For our fourth annual Pin Up Picnic in the Park we shall be running our charity raffle.
It's the early stages yet but we already have some incredibly generous donations from Sarah's Doo Wop Doo's, Le Keux Cosmetics, Spex Pistols and Heart of Haute, hopefully that is just the beginning of a fabulous bundle of prizes to give away in exchange for us raising as much as we can for Crohns and Colitis UK.
I myself have Crohns disease (Charlotte) and have been diagnosed almost 16 years now. Crohns is an incurable disease and one day I hope that will change, along with many other sufferers out there. With raising as much as we can to donate to the charity we will be funding new research, new drugs and new ways of understanding how and why it occurs.
As I've chosen a disease very close to my heart and part of my daily life I thought I would share with you my Crohns disease story and if you have one please feel free to leave a comment for us below; What does and doesn't work for you? What medicine or herbal remedies you've tried? I am very open to hearing everyone's thoughts and opinions who are affected by Crohns or Colitis as I believe both are very similar in certain ways.
I have never truly openly wrote about my experience with Crohns or fully talked about it but as we're raising money for the disease I thought I would take the chance to raise some awareness and explain how my journey has been from diagnoses to present day. So here goes.......
Back in 2003 I was walking to school like every other day however this time I almost collapsed on the way there. As soon as we reached the school gates my friend took me straight to the nurses office who noticed how sickly and tired I looked and called my au pair who came to collect me. This was the first time anyone realise something was very wrong.
When I got back to my au pairs house, she told me to go upstairs and got to bed to sleep. She came up to bring me a glass of water and I was getting changed, this was always something I felt self conscious about as I knew I was painfully thin. She noticed too.
My dad worked away all week and was home for weekend but my au pair had passed on concerns and he came home. It seems like a whirlwind from there as I was then booked in for a consultation with a doctor who noticed too at the age of 13 I was 4' 9" and weighed only 3 and a half stone.
I looked incredibly ill, I was weak, my hair was thinning and falling out and I had sores all over my body.
I had known of course I was ill for a long time but didn't want to cause a fuss, its difficult when you don't want to disrupt other peoples lives and I felt like it would sort itself out.
The first thought of course, was that I had an eating disorder. I had been hiding food, throwing my lunches away at school and eating as little as possible. But this wasn't because I was worried of putting on weight, this was because food caused me pain. My stomach would constantly hurt, it would be excruciating and would cause me to double up.
I know what you're thinking, who feels like that and doesn't see a doctor. After I was diagnose in 2003 they suggested there was a high chance I had actually had it for 3 years already.
I never told anyone because I was 13, I was a child. My dad worked incredibly hard and we were a single parent family, I didn't want to bring up some nonsense when I knew he had to work away all week and cause any issues (side note: my dad is the most incredible person in the whole world he would have never had an issue, it was all in my head - I talk about my dad a lot in old burlesque interviews in the past)
From the day I collapsed I didn't go back to school for 6 months, aside from one brief day I went in as my consultant said I should be fine to go back and I collapsed again from exhaustion and being too weak to hold up my own body.
It was a long 6 months, my dad had time off work, my brother felt a bit neglected, family spent most their time crying and somehow I was as tough as anything. If people cried around me I asked them to leave, I believed I could beat this and it wasn't going to beat me.
I spent the majority of those 6 months bed bound. Walking was tricky, even getting up to make the short walk to the bathroom felt like a mammoth task and would result in me having to lie on the bathroom floor for 20 minutes to half an hour. I was painfully frail, my skin looked translucent, my hair was so thin and my body covered in bed sores. I couldn't stand anything around my neck it made me feel sick, so even in freezing cold winter I refused to wear a coat or scarf as the sensation was horrid. I had to wear off the shoulder tops and mainly these long black skirts (I had like three of them) that were a size 4 that I had all taken in because nothing fit.
These were very very low times and looking back it's hard to think I got down so low and didn't say something sooner.
