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Here’s to World IBD & Little Ol’ Me

May 18, 2016

It’s world IBD day today, and as I type – it could not seem like better moment to take stock of my own life with the disease.

Yesterday I received my first delivery of Humira. Three boxes of injection pens plus a sharps box for each needle. I have a nurse called Margaret pencilled in for next Wednesday to teach me to self inject. This will no doubt be a memorable experience for both her and I, what with my phobia around puncturing skin it’s not going to be a pretty afternoon.

This new development may seem a little surprising to readers and friends given the tone of all my other blogs. I too am still surprised that it’s come to this. Previously this subject has left me bleary eyed and I hadn’t been able to write this update down until now. It’s taken a lot of emotion and late night processing for me to accept that it’s time to go down this road, as it’s one I’ve been reluctant to go down for a number of years.

When Humira had been offered to me before, I chose to instead spend my energy exploring some of the alternatives to taking this drug. I hoped to take back some responsibility for my own health and wellbeing and to feel more in charge of my decisions. I chose to clean up my diet, work on my anxiety with mindfulness, regularly practice yoga and attempt to exercise more. I know for a fact that these things in combination help me to stay well. But over the years, it’s been hard to maintain this perfect balance at all times. Sometimes life is hectic, sometimes upsetting things happen, there are uncertain twists in the plot. It’s not possible to always make the best choices, but I’ve tried very hard to take a more conscious and considered approach to my wellness overall. Everyone around me has noticed this and many comment that what I have done is amazing – which is always nice to hear.

Unfortunately though, this disease cannot always be tamed with even the best of intentions. Lately it’s scuppered plans, interrupted my adventures and my happiness, if i’m honest. I had become so fixated on my efforts to stay well, that I actually became quite uptight and uneasy about any signs of illness. I looked closely for ways to blame myself for possible wrong doings that caused my Crohns to take a nose dive. ‘It must be because I accidentally ate some dairy’, ‘maybe It’s because I forgot some of my supplements this week.’

But it came to me, that this gigantic pressure that I laid upon my head – to ‘fix myself’ was a heavy burden that was actually tainting and likely counteracting all the great efforts I was making. It’s so important to consider the psychological relationship with illness and wellness, and one’s own role in that. In short, I’m finally coming to terms with this life-long disease I have. It may be 10 years late – but I am making peace with the fact that in my lifetime, there probably won’t be a cure. There probably won’t be the major research to discover the cause instead of medicating and cutting away the effects of this chronic condition. I have to accept it is, what it is. There are 5 million of us worldwide, grappling with the same frustrations.

That being said, there’s absolutely no way I am going back to where I was before I started this journey and this blog. My Humira injections are not simply a bandage, but just one layer in a multitude of things I will carve into my routine, to keep me in remission for longer. Adjusting my diet has been really significant for me, and teamed with medication I think the future can only be better. Before now, I viewed taking Humira as some sort of failure on my part – but that perspective was, in itself an unhealthy one. It’s time to accept any help I can get while continuing to take responsibility and make educated choices about how to look after myself.

So this World IBD day, I want to salute all the other sufferers out there. Stay strong comrades! Being chronically unwell only teaches us to be more productive with the precious good days we are given. There’s 5 million of us out there, and thanks to this thing called the internet – it feels like I am part of a hearty members club full of resilient and determined people. I’ll be keeping that in mind when I come to administering my first injection.

Here’s a great little video I have been featured in for World IBD day. Please share it widely!

love Gutsy x

Top Tips for Feeling Tip Top

April 5, 2016

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As you will remember from my last post, I recently felt like my Crohns health had taken a bit of a nose dive. I panicked and began look for reasons and ways to blame myself for it. I recently read a great post from fellow IBD blogger Jenna Farmer, about the self blame game. It’s a common, unhealthy habit, grasping at your potential wrong-doings and reasoning everything, when some things really are sometimes beyond your control.

As the weeks went by and I continued eating well, my fatigue began to let up. I realised that perhaps, instead of losing the faith in my efforts thus far – I should consider that maybe my body was just fighting off something grotty that it previously wouldn’t have had to strength to handle? Instead of knocking me down with a full blown virus, perhaps it was just putting up a good fight, and my flare-like response was actually much milder because of all the positive steps I’d been taking for the last three months.

I realised that reframing this experience made me feel much calmer about it. Ditching the blame and anxiety and replacing them with praise for the efforts I had been making. Because we can never really know for sure where we would be without making those efforts.

