Sunday, 22 January 2012

Not Your Stepping Crohn

Do you want to know what I hate? And I do it too, daily i'd say. I'm talking, of course, about lying. Telling porkies, fibbing, whatever you want to call it. It all amounts to the same thing.
I lie most days about my illness. I say 'I'm fine' or that I'm 'feeling much better' and even 'I'm great!' - when most days these replies couldn't be further from the truth. I have no idea why I do this. Perhaps to spare myself (and others) from going on endlessly about my various health woes, or to avoid having to focus on the negative and pretend my fibs are actually true?
Lying is something everyone is guilty of. As my favourite (not-real) doctor, Gregory House once said, "Everybody Lies". And he's a doctor so he should know. People lie everyday, little ones, big ones, some lie about having big ones when they have little ones.. Its the circle of lies.
Lying is a trait learned from a very young age. As a child baby learns if he cries Mum will come and give him the attention he craves, cuddle him or feed him. And thus the little liar gets his Rusk. Probably wasn't even hungry. Liar. People in adult-hood tell these lies for many reasons - it could be a 'little white lie' to spare someone's feelings; ("Of course you look gorgeous in that pink velour tracksuit darling! It brings out your eyes"), or for more sinister reasons; ("I have absolutely no idea where my wife is or how this bloodied knife ended up in my hand, Officer").
I've often lied to doctors and nurses about how I'm feeling - I don't want to complain or be seen to be a nuisance. Incredibly daft. They NEED to know how I am in order to be remotely able to make me feel better. Who does that lie I'm telling help? Not the doctor, and certainly not me. Crohn's is an incredibly tricky disease to pin down. It took years to establish what was wrong with me. It's also a challenge to treat, finding the right treatment can be a minefield. That's why it is so important to be honest with everyone from the word go. Get into detail with the doctors, don't be embarrassed, explain as best you can exactly how you feel, what affect it is having on you and don't leave anything out. It doesn't make you sound like a hypochondriac (unless of course you were fibbing about being ill in the first place) - it makes it 10 times easier for them to build up a profile of what's causing you the problem.
Lying is bad for you. Pinnochio learns this gem the hard way. My hooter is substantial enough as it is - can you IMAGINE if that fairy tale were actually true? I'd require a shopping trolley to transport my beak around with me. "Liar Liar Pants on Fire" is another childhood favourite, indoctrination into why lying is bad from a young age sprinkled with mild bullying. Having been brought up a Catholic, its deeply ingrained in me that I feel I should do 10 Hail Mary's every-time I say i've taken the bin out when truthfully i've forgotten (again).
The bottom line, and with Crohn's there's always a bottom-line, is that you want to get better, yes? So start by telling the truth. Don't hold back and let the people in the know help you. As for fibbing to my family and friends about my illness, I'm still trying to get better at that myself. Not an excuse of course, I know the areas I need to work on and i'll start by repeating my Hail Mary's after this is typed up. Would I lie to you?

Friday, 20 January 2012

Into The Danger Crohn

I've never considered myself to be someone who suffers from depression. I often suffer from bouts where I'd say I feel 'blue' and fed up and that I'd like to just curl up until it passes and I become remotely pleasant to be around again. But not depressed.
Depression is an illness. One of the worst you can suffer from. I've never thought these bouts of mine are significant enough to be labelled as such, it seems churlish of me to compare my 'mood swings' with having to live with the burden of depression. It just doesn't tally in my head, doesn't seem 'important' enough. Therefore as I can offer no logical explanation for feeling this way it's best just to keep it to myself until I 'snap out of it', right? WRONG. This is the worst thing I, or anyone could do.
Talking helps. I truly believe that. You don't have to try and explain what's going on in your inner psyche - but you could try to get across how it makes you feel, how it's effecting your life and at times just how completely and utterly alone you feel.
Depression brought on by Crohn's is much more common than people may think. The thing is, Crohn's as a disease is so uncomfortable and embarrassing to talk about that when you combine that with feelings of depression you have one massive melting pot of misery that not many people on the outside are able to stir. It's relentless.

