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

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

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

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!

BUT BEFORE YOU DO – WHY NOT SHARE THE LOVE AND PIN THIS POST?

A couple months ago before the Coronavirus pandemic blew up, I went on a small trip around Europe. During that time, I thoroughly indulged myself in chocolate and cheese in Switzerland (note: I’m intolerant to dairy), along with partaking in other activities which usually cause gut irritation (constantly travelling, having no sleep, etc). When I finally landed in Cologne, my stomach was in turmoil – and I ended up spending the whole trip trying to get back to my former self.

In Crohn’s Disease, a flare-up is a sudden reactivation of symptoms where inflammation becomes more present in the body – and by my own carelessness and gluttonous nature, I had provoked it into returning. I had several weeks to really focus on bringing that inflammation down, and after just a few days, my stomach had returned to normal (or at least, as normal as it can be for someone with Crohn’s).

This is how I did it.

TOOK IT EASY

My travel partner and I became the queens of slow travel once we’d finally landed in Cologne. Aware of the fact that we hadn’t relaxed properly in about a week, we took our time visiting museums and bookstores, and interspersed each visit with long stunts of cafes and rest. We took everything real slow and were careful not to overdo it – after such a hard couple of weeks on my stomach, it was beneficial to just take some time out to really listen to my body.

SWITCHED DIETS

After the dairy overload in Switzerland, I decided to switch to a diet that would be kind to my digestive system. I cut out food groups that are known to cause inflammation, and introduced more gut-friendly foods. My diet was low-fibre, but I still made sure that I was getting at least the recommended amount of vitamins. In times of flare ups, it’s hard to make sure that you’re not bordering on malnutrition, so it’s even more important than usual to keep re-introducing the good stuff to your body.

MADE MYSELF COMFORTABLE

Instead of bunking down in a stressful little hostel, we stayed in a private room in the gorgeous Koncept Hotel. This directly contributed to making sure that I got enough sleep each night, so that I would give my body a chance to heal during REM. Staying somewhere comfortable and avoiding stress is a key thing to keeping inflammation down, slowly helping to draw myself out of the flare up. Another key thing is to not stay sedentary – so little strolls and spending time dedicated to moving about is just as important as slowing down and taking it easy.

TOOK EXTRA MEDICATION

Luckily, I always pack more medication than I should need for this very reason. Not only does it cover my bases in case I lose a bag at the airport, but it also means that I can double-dose my medication when I feel like I need it most. Depending on the type of medication you take, this may not always be possible – but it’s worth checking with your doctor beforehand to see if you can double the dosage or incorporate another drug into your diet, should you desperately need it.

WATCHED WHAT I DRANK

Throughout the whole trip, I made sure to avoid alcohol (especially the much-loved German bier!), as the carbonation and acid would irritate my digestive system and contribute even further to the level of inflammation of the stomach lining. I also avoided fizzy drinks (due to the sugar and carbonation) and anything heavily caffeinated, instead sticking solely to water and green tea.

STAYED HYDRATED

Making sure to stay hydrated with bottled water and calming teas such as jasmine and camomile, I was able to both make up for the liquids I was losing, along with helping move on the toxins forming in my body and keep my digestive tract clear and ready to heal. It’s one of the most basic things to do when you’re a sufferer of IBD, and yet its importance is often overlooked.

BOOKED A DOCTOR’S APPOINTMENT

Whilst it didn’t seem necessary to book an appointment in Germany for the short time that I was there, I still made sure that I would have an appointment waiting for me back home. Doing this meant that I was prepared with what to do next, making sure that I could bring myself back up to top health as quickly as possible

Crohn’s Disease is an auto-immune disease affecting every part of the body – from the stomach, to the joints, to the skin, to the eyes. Unfortunately, I seem to have every little side-effect relating to Crohn’s, which can make it quite an overwhelming illness at times. However, when my dream is to become an explorer, I really can’t let a little thing such as having an incurable disease stop me. Some things are simply more important.

If this has educated y’all a little more about what it’s like to travel with Crohn’s or has helped you in any way, let me know in the comments below!

BUT BEFORE YOU DO – WHY NOT SHARE THE LOVE AND PIN THIS POST?

I have been sat in front of my Macbook for hours, wondering what to write and how to write this post, knowing that after years of wanting to talk about my Crohn’s to a wider audience, I still don’t have the words to describe everything. Now, I’ve come to the conclusion that if I don’t write this post now I’ll probably end up never writing it at all, and that would be an even bigger shame. Alas, here I go – I have an incurable, lifelong disease. And I can’t eat chocolate.

WHAT IS CROHN’S DISEASE?

To put it simply – Crohn’s Disease makes you sh*t. A lot. Classified as a form of IBD, your body is constantly attacking and trying to reject all the healthy cells in your body (from the digestive system to the eyes, mouth, etc) by mistake. No kidding. No one knows what causes it, but it makes your intestines inflame and tries to ruin your life. I try to stay away from Google as I’ll tend to come across a bunch of stories with titles such as “It’s not classified as terminal, but…” and people talking about how their lives are over and how they’ve developed bowel cancer and perforations and other horrible things because of Crohn’s. Honestly though, so long as you can cope with all the side effects (from hair loss to rashes, constant fatigue to malnutrition)  and the like, you’ll be fine. It’s frustrating and exhausting, but liveable.

MY STORY

It turns out that I’ve always had Crohn’s, but it was only diagnosed in 2014 after I went through an insane amount of testing with almost all the doctors putting it down to stress. I was on a crap ton (haha) of drugs for a while, averaging at about 16 tablets a day for a bit, eventually having to leave school because my attendance was way below even 10%. I wouldn’t be able to summon the energy to leave my bed most days, as despite the medication and diet plan I was on, my body wasn’t absorbing anything and I was coming out pretty malnourished.

MY FAMILY THOUGHT I WAS GOING TO DIE

After a while of being high on meds, I stopped falling into decline and started steadying out a bit, until another bout of tonsillitis hit and my GP told me to take Erythromycin. I had such a big reaction to the medication that before I knew it I was hospitalised again, growing more and more ill each day. I tend to overdramatise a lot of things, but my family’s concern isn’t one of them – my mother recently confessed that she thought I was going to die during the worst week.

The medication made me see things and stop feeling things, and for a while I was numb and walked about in a zombie-like state. I can’t really recall what happened during those days, but I remember wondering why I felt so disconnected from the world, dropping to a weight nearly two stone lighter than I already was.

RECOVERY

LOOKING BACK

The worst part about my journey with Crohn’s (ignoring, you know, having Crohn’s) was that I was constantly turned away from doctors who didn’t even believe me. It took months of debilitating illness until one doctor clocked one of my notes and finally brought me in for testing. If by writing this post even one person reads my words and goes “wow, that sure does sound a lot like my sister” or the like, then it’s been worth sharing such a deep part of myself on the internet.