Living with Crohn's Disease has been a journey filled with unexpected turns, challenges, and ultimately, personal growth. For nearly 17 years, I navigated through a maze of symptoms - from debilitating nausea and stomach pains to extreme fatigue and recurrent ulcers - all while being told repeatedly that it was "just anxiety." This experience of diagnostic overshadowing, where healthcare professionals attributed my physical symptoms to mental health issues, delayed my proper diagnosis until 2018.
The irony wasn't lost on me, that as someone who would eventually become a mental health nurse, my early experiences with healthcare were marked by professionals viewing everything through a mental health lens, rather than taking a holistic approach. While anxiety was present, it was largely a response to my deteriorating physical health, creating a vicious cycle that was difficult to break.
Perhaps the most challenging chapter of my journey came in 2023, when my health began to decline noticeably. Despite repeatedly reporting increased symptoms to my IBD team - more frequent bowel movements, cramps, bleeding, and exhaustion - initial investigations weren't conclusive. After persistent advocacy, a colonoscopy revealed a concerning stricture, which led to discussions about potential surgery.
During this already stressful time, I received the devastating news that my nan had passed away, and just a day later, my auntie Nyree (who was truly hilarious, and brought joy to many people) also passed. When I attended the surgical consultation that same week, I was overwhelmed with grief but I couldn't bring myself to express this to my medical team. I knew if I started to speak about these losses, I would crumble. Looking back, I realize this profound grief likely clouded my ability to fully process the gravity of the surgical discussions. What was presented as a straightforward procedure with a 6-7 week recovery would turn out to be something far more complex. How different the reality turned out to be.
The surgery revealed a severity of disease progression that no one had anticipated - a "fist-sized" mass of hardened intestines that required removal. What followed was a medical emergency that nearly cost me my life, resulting in an emergency second surgery and an ileostomy.
I remember waking up dazed and confused, only learning about my stoma when I overheard two healthcare workers warning each other to "be careful when moving him because he has a stoma." It was a jarring way to discover such a life-changing development, though I understand that the healthcare staff were doing their best in challenging circumstances.
Hakeem
Living with Crohn's
What I'm about to share reflects my own journey and challenges with having a stoma - each person's experience with Crohn's Disease is entirely unique.
My fear of having a stoma was shaped by contrasting narratives - the media's oversimplified portrayal of immediate triumph and adventure after stoma surgery, and my nan's honest accounts of the real challenges she faced. With limited exposure to stoma education during my nursing training, these conflicting messages created an intense fear that turned out to be neither as devastating as I had imagined nor as simple as sometimes portrayed.
Living with a stoma was one of the most challenging experiences of my life. The first time I saw my own bowel protruding from my stomach was particularly traumatic, especially without any pre-surgical preparation for this sight. Everything moved so quickly that I often felt I couldn't catch up mentally with where I was physically. I faced constant battles with dehydration, severe weight loss, and liver damage. The adhesives caused painful skin reactions and sores, while nightly leaks disrupted both my and my partner's sleep.
During this challenging time I was incredibly fortunate to have my mother, a registered nurse with stoma experience, who now manages an IBD infusion suite. She put her own life on hold - even while processing the loss of her mother and sister - to stay with me for a month, teaching me how to manage the stoma and my overall wellbeing. Despite my fears and initial struggles, I pushed myself to venture out locally whenever my body allowed, although this courage was tested by several public leaks that did occur. My partner also showed extraordinary dedication, overcoming his anxiety about hospitals to attend a session with a stoma nurse so he could help manage the stoma if needed.
One of the most frustrating aspects of having an ileostomy was hearing people say, "it saved your life" whenever I expressed struggle or frustration. While true, this dismissive response failed to acknowledge the complex emotional and physical adjustments required. As a healthcare professional myself now, I understand that you can never truly understand what it's like to live with a stoma unless you've experienced it personally.
Even after my ileostomy reversal, the journey wasn't over as I had assumed it would be. Like many others who undergo this procedure, I was left with a literal hole in my stomach that required packing and dressing every two days. This wound care continued for about two months, persisting through the Christmas period. Despite these challenges, I pushed myself to attend concerts and events, determined to build up my strength for returning to nursing placements in early 2024. In January 2024, I returned to university and successfully completed my final practice placements, achieving my long-held goal of becoming a mental health nurse. I hope to begin therapy in 2025 to process the effects that 2023 has had on my mental health.
Living with Crohn's Disease comes with an inherent guilt that's difficult to explain. Missing important events, taking time off from university and placements, and constantly having to consider toilet accessibility in every situation takes its toll. Even during my nan and auntie's funerals, I had to meticulously plan everything while trying to remain present - a stark reminder of how this disease affects every aspect of life.
Hakeem
Who lives with Crohn's
Throughout my journey, I've tried many treatments - from steroids to infusions, and self-administered injections. Most recently, my disease has become active again, leading me to start Rizankizumab. While it would be easy to give in to despair, I choose to hold onto those months when treatments were effective and maintain hope. I'm incredibly grateful to my family, friends, university staff, nursing mentors, and colleagues who have consistently provided a safe space for me to discuss my IBD needs. The members of the Crohn's & Colitis UK online forums have also lifted me through my darkest days. While this is my singular story, I wouldn't have been able to get this far into my Crohn's Disease journey alone.
This journey shaped my career path in unexpected ways, leading me to pursue mental health nursing to ensure future patients would receive the holistic care that I had initially been denied - care that recognizes both physical and mental health needs equally.
Today, as a registered mental health nurse, I maintain a list of things that once terrified me but I've overcome. It serves as a powerful reminder of my resilience and helps bridge the gap when facing new challenges. From being diagnosed with Crohn's Disease to living with a stoma, from managing grief while dealing with major surgery to completing my nursing degree - each experience has contributed to who I am today. It's been particularly meaningful to share a little of my nan's resilience through this story, and to remember my lovely auntie Nyree - both of whom are deeply missed.
Through sharing my story, I hope to contribute to reducing stigma and promoting understanding of both Crohn's Disease and mental health challenges. It's crucial that we continue having these conversations, acknowledging both the physical and emotional aspects of chronic illness, and supporting those who are navigating similar journeys.
