Last night I posted a spontaneous story sharing how I was feeling as I go through a bad patch with my Crohns Disease. What started as a raw moment of honesty ended up with me somehow ended up going off on a tangent, stating the fact I still take medication for my Crohns Disease and I am not ashamed to say so. The replies and outpouring of people thanking me for being so honest was incredible. A couple of people told me they had fought against taking medication themselves, because it seems like a ‘goal’ to be med free and this got me thinking. What world do we live in that there is a whole tribe of people boycotting medical intervention? And not only that, there are people on social media who are willing to tell us we are wrong to take medicines, based on absolutely no scientific evidence? In fact, in response to the story I posted I received a message telling me I should try another natural remedy and if I did, I wouldn’t need medication. That literally sums up the entirety of the problem we are facing. It really has me scratching my head and feeling desperately sad and worried about the way the ‘wellness’ word is shaping how we feel about meds…

It seems bizarre to me that I even have to state that it’s okay to take medication when you have a chronic illness and when I said it on my Instagram story; I really wasn’t expecting such a reaction. Inflammatory Bowel Disease is an autoimmune, which literally means your body is attacking itself. It is completely irresponsible to think that no medical intervention for such a venomous disease is needed. This has really made me quite concerned that anyone reading or finding my story online might be lead to believe that I have ‘cured’ my Crohns through diet alone, because this is absolutely factually incorrect. I won’t recap my life story, but please do read my whole Crohns story here.
So here are the facts. I have been on medication pretty consistently and in some form since I was four years old, even since I have done my liquid diet and since I had my ileostomy reversed. I take humira injections every fortnight and I have just finished a course of mesalasine suppositories for constant bleeding (these are unpleasant, think of pills that go up instead of down!) I take Ondansetron on days when I feel so nauseous I might pass out, a drug which is used for cancer patients and I have done all of these things since I went totally gluten and dairy free, and since I upheaved my lifestyle.

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No amount of dairy or gluten free would have meant I didn’t need the surgery I have needed.

So what is it about wellness and health on social media that has led us to feel like we should be ashamed of taking medication? And why have even I, at points, felt like a failure because I still have to take medication alongside my dietary and lifestyle changes, otherwise my intestine literally might disintegrate? This is such a hard question to answer but I think its two main reasons.

  1. We know of several hugely successful health bloggers and Instagrammers who have made their fortune based on ‘curing’ their chronic illness through diet. Whilst they may not have directly said they don’t take meds, it has lurched us towards this ideology that it is possible for us all to achieve this goal, whilst we forget that every single one of us is completely different and unique.
  2. We want a message that is clear and simple. I.e. – ‘you can put your IBD into remission if you’re gluten free’ or ‘if you’re vegan you won’t suffer from your psoriasis’. These claims are wildly dangerous and not evidence based BUT they are clear, and so they gain attraction. It’s the same as a punchy news headline. The message ‘I am gluten and dairy free but I also take injections, and suppositories and anti-sickness tablets and to honest sometimes I still don’t feel great’, is a less eye-catching strapline.

So where does this leave us? It leaves us angry, defensive and confused. I should say at this point that I honestly believe I have radically changed my quality of life due to making some diet changes, but has my Crohns gone? Of course not. Am I still on medication? Yes. And what happens if I stop my medication? Well, things fall apart pretty quickly. I believe diet is an absolutely integral part of dealing with a disease which manifests in the gut, but I feel angry and upset that social media has led us to a point where we feel like we can boycott medical intervention because someone slid into our DMs to tell us better.

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I have tried every treatment, up heaved my lifestyle and still rely on meds. That’s just IBD!

