Getting a call from your doctor on a Sunday can never mean good news. That was how I was informed I had inflammatory bowel disease (IBD) It started back in October 22. I knew things weren’t well and I started having issues in the bathroom. I saw my doctor and we began the routine tests.

Following the results showing I had IBD we completed further tests and began the standard medication, steroids, to try and relieve my symptoms. Further investigation revealed I had Crohn’s disease. I had inflamed tissue in my large intestine. Routine treatment and medications did not do much to resolve my symptoms, rather my condition began worsening. My specialist recommended I try another form of treatment called sulfasalazine (DMARD).

However, my body likes to be different. Following a fortnight of isolation, due to Covid-19, I started to develop a rash. I woke up the next morning with a temperature of 40 degrees and the beginning of a spectacular, rare allergic reaction. I was held in hospital at the RAH for 12 days. Whilst in hospital and after various investigations and being treated by four teams of doctors from different disciplines, it was found that I was experiencing DRESS- Drug reaction with eosinophilia and systemic symptoms. This resulted in me looking like Violet from Charlie and the Chocolate Factory and closely resembling the red Teletubby. I barely remember half my time in hospital as I was delirious.

Stephen while in hospital.

Once I was out of hospital, I looked as though I had been badly sunburnt and could not work for a further two months whilst I recovered yet was still experiencing my Crohn’s symptoms. Considering that I was not responding to medication or was highly allergic to it i was then placed in a medical trial.

This gave me access to a biologic medication (or a placebo), which would help me control my symptoms. I then began the routine of every 4 weeks going to hospital for a 2-hour infusion. This was eventually replaced with self-administering 3 injections. With this my symptoms subsided, and my results look positive. Until they didn’t at the end of 2022 my symptoms rapidly increased and I found myself enjoying a hospital visit once again. A call was then made to place me on a different biologic medication that was known to be effective against Crohn’s diseae. It worked and, now one year on, my 8-weekly infusion of Remicade, aka infliximab, assist me with controlling my disease. I also take daily medication which suppresses my immune system.

For each person with Crohn’s disease the symptoms and experience can vary. For myself, I had to visit the bathroom regularly and urgently. At its worst, I averaged 10 visits a day and was passing blood on each occasion. My mornings consisted of being doubled over in pain and I was bloated from the moment I woke up. I knew the location of every accessible toilet on my 20 minute drive to work, as I would regularly stop at least once and sometimes even twice during my commute. I planned my life around being able to access the bathroom. I hated going out and socialising and was often embarrassed and anxious that I would always have to use the bathroom and worried what people might think. I feared public transport andm since my diagnosis, I am yet to step on an airplane. I was mentally prepared the have an operation to remove my bowel, even if I was likely to have to permanently use a colostomy bag.

Currently, my condition is being managed however everything is linked heavily with stress management. If my body experiences too much stress my symptoms return. If I am stressed at work, if I push my body too hard with exercise, or if I get sick, it can cause a flare. I also have to manage what I eat. I can’t eat spicy foods, drink alcohol, or consume protein powders, oily foods and anything too processed, as these can also cause issues. This disease has changed my life in ways I would never have anticipated. I went from working as a personal trainer, and considering competing in bodybuilding or powerlifting competitions, to being immunocompromised and having to be considerate of the stresses that I place on my body.

I still train, but at a quarter of the amount I used to. I have a card that allows me to access bathrooms, and I automatically locate the bathroom when I enter a building. I also ensure that I know where proximal toilet stops are on any given road trip. This disease has impacted all aspects of my life and continues to do so today. It is often misunderstood and overlooked, but I hope that my story helps bring just that little bit more visibility for others who are experiencing a similar story to myself, and are suffering from this invisible disease.

Stephen and his sister, Matilda.

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