Before I started working with Romanwell I had been in a flare up for around 6 months, having lost response to my previous medications, and really struggled with finding a new long-term medication, as well as managing the flare up with short-term measures.  I felt my gastroenterologist was not really taking me seriously, not checking labs, and prescribing fewer steroids than I needed.  As a result I had debilitating symptoms, my life had shrunk to just being ill, and I was anxious and depressed.

I was looking for ways I could help myself, and I believed that diet was a major factor in IBD.  Having been diagnosed for nearly 20 years, I felt that I had already learned a lot about diet and wellbeing for IBD, but I was overwhelmed trying to maintain a healthy diet during my flare-up, and had severe anxiety about what to eat. 

It was very helpful to have an initial conversation with my dietitian before getting started.  I did have to consider the cost of working with her, as for me this was a significant investment, although I did feel that I would definitely benefit from the program, so I decided to prioritize myself.

When I started the program, I was impressed with her evidence-based approach.  Setting goals for working together inspired me and made me hopeful, and hearing about the research that supported advice on diet and foods was reassuring, and helped me to feel more focused and calm about my food choices.  I noticed pretty quickly that I stopped losing weight at the rate I had been, and had a lot more energy. 

I also found that the motivation she gave me to advocate for myself with my gastroenterologist was invaluable.  I believe if I hadn’t had her advice on my diet, then I may have ended up in hospital before my gastroenterologist caught up to the situation and put an appropriate treatment plan in place.  Now that I am improving, her advice, and especially the online resources in the portal, have given me more confidence to reintroduce foods knowledgeably. 

It was great to have an IBD dietitian's support during such a challenging time, and I also have knowledge that will help me in both flare-ups and remission in the future.