As I am limited in my own personal experience of this issue, I approached some of my fellow Crohn's sufferers. I was very pleased to receive so many replies from people of all ages sharing their stories - but was saddened to hear the extent of their experiences, from mild bouts of depression to much more severe.
So what causes someone suffering from Crohn's to feel so helpless that the only way out is to shut themselves out from the world, or worse, end it all?
Above all Crohn's is incurable. INCURABLE. That is an easy word to say, easy to write - but actually living with that knowledge is a whole other story. The idea that if you are in pain now, if you can't eat now, if you are becoming BFF's with the toilet, you still will be when you are making your way to the loo in a zimmer. Of course that's not necessarily true, many patients can go years without ever experiencing another symptom, but in the majority of cases people will be living with this disease until they are living no more. What a horrible thought. Depressing even. Get the general idea yet?
Many of the wonderful people I heard from also mentioned the more unspoken issues that go hand in bowel with Crohn's. Scars from surgery that have permanently changed their bodies, having to adapt to a colostomy for months/years/life, the affect the disease has on personality and how they are viewed by friends, family and the rest of the world amongst others.
A major worry was how having the disease would effect relationships, romantic or otherwise. People already with a partner; why would he/she want to hang around now? And the other side of the coin, singletons; who will want to become involved with me now? All issues surrounding relationships play on the mind, from the technical aspects of how to cope with being intimate with someone with a bag, to the potential 'burden' of having to live with someone who's sick and always will be.
Another issue with Crohn's can be the loneliness of spending time in hospital and being unsure what the future holds. Feeling you are on medication and it's just not having an effect on your symptoms can also bring your mood down to an all time low. Depressing eh?

So, on the positive side, all the Crohnie's I heard from could also thankfully share what has led to them feeling better. Common theories to help combat depression include, starting a hobby: something to allow your mind to focus on something else, doing regular exercise: healthy body - healthy mind?, and setting aside time to do things that are pleasure-able: release those happy hormones!
All valid I'm sure, but the main one everyone shared was how important it is to talk to someone. Anyone. Tell your friends and family how you are feeling. Don't assume they won't understand or will judge you - they may surprise you. And if you feel it's too hard or you don't want to 'burden' them there are always others out there willing to listen. There is a great website called which offers an amazing network of support from people all over the world.
People who are on the outside could be more aware of just how deeply depression can affect the lives of those they love. This is not something someone will 'snap out of' and cannot be 'cured' overnight - it's a disease, an illness that needs time, patience and understanding to overcome. Look for the possible signs; becoming withdrawn, reclusive, quiet or anxious. If you suspect someone you care about is struggling, just ask, make it clear you are there and will be if they need you- you never know the response you might get, or how much of an impact you might've just made on their life.

As for me, I think for now my loo roll is still half full. But if that changes I hope I'll have the confidence to tell someone I'm struggling. x

Wednesday, 11 January 2012

Crohn In 60 Seconds

Women are renowned for playing down illness. From the extreme to the common cold, we generally 'just get on with it'. I'm trying desperately not to be sexist and generalist here as I'm sure there are lots of men who are the same, I just haven't really come across any yet..;) (obviously my beloved is exempt from any such comments as I quite like being part of a couple..)
Take that recent terrible Winter-themed 'Boots' advert, with the two actresses who have to portray having colds. They bump into each other in the street, snuffling and speaking nasally as they relay lists of the mountain of jobs and chores they have to do whilst they sympathise with one another about their prospective husbands having a dose of man-flu. Poor guys :( They should think themselves lucky they have such Wonder women to look after them while they are poorly. *
I hate this advert on so many levels. It's not funny.
Neither of them pull off a convincing 'cold'.
If you have so much to do, get to it!! No time to stand around chatting sister!
They talk of their men as though they are incoherent children - is that attractive to you? A man wallowing in his own self pity, leaving you to cope with everything including the kitchen sink while you are also laden with the cold? No, didn't think so. File for divorce now and get out while you can.

