A Childhood Crohn’s Disease Diagnosis
Artwork by Richard Kahwagi. Photos by Sam Burriss and Ivan Bandura on Unsplash
It’s been five and a half months since my resection surgery, and it’s given me a lot of time to look back on my last 11 years of living with a chronic illness. A childhood diagnosis was bittersweet and dizzying; although it greatly complicated my early years, it also meant early and accessible treatment from a team of dedicated pediatric consultants.
Crohn’s Disease is an inflammatory bowel disease (IBD) which can affect the entire digestive system, but most commonly the gut. Inflammation is caused when the immune system attacks healthy tissue in the body. Symptoms mainly include abdominal pain, diarrhoea, loss of appetite, fatigue, and weight loss. Severe, long-term inflammation can cause narrowing of the intestine called a stricture. Strictures can form due to scar tissue repeatedly healing over inflamed areas of the gut, causing the intestine to eventually narrow. Surgery is usually a last-resort treatment for strictures. Crohn’s is an invisible chronic illness with no cure, only a range of medications and treatments to control flare-ups and achieve remission.
I’m sure you’d believe me if I told you I had to grow up even faster than my peers, but it took me years to truly understand the gravity of this chronic illness. The procedures, blood tests and hospital admissions all felt like something I had to do, no questions asked. I outgrew that perspective as I got older, of course, but began to resent the position I was in. On top of balancing visits to hospital, school and keeping up with life in general, I couldn’t even make it an hour without feeling like my gut was being tied into knots. Throughout it all I had my diverse team of consultants who I saw regularly and continued to support me.
Before I knew it, after years of bouncing from one combination of treatments to another, 2020 had arrived. I was already a few months into my second year of A-Levels and the workload was horrible. I was waking up early to travel to the other side of London for my lessons and the stress I was putting on my body wasn’t making things any easier. I was always tired, and I couldn’t eat or even sit up at my desk for long periods without that same painful knotting sensation. Eventually, my appetite had completely disappeared as a result of all the pain and my weight began to drop. I had tried to assure my consultants that with calorie supplements and time I would sort things out; that there was no need for admission. Early March of that year, just before the first COVID-19 lockdown, would be my first of two admissions into hospital within six months and I’d be back again a year later at the same children’s ward for surgery.
My admission this year lasted 2 months - my longest ever. I spent the first half strictly on parenteral nutrition in preparation for surgery whilst the surgeon’s team planned their course of action. It was all unexpected and hard to conceptualise what was going to happen while I was waiting for a surgery date. Of course, I trusted the team of professionals taking care of me. A moment I can describe as slightly surreal was meeting my surgeon for the first time, who had a calm and methodical presence. A West African man - just like my dad. Looking back, I can’t definitely say that having a surgeon who was also Black made me feel any better about the situation I was in, but I was glad. Seeing my family and thus, seeing myself in my surgeon was a type of comfort I’d never felt before.
Post-op wasn’t any easier. I woke up with an epidural and was later given a PCA (patient-controlled analgesia) a couple days later. As time went on, the painkiller made me nauseous, and I was going out of my way to avoid using it. I had told a nurse, but she simply encouraged me to just use the PCA. I threw up shortly after. By night-time, I was throwing up repeatedly and the pain was becoming harder to endure. The pain management team had been alerted, and I was seen by two consultants through the night, but little was actually done. It took the rest of the night, and most of the next morning for my painkiller to be changed. My pain didn’t subside even after being weaned off the painkiller. I spent a week with horrible abdominal pain and vomiting before an x-ray examination using contrast dye, called a loopogram, revealed an internal hernia due to some stitches coming undone. That week I spent getting off the epidural, dealing with the PCA trouble, getting out of bed, walking again, all the pain, nausea, and discomfort - all that hard work was gone. By the weekend, I was sent back to theatre and set to do it all over again.
Among the many things I woke up attached to post-op, was a stoma. In order to let my gut heal well, I was given an ileostomy - where the small intestine is diverted through an opening in the abdomen. This opening is called a stoma. A bag is worn over it to collect the output that would normally pass through the rest of the gut. Many people have stomas; more than you would guess. My stoma was a prospect of surgery I was most anxious about, it was hard to picture what life would be like with one. It’s nowhere near as difficult or different as I pictured and I’m supported by a team of stoma nurses, who taught me everything I needed to know. However, one disappointing aspect of managing my stoma is getting my supplies. The first time I ordered my own supplies I was told they had run out of black bags. So, when I next saw my stoma nurse, she was confused to see a beige bag on my stomach. She explained to me that many of the bags produced are mainly made in a beige colour, as they don’t show up under white shirts. But for Black people, they do. I still can’t get all my stoma bags in black, even today.
I am the only black person I know who has Crohn’s Disease, and I would have given anything and everything to give my younger self someone who knew what it was like, who shared my experience. So, I share my experience through this blog for the possibility that someone who needs it, or someone who knows someone who needs it can eventually find it.
To find out more about Crohn’s Disease visit:
https://www.nhs.uk/conditions/crohns-disease/
