Bryony Hopkins | A Belly Full Of

I’VE GOT GUTS. IBD Awareness Week Q&A

This is something I’ve been promising for a while and I’m so sorry it’s taken me so long to compile! I first came up with the idea of doing a Q&A on living with IBD in the summer, having been asked a series of similar questions in my DMs for sometime. I wanted to create the post then but I quickly got quite sick afterwards (with my Crohns, classic!) and I didn’t feel like I could write all the answers I wanted to without compromising my mental health. Being open and honest can take it’s toll sometimes, and I seem to find it a lot easier to write about my experiences when I’ve come out the other side – rather than when I’m in the middle!

However, I am so passionate about raising awareness of this wretched illness and so I thought Crohns and Colitis Awareness Week was the perfect time to finally bring this Q&A to fruition. I am constantly overwhelmed by the amazing messages I receive in my inbox and so I really hope this article helps answer some of the most common questions I get. All of these have come in the form of comments or DMs and I really hope it’s useful.

Of course, before we get into this I should say I am NOT a medical professional and so everything I share below is anecdotal and first person experience. I am merely sharing my experiences and if you ever want to change your own diet, or medication, you should always consult your doctor first. IBD is different for every single person and so you should always be mindful that works for me, may not necessarily work for you.

So let’s launch in! This is a long one… so feel free to jump down to see which questions interest you most. I’ve addressed diet, alcohol, social life, work, diagnosis, surgery, medication and much more!

What is IBD?

IBD stands for Inflammatory Bowel Disease, which is an umbrella term for Ulcerative Colitis and Crohns Disease. IBD is an autoimmune disease, which means your body attacks itself and it’s a chronic illness (life-long and ongoing, there is no ‘cure’) The main symptoms are stomach pain, diarrhoea, fatigue, mouth ulcers, loss of appetite and anaemia. IBD can also cause arthritis, joint pain, abscesses, fistulas and eye inflammation. You can be in remission from drugs or surgery and it impacts over 300,000 in the UK alone.

What is an ostomy?

Sometimes, surgery is needed to treat Crohns Disease or Ulcerative Colitis. There are many different types of surgery, which you can find more about here.  In some cases it is necessary to form an ‘ostomy’, which is basically a re-routing of your digestion system. It requires forming a stoma, which is when they bring your intestine out of the stomach and an ostomy bag is attached to collect the waste. More info here.

When were you diagnosed?

I was diagnosed when I was four years old, so literally 22 years ago now. I was on holiday in Wales with my family when I started experiencing some awful symptoms – running to the bathroom and losing a lot of blood. I don’t remember an awful lot about it to be honest, as I was so young and I know lots of people can remember way more about their diagnosis than I can. But I was whisked to a main hospital in Wales where I stayed for a few nights before I was well enough to be transferred immediately to a paediatric gastro specialist unit (the John Radcliffe in Oxford). I essentially completely skipped primary care because I was so poorly, and so young, and my consultant quickly diagnosed me with Crohns Disease.

What were your initial symptoms before diagnosis?

I find this such a hard question to answer because I was so little! A lot of my early childhood with the disease was quite traumatic, so I don’t remember an awful lot. All I do remember from when I was 4 years old was going to the loo A LOT, looking down the toilet bowl and seeing scarlet blood. I lost a lot of weight, was in a lot of pain and therefore it was a pretty swift diagnosis for me.

How did you feel about surgery and talking openly about it?

I had my first operation when I was 12 years old and to be honest, I was absolutely desperate for them to remove my large bowel because I was really so poorly. Even though I knew that meant I would have to live with a temporary ileostomy, I was just so sick of constantly being in pain, not being able to be more than 2 minutes away from a toilet and feeling constantly like I was functioning at 30%. I missed heaps of school, barely socialised and was either blown up like a balloon on steroids or on a liquid diet. There was no other options and surgery literally gave me my life back. That being said, I was of course still a child, so there were many people around me who also had a say in the decision, including my family and the doctors. After the ileostomy surgery and subtotal colectomy, my life was transformed. I went on school trips, parties, holidays – I was suddenly able to do it all. I didn’t however, have the ability to speak openly about it.