Anyway, got slightly sidetracked there.. What I wanted to talk about was the general consensus to just carry on regardless. I've learned this from my mum, who in turn adopted this from my gran. My mum has never been one to tolerate illness. She is sympathetic and was devastated when I became sick, don't get me wrong, but on the whole she is from the school of just shake yourself down and get on with it.
She kept an operation to herself once, went into hospital, had procedure and not a soul knew until months later. Unbelievable.
There is a lot to be said for being brave. It's important to have a little bit of that in you, you may need it to steel yourself for whatever your body throws at you. There is a fine line though between being brave and coping with everything on your own. Essentially, I know that if I had no other choice and absolutely had to deal with this disease on my own I could cope. Wouldn't stop me from craving someone to talk to about it and for someone to give me a cuddle and say those magical words "Everything will be ok." - means a lot even when you probably don't believe it for a second.
I'm ashamed to admit I've lied to doctors and nurses about the extent of my illness. I think this has a lot to do with the way I've been brought up to look at sickness, combined with the loneliness of spending time in hospital. I lied I was ready to leave after my operation. I lied I'd managed to go to the toilet when I hadn't. I was desperate to get home I felt a little porkie didn't matter - it did matter - when I got home and went to the toilet I thought I was going to die the pain was so incredible. I'd left a place where I had all the medication and care I needed to get through that, to come home with a couple of Tramadol and Paracetamol and a frantic boyfriend who couldn't do anything but pace up and down outside the bathroom calling in 'Are you ok?' at regular intervals.
That was stupid. I've done the same thing during previous visits to the hospital too. I've said I'm feeling better than I am because I couldn't handle being in those places any longer than I had to. I would never do that again. I now know I have to be patient (excuse the pun), I have to remember it may take some time for the doctor to get to me or for the nurse to answer my buzzer, but they WILL see me and they WILL come, and eventually, they WILL make me feel better.
It took my wonderful consultant almost a year to finally establish there was a major issue as I just wouldn't talk to her - she had to prise everything out of me, which she later told me in no uncertain terms was incredibly irritating, she knew I was ill but couldn't prove it if I wouldn't speak up about my symptoms.
It's frustrating when you want to be better and want to imagine for a split second you are - deep down you know you are sick and that you are in exactly the right place - so try to remember at all times to listen to your gut. For Crohnie's there couldn't possibly be better advice ;)

* (If you live outside the UK sorry for this reference - Google it! In fact don't, it's awful).

Friday, 6 January 2012

"My rear is in uproar"

As it's coming up to the anniversary of my first (and hopefully last) Crohn's surgery, I thought I would look back at the year prior to my op to see what kind of difference it has made to my life and how I've adapted to living with Crohn's. Anniversary sounds a bit morbid, but i see it as a happy time, a time to celebrate how much has changed in the past 12months.
I've kept a diary since I was around 12 years old, and therefore I thought what better reference material to use to trace my year BC (Before Crohn's)? So as I've taken some quotes directly from my diary scrawlings, please forgive any rambling, I've tried to cut them short! I've used the period from March 2010 (when i started to notice symptoms) through to July 2010 (when I was at my worst and diagnosed with Crohn's) - this post will cover the first part of the year. It was quite strangely upsetting to read over my entries again as it's been easy to forget just how terrible a time it was, anyway here goes.

Monday 15th March 2010-
" cortisone injection in my knee today - absolutely awful- was painful and very strange sensation, uncomfortable and unpleasant, had to cling to the chair due to the pain and felt dizzy. Woke up having passed out and thrown up, I'd been held down as I was flaying around on the bed. Mortified.."

This was written when I started my treatment for my arthritis. This should've been the first real sign something was more seriously wrong, joint pain and arthritis is common in Crohn's patients and I'd suffered with since I was around 25. I still cringe thinking about the state I was in in that room.

