stoma ileostomy photo shoot woman beauty

Why we need to keep talking about IBD

What an amazing year 2014 was for raising awareness of Inflammatory Bowel Disease!! When I was diagnosed with Ulcerative Colitis in 2004, I had never heard of the disease and through the years, so many people I spoke to were completely oblivious to it too.

In 2013, I had a subtotal colectomy and ileostomy formed.  I did what any right minded, modern person does and googled the hell out of it.  I found some great medical advice but very few blogs about IBD.  I talk often about the amazing Inflamed and Untamed, who I fell a bit in love with, and who was the inspiration for me starting this blog, but I could find hardly anything in the UK.

Yet in the past 18 months, there seems to have been a huge uptake in IBD blogs, people sharing their personal experiences of chronic illness of Crohns and Colitis and I think it is bloody WONDERFUL!  It is just fantastic that people facing a life with IBD now have so much information at their fingertips now.  The whole reason I started this blog was to share my stories and experiences in the hope of helping others.

I recently wrote about some of my favourite IBD bloggers, including Thaila Skye and Colitis Ninja, and there are so many people currently working SO HARD to raise awareness, raise money and working to #stoppoobeingtaboo – I raise a glass to every single blogger and campaigner.  We are doing something to make a difference and should be very proud of ourselves!

crohns and colitis awareness week

 

So things are good, right? Yes, of course! But they can be SO MUCH BETTER, and we need to all keep talking about Inflammatory Bowel Disease.

Why? Because the more we talk, the more we #stoppoobeingtaboo, the more money we raise for support and research, the better life will be for the 300,000 people in the UK and the 5 MILLION people worldwide living with Crohns and Ulcerative Colitis.

Inflammatory Bowel Disease is not just a poo disease where you get a touch of diarrhoea…

Firstly, there is NO CURE, though there may be periods of remission, these are illnesses that are with sufferers for life.  The medications taken to control the disease control the inflammation include antibiotics, anti-inflammatories, steroids and immunosuppressants.  But the side effects from these meds include nausea, vomiting, heartburn, night sweats, insomnia, hyperactivity, high blood pressure and stunted growth in children. Patients on immunosuppressants are at risk of developing lymphoma, tuberculosis, kidney and liver damage, anaphylaxis, seizures, and serious or fatal infections.

It is also not just about the bowels, IBD can cause issues in other parts of the body, including inflammation of the inner part of the eye, mouth sores, arthritis, osteoporosis, gallstones, kidney stones, skin rashes and ulcerations, blood clots, anemia and several neurological conditions, including seizures, stroke, myopathy, headaches and depression.

People with IBD have an increased risk of mental health issues, from depression to anxiety and stress, patients have to deal with self esteem and body confidence issues.  Fatigue can also be a huge issue which affects every part of patients lives.

20 to 45 % of people with ulcerative colitis and up to 75 % of people with Crohn’s disease will eventually require surgery in the form of colectomy (removal of the large intestine) ostomies, jpouch surgery and more.  This is on top of the multiple hospital visits that IBD patients will often need to deal with the often very painful disease.

 

fatigue and ulcerative colitis crohns ibd

 

Crohns and Colitis UK is a nationwide charity whose mission is to work with all those affected by Inflamatory Bowel Disease, in particular Crohns Disease and Ulcerative Colitis, to achieve a better quality of life, improve services, and ultimately find a cure.  They raise awareness, provide information and support, fund crucial research, and campaign and speak up for change.

I am a huge fan of Crohns and Colitis UK, I’m part of the Organisation Team for the South Yorkshire group and raise money for the charity on my Just Giving page (always open for any spare change you would like to throw their way!)

So please, keep talking, keep reading, keep sharing… IBD is not going away and the more we talk, the easier life is for everyone who has Crohns or Colitis.

Thanks for reading.  Please go take a look at my Facebook page and like, my twitter feed and follow and my instagram and follow there!

Let’s #stoppoobeingtaboo and never stop talking about IBD.

Sam xx

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7 thoughts on “Why we need to keep talking about IBD

  1. Hi Sam,

    Wow, what a privilege it has been to read your blog! I am amazed and impressed with the battle you’ve had, and inspired by your journey. I am so happy that you turned your negative experiences into a blog that aims to help others – this is what blogging should be all about. My brother has recently been diagnosed with this, and we are all so confused as to what it actually is. He is 19, at university, and very frightened. I am going to tell him about your blog, and you have a new reader in me too, because I believe in your content, I believe in you and I am honoured to have found someone so strong to address my questions and his questions about this condition.

    I don’t think you should EVER feel lost in the blogging world, you are here, you’re seriously bad ass and you’re helping so many people! You need to keep up what you’re doing, because the fight and the determination in you is your success.

    I wish you all the best,

    Georgi xx

    Liked by 1 person

  2. Keep on blogging! I didn’t have a blog for the longest time because I didn’t want to be defined by my disease. Blogs like yours and others however have given me a lot of inspiration and strength to speak up (and out). Thanks!

    Like

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