My Thoughts on Medication

The inspiration for today’s post comes from a comment on Facebook about my guide to the best diets for gut health. Someone asked why I didn’t mention medicine on the post and I guess I assumed my reader’s understood my position on medicine. But I wracked my brains and realised I’d never really talked about medicine on my blog which worried me. I don’t want to be one of those bloggers who say the only medicine they need is raw kale while meditating for 3 hours a day. Mainly because medicine is currently part of my treatment plan and I hate Kale. (Well, I don’t hate it-I just don’t get why people wear a T-Shirt saying how amazing it is!)

So what is my opinion on medicine? Let’s start from the beginning…

When I was first diagnosed, I really didn’t want to take medication. I went from thinking I had nothing wrong with me to being given my first dose of Infliximab in a very short space of time.  This was because I was living abroad with private healthcare and had been undiagnosed for 12 years. I imagine that if I was diagnosed earlier in England then perhaps I’d have been given the obligatory dose of steroids that would have eased me into medication. Perhaps the moonface (a side effect of steriods, which is almost an initiation for IBD patients) would have left me in a hurry to sign the infliximab consent form in a bid to feel better. But instead, an American doctor handed me a very scary medication leaflet that had the headline: ‘Warning may cause death’ (I’m not exaggerating, since the US is known for it’s litigious culture and private healthcare they have very clear warnings to avoid being sued) and I went straight to the serious stuff. This is known as ‘top down‘ medical care; designed to prevent future complications even if symptoms aren’t actually severe. 

Anyway, I did not like taking Infliximab. It made me tired and have neck pains but the worst side effect was by far the fear of being seriously ill from it. I was really anxious about my health constantly and found although my symptoms and inflammatory markers were much better, I still didn’t feel 100%. As I had never had terrible IBD symptoms pre-diagnosis (I never had bleeding or severe pain), this harsh treatment regime didn’t seem to fit.

After going gluten-free in Bali, I felt amazing and was convinced this was the missing puzzle piece- and wanted to come off Infliximab. I started to spread my treatments out slightly-first every 10 weeks, then every 12. Stretching these out didn’t impact my inflammation or symptoms so after an almost clear colonoscopy I decided I would stop it after being on it a year. Although that might sound pretty reckless, I was in the process of moving from China back to the UK and therefore I knew I wouldn’t be able to just rock up and get infliximab straight away.

During the year that followed, I was off all medication for about a year. I felt great during this time and because my new doctor in the UK wanted to run all my tests again, I had another colonoscopy. This and biopsies showed very mild Crohn’s in one area and the rest was normal. I was screaming from the rooftops and then 3 days later… bam: I had an abscess and needed surgery. A few months later MRI showed I now had Crohn’s in 2 areas and my doctor suggested trying Azathioprine. I was understandably frustrated: the fact that biopsies had come back normal meant I knew the colonoscopy had inadvertently caused the abscess. It was too much of a coincidence. The stress of everything had then  caused me to flare and I felt helpless because I’d believed everything I had been doing was enough. Yet it also taught me a valuable lesson that sometimes we can just be unlucky and things are out of our control. I could juice 5 times a day but it would be pointless if I didn’t find better ways to deal with stress.

That brings me up to the present. I am working on dealing with stress, sticking to my diet and on Azathioprine too. In a way, this whole episode taught me to be a little more balanced. After all, I go on about a holistic approach to living and sometimes that has to include medication too. I would like to think I’m now in a position where I can be more of a realist: my doctor knows that I don’t want to be on medication forever. I don’t feel my symptoms warrant it and given I am my own biggest health advocate he knows I will keep up with regular blood tests even when off meds and march my straight down to hospital if there is the start of a problem.  Yet at the same time, I respect my doctor’s opinion and if he tells me I need medication then I will take it! Even on medication, I feel unwell if I veer of my diet which simply reinforces my belief that the response to this disease has to be more than one-dimensional.

Sometimes I feel a bit of a fraud being a Nutritional Therapist and health blogger than takes medication each day but I am actually proud that my blog doesn’t push one way of life on its readers. The best advice I have read about medication is that you should ask yourself whether risk of being unwell from a flare outweighs risk of the side-effects. This is what I always keep in my mind and I know that at different times in my life the answer will change. Approaches to IBD and chronic illness are changing all the time and hopefully eventually will evolve to show that diet, lifestyle and medication can all co-exist alongside each other.