Friday 16th April 2010-
"..keep getting this really weird pain in my chest and stomach (on left side) which feels like severe trapped wind- really sore though and seems to be worse every time I eat or drink something. Very annoying"

So I guess this is when it started for real - this pain went on for weeks before I visited the doctor, I was embarrassed I'd be turned away for having something minor like wind. Combination of stupidity and previous experiences of being shunned at the surgery.

Saturday 17th April 2010-
"..feeling crap again tonight- still got that weird pain- think it's heartburn - took a Gaviscon so will see if that helps.."

Aww! How cute am I?! Actually burst out laughing reading this, knowing what I know now it seems so naive to think popping a heartburn pill would make a jot of a difference! You have an incurable disease love, Gaviscon won't help you now!

Thursday 22nd April 2010-
"Managed to get up on time today - off to work with the same agonising spasms in my stomach, back and chest now- horrendous"

I was so tired that I'd started sleeping though my alarm and was rushing to get in on time. Was waking up through the night in pain that took hours to dissipate. Bags under my eyes like creepy old caves.

Tuesday 4th May 2010-
"felt sick on way home which led to an awful night. Queasy all evening - couldn't eat and has an absolutely HELLISH headache- then from 8ish was sick constantly till late, horrid, worst I've felt in a longtime, plus headache was unbearable"

Symptoms starting to worsen here- I was clearly in the grip of a flare-up but had no clue. Feel like I want to mop my own past fevered brow reading these. Horrible to recall, keep thinking how hard it must've been for my parents to see me like this, having no explanation and feeling helpless.

Friday 7th May 2010-
"..just had dinner and in lots of pain- feels like it was last month- can't see antibiotics doing the trick to be honest. Dreading work, so worried I'll need more time off.."

Starting to really stress here about what effect this was having on my work and life in general. I was off sick a lot and as I could never give a cast iron reason felt I was being doubted. Pushed myself to pull full shifts when I really should've been in hospital.

Friday 21st May 2010-
"not feeling too good again this morning, in fact mum had to put my shoes on for me as the pain was so bad I couldn't bend over. Walk to work=horrendous - took baby steps as in AGONY. Got to work (eventually) and pain so bad I was in tears"

I remember this day vividly, got sent home and straight to A&E. I remember having to walk so slowly as every step I took was killing me. No idea what I was thinking even attempting to go in, then again I also remember the stress of worrying I'd lose my job. At hospital the surgeon saw me;

"..he was rude and abrupt and told me they won't be ruling out surgery but I've now an abscess which will make operating more difficult, my appendix is the size of a pinkie nail and all my organs have moved to protect it, it would be hard to go in and would leave me in 'an awful mess'.."

This was when they thought I had appendicitis. I didn't. Thank-fully they didn't whip out my appendix and carried out more tests as I got taken into hospital more and more. This surgeon made me feel like I was wasting his time. I am the patient. I do not know what is wrong with me - that's why I am here. I'm the code, you are the code breaker - don't tell me I'm too complicated a combination to crack!
After this lovely consultation I was monitored for a few days, then given more drugs and sent home.

Sunday 6th June 2010-
"'s 11.15pm and I'm in total agony - stomach is so painful - in fact it's my stomach, ribs, chest, making it's way round my back too. AGONY. gets 10times worse at night when I try to relax - it's almost unbearable, makes me cry and can hardly breathe.."

Can again remember this quite vividly, the pain was so brutal I was sobbing myself to sleep. No painkillers could touch it and I felt there was nothing being done to help. Vicious circle of being punted in and out of hospital - hated the thought of being taken in again.

Friday 25th June 2010-
"..still feel like i need shot.. Aching all over. Doesn't help rushing to toilet CONSTANTLY - my rear is in up-roar and I look and feel like shit ALL THE TIME"

Obviously having an ugly-feeling-sorry-for-myself day here. The relentlessness of the disease can be such that you sometimes feel nothing goes right - and if something is going well some other thing has to go the other way to restore your natural feeling-like-crap balance.

Saturday 26th June 2010-
"..feel awful, terrible toilet trauma - my backside is in agony - bleeding and torn and sore- never gets a chance to heal. Constant chills too.."

