Due to Pseudo Obstruction I am fed intravenously (HPN). Prior to starting feeding I experienced the rollercoaster ride of being misdiagnosed, misunderstood and feeling very isolated. Things have changed and improved!
Being associated with the founder members of PINNT I feel privileged to have been involved since PINNT's inception and continued growth. There was a shared passion to bring together artificially fed people into a forum where experiences, fear and ideas could be shared. We have achieved so much - worked to bring new equipment and services to those on home artificial nutrition.
When I can I enjoy travelling, shopping as well as all the normal things that make us happy!
I have been a member of PINNT since 2006/2007. This was when I was put on PN following a difficult set of teenage years. I was diagnosed with Crohn's when I was 10 but escaped major surgery until I was 16. This was mainly with enteral feeds such as Elemental 028 and Ensure. Since then I have had to have a lot of surgery and now have a short bowel so am fed with PN; which for me has made me extremely well. To this day I still hold down a job and I am the only commercial pilot in Europe to be fed in this way.
My personal aims with PINNT are to build on the membership, both PN and enteral so that the 'patient' has a stronger voice should the government look to change anything. I am also proud to be associated with a charity that has made so many differences to patient's lives; PINNT is responsible for bringing portable pumps to the UK, designing certain rucksacks and drip stands amongst others. I look forward to working with the Officers and my fellow trustees to help better the care that patients receive and inform patients.
I joined PINNT back in 2006 following a difficult time in and out of hospital for treatment of severe Anorexia Nervosa. Throughout these periods in hospital I have been feed via nasogastric (NG) tube on and off since the age of 15 and only with this nutritional support have I been able to maintain even a remotely healthy weight.
Following many unsuccessful "normal" treatment attempts, it was decided that I was uable to physically or mentally manage to maintain a healthy weight without life-long nutritional support and I was put onto enteral feeding permanently; at first by NG tube and now by PEG.
My role within PINNT is that of General Secretary, EC member and Literature Co-ordinator, which is support not only by my own experiences of enteral nutrition but also through my undergraduate degree in clinical nutrition and masters in public health.
It is through the support and understanding of PINNT that I was able to grow in strength and confidence; enough to accept & embrace my treatment and my life has improved so much. I feel a deep gratitude to PINNT and everything that they do and I want to help them to continue reaching out to and supporting all those affected by artificial nutrition.
Until recently, enteral and parenteral nutrition has been part of my life not as a receiver but from the perspective of a nutrition nurse specialist. It’s been my privilege to accompany many people and their families in the ups and downs of their nutritional journeys, bringing good friendships along the way. Continuing my involvement at PINNT regional and national level gives me the opportunity to keep a foot in the door of a clinical area I know well and to which I feel I can contribute.
I have been on TPN for what seems like a life-time! After spending a long time in hospital undergoing many tests I was diagnosed with Visceral Neuropathy & Myopathy and told I would need TPN.
Although I have accepted that this is my future, it did not come easy, after all I was working for the social services, I had a husband and a daughter; Lisa, I just didn’t know how to deal with the life change, until I was introduced to Carolyn Wheatley from PINNT. After spending the weekend talking to Carolyn, I finally began to accept that this was my future & with the support of PINNT I could lead a relatively normal life; whatever normal is!!!
I have been a PINNT member for 15 years now and in the last few years have helped run the Addenbrooks PINNT meetings. I thoroughly enjoy supporting & talking to others that have been through the similar situations.
In the last year I have joined the executive committee, where I am learning all of the time. It is lovely to be a part of something that is so close to my heart and I hope that I can help others as I have been helped myself.
I joined PINNT in 2012 when I was told I would need to be fed Intravenously (HPN). I had previously spent a number of years on Enteral feed where I felt I was alone and nobody else had this illness. Having fought going on HPN for a number of years I eventually came to terms with the fact that this was the only way forward. Being a member of PINNT really helped in the beginning as I could follow discussions on the members forum and see that there were other people out there who were having the same issues as me and look at some of their ways of solving the problem.
I have taken over as Membership Secretary and would love to see PINNT grow in numbers of those who are artificially fed so that they could have the help, support and piece of mind that they are not alone. My other wish is that we can reach out to as many individuals as possible to ensure that those who are Artificially fed are treated correctly when in hospital or Healthcare settings.