interested in the workings of a common human - far les my own insides. I took as little interest as I could in my body and certainly would not have thanked any doctor who may have gone over the 'too much information' line.
Since having been diagnosed and more so after my operation, I have a compulsion to learn all I can. Mainly, no doubt, as I now feel forewarned is forearmed. If I know what may happen in the future I may be able to arm myself against, at the very least, the worst of it.
Now, when a doctor mentions something relating to my condition, rather than just let it fly over my head, and spend the rest of the day wondering what in the name of the wee man he was talking about, I instead will ask him to repeat himself, and explain what this means, and more importantly, what it all means for my bowels.
This helps me understand WHY things are going wrong and what I can do to help. All of which may not ease my bowels, but it certainly helps to easy a worried and confused mind.

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

#NHBPM 2nd November

What's the Weirdest Thing about your Health?

For me, one of the most unusual things about my health is the way in which the majority of my symptoms are shielded underneath a cloak if invisibility.
Crohn's Disease is known as an 'invisible illness' - due to the fact that on the whole, the disease us not apparent to anyone on the outside. This can be both a curse and a blessing. The latter, as I can mainly go about my day to day life without having having to discuss, or make excuses for my illness. I can look, as best as I can, like 'me' - not a 'sick' person.
Having an 'invisible illness' can also unfortunately mean having to explain your symptoms in much more detail than perhaps someone who is 'outwardly' ill. It's essential I explain exactly what I'm feeling internally in order for the doctors to get a picture of what may be going on in there.
My Crohnie cloak of invisibility also allows me to often forget I'm sick for a little while. I can pop on my lipstick and heels and pretend for a night that I'm 'normal'. And although my insides may be entirely at odds with my insides, the whole world doesn't need to know..

This post was written as part of WEGO Health #NHBPM 30 posts in 30 days

Saturday, 27 October 2012

#NHBPM 22nd November

'Thanks' Post'

This post requires me to write about what I am 'thankful' for. I'd have to say, head and shoulders above the rest, I am most thankful for the love and support of my family and friends. They are a constant source of light at the end of my colon.
A cliché I know, but without them I don't know how I would've coped in the last few years. Pre and post diagnosis, they have been an endless stream of shoulders to cry on, ears to listen with and are always on hand with sage advice. My family and friends are also great at snapping me out of any dark days, and my partner is especially skilled in this art. They seem to have to wondrous ability to know what to say to help ease a worried mind, or how to pull me back from the brink when I'm feeling low. Because they know me so well, it's easier for me to be open with them. Because they love me, when I talk I also know they are truly listening.
To mention these little miracle workers would take another blog and bore the pants off the rest of you, so I won't, but they know who they are anyway.
I'm thankful for love. Being loved and giving love. I'm thankful for those who continue to stand by side, diseased and all, and for the wonderful fact that they do all this without expecting anything in return.
I hope I manage to give them back at least a quarter of what they give to me. It's the very, very least I can do.

This post was written as part of WEGO Health's #NHBPM - 30 posts in 30 days



#NHBPM 17th November

'
Strength's & Weaknesses'

Strengths
Laughing at my disease. On the whole, I think I handle my illness pretty well, I try to use humour against Crohn's, by making light of the funnier moments. I find this also helps to ease any awkwardness in explaining the illness to others.

Openness. I openly talk about Crohn's and try to help people understand it's not all I am. It's only one (albeit diseased) part of me, that doesn't own me.

Determination. I've accepted I have an incurable disease, quite a long time ago. I've also decided, although it's a huge part of my life, I won't let it consume me. I don't want, and won't let my illness stop me doing the things I love and getting what I want out of life.

Weaknesses
Apologising for my illness. I often feel the need to say 'sorry' for being ill or having to cancel/rearrange plans due to Crohn's. It's a difficult habit to break but I'm getting there..

Saying "Im fine" when I'm not. It's become my go-to response when I either don't want to focus on my illness or don't want to worry people. However I'm starting to realise it only makes the people who love me worry even more.

Accepting help. Like saying 'I'm fine', I need to learn to allow people to try and help me when I'm at my worst, rather than just assuming there's nothing they can do for me. In reality, sometimes just a hug or a kind word can make the world of difference.

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

Sunday, 21 October 2012

#NHBPM 23rd November

'What my Doctor taught me..'

