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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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.

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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