Gut instinct

I am sure I’m not alone when I say running often upsets my stomach? But how often is it acceptable for this to happen and if it’s happening after every hard workout or long run is that abnormal? For many years now I have regularly written into the little box on my training diary “felt good but had a bad tummy after” it wasn’t until I actually sat down at the start of 2016 and looked back through my old training diary that I realised just how often this was happening. In all honesty I probably should have spoken to a medical professional years ago but I just put it down to pushing my body past its comfort zone and i’d also be lying if I said I wasn’t pretty embarrassed that I was losing blood on many of these occasions and didn’t want to have to go down the route of getting it checked out incase this resulted in instruments being inserted into embarrassing places that nobody really likes to hear about!

In July 2014 I met a brilliant Professor of Rheumatology and Lupus disease based at London Bridge hospital. His name is Professor David D’Cruz and I’m eternally grateful to him for being one of the few Doctors I’ve met who’s actually taken the time to fully investigate my symptoms and not suggest “it’s all in my head”. After running a crazy amount of blood tests he found I had several markers suggestive of a form of Rheumatoid arthritis-not usually what you want to hear at 30 years of age but I could have reached across the desk and hugged him as to me this was a giant leap towards getting my life back. I had spent the last few years struggling to get out of bed in the mornings, being unable to walk after having a run and spending hours rehabbing my ankle at the end of each day just so that I could try to do it all again the next day. I had ceased to be living and was just existing whilst trying to put on a brave face to everyone around me. I couldn’t even manage to hobble round the supermarket without feeling as if I was going to pass out as my joints and troublesome left ankle would swell up and be hot to touch. Thankfully this all changed in a matter of weeks in September 2014. Prof D’Cruz started me on a drug called Methotrexate which to those who don’t know is a Disease Modyifying Anti-Rheumatic Drug (DMARD) used to treat arthritic conditions as well as certain cancers (yes it’s that horrid chemo drug that makes your hair fall out!) Thankfully I was put on a low dose so my hair albeit thinner than it used to be is thankfully still resident on my head! I hate taking medications as I always worry about side effects-and this drug is no exception…Thining hair (as mentioned) birth defects, interstitial lung disease, liver failure (hence no alcohol whatsoever whilst taking it) feeling like you’ve been hit by the number 9 bus the day after taking it etc etc! However I must say that it was worth all the risks and I am finally running 70+ miles a week again plus managing to live as a 30 year old should be and not hobbling round everywhere like a 90 year old!

I see I have digressed from the original topic of conversation so I apologise for being boring and waffling on-I’ll stick to the point in hand!

Over the course of the last year I decided to look into what might have triggered my arthritis and also why I was getting so many stomach problems. The methotrexate was having a positive effect on my gut health but it was still rumbling away particularly after long Sunday runs. I started taking a stronger probiotic supplement from my normal everyday healthspan one. I opted for one called VSL#3 which I bought in sachets and mixed into juice everyday. Within days I noticed a difference and so I started spending hours during the evenings researching probiotics and gut health. Most of what I read talked about how our digestive system is the route to health and an unhealthy gut can leave us prone to any number of complaints and diseases. My stomach issues had definitely got worse following the pseudomonas infection in my ankle and was no doubt as a result of 9 months of intravenous antibiotics which rather unhelpfully and without doubt would have wiped out every living bacteria in me including the smiley faced useful ones. My new quest had begun! I went on to dear old Amazon and ordered every book I could find on gut health… ‘The Diet Myth’ by Tim Spector (http://tim-spector.co.uk) ‘Brain Maker’ and Grain Brain’ by Dr David Perlmutter, ‘The Disease Delusion’ by Dr Jeffery Bland, ‘Missing Microbes’ by Martin Blaser, ‘Gut’ Giulia Enders I could list more but these were my favourites and are definitely “Must Reads!!!”

My diet was my new medication and although I’ve always obsessed over trying to eat as healthily as possible this somehow felt different! I introduced sauerkraut, bought Kefir googled every probiotic on the market and tried many of them! Week by week I started to feel better, I cut my methotrexate down from 7.5mg every week to 2.5mg once every 2-3 weeks. My iron levels started to go up (something I’ve always struggled with despite being a meat eater!) I could run 90 mins without the need to find the nearest toilet (or worse….unfortunate bush) as soon as I stopped my run.