So if you’re reading this and follow me, I really hope you know and appreciate that I enforce all dietary and lifestyle changes alongside medical advice recommended by your doctor. Sometimes of course, we make our own decisions regarding medication/surgery/treatment – but this isn’t me saying to ignore the advice of medical professionals. And if you take medication to stay on track of your life, then own it! The clear message here is that every single one of us is completely individual and unique. What works for one person, might not work for another, especially with a disease as complicated as IBD, and so we should remember that when we are flicking through social media.  Anyone can say anything these days – so make sure you are getting your information from a reliable source.
Do I hope one day I might not need medication to keep me well? Of course. But I just want to live a full and healthy life – and at the moment, my meds help me do that (most of the time!)
As one of my wise followers DM’ed me ‘If diet was the answer to cure IBD, we would all be well!’
BRYONY HOPKINS, A BELLY FULL OF BRYONY

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We saw in the New Year at Sky Gardens – a day I felt good and it was bloody brilliant.

I’m not sure if it’s too late to say Happy New Year, but seeing as this is my first post of 2018, I feel it’s appropriate to say!
My new year started with a bit of a bump, as all of you who follow me may know I have Crohns Disease, which I write about quite regularly. This little hiccup has really reaffirmed to me that all I ever really want each year is good health. Health to be happy, good health to live my life and good health to enjoy every day to the fullest.
I’m sure many of you fellow Crohnies will relate to knowing that you’re really operating at 50% and so, I have compiled a list of 10 things it’s okay to feel when you’re going through a bad patch with your chronic illness.

  1. It’s okay to stop and admit you feel like s**t
  2. It’s okay to lean on your friends and family
  3. It’s okay not to be strong all the time
  4. It’s okay to cry
  5. It’s okay to be angry
  6. It’s okay to want to talk about it, over and over again
  7. It’s okay to look after yourself and be antisocial
  8. It’s okay to research and understand every single treatment and medication possibility
  9. It’s okay to jump to the worst conclusion and mentally prepare
  10. It’s okay to be frustrated when people don’t understand

 These are some mantras I’ve had to keep reinforcing for myself recently, particularly as my body is fighting so hard; I am sometimes too exhausted to be rational (cue literally tears about everything, putting slippers on wrong way, jumper back to front.. you get the jist!) Although, I think the above could apply to many life situations and I think it’s important to remind each other that we don’t have to have a brave face, everyday.

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31st December 2017. Always sparkles. Always optimistic.

So although 2018 hasn’t started as I wished (sick days, hospital appointments and spending too much time resting), every bump on the road reminds me what to be grateful for and helps me remain positive that the blip will pass – and the year will continue with ease. These mantras help me hold onto the good days – and try to forget the bad days.
It really is true, that the greatest wealth in life is health.
BRYONY HOPKINS, A BELLY FULL OF BRYONY

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This blog post has been in the pipeline for a few weeks now. Well, since my gastro consultant told me for the first time in my entire life that I’m in ‘clinical remission’ from my Crohns Disease. Big announcement. Big two words – two words I wasn’t expecting to hear, AT ALL! (See below for what remission means)
I’ve spent a lot of time thinking about what it means to be in remission and how my body feels and I think it’s important I share this. Let’s rewind quickly first though… why was being told I’m in ‘clinical remission’ such a big deal – yet such a surprise at the same time? I was diagnosed with Crohns Disease at the age of four – which now at the age of 25, is a staggering 21 years ago.

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Loving the liquid diet life back in April 2016…

