8 Things I Wish I'd Done Differently on My Crohn's Disease Journey
Last updated: March 2023
It's coming up to 6 years since I was diagnosed. Six years isn't that long a period of my life, just under a sixth of it in fact (I'm 34), but it's hard to remember a time when I didn't have it if I'm honest! If you're new to living with Crohn's disease, I thought I'd spend some time reflecting on the things I wish I'd done differently at the start of my journey, in the hope it helps others!
What I wish I'd done after my Crohn's diagnosis
1. I wish I'd not tried to fight it by myself
At first, I blamed myself and convinced myself I could get it under control if I "fought" hard enough by juicing, resting, and supplementing. Don't get me wrong, a healthy diet is vital for anyone but it took me a while to realize this illness was bigger than me and needed treating with medication. I couldn't do it alone.
2. I wish I hadn't Googled the side effects of my medication
But speaking of medication, I wish I hadn't googled people's experiences with it. Because for every person who has had a severe reaction, there's plenty who feel absolutely fine. And while being vigilant for side effects is important, you can easily become terrified and start imagining that you're experiencing things you've read about! I remember taking my first biologic and being on tenterhooks waiting and waiting for something terrible to suddenly happen... But nothing did!
3. I wish I'd let people know I was struggling after my Crohn's diagnosis
I carried on as if nothing would change for a long time. In fact, I carried on as if things were better because I knew what I was dealing with now. But it wasn't, it was hard and I wish I'd been more open. I wish I'd said I couldn't come out that day, that I was scared, that I couldn't eat anything on the menu without being terrified of a bathroom trip and that I needed rest.
4. I wish I'd found an online community of IBDers earlier
One of the best things I did was write about my condition and meet a whole community of people like me. The internet has truly been invaluable to me. There's nothing like chatting to people who get it. So use this invaluable resource to find your fellow patients and connect with them.
5. I wish I'd realized how serious Crohn's was
I don't think I truly realized how life-changing my diagnosis was at first. I was just so happy to be diagnosed with something so I could get better and my life would go back to normal. I wish I'd realized how serious the condition was but perhaps I needed time.
6. I wish I had therapy to help me cope with my diagnosis
I really think everyone should have therapy upon diagnosis and whilst I eventually did this, starting much earlier would have helped me accept and manage my condition from the get-go.
7. I wish I'd realized every day is a new day
With this illness, every day is a new day. A flare won't last forever, however much it seems like it at the time. It does get better and easier; whether it takes days, weeks, months or years. You will have days when you feel like you are winning. Some days I forgot to appreciate each day for what it is, rather than feel as if I was endlessly trapped in a flaring cycle. Taking it one day at a time is all you can really do.
8. I wish I'd never taken remission for granted
But similarly, when I was finally in remission, I wish I didn't take it for granted because things can change so so quickly. And often, we can soon forget what it's like to be sick; so we might not be as vigilant in taking care of ourselves, miss those little signs that things are heading downhill, and act like we don't have a chronic illness. We forget it's an ongoing part of our lives and then... bam! When a flare hits, it knocks us down sick because we didn't see it coming. Don't spend every day waiting for a flare to come but be mindful that remission should never be taken for granted.
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