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Why We're Raising Awareness on World IBD Day

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Awareness days… There are so many of them, but do they actually achieve anything?

“Why is World IBD Day important to you?” we asked a few members of the #IBDSuperHeroes group:

Sahara Fleetwood-Beresford:

Does it really raise awareness? Should we bother making the effort?

Yes! If just one person sits up and takes notice of the awareness posts, then it has raised awareness. If that one person learned one IBD symptom, that could be the difference between a long hard struggle for diagnosis and having the knowledge to say, “Actually, this is worth investigating.” It may help them personally or it may help someone they know, if that person mentions that symptom in future. It could make a difference to just one person. One person is enough. One person is worth it!

Do awareness days only matter to those that have the condition?

No, I can bet the day also matters to the people who care about those with the condition. The people who have had to watch them struggle, knowing there is nothing they can do. It’s tough for them too, and it gives them an opportunity to show their support.

Does raising awareness fall on people who aren’t listening?

In all honesty, often it will, but there are those willing to listen, and as I said above, just one person listening could be enough to make a difference.

That’s what awareness days should be about. Just the tiniest possibility that you could make a difference should be enough. The tiniest possibility that you could ease someone’s struggle.

Our #IBDSuperHeroes are our biggest asset. They fight for what they believe in, as all true heroes should. It’s not about complaining and telling the world what a hard time we’ve had, but a time for pride, and sometimes merely having survived is enough!

Corinne Vanessa Burns:

World IBD Day is extremely important to me. It’s a day on which we can all get together and spread awareness of IBD, or inflammatory bowel diseases: Crohn’s disease and ulcerative colitis.

There’s a huge proportion of people in the UK and across the world living with these potentially life-threatening conditions. Unfortunately not many people like to talk about poo… There, I said it! Wasn’t so bad, was it? We all do it! Yet the subject comes with massive taboo.

I have a J-pouch due to my struggles with ulcerative colitis, and at the time of my surgery in 2000, I knew nothing about these diseases. It was a very scary time indeed.

The result of nobody wanting to talk about toilet habits means that people struggling with these diseases with symptoms such as diarrhea, weight loss, bleeding, severe pain and extreme fatigue are left feeling isolated and embarrassed and not getting the support they need. We need to speak out!

Not only will talking about IBD on World IBD Day help spread awareness, but it is also an opportunity to raise some money for Cure Crohn’s and Colitis who donate 100 percent of the money donated to fund much-needed medical research to find a cure for inflammatory bowel disease.

Lizzie Smith (she chose the poetry route instead):

World IBD day is a celebration of life’s creation.
A creation of unique individuals united to become visible
A recognition of all IBDSuperHero conditions
From admissions to remission, flares and healthcare, to surviving and thriving
Standing united, we’re breaking the silence and no longer frightened
We are not alone and for that one day in time
We fight to raise awareness and show we are fearless
So no need to grab your cape or be afraid
We are all IBDSuperheroes.
Wear purple and show the world our IBD is universal
19th May 2017 let’s show them we can be seen.

Jenna Bahara:

I was 9 years old when I first became very selective about my food. This was blamed on eating disorders which is actually a pretty common story. I was losing a lot of weight and was fatigued all of the time. My parents force-fed me and regularly told me off.

I began losing blood but was too afraid to tell anyone as I already felt like such an inconvenience. I started throwing away school lunch, knowing if I were found out I’d be grounded, further isolating me from friends, but I needed so badly to avoid the cramps and the pain.

If only I’d realized the relevance of losing weight and the lack of appetite, then maybe I wouldn’t have feared speaking out. If only the doctor had taken time to do some tests or taken me seriously when I said my tummy didn’t just hurt, it was like I’d swallowed a thousand nails and someone was hammering them in. Maybe I could have avoided lifesaving surgery and thousands of emergency visits and insurmountable pain and stress.

My mother took me to a local hospital after I rushed to the bathroom after eating. She thought I hadn’t flushed the toilet because I’d been sick, but instead she saw the pints of blood I was losing. I was very thin, and the blood loss wasn’t normal. Eventually, someone listened. That day, she was told I had 30 minutes left to live as my bowel had so badly disintegrated and gotten stuck to my other organs. They suspected bowel cancer. I was taken to a children’s hospital where I was put in a cancer ward and underwent a major, 10-hour surgery. My bowel was now on the outside of my body, I had major scarring and I was left pooping into a bag attached to my stomach! I had an ileostomy, which was due to my new diagnosis of ulcerative colitis (not cancer). I still had to have radio therapy and was fed through a tube. I had to learn how to not only eat again, but walk! I had to accept that I was now living life with a disability. More surgery, lifetime medication, fatigue, insomnia, joint pain and arthritis were all in the cards for my future.

IBD doesn’t just affect the bowel, it affects the whole body and mind. There’s no cure and there’s definitely not enough awareness. That’s why awareness days like World IBD Day are important. To give people better knowledge so they don’t have the kind of diagnosis I did. If you experience any of the above symptoms, please consult your GP! Don’t just accept regular meds and being brushed off. Fight to get tested! It may feel like an inconvenience at the time but it may also stop IBD from being an inconvenience years later.

We raise awareness of IBD so that people know the signs and might be able to get diagnosed early, which will hopefully save people a lot of pain and a long struggle!

Happy World IBD Day to all!

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Originally published: May 15, 2017
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