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Optimistic October

December 21, 2015
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After a pause to think a little, here’s a belated winter update on things with me.

As you will likely know from reading other posts – I was all set to begin my Humira treatment in October.

My last Crohns flare provided a familiar feeling of pure desperation that every Crohn’s sufferer will know all too well, and I saw out the summer grappling for solutions from my consultant. I just wanted help, anything to stop the bleeding and the fatigue. I was ready to become a patron of the self titled Quick Fixers Club, because I couldn’t turn the situation around by myself, or get a handle on what had caused it to get so bad again.

After a two month stint of heavy duty steroids, I was just waiting, (pending funding approval) for the pricey wonder injection – Humira. With the funding swiftly granted, and my appointment letter sat in my lap for my initial “loading dose” of four belly and thigh injections, something in me was resisting again and it was more than just my needle phobia.

I was surprised to discover that by Autumn; having weaned my buzzy bod off the steroids, I found myself feeling healthy, energised and even my poops were solid miracle nuggets of promise. I wondered, what if I could continue to ride this semi-simulated health wave that the steroids had left me with? Maybe I just needed to try a little harder to understand and overcome my triggers. Perhaps this time it could be different.

I felt pretty optimistic after lots of reading and blogging, discovering the incredibly encouraging health movement of functional and integrated medicine; and being part of a Facebook group of like-minded patients. I found that educating myself in the ways of auto-immune issues, cell health, gut dysbiosis and permeability, gave me a non-toxic faith injection which felt wonderfully potent. I couldn’t ignore all I had learned. I finally felt empowered by a better understanding of my disease, where before I had just felt clueless and at it’s mercy.

I called my IBD nurse to postpone my treatment. Predictably she wasn’t massively interested in my recent reading and perspective on auto-immune diseases. She, in the nicest way possible, made me feel like just another new age and sweetly naïve kiddo for suggesting that I might like to re-assess the environmental causes of my bodies confused immune system. She simply said ‘well if you feel well and in remission, we don’t need to start the Humira right now, the funding lasts 12 months’. So since that chat, I have been wishing on every loose eyelash I find, that I can overcome this thing and make my remission last an entire year without giving in to the heavy meds.

Since that conversation, I have doing a lot more thinking about the steps I need to take to stay well. I know that beating Crohn’s is a complex medley of things, and a recipe that varies from person to person. But every ingredient is essentially required, it must be measured and often takes a lot of discipline and awareness to see it through.

My current slow cooked recipe for survival, up next.

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Stranded on Hair Island

November 9, 2015
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A guest blog from Gutsy’s partner Aimee; on her experiences with alopecia areata:

Back in January my hair started to fall out. As you can imagine, I wasn’t best pleased; no one wants a mini bald island on the front of their hairline. After an inital freakout, Amanda kindly contacted her friend, who’s dad is a trichologist ; a scalp doctor. This wonderful man, over the next three months would become my saviour. I learnt more from him about my body and wellbeing than I’d ever cared to give thought to before.

My whole life, I’ve always been susceptible to patches of eczema. My brother too. It comes and goes, and I never gave any thought as to why it appears – always lumping it into the stress category. But there’s so much more to it than that. Alopecia actually goes hand in hand with eczema, allergies and asthma too. The latter, thankfully I don’t suffer with, but the other three are my body’s way of saying, ‘you’re doing something wrong Aimee’. What I learnt most from my mate’s dad (let’s call him Stephen, because that is his name) is that it’s all centred around the gut. My balance of gut flora was out; I was putting things into my body that upset the balance further, and my skin and hair were reacting as a result. This is commonly known as; an auto immune response.

Unsurprisingly, this period of time happened to be of great interest to my partner (you all know her as Gutsy; co-author of this blog) as we both came to the realisation that we shared auto immune issues. Granted they were based in different areas, but the principals were the same, and the root of the problems came from the same place; a cocktail of misplaced white blood cell behaviour and an environmental trigger or two; such as diet, anxiety or allergens. The difference is; Amanda’s disease is an invisible one – people don’t see the fatigue, the bleeding and multiple night time trips to the toilet. My responses; were much more noticeable – having brazen red skin and a reflective scalp are not easy things to hide. Perhaps all the more reason for my eagerness to see Stephen, and try anything he threw at me.