In a bid to celebrate my conscious efforts towards staying well, I wanted to share my 7 top tips for helping you feel tip top, when living with a chronic illness. So here we go:

1 Just say no.

If you’re not feeling up to going out, going to that party, traipsing through town to meet someone or even getting dressed in those snazzy waist pinching trousers – just say no. Ta.

Your time is yours, and your healing will thank you for it. Stay at home, stick on your cosy joggers and spend time recuperating, feeling safe and guilt free because it feels nice to be true to what you want sometimes.

2 Get witch-crafty

Making your own natural remedies is not only rewarding for your self care, but super fun. So bubble up your cauldron and get brewing some magic potions. Here’s a few that I’m converted to:

Turmeric milk is a golden drink, is a great anti-inflammatory, and taken regularly can boost skin health, digestion and immune system. If taking it doesn’t appeal – just chuck a few sprinkles of turmeric powder in your smoothie or tea, turmeric is a magic medicine of nature and it’s cheap as chips.

Raw Garlic as an anti-viral. Mash a clove onto a spoon, cover in honey and gulp the whole thing down. Great to treat viruses, sore throats and thrush.

Coconut oil + beeswax mixed with a few drops of your favourite organic essential oil to create a relaxing temple balm. And here’s a round up of some great DIY lip balm ideas if you like to lube up those pucker pieces.

3 Blitz, blend & blast

Investing in a food processor or blender will open up a world of possibilities, and you can get some pretty well priced options now. Using one will help you boost your nutrient intake, and make quick fruit filled breakfasts instantly hassle free. I also love having one so that I can make sweet bites that don’t contain refined sugar, and so I can grind up nuts into tasty dessert bases and protein balls. I get a lot of sweet inspiration from my favourite raw blog ; This Rawsome Vegan Life

4 Share the load

Living with a chronic health condition isn’t easy alone, and if you want to make more mindful health choices – it can be hard to find a community online that’s supportive and not merely trying to sell you some faux cure. When I was diagnosed with Crohns, I couldn’t believe how many forums and message boards were full of despairing people, who accepted no responsibility for their every day choices and the additional impact that those choices may have on their condition. It made be feel hopeless and resigned to my disease and doomed to a future of sickness and surgery. It took a lot of effort to find my place, and my people. But once I found some like-minded thinkers – I’ve never felt so supported and empowered about my say in the matter. This facebook group has been my best discovery and these nutritionistas my good friends. But if what you’re looking for doesn’t exist – why not create it yourself? Something my tech hero Seb Tucknott recently created: IBD relief is an online platform for networking and sharing tips for conscious living and wellness with IBD, and he created it, simply because it didn’t exist before and was so badly needed. Let your chronic woes become your chronic will to change things.

5 Make Time

Wether it’s working a bit more part time, or giving up your Sunday afternoons for meal prep, yoga or meditation – you need to create some time in your schedule to help yourself feel good. It’s easy to say ‘I don’t have time’, especially if you have a family and a hectic work schedule – but finding time is all about prioritising you, at least once a week – see tip number 1 for a key hint to making way for you.

6 Become Interested & Invested

The whole reason I started this blog was because I decided that I had a lot more questions than I did answers about my condition. What better way to combat that helpless feeling than to enjoy the process of asking questions? Learn about your anatomy, about nutrition, seek alternative schools of thought to the mainstream. If you have more knowledge at your fingertips, you’re able to make informed choices and feel empowered to do so. Sadly a lot of our doctors aren’t really as invested in reading up on the latest environmental theories or research around our conditions, so they are rarely going to entertain any such conversations. They only discuss proven scientific research, which is primarily funded by pharmaceutical companies who unsurprisingly negate to explore any studies that consider environmental factors and less-medicated approaches. But that doesn’t mean you can’t do your own research eh?

7 Eliminate & Observe

Consider cutting out some known problem foods, like wheat, dairy, grains and refined sugars, and note the results. A great way to keep track of what you’re eating and the response is this impressive app MySymptoms which helped me easily note what I was eating, and any symptoms I experienced. It then produces a handy report, and graphs which help you notice any correlations. The reason I like it iss because you can easily input your foods and it also remembers your favourites so you needn’t type them in each time. You can even scan barcodes of some pre-packaged foods. You can also create your own symptom sliding scales. So I created one for my eczema severity, one for amount of blood in my stool, and even one for the weird blotch i’ve been getting on my face. It’s an excellent tool, and there’s nothing quite like it as far as i’ve discovered. Well worth the pennies.

These are just my top tips, but i’d love to hear yours. What would you add to this list?

