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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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.

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

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I've tried not to let life with Chronic Illness define me. I've learnt to block the affects of stigma, bullying and the expectation of failure. Its given me a stronger determination to achieve the best in life.

After having a year off school and then only returning part time, I unexpectedly passed my GCSE's, A Levels and my BA Degree. I've travelled to Australia and New Zealand; worked in childcare and education settings, and owned my own business. I worked for the NHS during the Covid 19 Pandemic and have just completed a Post Graduate Occupational Therapy degree and work full time in community healthcare. 

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In my spare time I'm an active member of the patient panel as well as volunteering and raising money for Crohn's in Childhood Research Association (CiCRA) who gave my family and I so much support in the early years of my IBD journey. I am also a flautist. 

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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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