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.

IMG_2726

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.
IMG_8266
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!

IMG_6942

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

bryonyhopkins

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.

Steroids, crohns

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,

crohns disease, liquid diet

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.

hospital pic 1

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.

scar 2016

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.

FullSizeRender

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.

IMG_5370

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.*

img_1729

bryonyhopkins

This Friday 7th April is World Health Day – but what does it actually mean to be healthy? For me, being healthy is having a handle on practical things you can do to make your life easier and make you feel better about yourself. If you feel better about yourself, your body and your emotions, then surely that is a one way ticket to feeling healthier.  So where should you be looking to feel healthier? You should be looking at YOU!
Perhaps you could start by asking yourself some of the following questions…
How is your health?IMG_4859
Okay maybe this is an alarmingly obvious question, but often we neglect to ask ourselves. How is your health? Are you on an even keel, or are you particularly tired? Are you in any pain or rundown? Are you feeling in good shape? Are you feeling happy with your body? There is often no easy ways to answer these if you have a chronic condition. Like me, suffering from Crohn’s Disease, I’m never quite sure how my health is! But I can recognise when I am over worked, over tired and stressed and I know that these are vital keys which can unlock a whole host of problems for me! It might be worth also giving my Listening to Your Body article a read, to help you get more in tune with your body! Answering all of these honestly will get you straight on the path of figuring out what tweaks you need to make to your lifestyle to start feeling healthier.
What are you eating? Is it making you feel good?
This can be a hard question to answer but I think it’s vital to start working out where you’re at with happy and healthy eating habits. Essentially – it’s not just about what you eat, it’s also about how you feel about eating. Our emotions are strongly linked to our eating habits – I think we’ve all reached for chocolate or ice cream when we’re feeling low.

IMG_5010

I switch to really easy foods when my stomach is playing up – like this simple turkey noodle soup

So really this question is about honestly asking yourself if your food choices are making you PHYSICALLY happy. Sure, chocolate may feed an emotion, but how do you physically feel after? For me, I love cheese (like, really love cheese), but it was making me so bloated and giving me terrible stomach pains. Despite the fact I loved it, I knew I had to cut it out and it turned out that it was dairy entirely which was causing me problems. Sure it takes willpower to cut out something you love, but if you feel better afterwards it’s a no brainer! I discovered this by writing a food diary and documenting all the things I had eaten that day and how I felt afterwards/later at the day. I think this is a fabulous way to get in sync with how your body is reacting to what you put in your mouth. Evaluating and understanding what you’re eating and how it’s making you feel is the first stop to feeling better and healthier about your diet.
Are you exercising?
We are absolutely barraged with advice on how we should be exercising these days. Running, weights, HITT, yoga, Pilates… but really you need to find w

IMG_4429

Me pre yoga at The Life Centre, in Notting Hill, London

hat works for you. I find it completely overwhelming sometimes, and that’s even before people have started telling you what they do to stay fit! You have to go with what feels right for you and not what everyone is telling you. I have friends who do PT sessions – but I sure as hell couldn’t think of anything worse! Instead, I signed up for a beginners yoga class and learnt the basics. It’s good for all of us to exercise – but there’s no point doing a fitness regime you hate.
Are the people around you making you happy?
Another hard question to answer, but it’s worth considering what your support network is like around you and do they actually make you happy?! This could be a colleague you always talk to or a friend who drains the life out of you… if you’re not getting anything out of a relationship, is it a relationship worth having?
How do you relax?
Arguably, I think this is the most important question of them all! How do you get your ‘me time’? It might well be exercising – or it could be reading a book, watching your favourite TV programme, meditating or practicing mindfulness.  Whatever it is, make sure you’re making time to actually do it! A relaxed soul is a happy soul – and a happy soul is a healthy soul!
Happy World Health Day 🙂
img_1729

bryonyhopkins

Happy Monday gorgeous gang! This has been a jam packed year already and I’m super excited to use this post to make a few announcements – all blog related of course. Thank you to all of you who have been reading and enjoying my posts so far – it’s given me such joy to develop recipes, review my favourite eateries and share my Crohns story with you!
First off – A Belly Full Of now has its very own Instagram account!!
I’ve already reached over 100 followers in just three weeks, which has been just brilliant (everyone loves a food pic!) Give @bryonyehopkins for loads more recipes, food inspiration, Crohns updates and tips on living and managing IBD.

c4ptqsywaaayp3p

Find me on Instagram! @abellyfullofbryony

Secondly – I’m starting a Nutrition course tomorrow!
This is something I’ve been thinking about starting for months now and I finally found a good’un at The College of Naturopathic Medicine in London. I’ll be taking a short course in ‘Nutrition for Everyday Living’ and will be feeding all my new found knowledge back into my posts! a138890e4646fecda59789f343ebc053The course syllabus is going to offer me a wealth of nutritional knowledge, recipe and wellness ideas – particularly focusing on food as medicine. It feels like the natural step to take this blog further into this hugely competitive market – aside from the fact that I personally want to understand more about IBD and diet! It still surprises me how much what I put in my mouth impacts the way I feel.
Thirdly – I begin my yoga journey, tonight!
Again, this is something I’ve wanted to do for years, but something I’ve always put off because I’m too busy/stressed/poorly etc. I’ve done a few ad hoc yoga classes and found them hugely strenuous on my delicate belly – being cut open 6 times doesn’t do great things for your stomach muscles! So I did my research and signed up for a fantastic Beginners Course at The Life Centre in Notting Hill, London. I felt learning under a basic environment would give me the chance to learn at a pace that is comfortable for me and my stomach. I’m really looking forward to sharing my experiences with you!
That’s all on the announcement front, but I hope you’ll check back in soon. It’s such an exciting time for my passion project and I really hope sharing my experiences benefits you too! If you have lived with IBD for a long time, have been newly diagnosed or just enjoy a healthy lifestyle – I hope my journey to health will inspire you to give something new a try.
img_1729

bryonyhopkins

Since the reintroduction phase of food after the liquid diet, I’ve managed to remain on a fairly even keel with regards to what I can and cannot tolerate.

porridge-1

Delicious coupled with a chocolate shake!

Randomly and inexplicably, I recently discovered that oats are not my friend, which really messed up my morning porridge routine. I tried quinoa flakes instead and again, these weren’t easily tolerated. With a weird fear of these grains, I went on the hunt for an easy on the stomach alternative that would still fill my porridge void. Enter rice flakes! I haven’t come across many recipes which include these lovely morsels but they are so warming and simple.

This recipe brings together some delicious textures for your morning breakfast!

Ingredients (Serves 1)

For the porridge:

 50g rice flakes

250ml of almond milk – or any other plant based milk

Toppings:

Cinnamon

Date syrup (honey also works)

Banana/nuts/raisins/sunflower seeds

Method

Simply put your rice flakes and milk in a bowl and mix together. Put in a microwave for 2 minutes, until mixture is piping hot. Now leave your porridge to stand for 2 minutes – you will notice the mixture starts to thicken. Leave until desired thickness is achieved and sprinkle cinnamon over the top. Arrange your sliced banana/nuts/raisins/seeds over the porridge and then squeeze over date syrup.

porridge-2

Yummmmm

Tuck in!

img_1729

 

bryonyhopkins