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What I Wish I

What I Wish I’d Known at the Start

So it’s been over five years since I have been diagnosed with Crohn’s Disease and although that seems like it was only moments ago, I’m also deeply conscious of how far I’ve actually come. Looking back on my journey, there are so many things I got wrong along the way: conversations I could have handled better; ways I could have supported my body more and things I should have accepted much earlier than I did.

Today, I thought I’d reflect on this and, for those who are newly diagnosed in particular, share what I’d wish I’d known at the start of my journey.

Stop being angry at those around you

When I was first diagnosed, I spent months and possibly even years, being incredibly angry at those around me. Whether it was their perceived ignorance (how long will you have it for?) or the fact they appeared to moan about such trivial things (I can’t believe I’ve put on a pound in weight!); I felt disconnected from them all.

And yes I selfishly spent time inwardly screaming ‘why should I care that your body isn’t bikini ready when mine is attacking itself?

I’d also be angry at those friends who seemed to be able to do whatever they wanted – eat erratically, smoke heavily, drink continuously and appear perfectly healthy, whilst my digestive tract seemed to erupt over the plain bowl of rice I was experimenting with.

It’s easy to be angry, but I soon learnt that it wasn’t helping me; and that my friends and family were simply human. It wasn’t their fault I had IBD and being angry at them wouldn’t make it go away.

Keep asking questions

At first, I let the tidal wave of information just wash over me. I’d just take the medication and then get back to life. Great plan! Now I feel as if I’m more in the driver’s seat as I prepare questions before I see my doctor. But I wish I’d asked these questions at the beginning, and not spent sleepless nights googling my fate instead.

Listen to your body

It’s strange. Crohn’s is a disease in which your body is essentially at war with itself, but over the years, I’ve actually felt more connected to it. At the beginning, I’d perceived my disease as random and therefore took no note of days I felt worse or better. I didn’t listen when I felt exhausted or when I reached for a tequila shot. I felt my body and medicine were doing one thing and I could just do mine.

But now, I feel I need to adapt each day as it comes and continually listen. Woke up tired? Right, today I’m taking it easy before it gets worse. Know a work party is around the corner? I’ll take it easy the day beforehand and stick to my safe foods. Can’t get off the toilet? I am 100% cancelling plans.

Your life will change, whether you like it or not.

It’s going to change even if you’re told it won’t. When I look back at myself now and five years ago, I’m a completely different person. I’ve had a complete career change (from a teacher who raced through the day to well…this. Someone who blogs about and raises awareness of the disease at home, usually in my PJs with a bottomless cup of tea.) I live in a different area (I’ve switched to the countryside and no longer crave the city). My priorities are completely different. Not everyone will change so radically, and it won’t happen overnight, but sometimes you have to accept the change. And in my case at least, it actually leads to something positive (the part when I wear pajamas for work).

In some ways, I have so much more to learn and this is hardly the beginning of my IBD journey. But if you are newly diagnosed, take heed of my lessons and realisations; it might just save you a whole lot of time and heartache.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • thedancingcrohnie moderator
    10 months ago

    These are great points.

    I too wish I would have asked more questions and just been more proactive when I was first diagnosed. I was in total denial for quite some years and I “didn’t want to deal with it” for the first couple of years.

    Always dancing,
    Elizabeth (team member)

  • Donna4700
    1 year ago

    I was diag ulcerative protosigmoiditis 2 months ago
    Not able take steroids
    I am on mealamine 4 pills a day and enema
    Still having abdominal pain and issues with food,need to eat

  • Marisa Lauren Troy moderator
    1 year ago

    Hi Donna! I am so sorry about your recent diagnosis. I know it can be very overwhelming, to say the least. I feel so badly that you are still experiencing issues even with the medication and enema. I hope you know it can take time and some trial/error but you will feel better! Not perfect, but definitely better. 🙂 Have you talked to your doctor about your pain and issues with food? It is not uncommon, I hope you know, but I am sure your GI will have some suggestions! Please know we are always here for support.

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