When I first felt ill, I told my parents. I told them my stomach hurt and that I thought I probably had some horrid bug or horredous trapped wind and that I thought I should see the doctor. They encouraged me and I visited the surgery. I visited the surgery a good few more times as my symptoms started to get worse and the pain more intense. My frustration also got worse as I seemed to be fighting a losing battle in expressing just how awful I felt and how seriously it was all affecting me.
I visited the doctor once more, it had taken me over an hour to walk to the surgery (5minutes away). I was ghostly white, had vomitted several times on the way there and was huddled over in pain like i'd just been kicked in my lady parts with a steel toed boot. My doctor panicked and sent me to the hospital, assuming I had appendicitis. Being the idiot I was back then, and not wanting to put anyone to any trouble, I took the bus rather than an ambulance the 40minutes to the hospital, almost passing out several times during the journey.
This then begun the same routine of back and forth frustration, but this time the visits were to the hospital instead of the doctors. I was getting nowhere until I was eventually admitted and got my own consultant. The same consultant i'd see on every visit. This alone was a blessed relief. It meant I didnt have to explain myself everytime I arrived at the hospital, I could chat to this woman who gradually was getting to know me and knew my condition, and more importantly, wanted to help me. She explained that although I answer all her questions and explain my symptoms, I dont TALK. She told me she thought I held back and down-played what I was going through, she said she could see I was actually in a much worse state than I said I was and that I had to tell her the truth so she could help. She taught me that honesty is the only way. Hearing her say all this was a real turning point for me. I realised she was right and that I DID hold back and keep quiet about how bad I felt. I didnt want to seem whiny, helpless, or worse, to be told it was all in my head and I was being over-dramatic. This couldnt have been further from the truth. I would leave the surgery feeling angry and upset at nothing being done for me, but it started to dawn on me that the reason for that may have had a lot to do with me giving the doctors minimal information to go on, or assuming what they would think of me.
When I did what my consultant told me to, doors (literally) opened for me - she made sure I was seen by a surgeon, she rushed me through various treatments and jumped through various hoops to get me ready for surgery. She fought my case in a room full of surgeons who told her i'd have to wait 6months before being considered for surgery, she got me onto and off the operating table within 3. She essentially was a massive part of saving my life.
Her words have stuck with me so much that I now hold nothing back wheni'm bad and enjoy the times when i'm good. Her encouragement has also helped in my relationships- I hear her refrain of 'Be honest' whenever I say "I'm fine" when i'm not. I try my best to be honest and talk about my illness when I can and cut myself a bit of slack whenever possible. Now be honest, isn't that the best policy?

This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

#NHBPM 8th November

'Write a letter to your Health..'

Dear Health,

How are you?
That's a question people always ask of me and I often don't know how to answer. You and I have always had our differences. There was that time when you attempted to kill me when I was a baby by forcing me out of the comfort of my Mum's womb far, FAR too early. Guess you just couldnt wait for us to get going on the life front. Then there was that other time when you tried to take my life, our life, again when I was a toddler by giving me a horrendous virus yet not equipping me with the immune system to be able to fight it. I did though. No thanks to you. For a good few years after that you kept your distance and were on pretty good behaviour, stopping me in my tracks a few times with measles, chickenpox and various assorted issues.
I think a lot of the time you've perhaps felt i've not given you enough attention over the years. I know i've not had the best of diets, i've probably eaten too much chocolate and drank too much fizzy juice, not gotten enough exercise.. I had a pretty tame youth though, I didn't go crazy with drink and drugs and free love in my teens and I think on the whole I refrained from abusing you in a similar way to some young women my age.
I realise you've had a bit of a problem with me since I was a wee nipper, but what I want to know is why you had to land me with an incureable disease in the prime of my life?
I was just starting to get a handle on my relationship, moving (literally) onto a new chapter of my personal life and looking to change my career when you knocked me for six. Since then, I have to say i've thought you were a bit of a bastard to be honest. I've spent a lot of time blaming you for all my misfortunes but i'm coming to realise you are not entirely responsible for my defunct insides. I think holding onto negative feelings and anger at your lack of consideration for me doesn't help either of us. You and I are never going to see colon to colon so I should just learn to accept it.
We should just agree to disagree, you think you can lumber me with an incureable disease and make my life a living hell, I KNOW I can take whatever you have to throw at me.
Don't get me wrong, we will never be BFF's but I reckon we can work together to make things for my body a little bit easier. We both have to live in this incredibly hot body together, so how about we try to get along? What do you think? (about getting along obviously, the incredibly hot bit is a given).

