On this day… 26th August 1997

26th August 1997 is the day I was admitted to hospital with symptoms that, 3 months later, led to my diagnosis of Ulcerative Colitis.  Although there are things I want to forget, there are things I can’t forget, things I have forgotten until I remember and that day falls into the category of things I want to forget, but can’t.

I was at school, not long started back after summer holiday, sitting going through my two times tables and, as I was a stubborn child, I didn’t want to interrupt the lesson by saying I was unwell, so I kept raising my hand in the hopes that I would be picked and I could let the teacher know I wasn’t well, that wasn’t the answer to “2×6”, but I was heard and asked to sit at my table until the maths lesson was over. During that time, my classmates looked after me. They fetched me wet paper towels when I was too warm, offered me their cardigans/jumpers when I was too cold and walked me round to the medical room once I told the teacher just how ill I was feeling and they gathered my belongings and sat with me until my mum arrived to take me home. Sadly I repayed one of them by vomiting all over her new school shoes (and managing to reach my mum’s in the process).

Once home, I was struggling to remain conscious, one minute it was me and mum, the next my GP was examining me, and then my mum was crying as she phoned for an ambulance. Then I woke up in the ambulance, vomited in the oxygen mask, and then my dad was with me and my mum in the A&E cubicle.

For a few months prior to that day, I had been experiencing a frequency/urgency in bowel movements, often with blood, or mucus and severe pain and cramping and my parents were worried, however on seeking guidance from out of hour services, they were advised that the blood would cease as it appeared that I had burst a blood vessel due to the increase in bowel movements, and that would heal.

For over two weeks I underwent a variety of investigations and examinations (scans, endoscopies, stool tests, blood tests) and thankfully my mum was allowed to stay with me in hospital. I was in a room by myself as doctors were unsure if I was contagious, or at a severe risk of infection.  I always remember my brother coming to visit (bringing some school work with him) but he wasn’t allowed in my room for a few days after admission due to the uncertainty of my condition and I hated not being able to spend time with him, yes he mainly teased me, as older brothers do, but he also knew how to make me laugh and have fun and he was my friend. One perk to my admission was that he bought me presents, a lion teddy bear, which I called Leo, who was allowed into some of my procedures so I didn’t feel lonely, with the doctors and nurses even performing the procedure on him and a Get Well balloon, which is still intact!

Over the years I’ve realised that my inspiration for becoming a nurse came from the wonderful care I received on the paediatric ward, my maturity came from being classed as an “adult” at age 12 in the world of health care. My determination came from being so acutely unwell at the age of 19 that I was required to be placed in isolation at Ayr Hospital and being told that “surgery was my only hope”. Becoming a mental health nurse improved my confidence when talking to my care team about my health and reinforced to me that patients can make a change in the way they receive care, regardless of their diagnosis end encouraged me to self manage my conditions. I’m very fortunate in regards to my health as I have been able to have my condition managed with a combination of support, medication and self management and I am honoured to be a champion and an ambassador for Crohns’ and Colitis UK, The Health and Social Care Alliance Scotland and to be in a position where I can offer peer support. It has taken me a long time to be comfortable with my diagnosis of Ulcerative Colitis, but it’s a part of who I am, and I’m going to do whatever the hell I can over the next 20+yrs to fight and win the battle against it.

Rare Disease Photo Challenge

Throughout the month of February, I participated in the Rare Disease Photo Challenge in the hopes to raise some much needed awareness of Primary Sclerosing Cholangitis and to show that not every illness is visible.

I realise I may have bored a lot of you senseless by taking part in this challenge, but it’s something that is important to me.

Not only was I able to help raise awareness about my rare disease, Primary Sclerosing Cholangitis, I was able to raise awareness about rare disease in general, and educate myself on other rare diseases that are out there.

A disease is classed as rare when it affects fewer than 1 in 2000 in Europe and there are over 6000 rare diseases in the world, 80% of those  have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative and 50% of rare diseases affect children, but no two people are affected the same.

Unfortunately, due to relatively common symptoms, a rare disease can be hidden, which often leads to misdiagnosis and delays in receiving treatment, which ultimately reduces a persons quality of life.

Throughout the challenge, others with a rare disease shared their journeys and experiences and inspired others who may be facing the diagnosis of a rare disease, or currently un-well with their disease that there is hope and that you can make the most of your life with whatever rare disease you may have, showing that the diagnosis does not control you, or define who you are. PSC certainly does not define who I am or how I live my life. Yes it is there, it is present, it does limit what I can do, but I acknowledge it and I do my god damn best to make sure it doesn’t control what I do with my life.

 

 

 

PSC Awareness Week 2016

Today marks the start of PSC awareness week (23rd-29th October).

PSC, short for Primary Sclerosing Cholangitis, is a disease primarily of the bile ducts, both inside and outside the liver (the ducts of the gallbladder and pancreas may also be involved) The walls of the bile ducts become inflamed (cholangitis). The inflammation causes scarring and hardening (fibrosis) that narrows the bile ducts. The bile is then unable to drain through the ducts accumulating in the liver causing damage to liver cells. Eventually, so much bile is accumulated, it seeps into the bloodstream. As a result of this long term cell damage the liver develops cirrhosis (hardening or fibrosis) and can lead to the need for a liver transplant.

I received my PSC diagnosis in 2010, via a letter written by my consultant, with very minimal information.  I was on one of my final nursing placements at this time and was distracted by the thought that I was 20years old with liver disease.  The ward manager recognised that I wasn’t myself, and so she took time out of her busy schedule to spend time with me and researched my condition.  We discovered that Elena Baltacha, a champion tennis player, had the same diagnosis as me and had the ability to live her life to the best of her ability.  She was diagnosed at 19 years old, a year younger than me, and it was such a relief.  We looked into her life and career and discovered that she was meticulous when it came to managing her condition, recognising the importance of ensuring she complied with her medication. Sadly Elena passed away on 4th May 2014 to liver cancer, but she continues to inspire me.

Through researching the condition, I came to learn that PSC is classed as a rare disease, and classed as an extra-intestinal manifestation of IBD. Research told me that around 2% of people with Ulcerative Colitis are affected by PSC.

It’s a condition that I often neglected due to symptoms of my Ulcerative Colitis being more problematic, however in 2015, I was met with the devastating news that my PSC was progressing and becoming more treatment resistive, despite my Colitis responding. I suffered terribly with exhaustion and pruritus, and had to take medication which I swear was wallpaper paste. Thankfully, a course of steroids and changing my colitis medication improved my liver function and after a year, it’s gone back to being it’s healthiest, but I’ve learned that I need to take care of my liver, just as I do my bowel.

Life with a chronic condition, (or two) comes with many emotions, but I strongly feel that I am in a position where I can raise awareness about PSC and learn more about how to manage it, just like I have done with my Ulcerative Colitis.