My Diagnosis Journey: Megan
Name: Megan
Age: 22
Location: Leicestershire, UK
Formal Diagnosis: Crohn's Disease (I also have partial Neurofibromatosis Type 1 and enlarged ventricles which were diagnosed when I was younger)
A portrait photo of Megan. She is a white woman with straight long blonde hair. She is wearing glasses and is smiling at the camera. She is wearing a black top with a floral pattern, a black cardigan, and a necklace.
Tell us a little more about yourself?
Hi, I'm Megan, a Linguistics graduate turned freelance writer and content creator. I'm a self-confessed introvert, Friends superfan, and an amateur genealogist in my spare time. I love exploring the UK, and my family have had a motorcaravan for most of my life. Stick me on a coast path with a nice view and a cup of tea and I will happily stay there. In many ways, I feel like I don't need much to be happy. My chronic illness has made me realise the importance of cherishing the little things in life. My family are the most important thing to me.
When did you realise something wasn’t right?
It was a Saturday in March 2019.
The day before I had gone to Stratford-Upon-Avon with my mum and been absolutely fine. I hadn't a clue that I had Crohn's before this day and had never experienced any symptoms before. I hadn't really heard much about Crohn's either. I was completely oblivious.
Even on the Saturday morning, I felt ok. I had gone to the supermarket in the morning and done some blogging — all normal things. The only thing I noticed was that I felt a bit more bloated and was particularly tired. I didn't think much of it as I was on my period and put it down to hormones. On Saturday evening, we visited family for a meal. I struggled to eat all of my dinner and was starting to experience minor abdominal cramps. I still didn't think much of it and wondered if I just had a bit of an upset stomach.
By the middle of the night though, I was in a lot of pain and started to throw up. My dad was coming back from a trip at the time. It was just my mum and me in the house. We knew that these symptoms weren't normal for me, so we called 111 for advice. Their immediate thought was appendicitis, so I received an urgent out-of-hours appointment early Sunday morning. The consensus there was still that it was my appendix, so I got referred straight to a ward at the hospital, and sure enough, my bloods were showing signs of inflammation in my body.
How long did it take for you to get a formal diagnosis?
Within about 48 hours of me being admitted to hospital. I needed a scan to show what was going on. At first, the doctors were hesitant to give me a CT scan because of my age and the radiation involved with a CT scan. I first had an ultrasound and x-ray but the images didn't show much. I eventually had a CT scan, and the doctor later came back and said that my appendix was fine, but part of my bowel was inflamed and they suspected I had ileocaecal Crohn'. A colonoscopy and biopsies later confirmed this.
In that time, what were the biggest hurdles you had to go through to get the diagnosis?
The diagnosis itself was very quick because of how suddenly I became ill, so I wouldn't say there were hurdles getting the diagnosis.
The biggest struggle for me was the shock. To go from being fine one minute, and then being told I have a lifelong chronic illness and having to be told about what symptoms to expect: the impact on my lifestyle, medications, and surgery, before even getting my head around everything.
I had already been diagnosed with partial Neurofibromatosis Type 1 and Hydrocephalus when I was younger, and those experiences in themselves were traumatic. To add another shock diagnosis into the mix really took its toll on my mental health and I'm still trying to adjust to chronic illness life today.
What advice would you give to someone trying to get a diagnosis for your condition now?
Keep a tracker of your symptoms and potential triggers, so you have something to show medical professionals.
Crohn's is a very individual condition. Different treatments work for different people. You can experience different levels of severity or different kinds of symptoms. Never go off what anyone else tells you. You know your body and when something isn't right - voice any concerns you have with your doctor. If you suspect you have Crohn's, then air your thoughts. The sooner you can get a diagnosis, the better.
Know that it is ok to get mental health support. Living with a chronic illness is not easy.
There may be tough times ahead, but there will also be good times ahead too. As time goes on, you learn more about how to manage your symptoms and what works for you.
What has been your biggest lesson through this journey?
Never take anything for granted. When your health, energy, and more get taken away from you, you realise how vital those things are. Appreciate every moment. Know your mind and body. If you need to rest, rest. If you are concerned about anything, speak to your healthcare team and make sure they take you seriously. When it comes to my health and flare-ups, I have learnt to take action earlier rather than later if I am worried about any symptoms.
You can follow Megan on Instagram here: @meganelifestyle and here: @hearthcontent and read more on her blogs here: meganelizabethlifestyle.com and hearthcontent.co.uk