19 December 2022

Was I supposed to be relieved that it wasn’t cancer or devastated that I had a lifelong condition?

I wasn’t sure at all, but hearing the words, “we can see you have proctocolitis” was not a shock to me. So why wasn’t I better prepared?

One GP told me I had a very small anus that would need surgery. She said that’s why I was bleeding. Others had told me since the age of 12 I had piles. Finally, one of the GPs referred me urgently on the two-week pathway for a colonoscopy. Twenty-six years later.

Does this sound familiar? Diagnosis is often elusive for many of us, but we are not sure what to feel when we finally get told we have Inflammatory Bowel Disease.

Before the colonoscopy, I couldn’t tell Mum and Dad. They lost my brother at 31 due to cancer.

After the colonoscopy, my best friend was in floods of tears and concerned for me. I felt dazed.

The biopsy results showed it was Crohn’s disease. Over the years, the gastroenterologists have told me I have Crohn’s, Crohn’s/colitis, IBS, among other unhelpful, confusing (possibly incorrect) facts. As patients, we can then be known for looking up information for ourselves. Is this a bad idea? That depends on the source and the credibility of the information we find.

For me, being diagnosed was the springboard into my career as a researcher. I was hoping to find accurate information and be as well as possible. After a visit to the dietitian (which took more ‘fighting for’) and being shown the standard ‘Eatwell plate’ as it was then, I was frustrated. I didn’t know where to go for information or support. My career as a registered nutritionist started soon after, when I went to university for the first time. I was 42.

My hospital now has an IBD nurse, and things have progressed in the dietetics department. Support is still difficult to find in the medical setting. I’d love to see that change. A diagnosis is a radical time. If a patient could be taken aside, given some time to talk to a trained person, be given an explanation, and maybe a telephone number for times of crisis, this would help hugely.

What have I learned since qualifying and working with patients? Food is not a ‘cure all’. But it can sometimes help. So does sleep, support, medications, movement – the list goes on.

We are a whole person, with complete needs. Being given a diagnosis and a green slip of paper with a list of medications should not be the end of the conversation.