Friday, 4 December 2015

If you could change one thing about the public’s perception of Inflammatory Bowel Disease, what would it be?

I usually ramble on in my blogs so I have set myself a challenge – 200 words max per blog for Crohn’s and Colitis awareness week!

#IBD has undoubtedly become more common in the press / public eye over the last 18 months but it is now, more often than not portrayed as a disease which always end with #surgery being needed when that is not the case.

The main thing I’d like people to understand is that there IS NO CURE. There are people that have IBD that don’t suffer on a daily basis. There are people that manage to stay in control of the disease with medication for the rest of their life. They are lucky. We are NOT all lucky.

Because there is no cure, there are thousands and thousands of people that are constantly battling with their own body and on top that, battling the medications and their side effects that we’re using to TRY and get the disease in remission. Surgery is always a last resort, but it’s still not a cure. I’m 6 surgeries down and I’m not done yet. It’s claimed by many specialists that a sub total colectomy (removal of the whole colon cures Ulcerative Colitis) as it only affects your colon – so when it’s gone, the disease has gone. They fail to mention that if you have a pouch made from your small intestine to serve as your rectum then IBD can return, in the form of pouchitis or cuffitis, bringing with it the same symptoms and old and new IBD medications to treat it.

Cured – I’m not cured…

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