My IBDU Story 

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Hello my name is Andrea and I am the Chair of the IBD Patient Panel at the RL&MEH. 

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I have had Inflammatory Bowel Disease for 24 years and been under Bart's & Royal London Hospital since day one. My journey has taken me through Paediatrics, Young Adults and now the Adult department. 

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I became suddenly unwell in 2001 aged 13 while on holiday. I developed severe diarrhea and instantly went off my food. I managed to hide it for a number of weeks but eventually my family started seeing snippets of what was happening. The diarrhea was getting worse, I was losing weight, vomiting and had no energy.

After resisting medical help I finally agreed and, after 3 months and a baffled GP, I was admitted to hospital (by this time I couldn't keep any food or drink down or stand unaided) for what turned into an eventful 6.5 weeks of tests, medications, TPN and Modulen, intensive physiotherapy, infections and a DVT. 

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I had severe IBD by this time but tests and histology were coming back with both Crohn's and Ulcerative Colitis features so I was diagnosed with IBDU. 

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I had a second DVT in 2003 and was diagnosed with Type 1 Diabetes in 2007. 

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Life since has been very up and down with flares and remission, countless admissions, blood transfusions, extraintestinal symptoms, and various changes in medication. I  underwent a Pan proctocolectomy with permanent Ileostomy in 2017 due to developing dysplasia then followed by emergency surgery 4months later due to complications. I was reclassified as Crohn's Disease in 2022 and started back on biologics.

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​​Why I joined the IBD Patient Panel

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I was keen to join the patient panel to help give back to the IBD team who have helped me so much over the years. Its been a great opportunity to work with the IBD Team and Bart's Health Trust in improving IBD patient experiences and care by getting the patient voice heard, as well as meeting fellow IBD Patients and Families.  

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