• Home
  • About
  • Living With Crohns
  • Self Care
  • Nutrition
  • Living With Thyroid Disease
Logo
Monthly Archives

August 2015

Previous Next
  • Living With Crohns

Prednisolone, Friend or Foe?

August 18, 2015
admin
0 Comments

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.

Continue Reading
  • Facebook
  • Twitter
  • Google+
  • LinkedIn
  • Living With Thyroid Disease

A Handy Introduction to Glandular Malfunction

August 13, 2015
admin
0 Comments

Howdy from across the Atlantic. Reporting live from my living room where I am drinking all manner of ungodly potions in an attempt to eradicate a sore throat. It occurs to me that having hypothyroidism and celiac disease is quite a lot like having a little common cold in one respect: you feel mildly crap at all times. Always a little on the invalid side. Sure, you can laugh at TV shows and drag your butt out for a drink, but inside, your body is moaning a low and steady, “bleeeeeurrrrgh” at all times. That’s where the similarity ends and one glaring difference appears – having a chronic disease of the thyroid gland, and being allergic, but not fatally, to gluten, is very unlike the common cold in that the general public have no idea what you’re talking about when you inevitably have to talk about it, and thus they illicit very little understanding. Because it is just as disruptive and inconvenient as the flu, often more so, but not as familiar as a peanut allergy, or as obviously uncomfortable as arthritis. So when I explain about not being able to eat gluten or having a gland problem, I come across like the sniveling little sissy boy from The Secret Garden:


“I really can’t eat that bagel. Not unless you want me to travel home on a poo rocket”.

I’ve had hypothyrodisim, a condition that means my thyroid gland is forever straggling along at sub-par levels, since I was twelve. I’ve known I have celiac disease for the last four years, but gaging by my childhood health problems, I’ve probably had that a lot longer too. This doddling duo don’t do anything dramatic if you keep general tabs on them, really they’re about the long game. The thyroid gland is an essential part of the endocrine system which governs your orchestra of hormones – your metabolism, sleep, mental health and clarity, lust for life and sex – all these get their cues from the thyroid, adrenal, and pituitary glands, and if one isn’t in harmony then they all tend to go off key. Celiac disease manifests itself in umpteen symptoms, which is why it classically goes undiagnosed. I myself react with oozey, bleeding, pustular rashes that would make a plague doctor flinch, and a kooky medley of digestive and mental side effects, the mildest of which include diarrhea and anxiety, the most severe including holes in my gut and raging OCD. Nice stuff.

So Amanda and I chit chat on the regular about being unwell. Recently, we’ve both been going through a rough patch. She was having a (bum) bleeding awful time in and out of the doctor’s with her Crohns, and I was being continually disconcerted by my GP’s lackadaisacal handling of my general poor health and my upcoming annual thyroid cancer test. My thyroid is covered in nasty little nodules which have to have an eye kept on them for signs of cancer. So every six months I have an ultrasound to check on their fluctuating size, then a needle is jiggled, yes jiggled, deep into my nodules to collect cell samples.


Like this but less scary because it’s not John Travolta.

Sometimes I get the all clear, sometimes, the test comes back inconclusive for various reasons, and the endocrinologist gives a helpful shrug and consoles me with the knowledge that thyroid cancers are very slow spreading should I have one, or that I could always have the whole damn thing removed and replace this very vital gland with thyroid medication that has never worked well for me at all, for the rest of my (probably sluggish and miserable) life. For both of us it has often seemed that no one really knows what you’re experiencing or how best to help, which leaves you squinting at endless internet sites compiling a hodge-podge of notes on how to fix yourself. Well dear readers…

Welcome to our hodge-podge!

We’re two best friends separated by an ocean but joined by many bonds, one of them being our crummy bods, our inflammatory tendencies. We’re trying everything within our reach – traditional medical routes, alternative ones, ones my Serbian grandmother suggests (it involves a candle and… maybe the devil? I don’t know, cabbage features heavily), anything and everything to feel a bit better, and who knows, maybe even glorious. Ha! We’ll see.

Fingers crossed, buttholes clenched, minds open.

Love Glandy x

Continue Reading
  • Facebook
  • Twitter
  • Google+
  • LinkedIn
  • Living With Crohns

Keeping The Faith

August 13, 2015
admin
0 Comments

 

Today’s episode if my life, rather perfectly resembled a surrealist painting of the ongoing feeling of being torn, between two worlds, two rocky paths, or two old quarrelsome friends who claim, to be right, in believing they can help heal my Crohn’s disease.

On one rather well respected side, we have the IBD doctors, the hospital and their medicines designed to treat the effects of my Crohns – a disease not fully understood; versus the alternative camp; dietary adjustments, healthy supplements, exercise and de-stressing to help treat the environmental factors that play, in my view, such a key part in staying well.

I think any reasonably intelligent IBD sufferer, or a sufferer of any chronic illness with a few healthy inquisitive cells will at some point find themselves querying the course of action suggested by their consultant.

For me, it’s been a conversation that plays out routinely every 6 months, every time I find myself flaring. My consultant has been insistent that I consider the biologic drug – Humira. A drug that although proven to help a lot of moderate Chronies like me, frankly terrifies me. Not only because I am a needle-phobic nincompoop and desperately fear jabbing my thigh flesh on a fortnightly cycle, but because it comes with some pretty sizeable warnings. Cancer; lymphoma being the prominent one. Aside from my more rational reasons behind refusing the drug – my emotional association with a drug like Humira has always felt like admitting defeat somehow, and instinctively (if I’m allowed to have those) it’s always just felt such a big decision, and the wrong one for me.