Yours, diseased always,

Kath x x


This post was written as part of WEGO Health #NHBPM - 30 posts in 30 days

Saturday, 13 October 2012

Crohnly Wanna Be With You

As a woman with Crohn's, there are a few issues myself and my fellow members if the fairer sex have to contend with. In addition, of course, to the already jam-packed array of symptoms the disease brings with it.
The most obvious difference between men and women being that of our monthly treat, or 'period' for the less squeamish male readers amongst you.
Through talking to several wonderful women with Crohn's, it seems, as Crohn's is completely different from person to person, the affects the disease has on ladies at their time of the month is also interchangeable.
For several women, including myself, symptoms and pain are noticeably more prominent during this time. Spending a lot more time at the loo is a regular occurrence for a few days prior to a period, and the pain of cramping seems to be intensified. Women often also complain of a constant need for the toilet and constipation, which as a Crohn's patient is not something positive. Others complain of their period causing even more bloating than usual, pressure on the gut, and even causing pain from colon to abdomen.
Other than the usual monthly few-day-diet of hot baths, hot water bottles, pain killers, and a vat of chocolate, there are few things to ease this extra pain.
Bit of a bloody nuisance eh?
So, as this special time of the month can often put a dampener on romance and the burning of loins, so can Crohn's Disease.
Some women find that sex on the day before or when in pain can often help ease tension. The theory being that the mind will be distracted from the pain the body feels. This is good, in theory, however for many of the Crohnie's I've spoken to, the issue is more in suffering from the disease and feeling the 'urge' and acting on it.
Obviously everyone is different, but for many women, sex and relationships can be real issues, and often spark worrying and stressful situations. This in turn often induces or exacerbates symptoms, causing a vicious, sexy, circle, difficult to break.
During bad flares, women with Crohn's often have no interest in sexual activity, the idea of anyone coming within an inch of you can be abhorrent when your insides feel like they've gone 10rounds with Mike Tyson.
Some women have gone as far as to say they would need drugs (of the purely medicinal kind obviously) to get in the mood, or that their sex drive has reached a serious pit stop due to living with the disease.
Nerves can be damaged over time due to surgery, medications and treatments, which can cause loss of sensation to all parts of the body.
Wind build up from all the 'activity' can be incredibly painful and sex can often cause abdominal cramping for hours or even days afterwards.
Lack of interest in making sweet, sweet love is saddening enough in itself, however factor into that having another persons feelings to consider, this can be a tricky time.
Relationships can suffer when the disease influences your mood. As with most people, when you are in constant pain, the last thing on your mind is your libido. This can be disheartening for your partner and hard to express without hurting your loved ones feelings. Guilt caused by this lack if interest can quickly escalate and make for an even more difficult situation.
Those not in relationships also say they find it difficult to know when to bring up their condition when meeting someone new. Many often find that the disease leaves them feeling far from sexy and alluring. Crohn's Disease and sexiness don't often go hand in hand.
Personally, I've found I've spent too long in dwelling on how unattractive Crohn's has made me feel. I know my beloved loves me, pre and post disease. I've spent far too long focusing on how bad things MIGHT get or how he, or I MIGHT feel in a month or a years time. I now try to be completely honest with myself and with him about how I feel and what's happening to my body. However 'unattractive' it may be.
There's no reason Crohn's can be 'sexy'. We have to make the most of what we have and use it to the best of our ability. For me that's the amazing strength and determination I've gained in living with this disease. The opportunity it gives me to laugh at myself and to show I am so much more than my disease. Oh, and despite Crohn's I still have a cracking rack.

Wednesday, 3 October 2012

A Fine Line

One of the worst things about Crohn's being an 'invisible illness' is that I have to talk about it.
Don't get me wrong, I'm by no means ashamed of having this disease, I simply mean as no one can see what's wrong I have to speak up for myself and explain my symptoms. I've spoken about this in my blog before, but as it still appears to be something I'm struggling with its still relevant to me.
Outwardly for Crohn's sufferers the milder symptoms, and most common, are not instantly apparent. Certainly I have found that the disease affects my appearance, in such things as bloating, skin rashes, dry skin and hair loss (lovely eh?) but again these things could all be written off as feeling under the weather or run down.
My parents, partner and close friends all 'know' when I'm feeling awful- they can see it in my flaky, cracked, dried out, haggard face, my behaviour and even my stance, being hunched up like the hunchback of Notredame gives it away most of the time. But even a select few of my colleagues have also said they can tell when I'm poorly- they see me almost everyday after all, and after a while start to spot the signs.
I spend an inordinate amount of my day saying "I'm fine!" when I'm not. Why do I do that? Yesterday I wasn't fine and my boss insisted I lie down in our first aid room. She tucked me in and everything like a proper legend. I felt slightly uncomfortable and awkward but as we get on pretty well I didn't feel daft being 'ill' around her. I think on the whole I'm not as honest as I could be about my Crohn's as I don't want to be pitied. Especially in a work environment- I want to appear strong and professional, not limp and sickly. Even if the latter two are how I feel the majority of the time.
This may all sound silly to those of you who may be reading this and are healthy - but bear in mind when you are sick you complain, you go to the doctors, you are 'cured' (on the whole) - you are entitled to gripe and moan because that's just what you do when you are ill, you get leeway to feel sorry for yourself for a few days!
But what do you do when that's how you feel everyday? When you feel awful almost everyday in life and know you aren't going to get better and there is no cure? It's the thing I struggle with most, trying to separate my 'life' with my illness. An impossible task. I can't seem to find where I am meant to comfortably slip this in. This blog is a great place for venting and waxing lyrical on my woes, a sort of public diary, but when the laptop is closed and the post is out there, I still have Crohn's. The end of the page is not the end of my story.
I've said before, honesty is key. In all aspects of life it's so important. So why do I find it so difficult not to lie about what's in my gut? (Literally). Having given it some thought I suspect I'm terrified of people getting 'sick' of me. Sick of me complaining, or cancelling plans or generally not being 'fun' anymore. But this is a vicious circle as the more I focus on that the more I bring my mood down! When I told my partner my fears about this, he said "But you don't talk about it - at all" - that was a long time ago, and since then I've made a point of telling him when I feel bad and explaining as best I can my symptoms. Because I realise I'm not alone, and that's something I'm very thankful for. I try to think of how I'd feel if the diseased guts were in the other body and it doesn't even bear thinking about. I'd be heartbroken and helpless to see someone I love going through this. I can't even handle it when my Dad has the cold. So I try to be tolerant and patient when people ask because I too am allowed to be cared for and loved. And that's a wonderful thing, that makes me feel so very FINE.