Love Gutsy

Living With Crohns

It’s Not Always Plain Sailing

March 15, 2016

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It’s easy, as a blogger to get sucked in to the warped mentality of needing to behave like some shining example or beacon of idealised solutions to your and everyone else’s problems. But in reality, things remain just as challenging and certainly don’t go to plan, even when, and especially when you’re writing about them. I’ve always wanted this to be a warts an all sort of blog, about the honest ugly challenges, physically and emotionally that go with being a Crohns sufferer.

It’s taken me some time to sit and write this post, as I have been trying to make sense of things and be a lot easier on myself about these recent weeks. But what better way to process things, than to spit it out right here.

As readers will know, I have been working on an elimination protocol with a nutritionist, Molly. She’s been excellent, and despite the distance: London to Toronto, she always has my back when I am feeling less motivated. This new way of eating is about rebalancing my plate, and the foods I nourish myself with. It’s about giving my digestive system a rest, to heal and recover from the numerous traumas it has experienced, from flares, bleeding, heavy meds, viruses and anxiety. It’s also about trial and error of foods in my diet. During this process, I have cut a lot of food groups out. At times it’s been really difficult to make the right choices, but I muddled through regardless and as many have pointed out, it’s a big achievement that I stayed so disciplined all this time.

Three weeks ago, I moved home and so packed up my kitchen for a weekend. During this time, my partner had some good news worth celebrating with a fancy meal. The next few days we both felt exhausted from the move and craved a quick meal while still not having proper use of a kitchen. These tricky moments, lead us astray from our carefully planned out nutritional protocol that we had been so strictly keeping to and so – we broke a few rules.

It was amazing how immediate the results of this slip up were. Within a day of eating a little sugary dessert, some take away chips and some dairy likely thrown in somewhere – I felt the worst kind of hangover. I was a rotten, depleted, head-ache ridden mess and I was mad at myself, for messing it all up for the sake of a few moments of short lived yums.

I quickly contacted Molly to come clean about this. But her response surprised me. She saw the experience as a good one. She told me that slip ups were frankly to be expected during a tumultuous time like moving house. But more than that, recalling how crumby I felt the next day would be a powerful memory to help me reason why I’m doing this. She was right, and I have since got right back on my game, eating well, cooking whole foods and taking my supplements.

But this is where I must be honest and jump ship from the plain sailing boat, into my rickety canoe with just one paddle. Despite, my continued strict efforts, and conscious changes – lately my Crohns has gone a little off course. Since we moved, my bowel motions have loosened, I’ve seen blood in the toilet, and have even had cramps. Admitting this out loud when people ask ‘how’s it going with the diet?’ has been tough. Instead I have an internal monologue, where I tell myself I have failed somehow at proving that I can feasibly help myself stay on top of this illness.

But then it occurred to me – by internalising those anxieties, that fear of failing, that need to prove something and that dread that I’m running out of options and going to get sick – i’m likely making myself feel more unwell. Instead I’ll continue to ride upstream in my canoe and choose to acknowledge these fears and proclaim that It’s okay that I don’t have the answers yet about what works and what doesn’t, but I’ll continue to ask questions and to keep adventuring against the current.

After all, that’s the reason I’m blogging. It’s the reason I’m trying things. Since I decided to treat my experiences with Crohns as a research project instead of an affliction, I’ve felt more empowered and purposeful than ever. So, if the truth be told, I’m not feeling great right now, but I know it doesn’t invalidate my efforts so far. So I’m going to keep the faith like I promised in my very first blog and keep paddling.

love Gutsy.

Just Call Me “The Eliminator”

January 2, 2016

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January is pretty infamous for the phenomena of synchronised health kicks, new athleisurewear leggings, instagram super-juicing selfies, new tribes of gym hitters and faddy promise-the-world diets. But this January I am hitching a ride on the wagon of other people’s resolutions. Not so I can lose a few pounds of post yule flubber like them – but it’s a generally more accepting time to become an awkward eater. It’s an ideal moment to turn food focused and annoyingly particular, because well, everybody else is.

This month I am beginning an elimination diet.

People’s immediate reaction to the words ‘elimination’ and ‘diet’ after assuming it’s some weight loss regime to starve myself is to ask with a raised eyebrow; “well what exactly CAN you eat then?”

