Lauren’s Young Diagnosis Story: Age 8
Diagnosis: Crohn’s disease
Year of diagnosis:
Age at diagnosis: Eight
Place of diagnosis: Wishaw General Hospital/Yorkhill Hospital for Sick Children
My name is Lauren and I like to describe myself as ‘your friendly neighbourhood Crohnie’ – I’m 27, work in the financial industry as an employment relations specialist and am currently enjoying being a new member of the ostomate community. However, despite being new to all things stoma (I gained a permanent colostomy only seven weeks ago), I have actually been diagnosed with Crohn’s for almost twenty years; most of my life. Given the age I was at diagnosis and how ill I was pre-diagnosis, I struggle to recall what it is to be well. However, this has rather strangely been a secret weapon for me, as being so accustomed to continuous severe illness from such a young age has helped me confidently deal with my spiralling health-related challenges as time has progressed.
I am unsure as to when my challenges first began and would struggle to confirm this as what I am sure of is my secretiveness about my symptoms in the early stages. Despite being a little girl, I would say I was somewhat advanced in terms of my emotional intelligence, and understood that my parents would be very upset and concerned if they knew that something was going very wrong with my health. I vividly remember subconsciously employing what I now understand to be distraction tactics to try and suppress my symptoms, or at least my physical and emotional reactions to them. Growing up in a house with one bathroom often meant a lot of queueing, so when in severe pain and desperately needing to use the toilet, I would pace around the up and downstairs of the house following an exact route, or walk up and down the same slabs of the patio in the back garden if waiting on the house being unlocked, before finally commandeering the porcelain throne for what often felt like hours. Interestingly, my symptoms actually began with horrific constipation as opposed to the diarrhoea usually associated with Crohn’s, hence the huge periods of time spent on the toilet in one sitting (pardon the pun!). When I finally made it to the toilet, I would then attempt to distract myself from the pain by scrupulously studying the bathroom wall tiles and the diamond pattern within, counting each tile and diamond over and over until ready to pass out from the pain or square-eyed situation that inevitably followed. On finally passing a stool, the toilet bowl would invariably be filled with a frightening volume of blood, something I also intended on keeping secret if I could.
However, my symptoms became very severe very quickly, and in my mum’s words, I was “fading away before everyone’s eyes”. I lost an extreme amount of weight, was then too frightened to eat much due to the pain, and began developing extraintestinal manifestations including skin rashes and erythema nodosum so severe that I collapsed when at Brownies with friends one evening. My mum recalls various trips to different GPs who were so perplexed that they declined to even hazard a guess as to the cause of my ever-worsening ailments, and felt deep concern and upset at my wasting away. It was only on my aforementioned collapse that the correct diagnosis was considered by our wonderful family GP at the time, who spotted what I would describe as a relatively unproblematic and characterless small rash on the inside of my left calf. Almost immediately, he called a consultant gastroenterologist friend at the local general hospital, where I was soon after subjected to the dreaded colonoscopy under general anaesthetic and formally diagnosed with Crohn’s. Interestingly, Crohn’s had affected my mum’s life (albeit mildly and briefly), but this factor was never considered by anyone; rather, my age appeared to be a key factor that detracted from the possibility of IBD being the culprit in the GPs’ minds.
Following my initial diagnosis, I was transferred to the care of Yorkhill Hospital for Sick Children in Glasgow and treatment commenced. After various medications failed, Modulen was introduced and so began my bizarre experience of drinking only this vile prescription powder and 7up and eating nothing for two months. Whilst this helped with the bowel rest, I only just told my mum a few weeks ago that a 10-year-old peer in my class at school told everyone that I had an eating disorder and was “attention-seeking” despite my dietary situation being explained to all pupils in my company. I was devastated – whilst I couldn’t (and still don’t) expect anyone to completely understand my condition, symptoms and treatments entirely, this girl knew that her words were hurtful and decided to share her misinformed opinion with everyone anyway. It is an experience I will never forget. Thankfully for me, though, following the Modulen and intensive biologic treatment, I began to gain weight, look less skeletal and start to become slightly more well. Unfortunately, this was relatively short-lived and I have exhausted all medical treatments and had several surgeries and complications (including eye conditions, peripheral arthritis, complex fistulising disease and sepsis). That said, like I coped as that frail 10-year-old girl being singled out due to her illness, I always reminded myself that others had greater misfortune and hardship and that I was fortunate to experience my journey no matter how testing, as I was still alive to think and feel and reflect. I think about the latter point quite frequently still.
To all new IBD patients or ostomates, know that you’re not alone and that this is not the end. No matter whether the diagnosis or bag is new, remind yourself that it can certainly be daunting but is also overwhelmingly positive in that it allows you to start working towards regaining your life. IBD brings its ups and downs and due to the nature of Crohn’s in particular, remission is never linear or guaranteed – I should know, as my disease has ripped through my large intestine, small intestine, rectum and anus as well as other parts outside of my GI system. However, there are so many wonderful people waiting to help and educate you, comfort and lift you up, and remind you that you are by no means alone. We break down barriers, work to dissolve stigma and constantly teach the world to be more friendly to those with invisible disabilities through understanding, acceptance and compassion – and you will never look back. This isn’t the end of your life – it’s only the beginning.
LC x (@abagforlife)