Crohn’s Disease & My Diagnosis

Crohn's disease is one of the two main forms of inflammatory bowel disease. The other is ulcerative colitis. Both are invisible disabilities, in that you can look perfectly fine on the outside even if you are suffering with symptoms. For me personally, by the time it shows on the outside, I am really poorly and in need of urgent help. It is tempting to hide my symptoms and push through, something I have been guilty of many times over the years. The hardest lesson I have learned is to listen to what's going on inside. It takes guts to say no to a friend if they need you, or to your boss if you are the best one for the job. How would it look if you let them down? You are not a good friend. You won't get that promotion. We all know sometimes it's easier to listen to your inner critic, plough on and rest later. I think I am getting there with this especially post surgery but there's still some way for me to go. One of the mottos I try to live by is "what is for you, won't pass you".

Crohn's disease can affect any part of your digestive tract, from where your food goes in to where it comes out. It is an auto immune disorder, which means that my immune system is overactive, causing my cells to attack harmless and healthy parts of my digestive tract. This causes ulcers and inflammation and the symptoms of Crohn's disease. I have had Crohn's in my mouth and more recently in my large bowel and sigmoid colon.

There is no known cause or cure for Crohn's disease, although you can have periods of remission and medications or surgery can provide relief from symptoms. It is a chronic illness, meaning it is life long. Over the years, the hardest part about having Crohn's has been the unpredictability of the disease and not being able to truly enjoy things I've committed to because I'm exhausted or in pain. Some of my worst symptoms have been side effects from medications I have put all my hope in and then had to stop. The side effects usually come on fast and take forever to disappear...from weight gain, to weight loss, to moon face, to pustular psoriasis on my hands and feet (I remember shuffling to lectures with bandaged hands and feet...it was almost impossible to write and walk) to the weird but definitely not wonderful erythema nodosum (boil-like lesions on my shins...l still have these scars).

I was diagnosed with Crohn's disease when I was 10 years old. My mum took me to the GP because my lips and gums became really swollen, red and cracked and I had lots of ulcers (or blisters we thought at the time) in my mouth and on my lips. The GP said I had burnt my lips in the sun which my mum thought was odd because they were on the inside of my mouth as well. It didn't get any better but thankfully my dentist picked up on it during a routine check up. He said he thought I had oral Crohn's and he referred me to a gastroenterologist. When I was diagnosed, I think I was the 5th case of paediatric oral Crohn's in the UK. It was something a lot of doctors hadn't seen before and I remember mum being asked if she minded some other doctors coming in to have a look...before we knew it, the room would be full!

I never really understood what Crohn's disease was or how serious it was until I was much older. My mum is very career driven and instilled in me that I could achieve anything I put my mind to, so I never let it hold me back in school. I was very intellectual with a few...we'll call them "behavioural blips" here and there. It was hard at times, being called "fish face" in biology, sitting exams with boils on my legs, requesting the toilet key an embarrassing amount of times (...yes, my high school toilets were locked...is that normal?!) and losing so much weight so fast that my mum had to sew me into my size 6 sixth form dinner dress (thank you, mum!) but we got there in the end.

Crohn's disease has absolutely made things more difficult but, because I grew up with it, it became a part of life. However much of a (literal) pain it can be, it has been my 'normal' for as long as I can remember and its challenges have shaped me as a person, giving me compassion, determination and strength.

Love Me &

My Friend Wendy.