I don’t think I felt confident enough to talk about it until I left university at 21. So that was about 9 years after my first operation which removed my bowel – and it was 5 years after I had my ileostomy reversed (that happened when I was 16). I think there were many turning points in my ability to articulate what I’d gone through and how I felt about it. One was meeting my partner, Josh, who has given me more confidence in myself than I probably ever admit! And the second was entering my career and meeting amazing friends at university who accepted everything about who I was and loved me for it. Learning to be open about my surgery has been a process over years and years – and many people, including my family, Josh and my friends, have helped me get there. I never could have imagined at the age of 16 and even 20, that I’d be writing this all down for anyone to read!

In a nutshell (this has turned into a rather long answer!), the journey for every single person is completely different. And you shouldn’t feel like you need to share anything until you’re ready.

Bryony Hopkins

Straight after surgery in 2014, one of many

What was it like living with an ileostomy?

It was…. challenging! But also, amazing because my quality of life improved dramatically. I think it’s important to remember that I had my ileostomy between the ages of 13 and 16 – which is literally the most critical time of your life when it comes to figuring out who you are, how you feel about your body and establishing self confidence. Therefore my memories of how I felt about it are very much skewed by the feelings I had as I went through puberty and so it was quite a negative experience for me in terms of accepting my body. I know however that if I was to need an ileostomy in the future (which is fully possible), I would find it a lot easier to accept because I am so much more confident and comfortable in my own skin. Also the online community is just AMAZING now (which didn’t exist when I had an ostomy!). Two amazing accounts I would recommend are Billie and Where’s My Ostomy.

How do you deal with your scars?

Again, my journey to accepting my scars has taken years! It took me a long time to accept my scarred tummy but now I fully embrace it. The amount of times I have been so poorly I could barely get out of bed, it seems totally mad not to celebrate how much my body has overcome and my scars are part of that story. Of course sometimes I still have self conscious days like anyone else and sometimes when I’m on holiday that centres around my scars. Being in a solid relationship has definitely helped my body confidence, as well as going on girlie holidays and realising mostly people don’t give you a second glance! I’ve written a lot more about scars here and here.

Bryony Hopkins | A Belly Full Of

Proud of my scars, after many years of hiding them away

What medication have you taken?

I have think at some point or another, I have tried nearly everything! When I was first diagnosed as a child I was on a cocktail of extremely high dose prednisolone steroids, mesalazine – and also went on to try Infliximab and Budesonide. I was on azathiaprine for a long time as a teenager. I’ve been on multiple drugs to treat nausea specifically including ondssatron and cyclizine. I’ve also been treated for bacterial overgrowth with big antibiotics and a anal abscess which also required surgery and big old antibiotics. I’ve had the tablets, suppositories, foam – literally every way you can minister drugs, I’ve done it!

Right now I am unfortunately in a little flare up – and I take humira injections once a week (which I do myself) and I’m also taking prednisolone suppositories (THE GLAM LIFE GUYZ).

How do you stay so positive?

The honest answer is that I don’t stay positive all the time – in fact, when the disease is at it’s worse I really am an emotional wreck. Having said that, perhaps it’s just the length of time I’ve dealt with it, I’ve learnt that negative thoughts and feelings don’t actually assist in me feeling any better about things. I have long found that positive thoughts breeds positivity around you – and I am so lucky that I have that in my whole support network. I almost always have someone coming with me to hospital appointments, so I’m never alone for the good or the bad news, and I talk about it A LOT with my Mum, Dad and Josh. Being able to talk about it means I am able to rationalise things and essentially, just get on my daily life!

My emotions are permanently at the surface though and I cry at just about everything (I cried at an advert for a Christmas light switch on last night and I cry at FRIENDS episodes even when I know the outcome!) I guess my best advice is to talk, cry and moan when you need to and do things that make you feel good. For me this is my work, my social life, travel, yoga and reading a good book!

