Every 30 minutes someone in the UK is diagnosed with Crohn's Disease or Ulcerative Colitis, 300,000 people in the UK are currently living with the IBD; that is 1 in every 210 people living with a life-long, incurable, unpredictable and life changing disease. These are pretty staggering figures for a group of diseases with very little coverage, knowledge or awareness. This generally comes down to the fact that it's an 'embarrassing' and largely hidden disease, people are scared to talk about it for fear of others reaction.
Just a few months ago BBC South Today asked views to 'look away now if you're eating your dinner' before a feature including ostomy bags. No graphic imagery was shown, this warning was cast at the mention of the subject. The Archers on Radio 4 also has a running story line where a particularly nasty character has been left with an ostomy. It is mentioned nearly every week, each time with a tone of negativity, horror or disgust. Those following & commenting on Twitter, actively show their pleasure in seeing such an awful man 'getting what he deserves' in the form of a colostomy. I am sure other medical topics such as cancer, stroke, limb amputation or MS would never be used in such a way, so why Ostomy bags?
This kind of public stance, only compounds many peoples incorrect and ignorant perception of those living with IBD or bags.
Of course, it isn't all awful. IBD and Ostomy's are being discussed much more than they ever used to be, and I believe it is all generally going in the right direction to both raising awareness and finding a cure. However, a huge amount more is still left to be done. Awareness needs to be generated, sufferers should not be made to feel isolated, embarrassed or frightened, stigma needs to removed, IBD should no longer be a taboo subject.
This past year my bowel has largely been on it's best behaviour. I am now nearing 3 years of living with Margaret, my ileostomy, and symptoms have settled more than I could have ever imagined. My quality of life has been improved immeasurably and I've grown to accept the little pouch attached to my tummy. Of course, I have my down moments but these are much fewer than they ever used to be. So whilst my bowel symptoms have been on the up, I have had to deal with a rather nasty side of Crohn's disease, I barely knew existed. Being diagnosed with Axial Enteropathic Arthritis has not been easy and has annoyingly gotten in the way of lots of things in the past 12 months. I won't bore you again with the (very) long story, you can always read back on the last few posts for that, but it certainly hasn't been smooth sailing in the old knee department. Fatigue is also something that effects my life every day and anxiety likes to rear it's ugly head too. It hasn't been the worst year for having Crohn's but it's certainly not been the easiest.
Photo credit @spoiltbytes
I've often thought, if I could snap my fingers, would I get rid of having Crohn's Disease? And of course, I would, it would be great not to have to deal with it on a daily basis. But in many ways, I can't imagine my life without it. Aside from being completely used to the daily medication, giving myself injections, having blood tests & Dr's appointments every few months & dealing with the constantly changing symptoms. It has also, without a doubt, changed me as a person and I really don't know what I would be like or how my life would be, had I never been diagnosed.
IBD has made me strong and resilient, I have learnt to let go of the minor, insignificant 'small stuff' that used to bother me and to not let other people and their actions get me down. I'm much more aware of who and what matters & massively appreciate the amazing people around me and the times when I'm able to live life normally, I try not too take these things for granted. IBD has made me fiercely determined; to succeed and to do everything I want to do. When life knocks me down, I've learnt to bounce right back up again. All of these traits and skills I've developed largely from having the disease. Crohn's has taken a lot away and made life pretty damn hard but it has given me a lot too.
So here is to another year of IBD. Talking about it, raising awareness and hopefully getting one step closer to finding a cure.
Happy IBD Day guys!
XXX
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