Crohn’s & Colitis Awareness Week: Living with Crohn’s Disease

Grace Randall, Project Manager at EW Group, discusses her experience as a person living with Crohn’s disease and how employers can support their employees suffering with this condition.

It’s Crohn’s and Colitis awareness week from 1 – 7 December 2021, and as a person with Crohn’s disease, I am passionate about reducing the stigma attached to these chronic conditions. In this blog, I share my story to help, support and inform others living with irritable bowel disease (IBD) and raise awareness with those who may not be familiar with it.

My experience of living with Crohn’s disease

I first started experiencing symptoms when I was 23 years old. I had never previously had any issues at all with my stomach or digestion, and I wasn’t even aware that Crohn’s disease existed. It was a frightening time as I experienced blood loss, severe stomach pain, and fatigue.

As symptoms are typically ‘embarrassing’, I didn’t tell anyone about my struggle and prolonged seeking medical help for months, which caused my health and symptoms to worsen. I finally found the courage to tell my parents and of course, they persuaded me to book an appointment with my local GP. They fully supported me throughout my entire diagnosis journey and continue supporting me every day as I live with the condition.

It took one year for me to receive an official diagnosis, which included multiple doctors and hospital appointments, a colonoscopy, multiple courses of steroids, and an MRI scan. It was such a relief to be able to give a name to my pain, and this meant that I would be finally able to move forward. You are the person who knows your body best, and I encourage anyone to keep pursuing medical help if something isn’t right, although it can be a frustrating process you must be persistent. My recommended treatment was taking immunosuppressants to help reduce the activity of my immune system. The daily medication that I take is azathioprine.

I’m delighted that this medication has been very successful for me, and I haven’t experienced any side effects. I support my medication by exercising five times a week and following a nutrition plan which suits my disease. Eating smaller meals throughout the day seems to work for me, and I’ve also removed dairy from my diet which has had a big impact. However, IBD is such a personal disease and it’s important to stipulate that my treatment and lifestyle may not work the same for someone else. It’s certainly been a learning curve for me, and it has taken a trial-and-error approach over the past five years.

I have given my disease the name ‘Mr Crohn’s’ just to try and add some light to my experience with the condition – he’s very fickle! Some days, he might flare up due to certain foods and then not be phased by them the following week or month. I’m in a very fortunate position that I have been in remission for over a year now, which is a position I never thought I’d reach at the start of my journey. I was discharged from the dietician department at the hospital in October 2021 which was a big achievement!

The impact of the COVID-19 pandemic on my Crohn’s disease

The impact of the coronavirus pandemic caused a huge strain on my disease. Shielding was very detrimental to my health and in all honesty, it was one of the biggest mental health struggles I have experienced. I live alone in a one-bedroom flat, and the lack of social interaction was very difficult. FaceTime was a great way of remaining connected with my friends and family, plus regular phone calls and socially distanced door stop visits. Being able to work from home during this time really helped to focus my mind too. As a person with a very active lifestyle, not being able to go outside for walks or train in the gym completely threw my routine off balance. Stress is one of my main flares, so this experience caused some of my worst symptoms to date. However, I managed to overcome this very challenging time which has made me more resilient.

Being diagnosed with Crohn’s disease has been difficult, but it’s become a part of who I am. I am not defined by my disease, but my lived experience has helped to shape the person I am today, and I am truly proud of myself. It has given me an appreciation of the issues people living with invisible disabilities face, and the discrimination they may experience. No one can see the depression, anxiety and stress that these conditions cause, but they are just as present and valid as anything physical and awareness of this needs to be improved.

How employers can support employees with Crohn’s disease

Businesses can support this community by offering flexible working, which helps to remove the stress of finding time to attend regular health appointments (such as blood tests to help monitor the impact of medication). It is also great to have the option to work from home when experiencing a flare up or feeling unwell, as you need to be mindful this group tend to be more vulnerable to common illnesses. These options and forms of support will be appreciated and create a better working culture.

I’d like to just give a special mention and thank you to my wonderful parents, I am beyond grateful to have them as such a big part of my life. They’ve been by my side during every health appointment, blood test and difficult flare-up. They always provide me with unconditional love and support and I couldn’t have got through my journey without them.

To learn more about Crohn’s and Colitis Awareness Week, you can visit the website for further details here: https://www.crohnsandcolitis.org.uk/get-involved/awareness-week-2021