An exclusionary diet isn’t supposed to be about suffering or starving yourself, but it is about cutting out all the potential allergens, irritants and foods which may cause your gut and it’s garden of flora to be messy and overgrown, in need of a hoe and some new topsoil. As someone with Crohns it’s an excellent starting point to wipe the nutritional slate clean, feed up on the good stuff, before introducing the potentially problematic, trickier foods later into the equation. Much like ensuring a fair test in a lab, using my body’s shiny test tubes of digestion, my food consumption becomes the controlled variable, so that a month later, I can note any observations when I add those independent variables back in, like say a Yorkie or a lump of Cornish brie.

It has to be super strict, because one little slip-up renders the whole experiment void. I am lucky to be working with nutritionist Molly Sanders, who lives in Toronto. We are talking regularly over Skype and email, to learn more about my Crohns and it’s dietary triggers, as well as developing an ongoing eating plan to promote sustained wellness and remission. This particular plan is excellent for anyone with immune issues or conditions. So good news for me, as my partner Aimee and her eczema will be joining me throughout the intrepid exclusion.

The first month or ‘protocol 1’ as Molly has outlined; has 3 main aims:

Reduce Inflammation
Increase nutrient status
Eliminate potential allergens

By now you’re probably wondering what foods I am eliminating for the month, so here’s a list :

Grains (bread, rice, quinoa, spelt, pasta, noodles, flour)

Sugar

Legumes (beans, peas, peanuts)

Dairy (cheese, milk, cream, butter)

Nuts/seeds

Shellfish (prawns, crab, mussels)

Nightshades (white potatoes, aubergines, tomatoes)

Eggs

Chocolate

Alcohol

Coffee

Black tea

Green tea

Now that you understand why I am doing this mad thing and are maybe even feeling a little impressed with me and hungry for some Nutella on toast, let me now confess and assure you that I am utterly terrified. I am one of those live-to-eat people, always gawping at food, for whom the promise of a filling lunch gets me through a tough morning at my desk, who reaches for a cheeky 3pm biscuit to pull me out of the afternoon slump, who inhales nuts and seeds when ‘grazing’ and procrastinating, and who on the commute home, dreams of melted cheese greeting me out of the oven. Yes, I feel pretty nervous about this protocol. And the things that makes me most nervous are;

Dairy: I don’t eat milk anymore (switched to almond years back) but by jove, cheese is always on my mind – and I just love a creamy sauce or a yoghurty dip.

Chocolate: Because it soothes me like a babe being swaddled.

Nuts: Because I am used to snacking on those when I want chocolate but know better.

Eggs: Because they bind things together into patties and pancakes of quick fix comfort.

The other eliminatees don’t worry me too much, as I have good experience of eating Paleo in the past and my diet is practically grain free already. I already don’t drink alcohol or coffee, so will only be giving up my morning brew for some herbal teas – no problemo.

The good news is, I have this blog for when it gets tough, Aimee to laugh with and keep me sane plus Molly down the line for sensible support. I have made a meal plan and know that the key to eating this way is preparation. Knowing that it’s not forever, should allow me to feel creative and positive, so that we can have fun with it.

We’re officially starting on Monday January 4th, and I have so far made a lamb bone broth, and will whizz together some fig blitzed coconut balls for sweet treats. Aimee is going to rustle up some salty winter vegetable crisps, and I am going to make a big batch of soup. So far we have argued only once, about old jars (?!)- probably because we have started our post Xmas sugar wean and are feeling the needy pangs.

But it’s okay, because food isn’t everything, right?

Living With Crohns

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.

Leaving Quick Fixers Club

October 24, 2015

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In a bid to justify my instinctive decisions about resisting suppressive therapies for my Crohn’s disease; I am reading books and listening to podcasts in a frenzy, trying to digest all the information I can get my greedy, groany guts on. The great thing about this for my blog readers, is that you get to benefit from all my research, by putting in very little effort at all!

An online IBD friend of mine kindly let me listen to a whole series of pod casted talks titled ‘The Evolution of Medicine’ which explore auto-immune, nutrition, gut health, mental health, under the movement that is known as ‘functional medicine’. The talks are all excellent in different ways, but all discuss the somewhat revolutionary idea of starting medical healthcare ‘from scratch’, can medical practice pro-actively seek to avoid ill-health rather than just be reactive to symptoms? A change that major, can only begin with education and an increased enjoyment of learning about our bodies; something I seek to achieve right here – with my writing and visual illustrations.

Anyway, what is this incredibly dull sounding term ‘Functional Medicine’?