Thanks to Professor Booth and all the amazing nurses at The Children's Hospital that began my journey to getting, feeling and looking 100 times better. I was an out patient at Birmingham children's for years, we went on a Friday for check ups, bloods etc and to check my weight. At the time there weren't any miracle drugs or a quick fix you could either go on to steroids or try a liquid diet of Clinutren.
I was adamant I wasn't going to take steroids and opted for the liquid diet. I spent 3 months on just 5 - 6 clinutren a day and aside from that I could have foxes glacia mints, a glass of Fanta or Sprite and that was your lot!
I found it incredibly difficult, the first time I had to drink one of the clinutren (which is about the size of a Ribena carton) it took me an hour. The taste was interesting to get used to, being watched while I drank was off putting but I did it.
After 3 months on my liquid diet I felt better, I started to go back slowly on to solid food and even began attending school again. Of course we had to carry on check ups or the next three years but everything seemed to be going well.
The thing is of course with Crohns disease, it never truly goes away. It can even disappear from it original site and re occur somewhere else along the dietary tract and when it does come back again it's known as a flare up.
I was incredibly fortunate to have 13 years Crohns symptoms free. No pain when I ate, no problems with tiredness, fatigue, drowsiness or loosing weight.
Then in 2014 I started to notice I was having awful stomach pains creeping in. Within the space of a few weeks I dropped from a large size 12 almost 14 down to a size 8 - it literally fell off.
Working in retail at the time the ladies I worked with expressed jealousy of how easy it was for me to loose weight, I understand it was all meant to be taken light heartedly but in reality it's a serious issue for me because I can't take any nutrients from food and things go down hill very fast.
After many many appointments with my local doctors, who didn't seem to believe me I finally got a referral to the Queen Elizabeth (anyone who has watched The Surgeons programme on the BBC will know how incredible the doctors are at the QE) also incidentally I was born at the QE (the old building still on the site) so it felt almost kismet for me.
We started with a liquid diet again and going for constant check ups, on my weight, my bloods, my stool and MRI scans as well as a colonoscopy (not the nicest of things but necessary) sadly as it's my bowl that is affected (small intestine) and Crohns is usually a swelling of the infected area I can no longer have colonoscopies preformed.
It took almost 4 years of constant appointments, moving from liquid diet to a drug called azathioprine to finally, finally after years of asking! be put on Humira. This is a biological drug that can be administered and taken at home. Alongside my Humira I still take my azathioprine and all my supplements as I have found one drug affects another part of what my body can absorb, ie. now I have a vitamin D deficiency, Iron deficiency and low calcium. But in order to have my crohns managed sadly something else generally has to suffer.
After starting humira I felt incredible, utter euphoria no longer did I have pain, constant pain and even worse when I ate, not knowing when a flare up would happen, where I am yet again bed bound and constantly being sick, finally the humira leveled everything out.
The only issue I have found since starting my new medication is that I have put on weight, more than I would like. Due to my medication, due to what I can eat and what I have to avoid it's just what happens but for me of course it matters. It does make me feel down sometimes that I'm not as thin as I was and not the same shape. But that's a personal battle. I know I'd never want to get down to being sickly thin again but I do have my days where my weight was steady and held strong to have a 26" waist - but of course my health comes first!
I do hope some people out there also suffering can see similarities in what we all go through, if anyone would like to talk about their experiences I'm always here. And obviously there is a fair bit missed out because I could talk forever about times spent crying on the phone to doctors secretary's, answer machines and all the other bits.
This disease is so important to raise awareness for as over 115,000 people in the UK alone are diagnosed with Crohns.
It's a difficult disease as when your feeling okay or just not at your worse it's quiet the invisible disease. I think people can feel like your putting it on when you call in sick or you aren't as bad as you make out you are but believe me, as a sufferer I hide a lot of how I feel and just get on with it. so when I do mention feeling bad, it's hit the top of what I can bare.
Written by BB