Bryony Hopkins | A Belly Full Of

Incredibly lucky that I have visited some amazing places, including San Fran

Why did you decide to go gluten and dairy free?

I went gluten and dairy free after I completed a 4 week liquid elemental diet to treat a particularly bad flare up of Crohns. It was actually the whole reason the blog was born – and you can see lots of my recipes + my liquid diet story on the ‘A Belly Full of Crohns’ tab.  Afterwards you have to reintroduce slowly on the LOFFLEX diet and during that process I found my stomach pains and bloating significantly reduced when I took dairy and gluten out of my diet. The whole process was supported by my specialist consultant and a dietician.

Everyone is different so of course eliminating these things from your diet won’t help everyone, and other people find other diets work, but this seems to have done me okay for the past couple of years! Being gluten and dairy free does NOT mean I am cured or symptom free. Unfortunately it is quite the opposite, I find gluten and dairy only really helps with bloating and some pain. My Crohns has a mind of it’s own and will play up anyway, meaning even if I am totally free-from these things, I still have mad toilet rushes and lots of pain.

How does alcohol impact your Crohns?

Alcohol seems to constantly impact my Crohns in different ways – and it largely depends how active the disease is and how I’m feeling overall! For example, in a flare up right now I am finding alcohol a massive irritant. Previously when I have been in remission, I found I can tolerate alcohol. This one really is a moving feast and I know everyone with IBD will have a different experience or way of dealing with it. I know some people with IBD who don’t drink at all – and I totally respect that. I personally prefer to judge it based on how I’m feeling. When I’m poorly I’ll avoid – when I’m feeling well, I will enjoy a drink.

Bryony Hopkins | A Belly Full Of

Burger + prosecco = YUM

How do you maintain a social life?

I think I manage to maintain a social life because I have such amazing, understanding friends! They will however probably all tell you I am a massive flake – as I do have a habit of over committing myself and then cancelling when I feel overwhelmed and exhausted. Luckily they are all incredibly understanding, for which I am grateful every single day!

Having a social life with IBD can be extremely challenging though and I have gone through periods where I have cancelled everything because I’m not well. These periods can feel lonely and isolating – and my best piece of advice here is to try and get friends and family to come and visit you. Movie nights and meals at home are perfect for this. Phone calls also are a great way of keeping in contact, even if you don’t have the energy to make it out the house. Being open helps too, so friends know that you are cancelling on account of your health – not because you just can’t be arsed. And any friends who judge you or make it difficult for you – ain’t worth your time.

How does your partner deal with your IBD?

I feel like Josh should really be answering this – but I know it is a constant challenge for him too. No-one wants to see their partner in pain but he is unbelievably positive, always making me laugh at hospital appointments and at my bedside. I know that it takes its toll. I think I should get him to write a proper answer to this!

Bryony Hopkins | A Belly Full Of

He actually hates social media – but he is my absolute rock

Did you tell your workplace about your Crohns and how did you go about it?

This has been a right old journey for me too since I left university, because there is no handbook in ‘telling your employee you have Crohns’! (Ok actually this resource on Crohns and Colitis website is actually pretty good, I wish I had found it when I was first entering my career!) I did tell my current workplace when I first joined and I’m really pleased I did – as two years later I ended up needing surgery and was off for 10 weeks. I think being honest and open as you can really helps reduce your own stress around needing time off for sick days and appointments etc. I enter into every new job with openness about it, but it ultimately always helps me too. This year I even reduced my hours to help manage my fatigue and they were amazing about it – I think because I had that open and honest conversation. It’s difficult for sure, but it does get easier.

Bryony Hopkins | A Belly Full Of

I work in journalism, which sometimes requires very early starts! Here’s me on the radio at 4am!

Does shift work mess with your tummy and how do you deal with it?

Yes it does!! Working as a journalist in a 24 hour newsroom means I have worked earlies and lates and it really messes with my tummy. In all honesty, the only way I have dealt with it is to be open with work and minimise the amount of shift work I actually do. Sometimes I do radio shows which require a 2am alarm and that will always impact my tummy for the rest of the day. I know a few people have messaged me to say they have felt the same – so unfortunately it seems to be a thing!