“Functional medicine addresses the underlying causes of disease, using a systems-oriented approach and engaging both patient and practitioner in a therapeutic partnership. It is an evolution in the practice of medicine that better addresses the healthcare needs of the 21st century. By shifting the traditional disease-centered focus of medical practice to a more patient-centered approach, functional medicine addresses the whole person, not just an isolated set of symptoms. Functional medicine practitioners spend time with their patients, listening to their histories and looking at the interactions among genetic, environmental, and lifestyle factors that can influence long-term health and complex, chronic disease. In this way, functional medicine supports the unique expression of health and vitality for each individual.” See more here.

To me, this school of thought is everything I always hoped medicine would be; engaging, dialogic, educational, investigative and always learning. But I was disappointed from a very young age to learn that physicians’ opinions were often imperfect and they certainly didn’t work like that. From my Grandmother’s misdiagnosis of Tennis Elbow, which was actually a fast spreading Cancer that killed her in her mid-sixties, to my father’s aggressively prescribed battle with Crohns disease ending in his bowel being removed, even to my partners recent misdiagnosis of ‘ring worm’ and given some strong acidic ointment for what was essentially an auto-immune psoriasis-like rash caused by a food allergy. Not only do GP’s ask too few questions and mis-diagnose, but by gosh do they like to mis-prescribe too, only to confuse the body’s own healing a whole lot more in the process. Moreover, the amount of patients that come home waving a prescription they barely understand bamboozles me!

For instance, just how many people don’t realise that taking ‘anti-biotics’ for a relatively mild infection, shouldn’t be taken lightly? Not enough. ‘Anti-biotics’, loosely translates to; DEATH TO THE BACTERIA (in scary booming voice); killing the good guys as well as the bad. Swallowing an anti-biotic pill is like throwing a grenade into your gut. It will kill off your carefully trained and shiny-shoed army. And if your immune system was compromised in the first place – it’s not always the best approach, killing off an entire colony of your good guys, in order to catch a few of the bad ones. But again, patients aren’t really explained to in this way, in order to make informed decisions about medication they are offered. Even for much bigger medications like statins, immuno-surpressants, anti-depressants etc. The chemistry behind drugs is really fascinating when you start to visualise it. So why do our doctors keep it all from us like silly children and barely help us consider the other factors surrounding our ill-health? Well some would say it’s not their job. So that’s where the newbies of Functional Medicine step up. It’s a fantastic movement, of different but totally sensible thinking.

A functional approach to medicine questions the bigger picture. Yes the usual genetic history is helpful – ‘Does x or y run in your family?’ But It would also seek to find environmental clues. It would explore the patient’s entire patterns of consumption, not just of the obvious baddies like cigarettes and alcohol, but does their diet look after their gut health and overall immunity? Can they notice or isolate the start of their problems, was there an environmental or emotional trigger? A relationship breakdown? A crisis at work? Or a holiday with weird tasting eggs at breakfast? Can we look for clues and patterns in our times of illness and in health plotted along a timeline? Can we make links to a random rash and our body’s way of sounding an alarm? It’s about a mindful approach to all of the factors in our life and the part they have to play.

Functional medicine methodology understands the body is only ever just trying to function in the way it’s meant to. It just wants to get on with it’s job, unhindered and undisturbed by toxins, stresses, bacteria and the annoying things that distract it. When it feels irritated by these distractions it sounds the alarm or malfunctions, often compromising our immunity – making us feel crabby, or worse giving us a condition that we can’t seem to get rid of.

I listened to an excellent podcast by Andrea Nakayama CNC, CNE; titled ‘Unlocking long term digestive health’. Now one thing any functional health advocate will tell you, is that the key to health and a strong immune system begins in the gut. So our digestive health is by default an excellent place to start.

She boldly explains that ‘90% of our make-up is bacterial’. We are not just biological stand alone individuals, we are micro-biomes – whole communities of microbes, constantly multiplying, fighting, dying, evolving. This is great news for our health when you consider how much positive influence we can have over the bacteria which arrive and thrive in our body, even just by considering what we put in our mouths.

A functional practitioner would seek to learn about our Micro-biome history, from before we even left the womb and trace our childhood through to the present day. They might ask; “Were you breast fed?”, “What medicines or vaccines were you exposed to?”, “Which viruses did you get as a child and how did you fight them?” In unlocking some of these memories and immune histories – we can learn a lot about what goes on inside ourselves and our unique patterns of healing and repair.

I am also reading a book simply titled ‘Gut’ by Guilia Enders which is one of the best things I have in my rucksack aside from my cherry chapstick and pencil case full of muji pens. I can’t get enough of it. It’s hilariously written, medically insightful, a visual feast both illustratively and in it’s written style, and it would (and should) be of interest to anyone. Well anyone with a gut, so that’s everyone actually.

