Sunday, 3 August 2014

Brief History Of My Ankylosing Spondylitis

As I mentioned in my first post, I was diagnosed at the age of 24. I'd had back pain for many years prior to this diagnosis and seen lots of Dr's and specialists who all gave various different reasons for the pain. Eventually they realised that my uncle has AS and that I also carry the HLA-B27 gene that is needed before the disease can activate.

Sorry it's a lot of writing but it really is worth a read, I promise!

Aged 19 - 24

I had been seeing a Rheumatologist for a fair few months (possibly years, I can't remember now) prior to being diagnosed but he was unfortunately unable to diagnose the disease because he could not see any obvious signs of AS in X-rays or MRI scans. During this time I think I was put on various different pain killers and anti-inflamatories ranging from Ibuprofen up to Arcoxia and everything in between - they did reduce the pain a little bit but had a really bad impact on my stomach... Luckily after a few months of this I had a massive flare-up and managed to get an emergency appointment with an incredible lady called Dr Walker-Bone. When she saw me unable to walk and looked at my blood results and re-assessed the MRI and X-rays she diagnosed it there and then. She gave me a steroid shot in my ASs which helped almost immediately.

Aged 25

After being diagnosed by the fantastic Dr Walker-Bone, she asked me to carry on with the strong anti-inflamatories for the time being whilst we looked for a solution. She mentioned the possibility of going on a relatively new drug called Humira which would be a bi-weekly injection of an Anti-TNF drug which would help mop up some extra cells that my body was creating (excuse my ignorance on the exact workings on AS!) which was the main cause of the problem. After a few months I went back to see Dr Walker-Bone and she had managed to get approval for funding for me to try this medication. I was extremely grateful to her as I know that this drug is very expensive and can be difficult to get funding for. I had to have a colonoscopy prior to going on this Humira which was quite an experience! Waking up with a nappy on after having something inserted roughly in to you ASs is something I will never forget, but it was important to do because of all the damage the anti-inflamatories had done to my insides.
I started the Anti-TNF medication and it had almost instant positive effects. The pain and stiffness were greatly reduced and there were no instant side-affects unlike with the strong anti-inflamatories.

Aged 25-30

I was on these Anti-TNF injections for roughly five years. During this period I came off them a few times for a couple of months because of going away. I mainly visited tropical countries where I was surfing and generally living very healthily. Whilst away for these periods of time, I would mainly experience very little pain even off the Anti-TNF and only take Ibuprofen a few times a week.

Aged 30-31

One day I gave myself an Anti-TNF injection in m stomach as my girlfriend was cooking dinner. I started to feel a bit strange and stripped off because I was really hot. I asked my girlfriend to open the kitchen window and by the time she had turned back I had fainted. I'm not very good with injections (massive understatement, I'm an enormous weiner when it comes to injections!) but the Humira pen was great at minimising the fuss and discomfort of the process. However it felt to me that there seemed to be something in my body that was rejecting this drug that I had been on for five years. It felt like a turning point. I decided that after an upcoming surf trip for a month to Spain I would try and come off the Humira permanently and see how I get on. I had already begun looking in to the prospect that diet can massively help with AS and so this became my main focus.

Aged 31

After returning from Spain I had 10 months of living relatively pain free and almost forgetting that I had AS. I was eating healthily (ish) but still had a massive addiction to sugar! I was also seeing a Homeopath in London (I still have no idea whether this helped or not, but I have recently finished the last dose of what they gave and I'm not continuing it at the moment) and a wonderful acupuncturist in Brighton.

Aged 31 - Early January 2014

In January 2014, my girlfriend and I went on a trip to Morocco which was fantastic we surfed a bit, enjoyed being in summer sun and soaked up all the incredible culture that Morocco has on offer. We were staying in a beautiful house overlooking a big surf town and were eating beautiful fresh food every day. I was also eating a lot of bread, anyone who has been to Morocco will know that they do like a bit of bread, as well as drinking a lot of coffee.
I returned home at the end of January feeling great and pretty much the most flexible and active I have felt in the last few years.

Aged 31 - Early February 2014

In early February I started to feel a little twinge in my lower back and hip, which gradually got worse and worse. My girlfriend wasn't around as she had gone off to Poland for a few days to visit family. Unfortunately the pain escalated in to a full blown flare-up which totally crippled me and I began to get a bit scared. My girlfriend returned luckily and helped me out with simple tasks that were nearly impossible without help, things like getting out of bed or standing up from being on the loo. It was truly excruciating pain, I was on all sorts of pain killers and anti-inflamatories again from codeine to valium to morphine. It got to the point where we had to call out an Ambulance as I was stuck in the bath and could not get out. It sounds funny now, but at the time it was a devastating feeling.
During this time I had started seeing a different Rheumatologist who has also been a great support. I tried contacting him but found out he was on holiday so I contacted my local surgery,  The Brighton Health and Wellbeing Centre who are another incredible group of people whom without their help I don't know what I would have done! (Anyway enough of the praises, I will write separate posts about how great people have been at later dates.)
My GP, got me an emergency steroid injection sent to the surgery and they stayed late one evening because I had gone to have an MRI scan and was held up trying to hobble back across town.
I also managed to get stuck on my acupuncturists couch and could not get up for 45 minutes, again another incredible lady who just stayed with me and helped me out of the situation slowly.
Anyway, I began to feel the effects of the steroids and gradually returned to a bit of normality. However I was still terrified. I didn't know what to do with regards to going back on Humira, I didn't even know if I would be allowed to or if once you come off it then that's it. I started feverishly searching the internet for blogs (one of the main reasons I finally got around to writing this,  because someone might be in the same situation as I was and I would love them to find this to know that it is possible to get over this thing to some extent) for some information about AS and how to control it with diet as I remember reading a few books at the beginning of m diagnosis about controlling arthritis with diet. It became apparent that going back on to Humira was an option but it was something I really did not want to do. After researching the internet I found that there was a lot more information out there now than when I first got diagnosed with AS, and it seemed to be directed more at auto immune diseases which is what AS is as opposed to the arthritis stuff that I was reading originally. From reading this information it became obvious to me that if I really wanted to beat this thing (reluctant to say beat this thing because I might not have, but it really feels like I might but don't wish to offend anyone as I realise that AS can affect people in different ways and diet may not help you) and take things in to my own hands then I really had to focus on diet.

Aged 32 - February 2014 until August 2014

So basically now I have been on a really strict diet since February and I feel great. I don't really feel any pain at all. I get a few little twinges here and there but I can honestly say that my back feels the best it has felt since I was 17 or 18. Even when I was on the Humira, I would still have stiff days and feel the need to take some pain relief sometimes. But since February this year I have not taken one bit of pain relief for my back.
My diet started really strict in March 2014 and I went hardcore for a month. No sugar and I followed the Auto Immune Protocol, mixing in a no starch diet based on lots of Paleo blogs. After the month was up I felt incredible! No pain and just in general I felt amazing! Since April I have stuck to the diet as best as I can, however I still eat a fair bit of sugar - but this is something I am working to try and stop but it is sooo hard!

Anyway, so that is the brief history of the process I have gone through to get to where I am today. I know that I have written it quite badly but if you've had the patience to read it, hopefully you were able to identify with some of it. Basically I feel that diet is the answer to this disease.
When I first heard I had AS, all I really heard was that I had arthritis and that is inflamation of bones and joints and that is what I focused on. What I hear now when people say I have AS, is that they have an Auto Immune disease and an Auto Immune disease is massively to do with how healthy your gut is.

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