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 event

I will forever look at this photo and wonder how I look so awake at 7am. (Photo: Emma Parlons

In early July, I was absolutely delighted to host my first ever A Belly Full of Food event. This has been something I’ve been keen to launch for a while and I was so excited when everything began to come together for it. I kept it super small for my first event (I’ve never even organised something like this before!), and so I really wanted to write a little about it so I could share it with more of you and hope you will be able to join me for the next one!

Bryony Hopkins, A Belly Full of Food event

Rhiannon Lambert & I mid gut health talk!

For anyone who follows me or reads this blog, you’ll know that I am a HUGE foodie and also mega passionate about educating people on living with IBD. As a journalist by day, I am hugely motivated by getting evidence-based knowledge out there and educating others about how food can play a role in a disease of this nature. I find the online world hugely frustrating at times, when I see influencers advertising products, which are not necessarily based on evidence and the messages out there are confusing and conflicting. This is something I was really keen to address in my first event, and I was so delighted that Registered Nutritionist Rhiannon Lambert came to speak and share her nutritional knowledge (more on this below!)

Bryony Hopkins, A Belly Full of Food event

The gorgeous spread of brightly coloured fruit outside

A Belly Full of Food breakfast mingle came around when I stepped into the doors of the gorgeous Panzer’s Deli, in St Johns Wood and met the amazing team there. We worked together on hosting this first gut health foodie event under the A Belly Full Of brand (eeeeek!)

The aim of the event was mainly education – to learn about gut health, including IBD and IBS and also gathering together some foodies to eat some amazing food! I was so lucky that Panzer’s Deli put on an amazing spread, which catered for gluten, dairy free and vegan, including the most insane fruit salad, fresh berries, coconut yogurt and artisan coffee made to order. Everyone gathered to eat the delicious food, before I introduced the special guest, which was the lovely Rhiannon Lambert of Rhitrition.

Bryony Hopkins, A Belly Full of Food event

How epic is this gluten free and vegan spread at Panzer’s Deli?

Rhiannon was absolutely focal to the goal of my event, as a Harley Street nutritionist, she knows everything there is to know about food, nutrition and gut health, and would never say anything that wasn’t rooted in evidence and research. Together over half an hour, we discussed IBS, IBD, Coeliac Disease and some gut health basics. Along with the huge support from Panzer’s Deli, a wonderful friend Sarah from BTempted Cakes bought along her brand new vegan and gluten free cupcakes for the goodie bags – what a way to start the day!!

Bryony Hopkins, A Belly Full of Food event

Feeling so excited to have the first event go so well and gives me so much pleasure to announce that this isn’t the only A Belly Full of Food event. I can’t wait to share the details of the next one with you – a much bigger event which won’t start so early in the morning! I’d love to hear any other health topics you’d like me to look to cover in the future – not just gut health, but anything! This concept is really about educating on a wealth of health conditions and topics. Hit me up with your suggestions below (or via Twitter, Instagram or email). I really would love to hear from you!

Bryony Hopkins, A Belly Full of Food Events

My beaut GF girlies bought me flowers and it was just the loveliest moment. GIRLS SUPPORTING GIRLS

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

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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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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.

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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

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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 🙂
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bryonyhopkins