Pseudo Obstruction Research Trust Patient Information Day 2015

On the 9th October 2015 P.O.R.T. held its first Patient Information Day, which was a huge success. It brought together patients, family members and professionals to share knowledge about the CIPO and related conditions as well as for patients and family members to meet others who truly understand, forging friendships and gaining a support network. The day was very informative, with talks from a range of consultants with different areas of expertise, and patients had the chance to ask questions as we had Q&A sessions with the consultants after their talks. This meant knowledge was shared, questions could be asked, but also, patients could feed back to consultants what was most troubling and most important to them, and patients came away with a better understanding of their condition and its treatment and management.

In attendance were P.O.R.T. Chairperson Sue Stewart, and Trustees Sonia Frost and Lucy Watts MBE, with consultants Professor Qasim Aziz, Dr Adam Farmer, Dr Nigel Meadows, Dr Nikhil Thapar, Dr Michael Glynn and Dr Jayne Gallagher, along with P.O.R.T-funded research nurse Laura Brockway, and approximately 60 patients and family members.

Feedback was overwhelmingly positive and we hope to hold more Patient Days in the future.

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Our beautiful Emily was born on 21st March 2003, the hospital visits started pretty much straight away. Emily was a “sicky” baby and wasn’t interested in feeding, She always seemed to be underweight, lots of
coughs and colds and infections. At 5 weeks Emily bled heavily from her bowel, we were transferred to The Royal London Hospital, initially it was thought that Emily had an intussuseption – where the bowel folds in on
itself. Eventually it was concluded that it was caused by a milk allergy, so I had to stop breastfeeding and Emily was started on a part  digested formula.

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I had been fit and healthy weighing about 12st through all my younger years and indeed for the first half of my working life. In my early forties I first suffered severe stomach pains on an occasional basis which gradually became more frequent. This was in the early 80’s

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