I recently candidly told my story for the first time for World IBD Day, which was featured in the Huffington Post. You can see the article here.So 21 years of fighting, dealing with medication, being cut open time and time again… until spring 2016 when I found myself in the middle of ANOTHER FLARE. All I could think was geez, not this s**t again.I was told outright I needed to go on high dose steroids to get things under control and I just couldn’t do it. I made the decision to go on a four-week liquid diet – which turned out to be a massive turning point in my entire Crohns journey. You can read about my liquid diet journey here.
So fast forward a year, and I’m sitting opposite my consultant who has seen me through thick and thin since I was 17. He’s a straight talking man, but a man I know has a lot of time for me (it’s a personal challenge every single appointment to make him crack a smile! I succeed every time, obvs). We run through the usual things and out of nowhere, he says ‘well, it looks like to me you’re in clinical remission’. There was a long pause, until I said, ‘well, nobody has ever said that to me before!’ Cue the smile from Doc and he said I’m by far the healthiest he’s ever seen me. He let me go after agreeing to reduce my adlimumab injections to every fortnight and told me to enjoy the summer.
I walked out the hospital in a complete state of disbelief. CLINICAL REMISSION – WHAT THE F**K? How did that happen? How did I not even see that coming? I still suffer stomach pain, bloating and fatigue. Whilst I’m not passing blood, I still have to manage my lifestyle to contain my symptoms. I evaluated the past year since the liquid diet and it finally dawned on me. This remission isn’t a result of adlimumab , a drug I have taken for over 7 years now. This remission was a result of me changing my diet and lifestyle. As I travelled back into London from my specialist hospital in Oxford I thought – I BLOODY DID THIS. And how have I gone 21 years without anyone telling me to evaluate my diet and lifestyle sooner?!? I felt weirdly elated yet frustrated that I could have done something a lot sooner if I had known what impact a year of change would make.
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I continue to feel extremely lucky that I’ve reached this point in my life, but I still won’t be lured into feeling secure. I have had a few people say to me now ‘oh you’re in remission? Well brilliant, you’re alright forever now then!’ Well no, that’s not quite how it works. As we all know, IBD (I’m talking Crohns & Colitis here) is a chronic condition and can rear its ugly head at any time. A fact that I’ve been conditioned to never forget (although I wish I could!) Additionally, being in ‘remission’ doesn’t mean I no longer feel pain, bloating and extreme fatigue. I still have to very carefully manage my life and diet. Eating one thing that disagrees with me, being too exhausted or stressed can quickly send me in a little downward spiral. Self-management and self-care doesn’t stop at the phrase ‘clinical remission’… the journey never ends!
Having said that, the biggest lesson I have learnt is that the medical professionals don’t always know EVERYTHING. Don’t get me wrong, I wouldn’t be where I am today without the incredible support from my Gastro team at the John Radcliffe in Oxford, but it was my decision to do the liquid diet and make a lifestyle overhaul. That being said, it’s not always easy and there may be a lot of trial and error. What I’m saying is try different things, do your research and know that you can make a difference to your illness.
And for me – I’m going to live life the fullest and continue sharing the journey with you!

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Sunning in Marbella with my favourite people and smiling because I can!

**So what is ‘remission’? Achieving remission means stopping symptoms as well as inflammation. Another way to think of remission is as a span of time when your disease becomes inactive or quiet.**
As always, I’d love to hear what you think.
Follow me on Instagram here. And on Twitter here.
BRYONY HOPKINS, A BELLY FULL OF BRYONY

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Lots of people have been getting in touch recently asking for Crohn’s or IBD advice after being first diagnosed and I suddenly thought it would benefit others to write down my entire Crohn’s story – warts and all, from start to finish (well, to present!), for World IBD Day today. I was diagnosed at the age of four, and now at the age of 25, I’ve experienced A WHOLE BUNCH OF STUFF, including lots of abdominal surgery (yes, I’ve had a ileostomy) and medication. I sincerely hope that documenting some of my experiences may help others suffering from IBD, those who have just been diagnosed or just want to understand more about the illness. It’s a confusing and ever changing illness and I must stress that every single person with IBD is individual. What works for one person won’t work for another – there is no IBD ‘path’ – you just have to carve your own story! (So basically, don’t freak out if you’re newly diagnosed and reading this!)

So let’s start with diagnosis, and to be honest, I can keep this pretty brief, seeing as I was four years old and I really don’t remember much! I was on holiday with my family in Wales, when my parents noticed I was getting extremely pale, not eating, losing weight and going to the bathroom A LOT. On one horrible morning when my mum asked me how I was feeling, I told her I was losing blood. I went straight to a hospital in Wales, where I was admitted and quickly transferred over to an expert gastro unit in Oxford, where I was diagnosed with Crohn’s Disease. And that was the start of my IBD journey! I should add here that Crohn’s Disease is an autoimmune disease – it is your immune system malfunctioning.