Do you find probiotics help your IBD symptoms?

Yes and no! I’ll hold my hands up and say I haven’t tried lots of different probiotics and I still find the whole topic quite overwhelming and confusing – especially when it comes to my well and truly messed up gut! I have recently been taking Symprove, which I have found helps with my bloating and pain on a daily basis. However having been on Symprove ,I’ve still had a flare-up – which shows how stubborn the disease can be. I’m not an expert in probiotics and I won’t pretend to be but I do find this one helps balance things out for me.

I’ve just been diagnosed and I’m so scared and overwhelmed. What advice do you have to dealing with this?

This is probably the most common question I get into my DM! Being diagnosed is completely overwhelming and can be totally terrifying (especially when I know people can be misdiagnosed with IBS for months and even years, beforehand). My best advice is to get yourself into secondary care as soon as you can and don’t be afraid to ask your consultant every single question on your mind. The online community is amazing and there are so many blogs and resources out there now, for you to read other people’s experiences. It’s SO important to remember that every single case of IBD is different though, so although it’s great to read other people’s stories so you know you’re not alone, it’s important that everyone’s journey is different. I would thoroughly recommend reading the information on the Crohns and Colitis Website – they have incredible resources.

If you’ve got this far – thank you for staying with me! I really hope it has gone some way to answer some of your questions <3

Bryony Hopkins A Belly Full of Food www.abellyfullof.com

 

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Bryony Hopkins, A Belly Full of Food, Food Dairy Co

The gorgeous pages from the Food Diary Co. Scroll down to find my 10% off discount code – exclusive for you guys!

‘Why don’t you start a food diary Bryony? You might actually be able to see what is making a difference rather than speculating’. That was my Mum, talking to me after I had my sixth open stomach surgery. I was at home undergoing a mega recovery and felt frustrated I was still in pain and discomfort. With nothing else I do, I started a meticulous food diary, which went on to dramatically change my quality of life.

That was back in 2015 and so when Laura from the amazing Food Diary Co got in touch with to share her amazing food diary, I was made up. And also in disbelief. It is so useful and life changing to document what you eat and your symptoms, that someone has actually made a business out of it? What a brilliant thing. At the beginning of the this summer, with my new diary, I started documenting my lifestyle and diet again and just as it did before, I found some hard to ignore patterns. (Scroll down for my discount code to buy your diary!)

But before I get to that, let’s rewind back to 2015. It was the first time I had even thought about documenting my diet and my symptoms and I didn’t really know where to start. I was first diagnosed with Crohns Disease when I was four years old and nobody had ever suggested to me that this might be a good idea. Which seems mad now even three years on – but back then it was a bit of a breakthrough. I started by simply writing down what I ate and rated my pain out of ten. I thought it might be quite poignant to show one of my diary entries, which I dug out of the archives below.

A Belly Full of Food, Bryony Hopkins

You can see dramatically how much my pain changes when I had a drop of milk!

Even just with this very basic method, I was able to deduce that dairy was causing me major problems. My pain shot up to 8 or 9 out of 10 on days when I had milk in my tea, a slice of cheese or even milk chocolate. When you see changes like that, it becomes incredibly hard to continue as normal. I went through a similar process in 2016 to discover gluten was having a similar effect and since I cut them both out – I’ve never looked back, and I’ve never documented what I was eating since.

So when I received my diary, it seemed like a no brainer to start again. The most brilliant thing about The Food Diary Co, is the ability to document SO much more than just your diet. Like so many other people with gut conditions, I am massively impacted by many lifestyle factors outside of my diet. A busy day can impact my stomach. A run of late shifts, lack of exercise or drinking alcohol, can all impact my stomach. Even just a bad nights sleep – that can impact my stomach! And it was brilliant to have a place to jot all this down in my new Food Diary. It became almost like a journal for me – as I was able to write down so much more than just my pain.

A Belly Full of Food, Bryony Hopkins

You can see here the layout of the page, where you can jot down everything from mood, sleep, stress, drinks, medicine and exercise.