Why should you read it? Quite simply because, the crazy zoo-like ecosystem in our gut, makes up two thirds of our entire immune system and also because it’s full of really fun descriptions of our anatomy and bodily functions; pooing, vomiting, digestion – the lot.

I am currently chewing my way through it’s pages, but once I have digested it properly I will summarise what I’ve learnt.

Love Glandy.

Auto Immune is a Fascinating Thing

October 19, 2015

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When people ask me how I feel about going on Humira, I should probably just respond with ‘it’s complicated’. When I tell people I have been refusing the drug for close to 5 years because instinctively it doesn’t sit well with me, they look puzzled. Perhaps it’s time to explain my logic at this time when unfortunately it looks as though I have run out of options and am on the road to beginning Humira in just a few weeks.

Before I explain what Humira is; let me explain a little more about Crohns; as an auto immune disease.

Auto-immune means the body’s immune system appears confused and attacks it’s own healthy tissue creating an inflammatory response somewhere in the body; like bleeding, rashes, pain etc. This response can be seen in diseases like Crohns in the bowel, Rheumatoid Arthritis of the bones and MS of the nervous system. But it can also be seen more commonly in conditions like Psoriasis, Alopecia and Eczema. In all of these instances, GP’s often prescribe some form of steroid treatment, be it injection, ointment or oral medicine. Steroids are powerful anti-inflammories which lessen the reaction to the auto-immune response but cannot put a stop to the response reoccurring. To put it simply, modern medicine doesn’t seem to be interested in educating it’s patients to question what triggers an auto-immune response, which is often very personalised to each patient and can be noticed and managed with careful consideration. Instead, they will prescribe a quick fix bandage and the patient will go away, feeling like they have been seen to, and often the problem will re-appear as it was never truly dealt with in the first place.

Having taken many hundreds of milligrams of steroids in my time, and causing my poor bones some hefty damage in the process. I have now been offered a different type of drug; Humira – a biologic. For many, this drug seems to have offered up a miracle. It has allowed chronic sufferers of arthritis and Crohns to experience relief and normalcy. But for me, the way the drug works, yet again overlooks each patient’s personal auto-immune triggers and merely blocks a crucial cell protein that is designed to take care of that patients immunity.

Humira is called such, because it delivers human cells in a neat little injection into the patients body. These cells are called TNF blockers as they wander along to the part of the patient’s cell with the naughty over-reactive immune proteins and bam! Block it – put a bag over it’s head and grip it into a tight headlock, so it stops being overdramatic and upsetting the chemical peace. Now that it’s blocked and silenced, the patient won’t have their pesky auto-immune response anymore, but rather unfavourably they won’t really have much of an auto-immune response at all. So the likelihood of getting something nasty and not being able to fight it, is increased. This includes little nasties like viral infections and the big nasties like cancer. So maybe you can begin to see my reservations?

A trainee doctor friend of mine, very kindly tried to reassure me about Humira by making me consider that Crohns is purely genetic. “It’s a genetic mutation whereby your cells are over stimulated to fight. You can’t reverse the cause or get to the origin because your DNA is constantly making new cells that have the same issue. So you need to do damage control.”

This made sense to me briefly, I am indeed predisposed to IBD because my father had it, and his father likely had it. And the gene pool I belong to; with my persecuted European Jewish ancestry intermarrying right left and centre was not exactly known for being very large. But although my genetic disposition doesn’t help, there are other triggers and factors to the disease, and similarly ways of avoiding flares.

It’s certainly cannot be a co-incidence that Crohn’s prevails in Western super-sanitised cultures, but in countries where hygiene is more compromised, and immune systems develop to be strong from birth – no Crohns exists. This to me highlights that Crohn’s is not merely genetic, but environmental factors and the intestinal microbiota – our guts complex tapestry of bacteria good and bad, has a very large part to play in our recovery. After all, our gut health accounts for two thirds of our immune system!

So when you ask me, how I feel about Humira, 700 words later – you too, may feel “it’s complicated”. But it’s only complicated because I am not, and never will be a passive patient. I will always seek to question the causes, and not just the affects of my body’s malfunctioning immune response.

Love Gutsy.

Ghosts

September 30, 2015

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In realising that there must be some, weak or otherwise link between a traumatic breakup and the onset of my recent ongoing Crohns flares; I decided to take steps to processing past emotions and the toxic residue they had left in my body.