Saturday, 29 September 2012

Pain in the Gut

Along with all the other incredibly enjoyable symptoms of Crohn's Disease, one of the main one's i've been dealing with lately is joint pain. For me this seems to go hand in colon with fatigue, so as well as feeling sore most of the time, i'm also battling the zzz's the majority of my day.
The main pain I suffer from is on the bottom half of my body, from my hips, to my knees to my wee footsies. I also get a lot of back pain, and as my job means I type all day my fingers and wrists seize up too. 
This seems to be a common occurence for many Crohn's patients so I am by no means alone in my gripes. 
All this pain and annoyance is irritating, but when combined with the other symptoms associated with the disease it can leave you waking up feeling you've been ravaged all night. Without any of the satisfaction. 
Conventional painkillers have ZERO effect on me, proabably due to becoming immune after popping them like sweets over the years. Stronger pain relief tends to make me queasy as my diseased guts kindly reject any help they are being offered, and things like Tramadol and morphine send me into a blissful coma where I am barely capable of quoting my own name. 
So you see it's difficult for people like myself to manage this pain. Especially when you hold down a full time job and have a cat and a 36 year old man to rear. I can't take anything too strong while i'm working as I have to be at least a little aware of my surroundings and my own name, and anything too weak and i'm a doubled-up wreck attempting to remain upright at my desk. 
Having a crohnic illness also means exactly that; being crohnic means it is not going away and therefore not easily remedied. It is a difficult balance of finding the right medication and pain relief to suit each particular body - not an easy task for any doctor. With me and most Crohnie's it's a case of trial and error. In my case LOTS of error along the way. I am now on a drug trial, which is doing well to keep my symptoms under control, but the pain in my joints and guts is so unpredictable that regular meds just don't cut the mustard for this Crohnie. 
The past few days i've found it quite a struggle to walk and my legs have felt like lead - walking like you've been sitting on a horse for the past 48 hrs is NOT a good look. Trust me. Even Clint Eastwood would probably knock me back at this moment in time. 
Anyway I have to go before my hands turn into claws. I have an romantic evening of smearing myself with deep heat planned. x


Sunday, 16 September 2012

Diseasey Like Sunday Morning

I'm sick.
Yes, of course I'm 'diseased', but I mean right now at this very moment, I have a bug. A horrid throat infection-chest infection-queasiness causing-dizziness making-headache inducing bug. This is probably something I could shake off  in a matter of hours, but thanks to my horrendously useless immune system it's taking slightly longer than I'd like. Annoying. It has drained me of any energy I had and reduced me to a withered hag with bags for life under her eyes who squints at a glimmer of daylight.
As I said, annoying.
My beloved told me earlier that I'm "whinging" and if I'm going to continue maybe I could "do it in another room" - of course this was a joke, (it WAS a joke..), and although I took it in the manner it was intended, after bashing in his brains in with a frying pan, it got me thinking about how people on the 'outside' of my disease feel.
I've touched on this subject before in my blog, and it's one that I consider quite regularly. I am forced to, mainly due to the fact that living with Crohn's can be so unpredictable that I often have to let down others and cancel plans. Sometimes at the last minute, and sometimes DURING the actual event. This makes me feel crap. Literally and otherwise. I hate letting people down, and no matter how cool about it people are I know its disappointing for them too.
I try to limit the amount I talk about my disease amongst my friends and family. Of course, knowing what they know about me its obvious and wonderful that they will always ask, but I never want to cross the line from concern to pity. I don't want to be the 'sick one' and don't want the focus to always be my illness. My colon gets more than enough attention as it is.
Most of the people with Crohn's I know or 'know' online, have a similar view to mine. They are all so much more than their disease and try to live life to the full. This isn't always easy, as Crohn's gets in the way of a lot from time to time. It can affect you physically and mentally and make it difficult to negotiate new relationships and even maintain current ones. At times I struggle to know how much is too much in talking about my disease. I don't want to bore people or make them feel uncomfortable, but now after living with it for a while i've come to establish who is willing to listen - and often more importantly, who will tell me when to shut up about it.
People who love me want to know I am well, and also want to know when I'm not so they can listen and care for me and offer help where they can (usually through doing both of the aforementioned).  
I don't want people to pussyfoot around me and I certainly don't want anyone to feel pity for me. So I often walk a conversational tightrope, one Crohn's related anecdote too many and I see a friends face glaze over, one too little and I get tangled up in explaining the reason I'm not talking about it ISN'T because I'm actually dying and trying to keep it quiet.
So please, if you know someone with a chronic illness, remember chronic means exactly that - it won't go away. So be patient if that someone wants to tell you how sore or queasy they are (AGAIN), and vice versa, bear in mind the person opposite you might have something equally as crap going on in their life.
Now if you'll excuse me, I have to take my boyfriend to A&E.