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Let’s ignrore my questionable haircut and my brother’s weird face. On steroids in primary school

In simple terms, the body eats away at the digestive system, causing inflammation, ulcers and bleeding anywhere along the digestive tract. I was at my sickest as a child; I remember countless birthdays and Easters spent in hospital. My first treatment was steroids, which sent me completely bonkers and made me put on weight faster than an inflating balloon. My disease was ravaging my large intestine, and although the steroids worked for a short time, as soon as my dose was reduced, I would start to flare again – big time. I went through cycles of mesalazine, azathioprine and infliximab, but nothing would calm my angry insides.

When I was coming up to about ten years old, I went on my first liquid diet. By this point, the conversations about having to remove my large intestine had been floating around for some months now. It was pretty clear that the disease was extremely resistant– it wasn’t responding to any medication. The liquid diet consisted of drinking cartons of Elemental 028, a nutritional drink designed to be absorbed instantly into the body, with your gut having to do absolutely zero work. As I was about to enter puberty,

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I thought I wore it well tbf. At school age 11

I was required to consume even more of the liquid to ensure my growth wasn’t stunted. It was physically impossible to drink the required amount, and so I would sleep with a tube that went up my nose and into my stomach and the rest of the liquid would be pumped into my body. In the very early days of the liquid diet, it was so traumatising having the tube passed up my nose that I didn’t want to take it out – so I went to school with it. The psychological battle was immense, but the liquid diet was my most effective treatment yet.

Alas, a few weeks after I started eating again, the Crohn’s returned with vengeance and at the age of twelve, I had an ileostomy formed. By this point I was practically begging them to take my large intestine out – I was tired of being constantly sick and living this half life in and out of hospital. Still being so young, they were reluctant to actually remove it all, and hoped that bypassing it via the ileostomy would help it heal. It did not. Nine months later I was back under anaesthetic and had my entire large intestine removed – with the exception of a tiny bit at the rectum. This tiny bit of intestine turned out to be my saving grace. Due to the mechanics of the colon, because I still had that little bit left, there was a chance they could reconnect my small intestine with the end of my large intestine and a chance I could be bag free in the future. To be honest, I think this is what got me through. Although I was desperate to feel better, nothing could prepare me for the emotional and psychological difficulties of living with a bag whilst I was going through puberty. A teenager is self-conscious enough as it is right – without having to worry about part of your intestine sticking out of your stomach! The three years with an ileostomy are a blur now, but it dramatically changed my quality of life. I finally had my life back. I was able to function – I was able to go to school everyday. I was able to hang out with my friends. I didn’t have to take drugs, I could eat what I wanted and I wasn’t at the mercy of my disease anymore.

When I reached the age of sixteen, the ileostomy had done its job and I was rewarded with a bag reversal. Another major operation, reopening my entire 30cm scar and another scar left where the ileostomy once was, but I was completely liberated. FREE FROM A BAG! Lollzzzz but totally not free of Crohn’s. I was actually pretty healthy doing my ALevels and I secured my place at Loughborough University to do a degree in Drama with seeming ease (health wise at least!) I had the most amazing time at university, but during this time, the Crohn’s began to spread to the lower part of my rectum and small intestine, and so I was put on Humira – a weekly injection administered myself. This managed to get the Crohn’s under control, but by my second year I was struggling with repetitive obstructive symptoms. I was in and out of hospital, in and out of A & E, and it came to pass that they had to operate.

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After my sixth operation, I asked my Mum to take this to let me friends know I was ok. Two hours out of surgery, I have no recollection of this being taken!!