Presently, I am content and secure in my relationship. But it’s no secret to my partner, that the relationship before this one; or more specifically it’s abrupt unexplained ending, left me in turmoil and shook parts of me up to the core. For this reason I title this blog ghosts, because these past feelings; no matter how insignificant to me now in the present, still haunt a part of me – most notably because I wasn’t able to process them as I needed at the time.

As a person, I am a talker, a verbaliser and my coping strategy is to speak about things openly and to cry buckets. In my view this is a healthy approach, but of course it isn’t shared by everyone. In fact my ex girlfriend was so far the opposite, that my desire to talk and cry it out must have repulsed her quite a lot. When she broke up with me, after 2 years by text message I didn’t really know where to put myself. I had a thousand questions for her, but the answers and information she gave me was strictly limited. Desperate to make sense of the situation, I begin obsessing over the scrappy details I would get from mutual friends. Not wanting to get involved or say the wrong thing, they said very little and possibly misquoted, misinterpreted what was said about it by her in a scrambled game of Chinese whispers.

At that time; I lost a lot of weight and found myself admitted to hospital with a flare up. It was overwhelming, but I told myself back then that it was just my body’s reflexes from all the tears.

Naturally as the months and year went by, my curiousity lessened and my need to know ‘but what does she really think of me?’ became less important. But the real difficulty then was, I knew that this person’s feelings had turned from what I perceived to be love, to a nasty sort of scorn which I didn’t understand. To me, it was no longer important why we had ended, rather why I was now hated. This unsettling rumour, echoed by many friends became difficult to shake – and caused me to continue to collect a pocket full of unanswered questions.

Fast forward to now, or more accurately 2 weeks ago, after reading the first chapter in a book detailed in the previous blog ‘let go‘. I decided it was time to be brave. Four and a bit years had passed, we were both in long term relationships, had finished our studies and were actually living just a few stops apart on the underground line. It felt inevitable to me that we might some day run into each other. But it was time to take chance into my own hands. So I sent her a message. After years of silence, I waved her a small white flag:

“I have been meaning to write to you for a while. I don’t want us to be mates, or anything that requires you to feel inauthentic to your feelings. But I want to be able to have a conversation with you where we can clear the air – at least for the sake of our mates. There’s been too many parties / gatherings when it’s been an issue and needn’t have been. So can we sort that out now? Let just get a tea and talk and draw a line under it all. Let me know if you’re game.”

To my surprise, she responded.

She offered to call me, and we chatted on the phone. A week later we met up for a chat. And I made sure that if nothing else, she knew that I completely acknowledged my mistakes in the time we were together, and hopefully that I was not a horrible person and meant nothing but good at the time. I realise now, that perhaps I had smothered her and mothered her, and could see the impact that had on her. She swiftly apologised and explained that those hateful feelings belonged to a bigger picture, a time which surrounded our relationship and personal struggles which she herself had refused to process. After briefly delving into the deep; we laughed, caught up, and acknowledged the positive impact we had on each other during that chapter.

When I orginally spoke to one of my close friends about potentially getting in touch with my ex for the sake of my healing; she told me it was not necessary. She insisted that with a bit of careful processing, I could tidy up my feelings myself. But in this particular instance, what was missing for me was a basic understanding of what had happened, to be able to ‘put it to bed’ or ‘close the lid’ and all those other cliches. To add to this triptych of cliches; this ghost wasn’t ready to leave me until I could catch a decent glimpse of it, and look at it, unafraid.

And now that I have done that; that ghost, and my questions have left me. And hopefully left my body to heal and just be content with the events that led me to where I am today.

Love Gutsy

Two Women on the shore, 1906

Edvard Munch

Woodcut printed from one block (sawn into three sections) in dark blue, green, black and red-brown ink with additions in green crayon on cream Japanese paper

Clarence Buckingham Collection, 1963.293

Let Go

September 29, 2015

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It started with a conversation. Sat on the sofa, in my reflexologists dimly lit basement studio – after a long treatment. We discussed the timeline of my illness, the recent unending 5 year episode that seemed to be stuck on spin cycle. A flare, career disruption, time off work, resorting to steroids, a new lease of life, new energy to try new regimes and methods of eating, exercise, healing, a period of remission and then – a relapse. I had been relapsing for five years, the last five years of my supposedly wild and adventurous twenties. Realising at that moment that I was experiencing my Crohns on repeat was a shocking revelation to me, and it actually ended up being the catalyst for this blog.

Although on paper I am a proactive ‘sufferer’ in my efforts towards regaining health; I seek opinions, read articles, explore diets and new regimes. After doing this for a long time; I no longer wish to tread water, I feel it’s time to question the cause, as well as focus on their effects. I feel I have to ask not just the how is this happening to my body and how can I prevent it, but the why. What caused me to have five years of perfect health at college and university, a complete inertia, and then poof – a seismic wave of fluctuation year, in year out.