Thursday, 6 September 2012

IBD & Sympathy

I had a very vivid dream last night that I was back in hospital. It wasn't a nightmare, just a dream. Not entirely unpleasant, perhaps now because I associate hospitals with making me feel better. Now that I know what's wrong with me that is. A few years ago, pre-diagnosis, this was very much the opposite.
I think the dream spawned from the amount of Crohnies I've spoken to recently who are, or very recently have been, in hospital for Crohn's related issues.
Obviously I am only too aware there are often complications and problems caused by Crohn's that will and do require hospital time. But when it is happening to someone I know (as well as you can 'know' someone through social networking), it hits home. My colon aches at the sheer thought of it and my heart is heavy for them.
The bravery of my fellow Crohnie's never ceases to amaze me. So many people still don't understand the often horrific and gruesome symptoms we have to deal with, inside and outside our bodies. Surgery is incredibly common and complications more-so. This is not me trying to scare people into submission, just stating the facts. Trying to get across that Crohns isn't a 'tummy upset'. It's an incurable disease that can affect every part of the human body.
Although I myself have been relatively well since my operation last year, I still suffer often crippling symptoms and struggle to eat. This in itself is a pain, and can be incredibly frustrating, but I thank Bowie (God) that I'm nowhere near as ill as I was prior to my op. There are people of all ages going through what I went through right now and this makes me sad. They are struggling like I struggled.
The most common statistic about Crohn's patients post-op is that they will most likely need surgery again within 3-4 years of the first. This worries me a lot. Time flies, and the thought I'll have to go through that again is a depressing one. However some people can go a lifetime without ever having to slip into an ill-fitting hospital gown again. That's the option I'm aiming for. I look terrible in white.
I hope anyone who reads this and is suffering now can see the light at the end of their colon. It does get better, and when it does make the most of it. You may be diseased but your crumpled up insides are filled to bursting with awesomeness.

Yes I just said awesomeness. X

Sunday, 2 September 2012

Just The Crohnic

A major issue I have in living with Crohn's is tiredness and general lack of energy. This would be fine during a flare-up or when I've been hit with a bug to deal with on top of my disease, but this is all the time. All day every day.
This is a common complaint amongst Crohns sufferers and there is fairly little to be done in attempt to combat it. Most people living with any Chronic illness would tell you that day to day activities tend to take a lot more out of you than would do a 'healthy' person.
For me it seems no matter how much sleep or rest I get I still wake up feeling shattered. Meaning the simple task of dragging myself out of bed becomes a mammoth one. Not uncommon amongst the human race I hear you cry, no one likes getting out of bed. What I'm talking about is not the idea of getting up and heading to work when you would ideally like another couple of hours before facing the day, I'm referring to the physical aspect of getting up and ready. For me this is one of the hardest parts of the day. I usually wake up with stomach cramps, desperate for the toilet (another thing I have to factor in us how long I may have to spend on the porcelain before I leave - meaning I get up half an hour earlier than I have to).
The thought of getting on a bus and working all day is hard to bear when you wake up in pain and feel like you've been pulled out of hibernation 3months early.
I travel to and from work on public transport, followed by a 15min walk. This travelling tires me in itself, then at I head into work and am mentally shattered by the time 6pm finally rolls round.
To someone without Crohn's or any other form of Chronic illness, all this may sound a tad dramatic or even silly to complain about. What I'd say to you is, if you have felt like this once or even twice, remember how awful you felt, how much it took out if you, now imagine that everyday, for the rest of your life. Quite a depressing thought eh?
The fact that I'm constantly tired and have zero energy affects me not just in my professional life but also in my personal. I often have to cut short evenings out or let friends down if Crohn's strikes. I hate this because it upsets me when I feel the disease is getting in the way of me living a 'normal' life, or when I'm stopping the people I love from having a good time.
It's easy to say, and has been to me, that when you are 'well' we should all try to focus on that and enjoy Crohn's-free moments, but when your immune system is shot so badly that something as measly as a summer cold floors you, or walking 2minutes to the shop has you clinging on to a handrail for support, it's hard to forget.
I now have to force myself to remember I can't do certain activities without agonising following. I can't carry anything heavy (this is where online food shopping comes in very handy) and I can't walk long distances without breaks. I can't Hoover or cut the grass without feeling like someone is stretching my insides to snapping point. Annoying, but thankfully I live with another human who can pick up the slack here and there. And a cat to helpfully ensure we will always need to Hoover.
The main tips doctors and health professionals advise are to eat healthily (difficult for most Crohnies), sleep well (hmm..) and get plenty exercise (have you read any of what I've just said Dr? eh? EH?!). Also many consultants advise B12 injections to help boost the immune system. Effective but only for short periods of time.
Ive found only doing little bits in small doses has been vaguely effective in allowing me to pull a full day without falling asleep on the bus. Don't push yourself and don't assume your diseased body will allow you to do what it may have done before. That said, enjoy life and don't hide yourself away! Don't listen to cynics who have no understanding or comprehension of what Crohn's does to us inside and out.
I know I don't ;)

