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24 Aug 2015

10 Things Only People with IBD Will Understand

 IBD or Inflammatory Bowel Disease is a group of illnesses including Crohn’s Disease and Ulcerative Colitis.  Symptoms affect the digestive system; patients have diarrhoea, bleeding and many other problems.  

Any patient of IBD will know that it is an embarrassing and isolating disease that can affect every part of their life, with instances where it is hard for others to understand what they are going through.
Should you suffer from IBD, here are ten things you’ll all have in common:
1.You not only know what the Bristol Stool Chart is, but you can name all the types of stool and diagnose your own at a glance.
2.Bowel prep for endoscopy procedures is basically torture.  The vanilla or lemon taste fools no one and somehow manages to make it worse.  It is basically downing a few litres of foul smelling fluid that is going to make your bottom explode.  For hours.  We also know to stay VERY close to the toilet during this event.
3.We can hunt out a public toilet the way a pig smells a truffle, it’s like a sixth sense.  The reality is that going out of the house during a flare up can be a worrying experience, so knowledge of where the nearest toilet is can help with the anxiety.
4.The side effects of our medications can be as bad as the disease itself.  From headaches, insomnia and ironically, diarrhoea to moonface, osteoporosis and even an increased risk of cancer.
5.It is so much more than ‘just a poo disease’ – IBD can affect skin, eyes, joints and more.  Not to mention the emotional distress and mental health issues that can come from having a chronic illness.
6.It is NOT the same as IBS, though the diarrhoea symptoms are similar, IBD actually destroys the bowel and 1 in 4 people will Crohn’s and 1 in 7 with Ulcerative Colitis will face surgery in their lifetime.
7.People tell you about their own bowel habits when they hear you have IBD.  They sense a fellow toilet dweller and tell you EVERYTHING.  Some even show photographs…
8.Our weight can fluctuate drastically up and down.  It’s not ok for people to comment.  Weight loss is usually because we are dreadfully ill and weight gain is sometimes due to medication side effects.
9.No, we can’t hold it.  We can’t wait.  We can’t hang on till the next services.  If we say we need to go, we need to go.  Ignore at your own perill.
10. We may look OK on the outside but IBD is sometimes called an invisible disability as patients can be really suffering inside.  One of the worst parts of chronic illness is isolation and feeling alone, so it is important that those with IBD speak out and seek support. There is a lot of help out there not only from medical professionals but also support groups both online and in the community.  Don’t let IBD take your voice, speak out and join the friendly and supportive community of IBD sufferers. 
This article was written in collaboration with Sam Cleasby of So Bad Ass. Having been diagnosed with Ulcerative Colitis in 2003 and undergone a Colectomy and Ileostomy in 2013, her blog provides support, real life stories and information along with fun, laughter and honesty for anyone suffering with IBD.