Kirsty

Kirsty was diagnosed with ulcerative colitis in 1997 at just 7 years old, and was further diagnosed with Primary Sclerosing Cholangitis, a form of liver disease associated to IBD, in 2010.

I was diagnosed with Ulcerative Colitis (UC) back in 1997, when I was 7 years old and it's been a rollercoaster of a ride over the past 19 years, particularly as I was further diagnosed with Primary Sclerosing Cholangitis (PSC), a form of liver disease associated to IBD, in 2010. It's hard to explain to someone the physical and mental impact life with two chronic conditions, but I wouldn't be the person I am today if it wasn't for these conditions; 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 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. However, life with IBD has it's downfalls and it's not unusual for me to feel sorry for myself, particularly when I have a flare, wondering what I may have done wrong in a previous life.

My childhood was dominated by extreme abdominal pain, nausea, severe exhaustion, sudden diarrhoea and projectile vomiting (at times I swear I was making an attempt to audition for the Exorcist).

I've lost friends, good friends, over the years because of being so exhausted I've had to cancel plans last minute and because of this exhaustion, I've often struggled to shower and to eat properly.

I've been on a course of powerful, yet punishing treatments over the years. My growth was stunted as a child due to the volume of steroids I've been on.

I've gained weight, and I've lost weight at the extent of medications, which has significantly impacted upon my self esteem and confidence levels, but I knew the medications worked for my health.

However, in 2009, I took a severe reaction to a medication that had finally given me a new lease of life, mercaptopurine, and I was admitted to hospital with Neutropenia Sepsis and faced a testing time of trial and error to find something that would work for me.

I regularly undergo blood tests and in December 2010, I was diagnosed with Primary Sclerosing Cholangitis, a rare liver condition that can be linked to UC. Throughout 2010, my liver function tests were consistently abnormal and I was sent for a liver biopsy, something that I regularly undergo now.

Following a severe flare of my UC in 2014, I was prescribed Infliximab, however in 2015, I had a reaction to this as the impact it was having on my liver was just too much for me to handle anymore and the decision was ultimately made to take change my medication yet again.

It was during this time that I realised I often neglected my liver condition due to symptoms of my UC being more problematic, being faced with the devastating news that my PSC was progressing, partially due to my medication and becoming more treatment resistive, was something I hadn't prepared myself for, and so I started to care for my liver more, like I do with my colitis.

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'm annoyed that it took for me to become unwell with it to realise this.

Thankfully, in 2016 I was prescribed Humira, and it has changed my life. I successfully tapered off steroids toward the end of 2016 and in September 2017 during my routine colonoscopy, I was told the wonderful news that there was no active inflammation in my bowel and I was in remission.

I'm uncertain what my future holds in terms of my health, as both my conditions are so variable, it may include medication, it may include a stoma, it may include a liver transplant. I just don't know.

But I do know that I can continue to focus on the positives. I can continue to raise awareness, to fundraise, to share my story, in the hope that I can make a tiny bit of difference to someone else out there who is diagnosed, or is going through the diagnostic stage.

As a kid growing up with IBD, in a time before Facebook and Twitter, there wasn’t the awareness of IBD that there is today and I don’t want anyone to feel lonely, unsure of themselves or ashamed of who they are, or to feel that they had no support in the world and actively encourage young people go along to a support group, or any event that will allow them to meet others going through something similar and to know that there are people out there who understand.

I had previously avoided going to support meetings as I felt that I was too young to go along and felt that they weren’t for me, however, when i was 15 years into my UC diagnosis and at 22 years old, I finally accepted the impact that UC had, not only on myself, but my family and friends too and went to my first support group and volunteered to be involved in further meetings.

I am proud to say that I qualified as a mental health nurse in 2011 and I am actively involved with making changes in how IBD care is delivered as the National Blueprint Champion for Crohn's and Colitis UK's new initiative – “Scotland Leading the Way- a National Blueprint for Inflammatory Bowel Disease in Scotland”, which aims to improve services for the 26,000 people in Scotland living with Inflammatory Bowel Disease.