Wednesday, 22 August 2012

You Don't Crohn Me

I try very hard to make it easy for people outside of my close family and friends to understand what Crohn's is, and how it affects me. This is difficult. One because Crohn's is so complex and affects the body in so many different ways, and two because although the main symptoms are the same, everyone has Crohn's in their own way.
I try to explain the disease using humour, laughing at my defunct body and some of the situations it puts me in. This is a double edged sword though. On the plus side, it puts people at ease to ask questions or not feel they have to pussy-foot around the 'ill' person. But on the negative, I've found it sometimes gives carte blanche to joke about it and make light of the disease.
You might say, how can I complain about people laughing at Crohn's when you are the one who encourages it? Well there is quite a major difference between being able to laugh at yourself and someone laughing at you.
This is my life. Unless there are some serious leaps in modern science, I will undoubtedly have this disease for the rest of my life.
When I try to laugh about my Crohn's it's to show that I'm not prepared to lie down and wallow in those aforementioned, (and totally depressing) thoughts.
When others make light of what I, and so many others suffer from, its incredibly frustrating. Its insulting. It then makes me feel perhaps I'm being too sensitive. But either way it doesn't matter because it's how it makes me feel and that's uncomfortable.
Crohnies suffer pain and discomfort of some form most days. Anyone who has a crohnic illness knows how much of an effect this can have on your state of mind as well as your body. When it feels like there's no light at the end of your colon it helps to be able to smile and laugh. Please don't make that more difficult for us than it already is by making us feel we have to hide our light away. Laugh with us, not at us. Be nice about our bowels and they'll be nice to you. (That's a threat and a promise).

Tuesday, 14 August 2012

The Bowels Are Not What they Seem

Its almost my Crohniversary! Almost 2yrs to the day since I was officially diagnosed with Crohn's Disease.
Let me tell you a little bit about myself pre Crohn's;
I would say I was probably a bit of a drama queen. I revelled in arguments. I loved to make a mountain out of a molehill and went through all the normal teenage angst of thinking the world (and my parents) were against me. I liked to think everything I wanted was going to simply fall into my lap and my life would turn out as I wanted with minimal effort on my part. If something didn't go to plan it was simply someone else's fault - no question. As I was so wonderfully perfect how could it be my fault? I was as contrary as could be.
This phase of my life didn't last too long, thankfully. It didn't disappear entirely however, various ups and downs I encountered over the years to follow kept me in the mindset of my responsibility for my own actions having to be minimal.
Looking back I certainly don't think this was all outwardly apparent, perhaps to those closest to me, but on the outside I probably seemed pretty mature, I suppose I was - I knew my behaviour was that of an arse but I wasn't quite mature enough to stop it entirely.
This idiotic attitude calmed as I got older and then post diagnosis, stopped altogether. I was suddenly in a whole other realm of responsibility - this time I couldn't blame the Gods, my parents or anyone I saw fit to for my disease, as it was entirely irrelevant. Blaming anyone for Crohn's and having a hissy fit wouldn't make this go away.
I did the opposite to what my younger self would've expected me to do, and refrained from shaking my fists and sobbing at how the world has turned on me and gifted me this horrible disease. I didn't give it big licks on the "why me?" front.
I DID cry, I got angry at my own body, the doctors for not being able to fix me, I grieved for the loss of my health, then I sucked it up and focused on feeling better. I listened to those same doctors and paid attention to what I needed to do to get better.
Now, post Crohn's, I am definitely a different person. I'm not angry. I don't worry as much as I did before - because I know I can face whatever Crohn's has to throw at me. That doesn't mean I will relish the future with an incurable disease, but it does mean I know I am strong enough to cope with it. I don't look on everything in a negative way anymore, I look at what I have and what I almost lost and smile at how lucky I am. I don't take anything or anyone for granted and love passionately and unconditionally.
I embrace my disease and try to help others do the same. I use all my best qualities to my advantage and strive to see the best of what should traditionally be a negative thing. I'm not going to go down the road of it being fate that I got Crohn's because I don't believe that, I just see it as the kick up the colon I needed to see life as a positive thing and not something to waste on negative thinking.
So if you are in the same position I was 2 years ago and it seems like the world is ending, please believe me when I say it isn't. Crohn's is a terrible disease and can take over if you let it, so don't. It really is that simple. It took me a while to work that out so I'm giving you a heads up here! You are stronger than your disease. Don't let it define you.
Crohn's may have ravaged most of my insides, and a lot of the outside, but the only part of my body it can't reach is my brain, and I'd like to keep it that way.

