How would you describe Crohn's Disease to someone who's never heard of it before?

As someone living with Crohn's Disease and multiple other illness/disabilities, I raise awareness through my social media platforms and I am asked quite a lot what Crohn's is. I try to be careful with what I say as even though it is chronic and very difficult to live with, I try to focus more on the positives.

I say to people who ask that Crohn's is a part of Inflammatory Bowel Disease, and it affects the individual from the mouth all the way down to the digestive system and the rectum. I talk about the different symptoms and how it can spread around the gut and different areas of the body as that's what has happened to me.

I then move onto the positives, describing that you can live a very normal life with Crohn's if it's controlled with the correct combination of treatments. I also like to remind people that everyone's body is different and will react differently to medications. Going through the trial and error stage is probably the hardest part, as it not only affects your physically health but can have a lasting effect on your mental health. Everyone's experience with Crohn's Disease is unique, and their personal journey with the illness shapes how they think, feel, and describe living with it daily.

How do you manage flare-ups and maintain your overall health while living with Crohn's Disease?

Since 2016 I would say my Crohn's hasn't been as bad compared to what it was at the beginning, from 2012 through to 2016. I had to endure an operation to remove a large part of my colon that was massively inflamed due to the disease, and my body just wouldn't react to any medical treatment I was given. Even my stoma bag at first.

I do still get flare ups which seemed to be happening every couple of years at first, but now it's every couple of months. I believe this is due to my Crohn's being very active again in my rectum as it's massively inflamed. The flare ups have been so bad that my Crohn's spread to my ovaries and completely poisoned my right fallopian tube. A huge abscess grew off my fallopian tube and stuck to my bowel. The pain was unbelievable. So, I had to have my whole right ovary and fallopian tube removed. What made it worse was because my body has built up a tolerance to pain medication, the medical team could not control my pain and I was left screaming in agony for 15 hours straight until it just randomly stopped.

Living with Crohn's today, I still get excruciating pain in my gut, round my sides. Pain that the medical team can't pin point or explain. I have issues with vomiting during the night as well which leads me to being anxious affecting my sleep. This leads to fatigue, tiredness and major depression.

Have you encountered any challenges or stigmas related to Crohn's Disease, and how have you addressed them?

Living with a chronic illness even today, sadly stigmas and discrimination are still rife. But so far I have only experienced it in the workplace, once was in a volunteer role which shocked me the most.

Back in 2019, I joined a course from my local council to help people with different disabilities get into work at the local hospital. I was working as an intern and doing a course at the same time. There were a few occasions where I was called into the office for multiple absences, which was due to my health. I was told, 'No proper employer would employ you', 'we appreciate the impact of your illness, but we can't have you here if you won't commit'.

I understood what they were saying, but at the same time they were well aware of my situation. There were class meetings on more than one occasion where the lectures would say, 'Life doesn't owe you anything' and 'You need to put more of an effort in' etc etc. I even got a student misconduct warning for walking down the hall crying due to pain in my stomach, and for not communicating enough with my co-workers about what was going on. I was even pulled up for going to the toilet too many times, which unfortunately, when it comes to Crohn's you don't have a choice in the matter.

After only being there 5 months I had enough and decided to leave and went straight to the council to put in an official complaint. I was furious as they were not willing to take it any further or listen to me so nothing else happened. It still angers me to this day that they got away with that behaviour, but I have moved onto bigger better things and it's their loss.

What advice would you give to someone who has recently been diagnosed with Crohn's Disease or suspects they may have it?

I have had Crohn's for 12 years now, and at the beginning when I was diagnosed it was hardly heard of. But today, it is getting more common and people are still scared to talk about it. The best advice I would give someone suspecting they have IBD is to be honest about their symptoms. Do your own research and never ever be embarrassed or scared to talk about your feelings and the mental and physical pain you feel. Also, make sure you get involved with the IBD community for more support. That way you will always have someone to talk to that understands what you are going through, as it is hard to connect with people that don't have a clue what it's like. Keep yourself as stress free as possible, and don't put yourself in situations where your stress or anxiety could spike.

Sadly, today a lot of people are not receiving the proper care they need due to the short comings of the NHS. So, the last bit of advice I will give is, keep fighting for your rights, keep at the medical team, do what you need to do to be listened to. At the end of the day, you ALWAYS know your own body and never let anyone tell you differently, even the doctors.

How do you advocate for yourself and others living with Crohn's Disease, and what changes would you like to see in terms of awareness and support for these conditions?

Even though I have lived with Crohn's for over a decade , I only started to advocate 7 years ago. At the beginning, after I had my stoma bag, I decided to try freelance modelling. Focusing on awareness for Crohn's Disease and ostomy bags, as at the time there wasn't much representation. So, I thought it would be something different and attracting. After all, a picture can speak a thousand words.

The response I got on my social media was so positive and unexpected, as I got contacted from women's magazines and asked to contribute to articles detailing my journey. This was a proud moment for me and my family as it was helping a lot of people. But there's always a risk involved - cyberbullying, internet trolling etc. Which I did get and still do even more so this day. But I believe this is because I have come a long way since my first modelling shoot.

After building my modelling portfolio, I decided to take a chance and try to get myself an agent. In 2021 I was signed with Sonia Scott Mckay at All Talent Agency in Glasgow. I've already had my first modelling gig for the Scottish Government for an 'Invisible Disabilities' shoot. I was so chuffed.

I now do acting and modelling professionally. Doing so has opened up more doors and exposed me and my story to a wider audience. It's given me an opportunity to use my voice on different platforms. I have had 9 interviews to date. The discussions are usually focused on my story, my health journey, what Crohn's is and how it affects a person. I also talk about what changes I think need to be made, especially when it comes to medical care.

In the next few months, I will be starting filming for a documentary that will be about my journey with Crohn's Disease, my other medical conditions and disabilities. This will be the biggest achievement yet for my advocacy work, and who knows where it could go. Exciting times ahead.

What do you hope from the future?

In the future, I hope people living with Inflammatory Bowel Disease have access to more treatment options and more appropriate medical and mental health care, for there just isn't enough.

When we need to go to the doctor because of our symptoms we shouldn't need to worry about doing so for fear of being fobbed off or 'EXAGARATEING'. I also hope for everyone living with a chronic illness that there will be more understanding so that no one has to live in fear of discrimination or stigmas. After all, our disabilities DO NOT define who we are.