During this conversation with my reflexologist she recommended me a book. She suggested I question the emotional turbulence at that time in my life and question what bearing it had on my health and wellbeing.

Now, you may be reading this thinking it’s utter nonsense to suppose that a disease can be made worse by upsets and problems; it’s a disease after all. But if you really struggle to see the connection between how we feel physically and emotionally; then question the phrases ‘I am feeling a little run down’, ‘under the weather’, ‘I’m not feeling so good’. Because our feelings are part of our beings.

I ordered the book online then forgot it was coming. When it arrived, it made very little impact. In fact, looking at the questionable cover artwork made me consider sending it back from whence it came. But I decided to pick it up and take it on the tube, I read only the first chapter. The book didn’t move me, the writing didn’t inspire me – but it spoke to me quite matter of factly and allowed me to shift focus to the beginning of my troubles.

The book’s blurb explains; The physical body is seen as a mirror of the consciousness within, and specific tensions on the physical level are seen as reflecting correspondingly specific tensions in the conscious about specific issues in the life of the individual experiencing the symptoms.

This translated to; it’s time to process the things now, that you didn’t process then. Because however I managed those feelings, it hurt me more and it’s no coincidence that the most traumatic break-up, ending of a chapter i’ve ever experienced was the same year my Crohn’s troubles really began.

You’re wondering what I did next? That deserves a blog of it’s own.

love Gutsy.

Living With Crohns

A Brief Hiatus

September 19, 2015

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A few weeks back I started to feel a strange sensation. With every gulp of tea, or swallow of a hot meal ; I felt an overwhelming burning in my chest, right behind my breast bone.

I put up with it for a few more days. Without noticing, a week had gone by during a chaotic period at work and the burning stuck with me like an aggressive splinter. It seemed to be getting worse each day and I was even struggling to swallow my morning cuppa – which is a dire situation at the best of times.

One Friday evening I got home from work, exhausted, and by this point was in full throes of a flare up, so just making it through the working week felt like such a victory and I was just about ready to pass out. But the burning seemed to be rising in my chest, up my throat and between my shoulder blades. While Aimee drifted off to sleep I sat bolt upright in bed knowing this felt wrong and began to worry.

After some late night Dr Google self-diagnosing I started to get agitated, wondering if I had developed that rare form of Crohn’s that is listed on every leaflet, wiki, advise page – and is somehow unspoken, rare and terrifying. What if my Crohns was spreading along my oesophagus, into my upper digestive tract?

Without further hesitation I rang NHS 111 for advice. The lady on the other line listened to my description and despite making it clear that ”I have Crohn’s” and it feels like a digestive sort of burning – she sent an ambulance for me. It arrived flashing outside immediately and the paramedic came up to my flat, into my room and we chatted while I sat on the bed, feeling like THE Princess and the pea. He explained that any signs of chest pain have to be checked out as a matter of urgency and I shouldn’t feel like I am wasting anyones time. And actually, who was I really to disagree, with both my dad and my maternal Grandpa suffering from heart conditions.

He took me inside the beepy ambulance and stuck pads on my chest to perform an ECG, to reveal very chirpily that I was not currently having a heart attack. He checked out my blood pressure, which seemed a little low, and insisted I come to A&E for a definitive check over as if nothing else I looked pale and anaemic – which no doubt I was after all the blood I had been passing in the bathroom. I politely declined his offer of a ‘free ride to the hospital’. As any experienced Crohnie knows, it’s a bad idea to admitted or seen once it turns weekend o’clock, least of all in A&E on a Friday night as the booze related incidents roll in and the skeleton staff of doctors drift about the place. He agreed that is was likely to be a gastric pain, and suggested I tell my consultant, who I was seeing the following week in clinic.

After a few prudent chews of Gaviscon and some painkillers, I fell asleep in my own bed.

Sure enough, my consultant took the whole episode pretty seriously and booked me in for an endoscopy. Within a few weeks I have having a camera shoved down my throat to reveal I had something called a hiatus hernia. This is apparently very common, particularly among the usual suspects of hernias; older people etc. But also for Crohns sufferers, particularly those who have dabbled in prednisilone. I sure had. So here I was, with yet another diagnosis to add to my CV. But I felt relieved to have it, because as long as my Crohns only lurked in my small bowel and no place else – I could sleep soundly again.

love Gutsy.

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