Catching up with Natalie-Amber

Hello to all my beautiful friends at Eakin,

I hope you have been looking after yourselves since we last spoke. Can you believe we are already in July and have only 5 months left of 2024! Honestly, time flies by and it can be so scary when we stop to think about it, but at the same time a reminder to us on why life is short and why we need to live life like every day is our last.

A lot has happened since we last spoke, I have suffered another flare up with my Crohn’s Disease, I have been to Rome with mum and I had the honour of hosting my first Self Acceptance seminar for Eakin Healthcare, which has created of my favourite memories made this entire year.

Flare up

So. since we last spoke, I have had two flare ups, one in the Philippines and this was due to the coconut water which caused a bug in my gut, the second was two weeks ago now and this was due to stress. Going on holiday if you suffer with IBD is scary for most of us, finding the right insurance can be pricey and stressful, but flying to another country where they do not know your health history can be daunting. I had spoken to my medical team and they were happy for me to travel with my boyfriend to the Philippines as long as I was very careful and had the jabs that were advised to me.

Thankfully I could have all the jabs advised on the list as none of them were live vaccines. The flight in itself was draining 11.5 hours to Hong Kong, a quick stay of 36 hours in Hong Kong trying to cram in everything we could in that time, followed by another 2 hour flight to Manilla the capital of the Philippine’s. I found this trip was one of the most amazing experiences of my entire life, seeing a number of Filipino islands and experiencing their culture was magical, however, travelling like this was sadly not for me, I was so unwell with fatigue, my body just could not take it.

When I had the flare up, I immediately panicked, my belly had swollen and looked like I was heavily pregnant, the pain was unbearable and no amount of painkillers even touched the surface. I started to panic due to being so far away from home, a few days like this I then started to go to the toilet, but like every single second and it was severe diarrhoea. I ended up in a hospital in Taglirban city on the island of Bohol, the treatment was incredible. Within two hours my stool sample results were back, and the consultant had seen me and gave me a check over. I was given some electrolyte medication due to being severely dehydrated from the flare and she informed me I had type of bacteria in my stomach but luckily it was passing. I have seen my own consultant in the UK since returning home and have had a MRI scan and I have a colonoscopy booked in. I was very lucky that the flare I had over there did not turn into a blockage. This again is why travel insurance is CRUCIAL. If you are however, wanting to find some general tips and recommendations for travel and insurance check out the IBD Passport website which was founded by a nurse who wanted to help IBD patients as she noticed lack of information out there for people travelling with IBD.

Rome

The city of Roma, my favourite city in the world. I love everything about Rome, the cobbled streets, the history, the food of course and not forgetting the Aperol Spritz’s. I always think Italian people are such fashionistas also and dress so beautifully. I travelled this time round with my mum and we visited the Vatican, Colosseum, The Forum and some hidden TikTok gems I had found. Before we entered the Colosseum, I drank some coffee stupidly and it really did not agree with me, I needed the toilet so badly, but the queue was huge, literally twisting around the corner of the building. Anyway, I have my ‘urgent can’t wait’ card in Italian, so should of used it because honestly, I have no control over my bowels and if I have to go – it’s find a toilet quickly or poop myself. I actually felt really anxious because of this long queue to try to find somebody to show them my ‘urgent can’t wait’ card so I could use the disabled toilet which was locked. However, there was no separate queue for that, and because I would have had to walk past everyone in the queue for the non-disabled toilets, I felt they’d have judged me because ‘I do not look disabled’. So, I risked having a huge accident in the middle of the Colosseum which would have resulted in the trip being cut short instead of stop feeling embarrassed to show my card out of fear of being judged. Now those who know me, know I am never actually somebody who would be afraid to say how they feel but I honestly do not know why I felt like this that day. I was talking to my mum about it after and she said the word for that is ‘ableism’. I felt because I did not physically look disabled to the human eye, they would judge me for needing to use that disabled toilet. This is where it it’s so important to remember that not every disability is visible, and we should not judge because as you can see it controlled what could have been such a simple situation for me.

Eakin Healthcare Get Together 2024

Every year Eakin Healthcare host a ‘Get Together’ retreat for their ambassadors and I was honoured to have had the pleasure to be able to attend this year’s one. Some of the other ambassadors have been online friends of mine since the start of my journey with awareness raising so to finally meet them in person felt amazing. It was also a huge moment for me as I hosted my first ever ‘self-acceptance’ workshop to help the other ambassadors on their self-acceptance journey with the changes they have gone through and experiences. It was such a beautiful two days and everybody there was so supportive towards me and each other. I unfortunately was also flaring and was on a course of steroids and still wearing nappies due to not being able to make it to the toilet. I knew if I was going to go anywhere wearing these nappies, this was the place because I was in a safe environment with my tribe, people who GET IT, people who have been through it.

The second day was photoshoot day and I helped build up some of the ambassadors confidence, supporting them by being their personal hype woman, I interviewed a few of them also and honestly, I came home so inspired, and so blessed to be surrounded by such beautiful people and privileged of spending time with them, we had fun creating some content too!

I am so grateful to be an ambassador for Eakin Healthcare, I may not have a stoma anymore, but it was a huge part of my life and always will be, it has made me the person I am today but also who knows what the future holds and I may one day end up having a stoma again as Crohn’s is so unpredictable. Eakin/Pelican have always supported me and just because I no longer have a stoma they still make me feel like I belong. I am part of the Eakin family and damn proud to be too and always will be.

So my beautiful friends, until we speak again in a few month’s time, I leave you again with my all-time favourite quote: ‘I refuse to be ashamed, when the alternative was not living to tell the tale’.

Natalie-Amber | @natalie_amber1 x x