Having a place where I could write down everything from sleep, drinks, stress and medicine essentially gave me place where I could actually identify patterns. I’m sure I’m the same as many in the fact that I am very time poor – with a demanding job, a busy social life and juggling lots of commitments constantly. It seems strange saying it out loud, but sometimes I genuinely can’t remember what I ate for breakfast – let alone how it made me feel! It actually became incredibly refreshing to see how I was doing every day – and be able to look back on it, see it in black and white and absorb the patterns appearing.

Living with a condition like Crohns Disease is a minefield – every day is different and sometimes in the fog of fatigue, it can be hard to see the wood from the trees. From looking back at every entry over a month and then looking at the ‘month’ round up page at the back, some of my triggers became clear. I am majorly impacted by stress, lack of sleep, alcohol and unfortunately my one love, coffee. My summer with The Food Diary Co has also made it pretty clear that I can’t do oats in large quantities and I can’t do soya milk everyday. Who knows why this is the case and I am still in the process for hunting for other patterns for other niggles. What I do know now though is that I have the knowledge and tools to make better decisions for my health – based on my scrawly biro writings in my Food Diary. I’ve started reserving my energy so I don’t get burnt out and I always make sure I get 8 hours sleep. These lifestyle changes have essentially made it easier for me to put one foot in front of the other.

Bryony Hopkins, A Belly Full of Food

A veggie pasta packed with goodness

So what top tips would I give if you are starting a diary for the very first time? Throw everything at it and literally write down everything you can possibly think of. Even if it doesn’t seem relevant – jot it down. What this diary is amazing for, is making you see that everything you do has an impact on how you feel. I will even write down ‘cried today about X’ or ‘felt really happy about Y’, because I know my mood is detrimental to my wellbeing. I’ll also write down what medication I took, as well as how much water I’ve drunk. I asked Laura, the fabulous founder of The Food Diary Co, what her advice was.

‘I would say firstly, congratulations! You’re starting a journey to taking control of your gut and health again, and I am so excited for you! Secondly, be sure to check out our blog on the website because we have lots of really great posts that can help you, including our big bumper guide to using a food diary (if you want a downloadable copy of your own to keep, be sure to sign up to the newsletter for your free download!), and the 8 ways I used my food diary to heal post. That one is all about the habits I formed to help me successfully keep a food diary.’

I hope this post has given you some food for thought on starting on a food diary journey, I would love to hear your thoughts. Better yet – to get you kick started you can use my exclusive discount code for 10% off a beautiful Food Diary Co! 

Use the code ‘BELLY10’ for 10% off at the check out – and get in there fast! The code ends on 31st October 2018. Click here to buy.

Cannot wait to hear what you think!

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** I was gifted the diary for free, but was not paid for this post. All reviews completely honest.**

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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.

Bryony Hopkins

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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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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After my Crohn’s journey blog post for World IBD day was picked up by Huff Post, I was over the moon when they asked me to write another piece for their campaign ‘Everybody’. The campaign seeks to redefine and empower those living with disabilities and invisible illnesses, whilst raising awareness of the modern lifestyle with such conditions. I took this opportunity to write a piece about positive body image when your body has been through the mill – and I’d love to share it with you below.
Let’s take a minute to talk about positive body image. Do you feel positive about your body? Do you love everything about yourself? Do you embrace everything you have and your flaws? This question is becoming increasingly hard to answer. Now imagine you have something on your body which is a little unusual. A scar, stretch marks, a burn… or in some cases, a little part of your intestine sticking out of your stomach to form an ileostomy bag. This little bag has saved your life. The scar has saved your life. Yet why is it so hard to get it out in public?
I have lived with an invisible illness for over twenty years – which at the age of twenty-five, is pretty much my entire life! Crohns Disease is an autoimmune disease, which can affect any part of the digestive tract. The body attacks itself, causing bleeding, ulcers, extreme stomach pain, nausea and diarrhoea (I know, mega glam!) I am just one of over 300,000 people in the UK living with Inflammatory Bowel Disease (we abbreviate to IBD). The disease can manifest itself in a million and one ways, which mean every single person’s journey is different. No two IBD stories will be the same – but the feelings at the core often are. My journey started when I was four years old and to date I have been under the knife seven times. Which means of course, my body has taken a bit of a bruising – internally and externally. Simultaneously, my confidence has taken multiple blows too.

