Today I have a blog take over from Victoria Marie of Colitis and Me who is here to tell you a little be about what it is like to be in her shoes.
When you're young you don't think about being sick, you think it only happens in later life. You go day to day working too hard, partying a bit much and shopping until you drop. I was enjoying a hectic life running from one job to the next, one party to the after party, one sleep over with the girls to the next. I was 21, beginning to travel to different places and starting to figure out who I was as a person and finding my feet. I was beginning to feel comfortable within my own skin, just setting out in life. Then all of a sudden all I had ever known came to a stop and everything I had ever known came crashing down around my ears. Something happened that meant never again would I be the person I was only just starting to get to know.
Almost five years ago now I got diagnosed with Ulcerative Colitis and it changed my entire world. All that you thought you knew about life – forget it. All those plans you have in your calender – clear them. All you thought you had planned out on the table – forget it all. Life is about to change forever, and no you get no say in it at all!!
You might have heard about Crohn's Disease or Ulcerative Colitis in the news recently so here is a little more about it and first hand experience of my journey with Ulcerative Colitis.
Ulcerative Colitis and Crohn's Disease mean there is an imbalance of bacteria in our guts/colons. In the average person there is ‘good bacteria' fighting off the ‘bad bacteria'. When it comes to those with the illness it means our good bacteria is working over time and trying to fight off an infection (the bad bacteria) which does not even exist. So instead of attacking the bad bacteria, it attacks the wall of our colon instead. This leads to inflammation and ulcers, cramps and pain.
Main symptoms just to get you up to speed are vomiting, Anemia, more trips to the loo, loss of appetite, weight-loss, swollen joints and many more. Not to mention all of the secondary symptoms from medications and problems caused by taking these long term. Alongside these there are things like stress, anxiety, Iron deficiency, depression etc, the list is endless! This results in extensive trial and error to find a medication to soothe the symptoms. Some unfortunate souls end up having to have serious invasive surgery to avoid blockages, ruptures and all sorts of complications. There are far too many now living without parts of their colons/intestines.
I started nipping back and forth from the bathroom, I didn't think anything more of it. I just assumed I had an upset stomach. I was too afraid and highly embarrassed to talk about it so I simply stuck my head in the sand and did nothing about it. BIG MISTAKE! I left it – I just ran back and forth to the bathroom all day and night. I threw up continuously, suffered numerous fevers and had no appetite though I was starving inside. I shoved my head under the duvet, where I spent every day too weak to move thinking I was dyeing. In the end I was 6 stone thin and bones when I EVENTUALLY checked myself into hospital. By then sleeping on pillows with one wedged between my knees became the norm just to try and find comfort. I was passed the point of dehydration and exhaustion when I rolled myself into A&E, I jammed my body between the chairs in the waiting room because my head felt like a boulder. I can't imagine how terrified my mother must have been to watch me deteriorate in such a horrible way and that is one of my biggest regrets. To have put her through so much torture as she watched day by day pleading with me to get checked out. I waited a whole year – what an idiot!! A whole year because I couldn't muster the courage to talk about it.
That was back in 2009 and since then life has never been the same. My illness has taken away everything I knew, I have been through the ringer and am not yet sure I have come out the other side. My illness is invisible to the unsuspecting public which is where a lot of frustration and lack of understanding comes from. Just because a person does not appear to be sick, please do not assume that all is well. “But you don't look sick” is often the sentence that gets banded around which is totally unhelpful.
I used to be care free I came and went as I chose. Now my days are filled with anxiety and worry. I can't make plans with friends or family for not want of letting them down. My illness is really unreliable so I often have to cancel plans, this causes much friction and frustration. I can spend weeks looking forward to an event/outing only for my tummy to play up the night before and ruin all my plans. Gone is the care free spirit who could pack her case and head in any direction she so chose. All of the simple pleasures I once enjoyed now seem so far out of reach. I struggle to hold down a job as employers are oblivious to the seriousness of these illnesses, where once was the hard working dependable staff member now is a person who feel a burden and out of place. Gone in the work-a-holic and in its place is the chronic fatigue young adult who I sometimes fail to recognize.
What do I wish people knew about my illness? That to date there is no cure, I have an illness that will forever be at my side. Though I may laugh and smile I am dealing with more than any young person should have to deal with. Imagine your intestines being covered in ulcers and having food pass by them each day of your life, painful right? Simply because you see me out in the public does not mean I am feeling great, sufferers tend to put on a brave performance and will rarely let you in on the true extent of how we are really feeling.
Some people react to their diagnosis with the attitude ‘This illness will not beat me' and they find some super human strength to scale mountains and achieve their every goal. But it is important too to remember that for some, simply fighting such a life altering illness can be hard enough without pushing themselves to the brink. Aside from those marathon runners and rising stars there are those who are confined to the house too worries, afraid and exhausted to do much more than get dressed in the mornings. Both Crohn's Disease and Ulcerative Colitis are unique to each individual person, there is no one size fits all and there is no manual on how to cope with IBD.
Despite all of this, underneath I am still the same emerging soul that I once was. Only now I am stronger in every way imaginable. I went for years without talking to a single other person who has Ulcerative Colitis or Crohn's Disease. Therefore back in December of 2013 I started a blog and ‘Colitis and ME' was born. I have never made a better decision in my life!! Creating my blog opened up a whole new world that I never knew existed. I began by talking about my journey with my illness and in flooded the messages from people who are going through the exact same troubles as I am. I can't begin to explain the amount of comfort and support that comes from talking to another individual who is in your shoes.
A few things you should know:
Both Ulcerative Colitis and Crohn's Disease are VERY serious illnesses which is always frustrating when the media play down the impact it can have on peoples lives.
Both Crohn's and Colitis fall into an umbrella known as Inflammatory Bowel Disease (IBD) which is commonly confused with (Irritable bowel syndrome) IBS.
There are over 5 million people world wide who suffer every single day. Unlike the flu it is an illness which is with us every second of every day and is involved in every choice we make. It is safe to say that Colitis has become my shadow try as I might to ignore it.
They are still unsure what the cause is as each case is unique to the individual.
Many have surgery to prevent worsening illness and in some cases life saving surgery but as of yet there is NO CURE.
There is a whole team working behind the scenes to try and get more awareness of this horrible disease. There are advocates running marathons, rowing the Atlantic, organizing charity balls and so forth all in a bid to raise much needed funds to put towards research. There is so much hope that one day we will all get the cure we all so desperately deserve, to prevent young children having to suffer and to give others a break from the relentlessness of Ulcerative Colitis and Crohn's Disease.
Many don't like to talk about it and I can whole heatedly understand why. To discuss running back and forth to the bathroom all day is not something people want to talk about. Those who suffer with Ulcerative Colitis and Crohn's Disease develop a super human strength, they battle on and take every knock after knock. These illnesses are very unpredictable and it is time they were taken seriously. What I would like more than anything is for people to be educated about both Ulcerative Colitis and Crohn's Disease, so that we can live in a world which has a little more kindness and understanding to those already suffering a great deal at the hands of our illness without having to deal with the burden of judgement.
Take a walk in my shoes, I guarantee it will change you in every way imaginable.
With love, Victoria Marie of ‘Colitis and ME'
To hear more please join me over on my blog www.colitisandme.blogspot.co.uk where you can contact me from there. I look forward to hearing from you all x