How would you describe living with Crohn's Disease?
Living with Crohn's Disease is unpredictable; you never know what is around the corner regarding life. Most people can make plans safe, knowing nothing too major will derail those plans. Living with Crohn's Disease has made me more cautious; this caution is something that has developed over time because often when I least expect it, my Crohn's will strike, and then what follows is weeks of hospital treatments, conversations with my nurses and invasive investigative procedures like Colonoscopy's, Ultrasound and MRI scans.
Another keyword for me would be frustration; this stems from the feeling that I sometimes have no control over my life. Part of this extends to the ongoing hospital treatments etc. but also just the symptom management. Nothing frustrates me more than if I am looking forward to something and have a solid plan in place, and then something Crohn's related happens, and everything has to be rethought. It often leaves me feeling like I am also letting others down, which is a lot of guilt and pressure to contain. I have missed things as simple as a cinema trip or meal and significant events such as friends' weddings.
Hakeem
Living with Crohn's Disease
The last few years have also redefined the term 'invisible illness' to me; I understood the term to be that some people have a condition you cannot see, and therefore, we should not judge (rightly so). But for me, invisible illness also means all of the lengths that we, as IBD patients, subconsciously go through to protect the people we love from the fallout of our condition; a lot of the time, if someone tells me they had no idea I had been unwell or that I am living with an illness I am reminded that it is in part due to the pressure I have put on myself at times not to burden anyone else with the challenges I am facing.
What did you find most challenging about managing your Crohn's Disease during university?
I am working through the final months of my post-graduate diploma in Mental Health Nursing; despite it being my second time going through University, there are only a few similarities. The first time I was unwell but unaware that I had Crohn's Disease, so going through University with a diagnosis feels a bit more structured but still presents challenges.
Firstly, I try to be as open and honest as I can about my illness and how it can affect me. Some days I feel able to do this without incident; other days, I start feeling fed up with having to explain myself.
My second point: appointments. I am so grateful to have a team that is highly proactive with my care, any time there is an issue, they are pretty swift to investigate and solve problems with me, but this often means taking time out of University and Placement to attend the hospital for investigations.
A nursing course is fast-paced; the post-graduate course takes this to another level. I ping-pong between blocks of University and then blocks of placement, and every time I miss a day of either, I have to make this up in some way. Earlier this year (January 2023), I began to have worsening IBD symptoms after having a successful year on Stelara injections; after further investigation, it was understood that the Stelara had stopped working, and then beyond that, it was discovered that I had a luminal stricture. I then had to move on to my 3rd biologic and began Vedolizumab infusions; as simple as it is for me to explain that in a couple of sentences, reaching this conclusion took five months of ill health on and off and various hospital appointments. This period meant that I had been delayed in qualifying; what would have been an August 2023 finish has now become October 2023 (again, frustrating).
Being diagnosed at a young age, how do you feel about the future?
Being diagnosed at a young age has been a bit of an emotional rollercoaster. Some days I can take it in my stride and face the challenges of the day; others, I find myself grieving for the life I thought I would have and wanting to close off from people.
My diagnosis was nearly six years ago, but my symptoms had been prevalent for almost two decades, so it is strange to me now that I still feel a loss in terms of another life because I have had so many periods of being unwell before the diagnosis. I think that because during those periods, I was often dismissed as anxious or hypervigilant, a part of me still is coming to terms with my diagnosis.
Despite this, I do feel hopeful for the future; I think my hope stems from some of the positive stories I see via the Crohn's and Colitis UK website and the forum on Facebook. There is a real sense of community, and seeing others lift each other and provide a safe space for us all to talk things through is empowering. I also feel grateful to have such a great support network in my partner, family, friends and gastro nurses at The Whittington Hospital.
What advice would you give to others in a similar situation to yourself?
My advice to others in a similar situation to mine would be to be as honest as you are comfortable being with people; sharing our stories (good or bad) with people goes a long way towards educating people that are unsure what Crohn's Disease is and helps alleviate the stigma surrounding the disease.
It can feel daunting and unfair that we should have to do this, but once I started opening up to people about what I face day to day, my confidence grew.
You need to be a bit selfish sometimes; put your health first. For many of us, the knee-jerk reaction when it comes to Inflammatory Bowel Disease (IBD) is to worry about how whatever may be happening to us will affect those around us, our work or the social event we were supposed to attend. Whilst those worries are valid, all it does is add extra weight to the mountain of stress that is already on our backs.
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