This week (1st – 7th December, 2014) marks Crohn’s and Colitis Awareness Week, and as a local volunteer for the Crohn’s and Colitis UK (CCUK) charity I wanted to post up quickly about how you can follow the events this week, get more information about Crohn’s Disease and colitis, and engage with the charity and sufferers of these ‘hidden’ diseases.
Crohn’s Disease and colitis are collectively known as inflammatory bowel disease (IBD). Crohn’s can affect the entire digestive system from mouth to anus, while colitis only affects the large intestine. Around 300,000 people in the UK and 1.6.million in the USA have been diagnosed with some form of IBD; around 0.5% of the population, although diagnosis rates are on the increase in the UK and many people probably suffer from some form of IBD who have never been diagnosed.
IBD is an autoimmune disease and chronic. Symptoms include pain, diarrhea, bleeding, tiredness, weight loss and ulcerations, and are usually accompanied by other problems such as skin problems and arthritis. No cure exists for either Crohn’s or colitis, although drug treatments are available which put sufferers into remission. Some people require surgery to remove parts of their bowels because they are too diseased to function properly, leaving many with an external pouch for their excrement.
There’s also nice looking infographic about IBD here: https://www.behance.net/gallery/17804301/Crohns-Disease-An-Infographic
Obviously, IBD causes great anxiety, embarrassment and stress in addition to their physical symptoms, but most of their friends, family, colleagues and acquaintances will be unaware of all these problems, hence it is a ‘hidden’ disease. And hence the need to raise awareness.
I suffer from Crohn’s Disease, and have been on an immunosuppressant drug for nearly a year called infliximab. It’s working pretty well, but carries serious (but low) risks which require me to be constantly pricked with a needle for blood tests and the occasional indignity of trying to get poo into a 20 mL vial with a tiny spatula.
In the summer of this year I was asked to join the organising team of a local group of CCUK volunteers to look after their social media presence. I’ll be doing my best to keep on top of things this week on Facebook and Twitter. If you’d like to follow what we do, get involved in supporting the charity and IBD sufferers, or just want to know more, then please visit, follow, or tweet the following:
- Information about IBD
- CCUK – Awareness Week page
- Join CCUK
- CCUK Edinburgh Group (the page I manage!)
- Crohn’s and Colitis Foundation of America
- Get Your Belly Out (brilliant grass roots awareness campaign, here’s mine)
- Crohn’s and Colitis Awareness Week Facebook Events Page
- CCUK Facebook page
- CCUK Edinburgh Group page
- Crohn’s and Colitis Foundation of America Facebook page
- Get Your Belly Out
- Hashtags: #BeCrohnsAndColitisAware #GetYourBellyOut (UK) #IBDselfie #IBDAwareness (USA)
Thank you for reading, understanding and supporting. Friday is “dress in purple” day to support the awareness campaign, so maybe see some of you at work, on Facebook or Twitter resplendent in purple. Enjoy your week!