The Chronic Diaries: Jack’s Ulcerative Colitis and Stoma Journey
Where are you based?
I live in St Albans, just north of London, having taught in the North East and China before moving back near my family.
What chronic condition(s) do you have? Please briefly describe what they are?
I have Ulcerative Colitis, which is similar to Crohn’s disease but affects primarily the large intestine.
What symptoms did you deal with before you were diagnosed?
No matter how well I ate or how hard I trained, I struggled to keep weight on. Playing sport at uni, I’d spend months building some muscle and putting on weight, then get ill and lose it all in a couple of weeks.
It may sound a bit graphic, but the main symptom (which I wish I’d got checked out sooner) was toilet urgency and having very loose stools. If anyone thinks it’s been going on too long to just be the ‘runs’, I’d encourage them to ask their doctor for a colonoscopy.
How were you diagnosed? What was your journey to diagnosis?
Throughout uni I had spells of rapid weight loss. Once I started teacher training in 2017, I was always rushing to the loo. By September 2018 it was taking over my life.
I saw countless GPs and got put on a waiting list for a colonoscopy. After ringing up every day to see if there were any cancellations, I finally got seen in November 2018 and got my diagnosis.
Did this journey have an impact on your daily life? Eg, dropping out of college, quitting your job/getting fired? etc
I was off teaching for months, in and out of hospital admissions. I quit my part-time job as a youth support worker as I couldn’t cope with the illness and the workload.
Are you on any medications? What side effects do you encounter, if any?
Before surgery to fit a stoma bag in July 2019, I tried every drug under the sun to avoid the operation. Steroids puffed my face up, stopped me from sleeping and gave me excruciating joint pain. Infliximab was scary and didn’t work for me. I trialed a new medicine, tofacitinib, which I’d seen mentioned in media, but eventually surgery was my only option. I saw it as a last resort, but looking back, I’m so glad I had it and I’m now medicine-free.
What symptoms of your illness do you deal with on a daily basis (even when on medications)? How do you deal with these?
Dealing with a stoma bag is time consuming. I empty it 5-7 times in a 24hr period, and nearly always need to get up once in the night before it explodes. I change it every time I shower too. It’s fiddly and I don’t like how I have to hunch over my stomach to sort it, but it’s a lot better than feeling really rough every day.
What occupation do you have? How does your illness effect your job/employment?
I’m a science teacher and a writer. When I’ve been my most ill, teaching has been impossible. I love my job and miss seeing my classes when I’m away, but writing has kept me sane in the times I’ve been bedridden.
How does your illness impact you mentally?
At my lowest points, when I felt getting back to ‘normality’ was unattainably distant, I had suicidal thoughts. Sleep deprivation really messed with my head, and my memory in particular.
Exercise keeps me mentally healthy as well as physically, so when I’ve been incapacitated it’s taken a toll on my happiness and stability. I’ve been angry, depressed, all sorts. But I’ve come out the other side now; it’s definitely made me question my resilience to long term illness. The stoma bag has given me my life back, both in terms of physical and mental well-being.
How do you keep motivated dealing with your chronic condition in your daily life?
Outside of writing articles and books, I also put pen to paper whenever my thoughts feel scrambled. It helps me make sense of things, and I often end up writing goals to keep me on track. It doesn’t matter I don’t always achieve them, but it helps to look back and see what has been achieved, even amid all the chaos of the illness and surgeries.
Is there any advice you would like to give to people who are on their chronic illness journey?
Demand help from the doctors incessantly until you get a result. I spent too long returning to my GP, being fobbed off and falling more and more unwell on a waiting list. The advice to call up continually checking for cancelled colonoscopies was what eventually got me my diagnosis.
How do you encounter people having your illness? Do people understand? Are they ignorant? What level of difficulty do you have with this, if at all?
Most people are really nice about it. Some are really curious and I’m always happy to explain (although it led to a few unsuccessful dates that turned into biology lessons on the digestive system back before I met my girlfriend).
I’ve only had one person be a complete arse about it (fittingly) as far as I can remember. I turned that into a short story and it was shortlisted for the International Perito Prize. Every cloud, eh!
Is there anything you want to say to these people? Or the general public who do not have a chronic illness?
Describing UC I’d ask people to remember how drained they felt the last time they had the runs, and then to imagine they had that urgency and pain every single day, for years. That’s at work, socialising, sleeping, trying to exercise, every day like that – and to be told there was no cure. If they imagine that then it’s pretty clear why having a stoma bag is worth it!
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