So as some as you will be aware of, and as some of you won’t be, it is World IBD Day tomorrow!
It is so vital and important that we all do our bit to raise awareness, even if you yourself do not have IBD but know somebody who does; every little ounce of spreading awareness and fundraising helps.
Personally, I have seen IBD become more publicised over the past few months which is really refreshing and positive to see, but we still have a long way to go. It is vital that more people realise just how serious any form of Inflammatory Bowel Disease, whether it be Crohn’s Disease or Ulcerative Colitis for example, and that tragically it can take lives and majorly affect lives.
For those who have been newly diagnosed, have been diagnosed for a number of years, or even for those who haven’t yet had a diagnosis, IBD can be an extremely difficult, excrutiating and exhausting disease to deal with. Even the simplest of tasks can become extremely difficult and any aspects of having a social life can also disappear considerably, if not completely. It can be a very devastating disease for many and many of the things that we may take for granted without IBD such as having an appetite and having energy are some of the things those with IBD do not have.
Because of my Crohn’s Disease, I have had the pleasure of being introduced to many inspirational people who amaze me everyday with their positive attitudes and how they fight and refuse to be beaten. Even those who struggle still continue to inspire me as they do not give up regardless. Personally, I still get my down days after having ileostomy surgery and for having Crohn’s, but it has made me stronger and it has made me who I am… Without my operation I would not be here. That’s what I remind myself when things get tough and I struggle to see the light. In an ideal world, nobody would want their anatomy changing and having to pass waste through their stomachs, but we have these operations to help us, not hinder us. Some operations save us, just like mine and it is important that people realise what a huge thing that is, whether we had a choice to have the operations or not. It may seem quite obvious to some reading this, but even myself, I had the choice between having my life saved or losing my life. Some people might say “well, that’s not exactly a choice is it?”, well let me tell you, that is the biggest choice I have ever had to make, and at the time and the many years before my surgery, I did not have the energy to continue anymore or the strength to put up with the severe pain and misery and every day being an extreme drag. It is also common for people to get depression with IBD. To find that strength to undergo such an operation and continue fighting in an even weaker position took every piece of me that I had left and meant I had to create and find the strength.
IBD doesn’t just affect the person that has it as well, it affects those in their lives and those around us and can be just as devastating for them in other ways regardless of whether they feel that person’s pain or suffering. It is important that those who know people with IBD have patience and find out all that they can about the disease to help those who have it who are close to them cope. It isn’t just something that can come on one day and pass the next, and it isn’t something that can be simply fixed by medication or surgery. Even after having surgery, people do suffer from the other symptoms of it even if the abdominal symptoms aren’t present, such as joint aches and fatigue, or finding it hard to put on weight, as I do.
Tragically, and one of the most important points to remember from this post, is that people do lose their lives from IBD. It is a cruel disease which even if you have the strength mentally, for some people their inspiring journeys are tragically cut short through no control of their own. I know people who have been cruelly taken by IBD and they were some of the nicest, inspirational and kindest people I have ever had the pleasure of having in my life. My Uncle passed away from complications related to IBD, and he is my inspiration every single day, especially when I struggle. He had a heart of gold and never complained, no matter what health problems or life problems he faced, and always found the strength to smile and help others and live life to the full as best as he could. I fight for him and always will, and I will take steps such as these to spread awareness and find that cure that he deserves, just like many others do in this world whether still with us or not.
So what can you do to help raise awareness and raise money?
- At the top of the page there is a simple way to donate money by text, even £3 can make such a difference if we all group together and donate.
- Take part in the #GetYourBellyOut campaign on Twitter! You don’t have to have a stoma or IBD, it’s all about raising awareness and taking part for those who do! I love this campaign, it’s had such good feedback.
- Help to share IBD stories on social networking sites such as Facebook and Twitter if you see them.
- Make an IBD story sign and take a photo/selfie with it and upload it to the internet to spread awareness such as Facebook, or your blog.
- Get relatives and friends involved! People who I know I have asked to wear ileostomy bags for World IBD Day so they can have an insight into how it feels for me and many others to wear one on a daily basis.
- Wear purple or an IBD/Crohn’s Colitis UK t-shirt if you have one.
- Start writing your own blog if you’d like to and share the link so others can read into your experiences.
- Talk about it & let people ask questions.
Obviously, with more time to plan in advance, there are a lot more things you can do, but those are some last minute ideas.
Here is my Crohn’s Colitis short story card for the MyCCUKStory hashtag that I did on Twitter and Facebook and here also is my brother wearing a bag and getting a feel of how it is for me to have to wear one on a day to day basis. So thankful for his support alone as well as those close to me.
Go ahead & raise awareness & funds & donate if you can for World IBD Day tomorrow everyone! 🙂
Here’s to you all, stay strong! ❤
Until next time,