Thankfully, in him I found an inquisitive healer; someone who wanted to not only treat the effects, but find and analyse the cause. First we had a long chat – one that revealed that my recent carb heavy diet due to endless nights in hotel basement dungeons, working at corporate events – was not doing me any favours. He also told me to book a holiday, as he was sure that a hefty dose of vitamin D would really help. In asking more questions, we found out that my Auntie and Grandmother had suffered from alopecia back in the day too. * Faulty genes alert! *

Since booking a holiday wasn’t possible at that moment, we started with some herbal supplements; ginkgo and zinc. Adding to that, a slightly adjusted diet – spices, plain yoghurt, plenty of herbal teas, no dairy, no gluten or wheat. Pre-biotics were also on the menu. So that, in turn would sort out my gut imbalance and feed the good bacteria so they would multiply. After a few weeks of this, nothing much was happening, so we stepped the treatment it up a notch, and I started to add a small amount of steroid ointment to the area to calm the immune flare. Again, no effect, still a shiny bald island.

We then had another chat, and that was really the turning point in my recovery. He explained; ‘your white blood cells simply need distracting’. He sent me away with a pot of weird paste that smelt bad and irritated like a bitch. Luckily the paste dyed my scalp brown, so at least now, my island was blending in more. After applying this to my head for a few weeks, the area became insanely itchy. At this point I stopped and once recovered from the itch I re-applied the paste. This time it took only a day or two for the irritation to come back. Loe and behold, a few days later, I had my first sproutlings. How did it work? The white blood cells that were originally attacking my hair follicles had gone into full retreat – they were too distracted and now busy attacking this new stinky irritant instead. Add to this a short course of UVB light therapy to the area for some added repairing Vitamin D, and my cute hair seedlings were coming along nicely.

Stephen’s approach to my healing helped awaken and reaffirm our thoughts about Amanda’s condition, as well as my own. Long had we tried natural remedies to help alleviate the effects of Crohns, but this opened up a whole new world of thought. It also meant that we had a million more questions about drugs, causes, effects, genes, family history, pharmaceuticals and consultants. The list is endless, and that’s exactly why this blog is here. We realised that our cases although seen as vastly different issues, behave very similarly.

If you look at alternative medicine, anything can be healed. There are seemingly radical theories out there, that you can cure yourself of anything, even cancer, but if you look into this stuff and the thinking behind it; it’s fascinating.

If you can take anything from my example, it should be to question theories, question doctors, and most importantly; listen to your body’s little voice telling you that maybe somewhere along the line, you too may have got the balance slightly wrong.

 

– Aimee

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Prednisolone, Friend or Foe?

August 18, 2015
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There comes a time in every Crohnies life, when things seem to be going from bad to worse and managing basic social functions like going to work, or leaving the flat, become problematic. For me, that time is now – my flare up has begun to take hold, bound by fatigue I feel useless and my pathetic attempts to help out around the flat have just become embarrassing.

When you feel like this daily, you crave nothing but your old self back – your energy, your normal poops, your painless belly, your confidence to go out or travel to work. Thankfully there is a wonder drug on hand to help with these times, Prednisolone, or known more commonly as ‘steroids’. A powerful, quick-fix drug that comes in the unsuspecting form of tiny red pills, that you take daily for around 6-8 weeks, lowering the dose by a pill every week.

A typical response to the revelation that I take ‘steroids’ by friends or colleagues is a weird smirk or a comment like, “Well, at least you’ll be hench!” (cue flex of biceps). Initially presuming I’m taking anabolic steroids, with becoming a body builder, a convenient and amusing side effect. In actual fact, Prednisilone is a corticosteroid and has no link with the steroids taken by athletes for beefing up muscle mass.

