10 MORE THINGS I WISH I’D KNOWN WHEN I WAS DIAGNOSED

Amy Aed — Thu, 09 Apr 2026 10:55:54 +0000

I was diagnosed with Crohn’s Disease when I was 15, and boy, has it been one helluva journey.

Thankfully, since then I have come to terms with my diagnosis and actually been able to understand what it is and what it means, so that now, I can live a relatively normal life with it. It took me about a year after my diagnosis to start joining Crohn’s and Colitis support groups, but when I did, I was able to learn so much about what Crohn’s Disease is and what having it would mean for me.

Not too long ago, I asked people in my Crohn’s Disease group for advice they wish they’d had when they were first diagnosed – and they were all so incredibly helpful. From that, I’ve compiled the second segment to Things I Wish I’d Known When I Was Diagnosed – you can read the first segment here!

I wish I’d known it wasn’t all in my head because “being less stressed” doesn’t cure it!

– Lauren Mitchell

I wish I’d listened to my body more as a 16/ 17 year old and got help sooner. I also wish I knew about support groups/ accounts sooner. They are such an amazing help and everyone’s encouragement and positivity genuinely warms my heart. I love the IBD community.

– Nancy Tysoe

Be careful where you seek out information on the internet – NHS and CCUK are the best.

– Gill Renouf

Don’t be afraid of your diagnoses. It might be scary to begin with. However, there’s so much treatment out there and you can still live a normal life!
– Charlie Stokes

Lock the fridge door and throw away the key if having to take steroids…

– Karen Harvey

If you think there’s something wrong, usually there is. Don’t take “it’s just IBS you’re too young to be ill” as an answer.

– Rachel Anne

There’s no “best drug”, there’s only drugs which work for you right now.

– Paul Westlake

I wish I’d gone on a low inflammation diet earlier. You’ll learn which foods you can have so that when you have a flare you can just stick to those.

– Ian Wheatley

We definitely don’t ask our consultants enough questions, we just accept what they tell us. ALWAYS ASK NEVER BE AFRAID.

– Laluli Jo

You are more than your disease! And however bad things are, nothing lasts forever: you will not feel pain forever, you will not feel nauseous forever, you will not spend the rest of your life ruled by bathrooms!

– Beccy Schieren

I hope that this post has been helpful if you have Crohn’s Disease, have a loved one with an autoimmune disease, or even know nothing about the whole shebang and simply stumbled upon this post by accident.

If you have any other tips or questions, please let me know in the comments below!

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10 MORE THINGS I WISH I’D KNOWN WHEN I WAS DIAGNOSED

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