Tuesday, 7 August 2012

The Sword In The Crohn

"Can you rate your pain on a level of 1 to 10?"

A question we as Crohnies are asked more often than most. Pain and Crohn's go hand in bowel. We can experience pain regularly, depending on the severity of our illness. Some suffer incredible pain during diagnosis and early treatment, later either going into 'remission' or finding the pain much more manageable. Others are in constant pain and discomfort of varying degrees.
For me, the pain I experienced before my diagnosis was something I've never been able to properly describe. Most people liken the pain of Crohn's to labour pains and contractions; having never had any bambinos myself I can't agree or disagree. Only difference there of course, pregnancy is over after a few hours, this is a pain we have to manage for the rest of our lives. Slightly daunting prospect that.
Pre Crohns and prior to visiting a doctor, I suffered horrendous pain in my stomach, lower back, legs, and ached all over the other bits I haven't mentioned. I visited the doctor a few times complaining of these pains but was left feeling stupid and made to feel I was over reacting - this pain was probably just indigestion, trapped wind, or period pain I was told curtly. I knew it was none of the above, I knew something was seriously wrong but I was also the one feeling helpless and at the mercy of my GP.
The last visit to my GP consisted of me lifting my blouse to let her examine me, almost passing out when she touched me then collapsing into tears. She suspected I had appendicitis and wanted me rushed to hospital. I say 'rushed' - I was to walk home, get a bus, sit out a 40minute journey then check myself into hospital.
A few awful months followed where I was in and out of hospitals awaiting the entirely inappropriate operation to remove my appendix.
Thankfully they never actually got round to it, and I was eventually diagnosed with Crohn's. Throughout all of these trips to and from hospital, I was in incredible pain. Pain that seemingly no treatment could begin to touch. Any medication brutal enough to have a go at the pain made me violently ill, and unsurprisingly vomiting didn't ease the stomach pain any.
Crohn's pain cannot be explained away by quoting a number between 1 and 10. It's unique to each patient and everyone's pain thresholds are different. I understand doctors and nurses need some form of tool to measure pain but as a patient there truly aren't enough words in the dictionary to convey pain.
The pain I went through prior to my surgery was staggering. It meant I could barely walk, breathe, or do anything more than lie in the one vaguely comfortable position I could find, stiff as a board, until it either subsided or I fell into a drug induced stupor. Preferably both.
Now I suffer more from sickness and all the other lovely symptoms of Crohns on a daily basis. This is far from pleasant but a relief that the pain is minimal. And I can eat without feeling like I'm trying to digest razor blades, which is a lovely bonus.
When the pain strikes, like tonight, I remember how awful my life could be and feel thankful I'm not suffering like this everyday. I also panic a little that it won't pass and I'll be back to where I was pre-diagnosis. But mainly I think of everyone else who is going through the same thing. How they may be feeling this same pain too, now and everyday, and how awful that must be. And how I wish there was anything I could say to them to soothe an achy gut. But all I can do is try to sympathise, and show others the same consideration and tolerance I would hope others would gift me.

So, how is your sympathy, on a scale of 1-10?

