Personalised IBD care: Patient stories

Personalised IBD care: Patient stories

Paul was diagnosed with Ulcerative Colitis in 1986.

He shares his experience of what happened when what mattered to him was identified and a plan for action was created.

I had to move hospital to get good care. My previous hospital dished out course after course of prednisolone tablets, leaving me with osteopenia and a weight problem.

The care at my current hospital has been exemplary. When it became apparent that azathioprine was no longer controlling my flares, my consultant offered me a choice of adalimumab subcutaneous injections or infliximab intravenous infusions and discussed these options with me. I haven’t needed prednisolone since and I’m not overweight anymore. At the same consultation we agreed a treatment plan if my treatment was to stop working.

After every appointment, I get an electronic copy of the letter from my hospital to my GP through the MyChart app and website – this means we’re all on the same page. In between appointments, my hospital’s IBD nurses respond by the end of the next working day latest to messages on MyChart, which enables prompt adjustment of medication to maintain tight disease control.

My hospital is genuinely committed to giving patients a voice. It has set up an IBD Patient Panel, of which I am the secretary. We meet four times a year and the IBD lead consultant, senior IBD nurse and IBD psychologist regularly attend.

My Bag and I - documentary about living with a stoma


Dr Kevin Barrett talks to Rachel Fowler, a patient diagnosed with Inflammatory Bowel Disease, about her experiences of diagnosis, flare management and wider support.

Listen now