My daily ‘live’ supplements now include “VSL#3” (http://www.vsl3.co.uk). “Biolive” (http://www.microbz.co.uk/product/biolive-fermented-probiotic/). “Kefir” yoghurt drink-any make I can find! “Elixa” (http://www.elixa-probiotic.com/) which I take for 6 consecutive days when I feel my usual probiotics aren’t quite holding my health probs at bay.

2016 saw the biggest change in my diet to date, after much deliberating I made the jump to go “Gluten Free”. My mum had been gluten free for several years due to IBS and had seen a massive improvement in her health since cutting out the demon wheat! My younger Sister who has also had her fair share of health problems had also decided to cut out all wheat so I went for it and joined them. Thankfully these days most supermarkets stock a decent amount of alternatives so after sifting through them to ensure I wasn’t cutting out wheat only to consume some other non nutritious nasty, I filled my trolley with a whole number of foods new to me. I’d be fibbing if I said I didn’t miss the delicious bertinet sourdough I regularly devoured each week but I have been pleasantly surprised by many of the wheat free products available. In the past few weeks my stomach issues have completely resolved. I never would have considered that wheat would be a contributor to my post run miseries but I really do feel like a different animal now. I’ve started to look less drawn and pale in the face and no longer get that post meal slump that I always put down to changes in blood sugar levels. I feel like this is a whole new journey back to health and I’m determined to eventually stop taking Methotrexate for good and rely on natural alternatives instead. I urge anyone who has experienced post run tummy issues to take a look at their diet and make changes. Don’t ignore what your body is doing its best to tell you, it may just be the best advice you ever take.

Out of the Fire into the Flames of RSD/CRPS

 

In February 2010 I underwent surgery at a private London hospital to remove a bone spur on my left calcaneus. What should have been a simple operation with a quick return to running (supposedly within six weeks) became my worst nightmare.

My ankle failed to heal and opened up four weeks after the operation. I was taken into Frenchay hospital in Bristol and diagnosed with a gram negative pseudomonas infection in my ankle. Throughout the following 9 months I was resuscitated twice, and faced the very real threat of amputation of my lower left leg if the infection didn’t respond to antibiotics. I had a PICC line inserted into my arm and over the next few months worked my way through 9 different I.V antibiotics 3 washout operations and numerous plaster casts.

 

A year on from my first operation I could barely walk and I feared I was still suffering from on going infection in my ankle so I sought out several foot and ankle specialists in an effort to get some answers. I flew to Holland to see legendary ankle surgeon (to the sports stars) Professor Niek Van Dijk. My ankle was in a pretty sorry state and I hardly had any movement in the ankle joint due to a build up of scar tissue. He performed a 4 hour arthroscopy to remove as much of the scar tissue as possible and I flew home the following day full of hope.  Sadly despite the Professors best efforts the pain and stiffness in my ankle continued and my ever suffering sports Dr Kal Parmar at Pure Sports Medicine was forced to make several phone calls to different surgeons to try to get another opinion. I went to see Mr James Calder, a renowned foot and ankle specialist based in London and Basingstoke. Within 5 short minutes he diagnosed my complaint as RSD/CRPS and referred me to his colleague Dr Chris Seifert, a pain specialist and anaesthetist based in Basingstoke.

Reflex Sympathetic Dystrophy or as some refer to it, Chronic Regional Pain Syndrome (CRPS) formerly “causalgia”, or reflex neurovascular dystrophy (RND) is a chronic pain disorder involving the sympathetic nervous system. It is a disease characterised by prolonged pain usually more severe than the injury. The symptoms are severe burning pain in a localised area, intense sensitivity to temperature and light touch, and a colour change to the skin. I had never heard of such a condition and as a result it wasn’t spotted for several months. It can be triggered by an injury, surgery or most likely as in my case, a period of immobilisation (plaster cast). I resorted to keeping a bucket of ice water next to my bed and most nights was forced to plunge my lower leg into it to stop the feeling of my foot being on fire. I have never felt pain like it and find it hard to describe the torture it causes to sufferers of this cruel condition.  

