A few weeks ago my husband complained to me about his blisters. He said they were ‘agony‘… He probably should have known better than to say this to me, because rather than offering him sympathy, I gave him a lecture about the inappropriateness of his pain categorisation. (I insisted that a regular ankle blister, even a nasty one, could never be more than ‘really sore’.) I did eventually realise that I was being an idiot, duly got over myself and passed him the Savlon.
Thankfully, I dont have a monopoly on pain, but pain and pain management have been part of my life with IBD. There are lots of ways of coping with pain and obviously, they depend on the severity of the pain. Ulcerative Colitis can be very painful but on the whole my experience of pain with UC, whilst severe at times, has been relatively short lived. I find I can cope if it doesn’t go on for ages. Surgery however, is another matter. I have been in long lasting and extreme pain (agony is appropriate here!) and, as well as pain relief drugs, I have found an element of mindfulness a helpful way of coping.
It is always worth having painkillers on you if you have IBD. However, some over the counter pain relief drugs are not suitable for IBD sufferers. Non-steroidal anti-inflammatory drugs (NSAIDs) can irritate the digestive tract. NSAIDs include ibruprofen and aspirin, so it is worth avoiding brands like Nurofen and Anadin and just getting some Paracetamol. Paracetamol can also reduce a fever. I wouldn’t bother with doses lower than 500mg. [Paracetamol should be used with caution by those with liver problems, kidney problems, or alcohol dependence.]
When it comes to the serious stuff, apart from morphine, my favourite strong painkiller is Oxycodone, a semi-synthetic opioid for relief of moderate to severe pain. The only problem with oxycodone is that it is a bit too good. It’s an opiate so it chills you out and makes you feel like you’ve not got a care in the world – apart from being ill enough to take it in the first place. But of course it’s addictive. It’s also a controlled drug. I took it for quite a long time and had to really discipline myself to come off it. I was really cross when a nurse took my last remaining packet from me – not a good sign!
So, decent pain killers are addictive and the others dont really do anything – what’s a girl to do?
I first discovered mindfulness by chance during my first admission to hopsital. I was in a lot of pain, but the doctor could not be found to precribe any pain relief. The nurse could only give me paracetamol. I eventually decided the only course of action was to try to relax and accept the pain. I lay down and by accepting and focusing on the pain, I found I sort of ‘became one’ with it.
I then had an out of body experience, which was a bit cosmic. Sadly, I didnt see a choir of Angels, but an impossibly huge and impassive white space. So not only was I in pain, but I was also reminded of my insignificance in the face of the unending expanse of the universe. Bummer.
My technique needed a bit of work. Unfortunately, I had several opportunities to try out my own form of mindfulness after surgery. My epidural failed the evening after I had surgery to remove my colon. What followed was several hours without pain relief. I had been opened up from rib cage to pubic bone in the surgery and I literally could not believe the intensity of the pain. I tried accepting the pain and ‘going with it’. It was probably one of the most intense experiences of my life, but I remember thinking that I could endure it. Of course, it still was absolute bliss when the aneasthetist finally turned up and fixed my epidural.
But these are extreme examples. As Anton Chekov is often quoted as saying, ‘Any fool can handle a crisis, it is daily living that wears you down.’ Ongoing pain is very difficult to deal with. After my various surgeries, I was in pain all the time, couldn’t move around and had to learn to pack and dress my own wounds and remove stray stitches with tweezers. It was all shocking, tiring and required constantly mentally ‘steeling myself’ for pain. The problem with ongoing pain is that it is impossible to get away from it. You are stuck with your body and that can be incredibly distressing. How can you accept something that is so uncomfortable, at times unbearable? I don’t have the answer to that, but I think that Jon Kabat Zinn’s work on mindfulness and pain is really useful.
Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn basically contains a step-by step meditation guide based on an eight-week programme called mindfulness-based stress reduction. I have followed this course (more on this below) and found it helpful. I also like his CDs and find his voice is good to follow, rather than annoying or distracting.
Mindfulness meditation is not affiliated with any religious belief system. It aims to enable you focus on the present and accept how you are at that moment. In many ways it is completely counter intuitive because you are asked to notice and just ‘be’ with sensation – be it emotional or physical pain – in a non-judgemental way. It goes without saying really, but the usual response to pain is to naturally get rid of it in any way possible. And how can you be non-judgemental about pain? Pain is bad! It really does require a change of perspective. The techniques are simple but it is definitely not easy.
I completed a mindfulness meditation course based on Kabat-Zinn’s 8 week program, with Ed Halliwell at The School of Life in London. Ed has written books on mindfulness and runs courses at The School of Life and at Mindfulness Sussex. It was worth doing the course, I found it easier than following the book.
I still don’t meditate every day, even though I know how helpful it can be, but it is a useful tool in pain management and coping with long term illness. I am really lucky, I am not in pain at the moment. I know people who have long term pain who go to work with it and still laugh and joke. They are amazing.. Hats off to them. It is incredibly hard.