World IBD Day 2016

My first 'World IBD day' being an IBD sufferer and to be honest, the first world IBD day I've ever known about. Which is crazy really considering how big irritable bowel disease is and how largely it affects so many people. Before I was diagnosed with Crohns Disease, I didn't really know what it was and with poor knowledge comes ignorance, so it is so important to spread awareness of IBD and to get people talking and learning about this horrible disease.

IBD stands for Inflammatory Bowel Disease which people often confuse with IBS (Irritable Bowel Syndrome) but the two are very different. IBD means an actual infection and disease of the bowel where as IBS is just bowel irritation, no infection or disease. Although IBS is still not nice for people, it can mainly be controlled through diet and  when people can work out there food intolerances and what upsets them, they can often get on top of it and control their symptoms.
For IBD sufferers this isn't so simple. The two most common diseases that come under the IBD umbrella are Crohns Disease and Ulcerative Colitis. Whilst the cause of IBD is still not determined, it is believed to be caused by genetics and cases show that you are more likely to develop IBD if you have a close relative with the condition. This means that it isn't just caused by eating something dodgy, it is a legitimate disease. Also there is evidence to show IBD can be caused by a disruption to the immune system and the intestinal inflammation can be caused by the immune system attacking healthy tissue inside the intestine whilst fighting off a bug or virus. There are so many theories and explanations doctors have investigated to discover the cause of IBD but there is no known proof as such. Some theorists believe it is caused by people being on antibiotics often as a child, and some have theories it was caused by diseased cows that were buried in the ground and not cremated. You can spend just a few minutes on Google and find thousands of theories and ideas about IBD causes!

Whilst there are many theories and investigations, there is still no known cause and there is no known cure. Being diagnosed with a disease and having to come to terms with there being no cure is an incredibly hard thing to get your head around and if I'm honest I still don't think I have done so yet. Knowing that your life has completely been turned upside down and will never be the same is going to be hard at any age, but at the age of 21 it seemed so much harder. I was faced with a lifetime of hospital appointments, medication, drug trials, blood tests, injections, colonoscopies, possible surgeries and a highly increased risk of colon cancer. So all what I had thought of it being just an upset stomach, was so wrong. The things IBD sufferers have to go through on a day to day basis is crazy, and all the things they do just to try and live a 'normal' life. Just because someone may present themselves well and the look 'fine' that often isn't the case. Like everything in life, everyone is fighting their own battles and we often aren't aware of those. That's why awareness for IBD is so crucially important. It is estimated that 620,000 people in the UK alone are living with IBD. Living with no cure. Living with this crippling disease for the rest of their life, and quite frankly this isn't good enough. We need to get people talking and thinking and aware of IBD and how much it affects people and how many people it affects. We need to find a cure, and I believe we can do that together.

 

 

 

Give an IBD hero a hug today and show them your support.

#WorldIBDDay2016

 

XOXO Crohnie Girl

 

PS. If you want to show your support even more and get involved with the big charity fund raiser this year, then sign up to the Crohns & Colitis Big Walk. I am walking 10k in London on the 4th June. Sign up here - https://www.crohnsandcolitis.org.uk/get-involved/fundraising/filter/Walks

Feeling 22

April 23rd 2016 - My first birthday as 'Crohnie Girl'. Quite a weird thought really to think that as well as being a year older, I am now an owner of a chronic illness. An awful lot can happen in a year, and I think it is sometimes important to look back, but only to see how far you have come. Even though I seem to get on well with my illness on a daily basis and not let it stop me from living my life, I still don't feel I am at the stage of acceptance. I get very frustrated when I feel it's presence and it is easy to slip back in to the thoughts and feelings I had earlier on in my illness. I still grieve the life I used to live, and especially at this time of year when I think back to it being my 21st. How much fun I had, how I could do whatever I wanted but now things are so different... But different doesn't necessarily mean bad, and a positive attitude can turn things around. Now I like to set myself little challenges of different, fun things I can do and one thing to think of was birthday celebrations.

My mum had the task of making me a gluten free, dairy free birthday cake and I have to say it was delicious!! And everyone in my office agreed

For my birthday, I would usually go out with a big group and head to a London club for a night filled with vodka, dancing and usually Macdonalds chicken nuggets! But I can't really do this now, without being shattered for a good week and being able to hold more than one drink and I definitely can't eat chicken nuggets (crying face!). So I wanted to think of something equally fun and special that I could do and enjoy. I've always loved dressing up and going to nice places so I thought I could go for afternoon tea in London with my girlfriends and began researching places to go. Afternoon tea was a perfect idea apart from two issues - I am gluten & dairy intolerant - so cakes and sandwiches could be a problem! However, I came across the 'Pret-a-Portea' afternoon tea at the Berkley London and they advertised catering to dietary requirements so I got in contact to see what they could do. They offered me the private dining room as there was a big group of us, and said they could make all my food gluten and dairy free which sounded amazing to me! I booked it straight away and couldn't wait.

The day came and I got all dressed up and headed to London with my friends feeling excited to celebrate. The staff at the Berkley were lovely, and had personalised our menus and even made cute name places which was a really special touch. It was so nice to have everything done and not worry about being difficult, or fussy and just enjoy the day. I absolutely loved it. People say the birthday after your 21st is never going to be as good, but I can honestly say it was one of the best birthdays I have had and my friends and family made it. When you go through a tough time, you really get to know who your true friends are. The good friends will step up to the mark and be there for you. The ones that don't, just show their true colours and as hurtful and upsetting as that can be, it is their problem (see The Third Party!)

So turning 22 was a success, and I am starting to feel like a real life grown up! I think last year was a bit of a funny one for me, as half of it was spent being unwell, so this year I am going to focus on total happiness and letting nothing pass me by. If I want something I am going to go for it and not let Crohns, or anything else for that matter hold me back. I am going to focus on doing everything I want to do and be happy doing it. I may be feeling 22, but my Crohns isn't even 1! So I'll be having to have another 'birthday' for that on the 23rd June. I can't believe it has been a year... but then again, look how far I have come in that year, and I'm going to keep going.

XOXO Crohnie Girl