Another one of the sexier side effects of Crohn's - it's obvious when you think about (but most people don't) - how can you go to the loo that many times a day without it having an effect on your rear?

Friday 2nd July 2010-
"..I'm in constant discomfort.."

Speaks for itself really.

Friday 23rd July 2010-
" it's most likely Crohn's - this'll be confirmed with a colonoscopy later. I've anaemia and low iron levels. J came to see me in the ward tonight. He said 'its hard to say goodbye but it's fu**ing horrible walking away from you, it's awful, unnatural' - I love him."

So girls and boys what have we learned from my year of woes?
Well I'd say, how important it is to trust your gut (literally in Crohn's cases) - if you think there is something wrong with your body you are probably right - you live in it after all.
Don't push yourself, listen when your body tells you to slow down, or else it'll stop you for good without giving you a say in the matter.
Don't sit back and let it happen to you - find out everything you can about your condition.
Oh and that I LOVE to use caps lock for emphasis. I REALLY DO.

Sunday, 1 January 2012

Hair Today, Crohn's Tomorrow

Amongst the many, MANY, lovely symptoms of Crohn's Disease, are two that I have found myself suffering from recently. Hair-loss and pain and swelling in the mouth.
When I was very ill last year, prior to my operation, I suffered from quite drastic hair-loss. I found it almost impossible to wash my hair without clumps of my locks coming out in my hands or clogging up the plug-hole.
Myself, my parents and my siblings have always had thick and kinky hair, so losing it seeing become so thin and feeble upset me quite a bit. The physical signs of my illness tended to affect me more - not because I'm particularly vain, but because it made it visible - I could no longer try to hide what was wrong from the rest of the world.
The hair-loss in Crohn's patients can be caused by many factors - steroids, having anaemia, being on azathioprine and just generally feeling unwell. All of which I was in the midst of last year.
My hair has been back to it's glossy best in the last few months following my surgery, making me and my plug-hole happier. However, during a flare-up - mild or otherwise - it tends to start all over again, and as yet I haven't found anything to help my cause. My Aunt got me some fancy hair products for my Christmas, shampoo and conditioners and special 'serums', the whole thing. They smell like I imagine God might. Heavenly. They leave me feeling like I've just stepped out of a salon, but still my hair eventually goes greasy, lank and thin no matter what miracle creams I slather onto my cranium. I suppose it's just something I'll have to get used to. It's just depressing to run your fingers through your hair and end up with enough left in your hand to use as a wig for a small child. Now there's an idea... Send your bald babies to me! (on second thoughts scrap that- I'm going a wee bit insane now).
So hair aside, (or should that be a-side-shed?), the other issue I wanted to talk about was 'oral Crohn's'. Stop giggling at the back because I said 'oral'! Grow UP!
As Crohn's is a disease which can effect every part of the body, from head to toe, it is very common to hear the disease can be found in the mouth too. Some of the most unpleasant issues range from very poor gums, to inflamed taste-buds, to ulcers and sores on the tongue, and everything else you can think of in-between. It's common to suffer from thrush on the tongue and shooting pains in the mouth, thankfully neither of which I've had the displeasure of encountering (as yet).
I suffer regularly from poor gums, numbness of the lips and pain in the mouth when I eat or drink. Sometimes my gums feel as though on fire and even the act of touching my teeth or gums with my tongue is incredibly painful.
Again all of the aforementioned symptoms could be put down to different things for different people. After all, each patient is unique and is affected by the disease in a slightly different way. But for me, medications and drugs only serve to accentuate the symptoms I already have - I just put it down to having Crohn's - which in itself is a rotten conclusion as it again boils down to there being sweet FA I can do about it.
But that's life, and I can cope with a sore mouth and crap hair as it's nothing really when you take a step back and look at the bigger picture. I have to appreciate and remember it will never be an easy ride but as I have so much to be thankful for I can live without looking like Rapunzel or one of the Osmonds.

It's a new day, it's a new year, and I'm feeling GOOD.
Happy New Year x