Thursday, 26 July 2012

Diseasey Street

Ive been thinking a lot about how my relationships have changed since I was diagnosed. It's been over 2years since my 'official' diagnosis, and there's been a noticeable shift in my relationships since. It's been gradual, but becoming more apparent as I settle into my life avec Crohn's.
Some people have made a point of removing themselves from me as time goes on, perhaps because they are uncomfortable in talking about my illness, it makes them feel awkward or they just don't want a 'sick' friend anymore. Or maybe it's just a get out clause after having spent years being trapped listening to my patter. Whatever the reason, its odd.
At first I found this hurtful, now I don't. I feel sorry for people who have difficulty in dealing with someone else being ill.
At the risk of sounding like a bad charity advert, most people at some point in their lives will have to either cope with a serious illness of their own, or deal with a loved one struggling with it.
It's heartbreaking to watch someone you care about decline, it's torture if you love someone and there is absolutely nothing you can do to help. The answer never lies in running away though. It means it's time for you to locate your balls and remember you are now 'on', it's time to step up and show you can be a big comfy blanket for your loved one to rest on when they have spent 5hrs solid throwing up what's left of their insides. Not a nice image is it? No. But you know what's even worse? Being the person doing the throwing up and doing it alone.
Don't get me wrong, this post isn't solely focused on me, I know others who feel like this, times 100.
I am lucky to be surrounded by an amazing man, fantastic family and people who care and make me laugh and help me remember I'm not just "'her with the Crohn's".
This goes for everyone coping with a crohnic illness, mental illness or anything that makes you feel less of yourself; YOU are still in there, a wee bit more 'diseased' than you were before perhaps, but still there.
That's nothing to fear, fear only the wrath of wronging a person constantly fighting a brutal disease daily. You have NO idea what you are dealing with.
And therein lies the problem.

Sunday, 15 July 2012

Don't Know What You've Got 'Til It's Crohn..

Hello ladies and gentlemen, cats and kittens. This post is a bit of a bitch to write. It also feels a bit hypocritical, as this is a blog about ME and MY illness and I'm writing a post about people posting about their problems. But if you choose to read further than this line then obviously you want to so thanks for that.
So, anyway, I was inspired to write this post due to the recent influx of endlessly negative posts i've encountered on Twitter, Facebook and other social networking sites (i repeat SOCIAL NETWORKING - remember that as we will come back to that later). It seems people want to use these sites as forums to spread misery to a wider audience, isn't that nice? NO its not. Its boring. Very boring, and dull.
Now I am by no means perfect, I'm sure there have been times I have tweeted, or posted a status not particularly inspiring or not gut-grabbingly hilarious (although I'm struggling to remember it) as that's human nature. Human emotions mean we are a big melting pot of  feelings, sad, happy, confused, angry etc etc to infinity. Its completely understandable that we have 'off-days'. What I'm referring to are those people who never have 'on-days', and choose to share that with the rest of us.
Life is super hard, people die everyday from old age, in abject poverty, in war-zones and by the hand of someone else. People are suffering RIGHT NOW from life changing illnesses and the desolation of losing a loved one or from crippling anxiety or depression. That completely floors me, I hate it and I want to cuddle each and every one of them and tell them it will get better. But as we know thats impossible, I have nowhere near enough air-miles for a start and my passport hasn't been renewed since 2007.
What people need, and want is to be reminded that there is happiness and good in the world and things can, and do get better. If you let them. If you try. Because we are all in the same boat. Some people have a harder time than others - this in itself is all relative - if you have never experienced pain or misery, the passing of a beloved pet may break you, whereas someone who has lost the love of their life, or a parent may grieve then flourish, happy with their memories and go on to lead a happy life.
I've never lost a parent. My mum and dad are amazing and I suppose I still imagine they will always be there. I know it will hit me very hard when they go, this is understandable, I grieved for a long time over the loss of my Granny Peggy who was an incredible wee Scottish woman, hilarious, gentle and full of fun and wisdom. We adored each other and losing her toughened me up to the world. Not in a negative way, just made me aware I'm strong enough to cope. That was her legacy for me.
I've digressed a bit, my point is that social networking is somewhere to share knowledge, share jokes, chat and make friends, HAVE FUN. All positive things. I for one use things like Twitter as a form of escapism, I love reading all your funny tweets and that you take the time to read mine, and I adore chatting to people from weird and wonderful places all over the world.  Its also been an endless support to me since my diagnosis, a place i can post a question about Crohn's and get over a 100 replies form amazingly helpful and considerate fellow Crohnies. FUN + LEARNING = AWESOMENESS.
Someone recently called my disease a "melodrama". I'm not going to name names as I'm not a horrible person, and besides, that person is tied up in the boot of my car now. Show a bit of respect for the dead, please. This person in a round-about way accused me of using my disease as a way to gain popularity. This made me angry and sad and depressed and then unbelievably grateful that I don't see life that way. I see myself as someone who tries to flourish and enjoy my life IN SPITE of my illness. You, my darling boot-dweller, and all the other negative nellies out there who think this is the way to lead and happy and healthy life, are deluded.
Please try to remember that life can be an amazing thing - for a start you are ALIVE. I almost wasn't, so please relish that and try to get out from behind your keyboard and see that for yourself.

Thank-you for letting me rant x x