The journey I have come on to accept who I am and what I look like has been long, arduous – and painful. And I’m not talking physical pain here; I’m talking about gut wrenching emotional pain.scar 2016 At the age of twelve my large intestine was so ulcerated and swollen, the only answer was to remove the whole thing. To be in a position where your body is rejecting an organ is a funny concept to get your head around, but I was so sick, I just wanted it out. To remove this, they had to make a 30cm incision, from just below my chest to below my pelvis. They then had to form an ileostomy, which I lived with for three years. This ileostomy transformed my quality of life and medically, I was the healthiest I had ever been. My confidence however, was on the floor.
My family has always instilled a great sense of perseverance in me, and so even though my teenage years were a monumental struggle, I still did everything my friends did. I went on school trips, sleepovers, did P.E classes and even had boyfriends. But I was constantly anxious, private and not myself. It was like my ileostomy and my scar had wrapped me in a Perspex box and I whilst I was physically there, I couldn’t engage in the way I wanted to. Most of all, I kept everything a secret. I didn’t talk about my Crohns, I certainly didn’t talk about my bag and I DEFINITELY didn’t talk about my gut issues. This was ten years ago now and I have since had my ileostomy reversed, but the memory of how I felt remains strong. I often open up my social media accounts and feel proud about how much awareness has been raised in the past few years and how many people are open about their IBD experiences. There was a time when talking about gut issues was taboo and embarrassing. Whilst it still might not be the best dinner chat, the grow of Insta-famous nutritionists and health bloggers mean there is now a forum for talking about this kind of stuff; there is a community sitting there waiting for you to unlock it and find the support you need. The fact I am even writing this article is a beautiful thing!! The growth of online support and awareness really couldn’t come at a better time; the rate of IBD diagnosis’ in young adults is at an all-time high… and rising.
Scars are beautiful because they demonstrate a battle won. The point is that there is no such thing as an ‘imperfections’. Who defines what is or isn’t perfect anyway?! If you have stretch marks because you’ve carried a baby, own it! If you have stretch marks because you’ve gone on an incredible journey to lose weight, own it! If you have spot scars from your teenage years, own it! And why should you own it?bryony bikini 3
Because ultimately, not accepting the way you are will only make you unhappy. Everybody is beautiful in his or her own way. If you’re body has overcome something amazing why should that be hidden? I’m not saying it’s easy by any stretch of the imagination, and there will surely be tears lost along the way to finding your way to body confidence. I used to walk around in a bikini with my hands covering my belly to hide my scar! But to my mind, if your body has been through the wars and has overcome it, then it should be screamed from the rooftops! MY BODY IS AMAZING AND THIS SCAR SHOWS YOU WHY!
Living with an invisible illness is a paradox, with which I still struggle. I want to look healthy and the same as all my peers, yet I also want people to understand the pain and struggles felt on a daily basis. Whilst looking completely normal, I want someone to rub my back and say ‘don’t worry Bryony, I understand you’re in pain/you feel sick/ you’re exhausted… Why don’t you take it easy today?’ On paper, it sounds absolutely bonkers (and also SO unrealistic!!) – yet this is the genuine dilemma of so many of us living with invisible illnesses. You can’t see it, so I’m fine, right!? It’s a total double-edged sword. Yet I’ve come to realise that humankind is pretty amazing at times. People understand more than you know and if they don’t, I’m no longer scared to put the record straight. Everyone has life experiences, which should be shared and learned from. Visual body victories are no different!! Share your knowledge, own your scar and tell the world what you’re all about. Your perspective on life is unique; and so very precious.
How is your body amazing? I’d love you to share your stories with me – in the comments below or on my social media channels to the right 🙂
Read the article in Huff Post here. 
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