So if steroids are a wonder drug and help Crohn’s sufferers to feel better, then what’s the big deal in taking them? Well, for me steroids are very much a two-faced drug. On one hand they allow you to operate and regain a sense of normality, getting you back to a place of average wellness. But that sense of normality isn’t really a normality at all; steroids take me to a state of hyper self.

When I take steroids, I feel strangely wired and completely unable to relax. My emotions are muted, and I become almost robotic, having only logical, cold, rational interactions. I experience a strange creative euphoria, which often leads to overproduction of ambitious ideas and projects, which I cannot sustain. My sleep is affected, staying awake with a noisy head for most of the night, yet I’ll still spring into action like I’ve drunk 7 espressos the following morning.

This kind of over-energised feeling in many respects gets a lot done. One time, I moved house on steroids. I didn’t just move house that day, immediately after unloading all the furniture and boxes, I hired a man and van to drive me to the other side of London and back to collect a second hand Futon, followed by a trip to Argos to buy various flat pack bits, followed by an evening assembling said flat packs and unboxing everything into its rightful place. I was a machine and nothing could stop me, my partner was terrified, yet I couldn’t see the problem. Bizarrely, when I am on steroids, my need to tidy the space around me becomes obsessive, a side of me that isn’t normally there at all.

Aside from these strange personality effects, the physical changes are gross too. My face becomes enlarged, chubby with swollen cheeks – known commonly as ‘moonface’. My already hairier than usual face becomes covered in fine excess dark hair. I tend to eat more than usual as my tummy feels numb and my sense of fullness disappears. I therefore gain weight, swelling from all angles.

These side effects will last around 3-4 weeks, while the dosage remains high. Once the drug is tapered down, I come down like a deflating balloon to earth, and to normality. When I first experienced taking steroids, the come down effect caused me to have a mild identity crisis. I wasn’t sure who I was, what I was into, even how I wanted to dress. It was like my circuit had been sparked and reset.

The doctors will warn you about the insomnia, the appetite changes, the weight gain, and the moonface. But nobody ever warned me about the shift in my character, the new persona I would experience. Even now, few doctors will acknowledge those side affects, and just a few articles and message boards online, allowed me feel comforted learning that they were indeed linked to the drug. But when I was 18, and experienced this monumental shift in my character for the first time, it rocked everything around me – and my most significant early relationship broke down when my then girlfriend couldn’t understand or relate to my behaviour, and didn’t believe it was linked to the steroids. That was a really difficult time, and I quickly learnt the steroids were nothing but a false friend that I didn’t want to trust again.

I am lucky now that my partner Aimee knows what to expect from the drugs. She knows I will get panicked heart palpitations from the surge in adrenaline, that I’ll be a roidy bitch and say cold, cutting things that I don’t mean. She knows to let me go on a cleaning frenzy, that I’ll probably start a new art project and will lack awarenss or empathy towards her during these times. It’s amazing what she puts up with. But it’s incredibly reassuring that she knows what to expect and does a great job of reminding me, “It’s the steroids – not you”.

Now, whenever I begin a course of steroids, I say a little goodbye to Aimee. I warn her and tell her I am sorry for the way I am probably about behave, and the changes in me. She always laughs and comforts me, knowing it’s not permanent – and it’s the sacrifice we make to get me better. She is my rock during these times.

So here I am now, flaring again. Faced with a prescription in front of me for an 8 week course. Perhaps you might understand my reservations, sparring with a desperation to just feel better.

Knowing if and when to take prednisolone is a predicament I’ve come to know very well. We have become regular acquaintances over the past 5 years, after many episodes resisting and eventually giving in to it. But pred is certainly not the sort of acquaintance you want to spend very long with, or come to rely upon. It turns your bones brittle, increases the likelihood of heart failure, causes fluid retention, and for me temporarily hijacks a sense of self. But no matter what it puts me through, prednisolone is a seedy old lover I just keep crawling back to, and here I am again.

moonface

Love Gutsy.

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