15 THINGS I WISH I’D KNOWN WHEN I WAS DIAGNOSED

Amy Aed — Wed, 10 Jun 2020 15:26:49 +0000

Coming to grips with my Crohn’s Disease diagnosis was one of the hardest things that I’ve ever had to do. I didn’t understand why this horrible thing had to happen to me, and I found it so difficult to cope with the hundreds of side effects that came with it. I didn’t know anyone else who had Crohn’s, and nobody around me quite knew what it was about either.

Luckily, over the past few years I have been able to both come to terms with and understand my diagnosis, and as horrible as it is, I am thankful that I am able to live a relatively normal life with it. About a year after my diagnosis, I began to join Facebook groups and support groups, and by talking to others who had lived with the disease for a lot longer than I had, I was able to learn about the best ways to manage it, what sort of diets to give a go, and how to try to live a normal life. Since then, I have written endless articles about Crohn’s Disease and how I am able to travel with it, and by sharing my stories I hope that I am able to help others that suffer with similar ailments.

Recently, I wrote a post in a Crohn’s Disease support group asking everyone what they wish they’d known when they were first diagnosed, which received an incredible amount of responses. From that, I narrowed down the top 15 answers to combine in this blog post. Why 15, I hear you ask? Because 15 is the age that I was diagnosed.

That everybody’s different and something that may work for someone else may not work for me.

– Rachel Macdonald

Employment law, i.e. what are my rights, the importance of vitamins and minerals (check iron, vit b12+folate, vit D), mental health support.

– Bob Hope

Make the most of the time you are, relatively, symptom free. I’ve lost too many years to this condition. I wish as a younger man I’d known what could happen in the future.

– David Buckle

I wish I had listened to my body more & not rushed back to work/‘normal’ life. I feel I wish I had been given this advice.
– Eilidh Whitfield

Don’t be afraid to ask questions – I find it helpful to have a written summary of the history of the disease (after 30+ years it’s hard to condense!); how things have been since last appointment and most importantly any questions I have.

– Gill Renouf

The pyramid of treatment – prednisone, azathioprine, 6mp, biologics etc. I had no idea what any of them were or what the side effects might be.

– Emily Bispham

I wish I’d pushed more for answers and stuck to my guns about my symptoms instead of accepting what I’m told rather than what I feel.

– Janine Akerman

I wish it had been fully explained to me that my whole lifestyle would need to be altered to ensure I could stay healthy and learn how to balance the needs of what my body now needed from me.

– Charley Drinkwater

Don’t accept medical advice from a physician who tells you it’s all in your head and thinks they know your body better than you do. Also, modesty goes out the door during colonoscopies.

– Daniel J MacDonald

That you have a choice you don’t have to do what the medical people say, your body you decide (but research the options). I was pushed about, hitting breaking point before they listened.

– Jo Dinsdale

Don’t expect the first thing you try to work, and don’t give up hope when it doesn’t! I was put on Azathioprine after a round of steroids and I had an allergic reaction to them and was put back on steroids for another few months. I didn’t realise there were other options, so I thought I was going to struggle forever. Now I’m on Humira and it works fab for me.

– Ella Gibbs

That just because you have a diagnosed disease, life doesn’t have to be boring and your dreams diminished. If anything, it gives you a boost to take life and run with it 100%, to make the most of it.

– Sarah Wingrove

Talk about it, don’t hide it, speak out loud about what you are going through. Don’t feel ashamed – it’s not your fault. You are stronger than you think you are! Just keep fighting and you win the war.

– Agata Thompson

I wish I knew about all the different diets such as paleo, AIP Paleo, gaps, specific carbohydrate diet etc…. before I had most of my large colon removed.

– Paul Bryan

Tell family & friends, be open about your health with them and send them info so they can better understand what you’re going through.

– Sarah Relf

I hope that this post has been able to offer some help to those with Crohn’s Disease, those who have a loved one with an autoimmune disease, and even those that knew nothing about it before this post – I sure wish that I’d had something like this when I was first diagnosed!

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

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15 THINGS I WISH I’D KNOWN WHEN I WAS DIAGNOSED

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