Blog

Isla is 9 years old and was born with a rare condition that has only been partly diagnosed. Her younger years were mostly spent in hospital, with her longest stay being 9 months. She has intestinal failure which is the umbrella of the diagnosis, which includes gastroparesis, pseudo obstruction, myopathic bowel disease. Due to this she is unable to eat or drink any food, as to put it simply her stomach is paralysed.

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Ellie-Mai was born in 2011 at 42 weeks. She is my third child and I had an unremarkable pregnancy and straightforward labour. As soon as she was born I knew there was a problem. She was screaming, as if in pain, and would not latch on. The midwife insisted it was because of a quick labour. I was not convinced!

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Sadie made a dramatic entrance into the world on the 10th October 2015 and has pretty much turned our world upside down ever since. We knew pretty early on that Sadie had trouble feeding, it was always a really stressful experience, she would scream in pain and go floppy and a horrible shade of grey pretty soon after it. My son had reflux and a milk allergy and so the medical professionals put a lot of her symptoms down to that.

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Ollie (the happiest lad alive) was born on 28th August, after a 30 something hour labour, via vacuum due to low heart rate, and other labour complications. During prenatal scans we were made aware that he had a condition known as hydronephrosis and would be required to stay in hospital for a few days for monitoring, however it should be of minimal concern. Little did we or the prenatal doctors know, he had another on-going issue……

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My name is Ruby Skye and I am 13 years old. I had symptoms of a motility problem from before birth as they noticed on scans that my bladder was very big. When I was born I spent a few weeks in intensive care but was sent home, and they thought the main problem was my ‘megabladder’ which didn’t empty so I was sent home with a catheter.

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Collage of members with feeding tubes

During Feeding Tube Awareness Week, we posted awareness posts on our social media accounts-Instagram, Facebook & Twitter. For many with Chronic Intestinal Pseudo Obstruction feeding tubes are one aspect of managing their condition. There are however many other reasons why people may need a feeding tube. We hope through the posting and sharing of our posts we helped to spread knowledge around this issue, and especially how people with CIPO are affected.

PORT has sent it’s newsletter, PORT DIGEST, out to members and is available online.

The first edition of PORT Digest is now finished and has been uploaded to our website.  The newsletter contains lots of information, so please do have a read. There are articles about our current research projects and future projects in the pipeline too. Two members stories are also featured, and these share what it is like to live with CIPO. There are also articles about fundraising activities organised by and for PORT. The final page contains all the contact details and information about the charity as well as some useful tips.

Click here to go the patients section and read our newsletter online

 

PORT received a monetary donation, of £100, from The Bakemore Foundation. This will go towards printing our information booklets. We are in the process off updating these booklets.  The information booklets are sent across the country to prospective sufferers, and medical professionals. They contain a lot of useful information from explaining how the gut works, and how that differs in pseudo obstruction, to symptoms and treatment options, as well as details about the charity itself, the support provided and the research funded.


 

Many thanks to Aranee Navaratnam for organising a Birthday Fundraiser, through Facebook. She raised an amazing £150 for PORT Charity. Thank you so much for your continued SupPORT Aranee. This was our first birthday fundraiser, and as such a simple way to raise money we hope many more will follow!