I was started on 10mg Nortriptyline which I took every night an hour before bed. It started to work within days and suddenly I was able to sleep through the night, something that hadn’t been possible in a long time. It was also recommended that I underwent a course of 3 Guanethidine nerve blocks with manipulation of my ankle under anaesthetic. The nerve blocks definitely helped but I wasn’t convinced that the manipulations helped to improve the range of motion in my ankle.  The problem with RSD/CRPS treatment is that everyone responds differently, what works for one patient might not work for another. A big part of my treatment has been regular Physiotherapy, and specifically massage. I am incredibly fortunate that my Mum has been able to do most of my treatment on an almost daily basis (benefits of having a Physio as a Mum!) I am incredibly sensitive to changes in temperature,  at times I can’t cope with someone else touching me if their hands are a different temperature to my foot. I have to be careful hot baths don’t set off the RSD, if my foot starts to get hot I have to ice it for 15 minutes using my ‘Aircast Cryo Boot’. At times I have got a lot of benefit from ultrasound treatment but we’re not always able to use it as the heat it creates can set off an attack. The RSD/CRPS doesn’t follow a pattern so its difficult to know how you will feel on a given day. Sometimes I have hobbled out of bed and remained stiff and sore for much of the day. On other days I have been able to go for a run, or even compete in a race. I have found that being in a warm dry climate helps (not easy to achieve in the UK!) so I have spent quite a bit of time in Albuquerque-New Mexico (USA) the low humidity seems to settle my symptoms.

During a particularly bad few months I looked into Hyperbaric Oxygen Therapy (HBOT). I was fortunate that there was an MS Therapy Centre near to my home and they kindly allowed me to undergo 10 sessions. I was pretty sceptical about using the therapy for RSD as there wasn’t a huge amount of published data on the subject but I was willing to give anything a go and was very glad I did as I felt a real benefit from the sessions.

Other helpful additions

I was told by Dr Chris Seifert (the pain specialist) that high strength vitamin C can also help symptoms so I take 1000mg of Ester C each day. I personally use Healthspan’s version as it seems to avoid the stomach issues high dose Vitamin C can sometimes cause- http://www.healthspan.co.uk/products/ester-c-1000mg I also love a massage cream called rubbeez. When you massage it in to your skin it feels slightly chilled which really helps when your joint feels like its on fire! http://www.rubbeez.com

Medication

Obviously this needs to be tailored for you individually and what works for me might not work for someone else but as mentioned previously Nortriptyline (10mg) has worked wonders for me. I also regularly alternate between 3 anti-inflammatory tablets namely Naproxen (500mg), Meloxicam (7.5mg) and Arcoxia (60mg). I find I can just about tolerate one of these each day (as long as I consume them with food) without the need for for a PPI (Proton Pump Inhibitor) such as Omeprazole which doesn’t agree with me. I regular take good old Paracetamol as well which just takes the edge of the pain when it flares up.

RSD/CRPS is a horrible condition to have and at times I’ve struggled to keep motivated. I have been very fortunate that I have a wonderful group of people around me who still believe I can overcome or at the very least learn to manage this hiccup. I have always been pretty tough-I think it comes with being an elite level athlete. You learn to push yourself incredibly hard and sometimes beyond what is sensible but that desire to achieve in sport is definitely standing me in good stead to achieve full health again. I refuse to be beaten by my health issues and live in hope that a cure will one day be available for all the sufferers of this painful syndrome.

Your work is to discover your world and then with all your heart give yourself to it. ~Buddha

The last four years have been a daily struggle often filled with times of despair and a lot of pain, but the enduring hope of returning to the sport I love has kept me afloat. Through the support of my ever suffering family, my Coach and numerous dedicated Medics I have been able to overcome some of my health issues and continue battling against the current ones.

I decided to start a blog in the hope of inspiring others with similar health issues to never give up chasing their dreams, as Henry Ford says ‘Don’t find fault.  Find a remedy’.