What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

There really isn't a cure...

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 of 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 some people that a subtotal 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. They also fail to mention that all of the extra-intestinal manifestations associated with stay with you for life too.

Cured – I’m not cured…