Again. They found and closed an internal hernia, as well as adhesions, which were causing the obstructions. A year and a half later, just as I was completing my finals, the obstructive symptoms started again and after a particular memorable experience where I lay in a hospital bed in Leicester, surrounded by my friends and boyfriend who had fled a night out to my aid, I was under the knife again. Looking back, it was perhaps the immense amount of partying (I’m only human!) that took place over these three years that led me to need these two ops. The toll to my body was great and as I was recovering from my fifth operation, I began to ask myself, would these operations EVER stop?

After recovering from this fifth op, I plodded on quite well for a while. I got myself a job at the BBC as a Researcher and plunged myself into the world of commuting and full time work. I’d be lying if I said it was easy, my body took a while to adjust to the exhaustion. After my 21st birthday, a hernia popped up on my scar. LO AND BEHOLD – ANOTHER OPERATION. By this time I was officially at breaking point with being opened up so many times. I remember vividly bursting into hysterical tears in front of the surgeon and asking him, ‘WHEN WILL THIS END?’ I like to think I am an extremely strong individual, but I just couldn’t take any more operations. The isolation of the 8 week recovery alone was enough to send me completely insane, let alone the physical shock of going through all that pain over and over again.

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Apols for the faint hearted here, but this was post my sixth op. You can see the little scar from my ileostomy too

I guess the positive of undergoing such repetitive surgery was becoming proud of my scar. It’s 30cm long, stretching from just below my chest to below my pelvis and it’s extremely visible. I wear it loud and proud now and I take the stares on the beach to mean, ‘wow – that girl must be made of steel!!’

I got to spring 2016, when I started to relapse again and I was given the choice, which lead me to start writing this blog in the first place. Sat in front of my gastro specialist, he told me I needed a quick treatment that was guaranteed to work – steroids. I couldn’t do it to my body- I couldn’t do it to my mental health! So I took on the one month liquid diet, which is where this blog was born. It was honestly the best thing I ever did and despite the mental battle, I came out feeling amazing. My skin was glowing and I appreciated the impact of what I put in my body more than ever. I reintroduced food gradually and found I was intolerant to whole food groups by keeping a food diary for weeks, which has further kept my tum happy. You can read my liquid diet journey here. In October, I learnt to meditate – a skill, which my paediatrician had tried to introduce to me during puberty. You can read more about my journey to meditation here.

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Ended up forming quite a bond with my liquid diet cartons

Since then I have taken a short nutrition course, started yoga classes and started experimenting with what I eat and how it feels in my tum. I feel so very grateful for the journey I have come on to where I am today. I whole-heartedly believe everything happens for a reason and my IBD journey was meant to lead me to where I am today. To stand tall, tell my story and be confident in who I am. Because there are thousands of stories like mine that aren’t being shared, or are being misunderstood. IBD ain’t glamorous. Heck, I’d enjoy a day where I didn’t think about my gut – but that is the reality for so many of us living with Crohn’s Disease or Ulcerative Colitis. This is what we live with and we plod on. We make mothers, fathers, partners, friends and colleagues and STILL battle the debilitating symptoms of IBD – with a smile. I dare anyone who is embarrassed or struggling to deal with their IBD to speak out, confide in a friends/family and realise YOU ARE STILL B****Y BRILLIANT. IBD will not rule your life.

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Living and loving life in Bali – wearing that scar loud and proud. YES I’VE BEEN TRAVELLING TOO!

If you’ve got to the end of this epically long post, then thank you so much for reading and I hope you have taken something from my story. I would welcome comments/feedback  (comment below!) and any of your stories. I would love to hear them all.

Happy World IBD Day!

*I know I haven’t just written a book, so to do a thank you sounds weird – but I can’t write this and not mention the amazing care I have received over my entire Crohn’s journey from the gastro team at John Radcliffe Hospital. They have always answered all my questions, listened to me when I have said no, given me VIP treatment and taken the best possible care of me. Brilliant, brilliant team.*

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