Health Adventures: Going Med-Free with Crohn’s Disease
Crohn’s Disease is a chronic autoimmune condition affecting increasingly more people across the Western world. It affects every sufferer differently and the lack of consistency in the symptoms makes it both difficult to diagnose, tough to live with and difficult to explain to non-sufferers.
I was diagnosed at 29. At the time I was told around 100,000 people in the UK suffered from Inflammatory Bowel Disease (IBD). Though NICE estimates that number has increased to only 115,000, anecdotally that number seems far greater, since everyone I open up to about my condition tends to have
an acquaintance, friend or relative, who also suffers.
Upon diagnosis, coming from a family who didn’t embrace medication as a first port of call, I was keen to manage my condition with as little medication as possible. If you’re reading this, you may be in the same position and I wanted to share my experience with this stupid disease to help guide you on the potential road ahead.
In April 2012, I did an initial stint on Nestle’s ‘Modulen’, an elemental diet, which for 12-15 weeks eliminates all solid food, in order to give the intestines the opportunity to heal and reduce the inflammation. The modulen also bought me the 90 days needed for ‘azathioprine’ to get into my system and take effect. ‘Aza’ as it’s known in this world, is the most common immuno-suppressing drug given to IBD sufferers. It was initially used to help leukemia sufferers manage their symptoms, since it’s a blanket immuno-suppressant.
Immuno-suppression is key in managing Crohn’s symptoms since the body’s immunity system is essentially attacking the bacteria of the intestinal wall—whether it’s good or bad. This misinterpretation by the body causing inflammation and ulceration, which can be incredibly painful. Everytime you eat, there’s a digestive reaction and that’s when the fun starts.
By suppressing the immune system, medical teams hope to reduce the inflammation and thus the pain of their patients. However, it is this blanket immuno-suppression that I found most off-putting. In addition to reducing the reaction to the gut bacteria, the body’s power to combat infections and viruses, such as the common cold, or STIs, is inhibited.
Unsurprisingly, I wasn’t a fan of taking aza. Weak nails, hair loss, I was upse
t to contract HPV, something they can vaccinate against befo
re the age of 26, since it didn’t clear up within the six months expected—taking over two years to clear up. I felt stigmatised and ashamed, in spite of how common this virus is.
A year in, I genuinely forgot to take the medication on a skiing holiday. Feeling well, I made the executive decision, to come off it completely once back home. I threw myself into elimination diets and fitness. Over the course of three years, I turned myself into a nutjob mentally.
I was putting so much pressure on myself to eat and train. In ways, I was fitter than I’d ever been, doing my first triathlon and completing the inaugural Ride100 London entirely alone.
The days I didn't ‘keep to my insanely strict rules’, I beat myself up, telling myself I was *causing* my Crohns—completely skewed thinking. My rationale was ‘I’m a smart person. I know the choices in my life determine the outcomes’. While true, such strict, dichotomous thinking does not allow for the human condition—the impulses, the emotions.
My life was going sideways—my career, my friendships and most importantly, my health. By the time I needed surgery, I was a complete mess; on SSRIs, feeling isolated and back on the elemental diet. Friends and family hadn't realised how unwell I'd become, since I was pretty good at masking it—that is, until an argument kicked off. At that point, I was disproportionately sensitive and aggressive; the frustration spilled into all the important parts of my life.
The afternoon I woke up from the surgery, I struggle to explain the feeling of unfamiliarity, or (should it be familiarity?) of waking up as myself
again. Like a long lost friend who was going to make it all ok again, I realised I had completely misjudged the link between depression and the disease. I continued to be unmedicated for another six months until I was told there was ulceration back at the resection site.
That was five years ago. After trying other meds with my amazing team, based on St Thomas’ hospital. I'm now on ustekinumab, a biologic injection taken on an eight-weekly basis. It targets specific inflammatory agents, which supports my immune reactions to other ailments. I have other daily meds to take because of the damage done by aza and I’ve come to accept that ‘pick your battles’ is more than just the sage advice of old wives. To go med-free, it's worth asking yourself what you want to do with the rest of your life.
If you want life to revolve around food (in an arguably controlled negative way), hospitals and fighting with yourself internally to 'keep yourself well' then the No-Meds Approach is a guaranteed route to success.
But pause before you do. Recognise the amount of responsibility you take on your own shoulders when you go med-free. I'm not saying it can't be done. People like Ari Meisel claim to have achieved it (though I worry such people, who have made a business of the back of being in remission, wouldn't admit to lapsing anyway.)
On meds, as I say, I have an eight-weekly appointment with myself for the injection, and the local nurse at my GPs for blood tests to ensure the medication is continuing to work. I’ve noticed, the week before the injection, I feel a little tired. By generally, I eat what I like.
Taking meds can be a huge step in acceptance of the disease in your body. I hope that some day labs will hit on a cure for this frustrating and, for some, debilitating disease.
Only you know your own body and mind, and your IBD. Heaven knows, this ridiculous disease affects us all in such different ways, so the decision is down to you. Wishing you the best.