But today I found myself in an all too familiar position. I am currently going through a flare up, feeling desperate to resolve it; as feeling exhausted, pained and passing blood really does wreak havoc with your career and social life, not to mention your will to remain positive. Over the last 5 years, I have experimented with so many diet and lifestyle shake-ups that it’s hard to even know what has worked, and why if it did, it didn’t last.

Today I had a meeting with my new consultant. I changed hospitals as my last consultant’s Humira bashing agenda become tiresome, along with his regular cancellation of clinics to accommodate his voyages across the world. I was nervous to meet my new one, and spent the morning collecting all my hospital letters and notes for them. I found myself plotting a little chart to help me remember the timeline of illness and wellness over the past 5 years which had become a total blur. I wanted to be prepared, in case typically, they weren’t…

Surprisingly, she was everything I dreamed she might be. Thorough, interested in my case history, my life, my interests, even my feelings on the proposed drugs. And even better – more than willing to book me in for every kind of test going to get an accurate diagnostic picture on my current state of IBD health before making any treatment decisions. I went along with my mum, who was nodding along and practically danced out of the clinic.

Feeling positive, with blood forms, stool pots, and CT scan appointments in hand, we agreed to meet again in 6 weeks to review the possibility of Humira or Infliximab, something I have never before agreed to.

So why did I agree to it? Plotting my little graph today really helped me realise that I had lost 5 good years of my twenties, battling this monster of a misunderstood disease. I’ve been dragged through hospitals, swallowed thousands of steroids; hooked up to IV’s, put on excess weight, lost sudden masses of weight, paraded my embarrassing moon face around regularly, felt like a horrible angry person with a beard, and struggled to help employers understand or empathise with any of it. Not to mention all the stress I put my partner and our relationship through. I realised, this morning, that these regular flares had become my normalilty. Maybe it was time to give up on the alternatives, the paleo meal plans, the downward facing dogs and endless supplements and admit that it was time to ‘just get that Humira in your leg!’ as my last consultant so tactfully put it.

That should be the end of the story. But it wasn’t. In a strange turn of events, heading home from hospital – we found ourselves walking in a naturopathic chemist, looking for something iron based to help me with my anaemia and tiredness. The assistant suggested we join the queue to speak to a naturopath who, lucky for us – gives free advice on Wednesdays. I was feeling so weak after giving 11 phials of blood that I didn’t mind a little sit and wait.

So after ten minutes, a doddery Asian man in a stained white coat invites mum and I inside a tiny pre-fab booth, constructed out of old display boards. He asks us to sit down, in the stark but messy looking room complete with posters about impotence and heart disease plastered on the walls. He reaches for my arm and checks my blood pressure using a gadget, next to it’s open cardboard box that looks borrowed directly off the chemist shop shelf. After my BP reads fine, he takes my wrist to feel my pulse. This quiet man has said hardly any words until this moment, just some gestures to sit here, give my arm etc. While holding my wrist tightly between his thumb and forefinger, we pause. He confidently chirps ‘you had a shock when you were a young girl, that is the cause of this’.

Instantly I felt my eyes roll and I engulfed the room with a cynical sigh. Today I didn’t feel like being a vulnerable believer, I had completely lost the faith in these people and felt angry that I’d wasted all these years trying to believe I could heal myself.

But my mother pressed him; ‘a shock? How can it be, what do you mean…a shock?’.

‘Don’t get over-excited, let me explain’ he replied at an uncomfortably slow speed. He started drawing questionable diagrams, explaining that because my nervous system got a shock, the peristalsis in my gut wasn’t working correctly. And because of this I had rotten matter in my bowels and I wasn’t able to absorb energy effectively. He wrote a lengthy list of foods I should eat, and shouldn’t and then prescribed me a tonic consisting of all sorts of naturopathic remedies and capsules to take daily.

Looking over at my mum, her expression seemed to have changed from weary cynic, to thankful and converted as she later happily filled the basket to the tune of £86 worth of remedies. I insisted, she didn’t need to bother, and we could just leave. But she firmly asked me, ‘what do you have to lose? What’s one more try? If it doesn’t work, then you’re back at the hospital in 6 weeks anyway’. I couldn’t argue with that.

This all happened in one afternoon. The medical action plan by my consultant, and the naturopathic guru named Mr Mistry and his strict regime of supplements and diet. On the train home, laden with a hessian bag of remedies in one hand, and a pack of ‘Biologics and you’ leaflets stuffed in the other. I felt like the perfect illustration of a confused IBD patient.

And that I suppose is why I decided to write a blog like this one.

love Gutsy.

pills

Continue Reading
  • Facebook
  • Twitter
  • Google+
  • LinkedIn

Recent Posts

  • Here’s to World IBD & Little Ol’ Me
  • Ancient wisdom : swapping grunts for groats & other great grains
  • Top Tips for Feeling Tip Top
  • It’s Not Always Plain Sailing
  • Elimination : A Nutritionist’s Guide

Subscribe


Recent Comments

  • Denise king on Stranded on Hair Island
  • Jonna on ‘Healthy Living’
  • Mouna on ‘Healthy Living’
  • Chloe on Ghosts

Archives

  • May 2016
  • April 2016
  • March 2016
  • February 2016
  • January 2016
  • December 2015
  • November 2015
  • October 2015
  • September 2015
  • August 2015

Categories

  • Guest Posts
  • Living With Crohns
  • Living With Thyroid Disease
  • Nutrition
  • Self Care

Meta

  • Log in
  • Entries RSS
  • Comments RSS
  • WordPress.org
Logo

Copyright, 2015