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.

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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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Edinburgh, travel guide, scotland, arthurs seat, A Belly Full Of

Climbing to the top of Arthur’s Seat and being blown away of the views of Edinburgh!

Over the Easter weekend I spent a glorious 72 hours in Edinburgh with my partner in crime Josh, and wow, what a gorgeous city. I switched off my social media for the weekend to truly enjoy this incredible city and now I am sharing my top tips for eating gluten and dairy free, and what to see and do, in this city.

Scotland, Arthur's Seat, Bryony Hopkins, A Belly Full Of

That fresh air makes one very happy!

It helped that I was absolutely inundated with suggestions of great places to eat and drink, and for a relatively small city, we were absolutely spoiled for choice! Having said that, most of our finds were on the hoof as we explored, so I hope these gems add to the ever-growing list of allergy friendly places to eat in Edinburgh.

Friday PM and Eve

Edinburgh streets were just gorgeous. This taken on Victoria Street.

So after settling into our gorgeous Air BnB (see below for my tips on accommodation in Edinburgh!), we went on a wonder in the city and came across the pizza parlour Amarone, recommended by the lovely Gluten Free Gatherer and I just had my heart set on pizza for dinner, so we booked ourselves in for that eve. We were also famished, so we stopped off at a brilliant little coffee place called Fortitude Coffee where I had a sticky toffee loaf, which was vegan and gluten free with a black filter coffee. Delissshh and easy to miss, although that loaf was the only allergy friendly option.

Black americano and sticky toffee loaf. The icing was YUM!

Onto dinner and I absolutely loved Amorone (recommended by my pal, the Gluten Free Gatherer!). I went for a chicken and pepper number, without cheese and on a gluten free base and was very impressed. None of this rubbery or tasteless base business, this was extremely crispy. Definitely would recommend!

Unfortunately no vegan cheese, but still delicious with a tomato base

Saturday
The morning started in the search of breakfast, and having been recommended Urban Angel a 1000 times, we tried to grab a table. Unfortunately, they don’t take bookings and we were too hungry to wait 45 mins so ended up in a closer café, which wasn’t great for GF or DF, but did do black tea and a veggie fry up! Luckily we stumbled across a market where I found Missy Vegan Cupcakes and picked myself up a vegan and GF chocolate tiffin, which was HUGE.

This was essentially the fuel that got me to the top of Arthurs Seat! Which I definitely recommend as an activity in Edinburgh – it’s a surprisingly hard climb but absolutely worth it. The views from the top are just insane!



After such a wild trek up to Arthurs Seat (it had been raining all weekend so was a rather treacherous climb, absolute mud bath!), we needed some proper sustenance so found ourselves in a lovely little pub called High Street Number 1 on the Royal Mile. At first glance, it didn’t look like they did much allergy friendly, until we spotted the gluten free fish and chips! Served in GF batter and fried in a separate fryer, this was a GF dream.

It would have been rude to visit Edinburgh trying some of the local booze (I mean, we’re only human!), so we walked a little further up to the Royal Mile where we tried some of the gin offering at a small pub called The Albanach. Edinburgh Gin (this is an actual brand, not just gin from Edinburgh!) was an absolute find. So many gorgeous flavours, so good paired with Fever Tree Tonic. My fave was Rhubarb and Ginger. SO GOOD.


 

Sunday

After waking up with a slightly sore gin head, we were on the prowl for one thing only, BRUNCH! We headed this time towards Leith, as our apartment was just positioned in perfect walking distance between Edinburgh city centre and Leith on the coast. The Roseleaf was positioned just past the canal and WHAT A GEM! Disguised as a rustic pub, this spot did the best brunch skillet I’ve ever tasted and the menu was extremely well labelled for allergens. I went for the vegetarian breakfast skillet, served with a toasted gluten free muffin. The real stars of the show were actually the choice of juices and hot drinks. First we went for the ‘Red Cappuccino’ – a twist on a classic chai latte but infused with more cinnamon and ginger. I had mine with soya milk and it was beautifully rich and creamy. Then we went onto the juice menu (because you know, holiday) and particularly loved The Heartbeat (pomegranate, apple and raspberry) and the coconut crush (pineapple, coconut water and apple). Would definitely recommend this gem!

For dinner we headed to an incredible artisan Italian deli that was right next to our apartment called Valvona and Crolla. Think high ceilings stacked with wines, cured meats, pastas, sauces and fresh vegetables. They had a whole row of fresh Italian gluten free pastas, so we picked up some bits for a night in at the apartment. Served with a bottle of red it was the perfect (albeit) unusual Easter Sunday dinner.


Monday

With only the morning left we had to fill the time the best way possible, BRUNCH! We headed to Urban Angel which I had been recommended by near enough everyone for a great gluten free brunch! We had to wait 40 minutes for a table, but the delicious gluten free bread did not disappoint. I mixed and matched, with smoked salmon, poachies and Portobello mushrooms on the plate paired with one of my fave hot beverages, turmeric latte. Gorgeous.

Travel (London to Edinburgh)
So there is much discussion about the best way to get to Edinburgh and as it was our anniversary weekend (5 years!), we splashed out on first class tickets on Virgin Trains and I honestly couldn’t recommend this form of travel enough. You literally hop on at Kings Cross and it’s only four and half-hours into the centre of Edinburgh. Complementary beverages and sandwiches are included(unfortunately not GF or DF), so make sure you stock up on snacks from Waitrose or M&S at Kings Cross. We probably paid about £150 each for a first class return, which was definitely worth it for the space and free wifi!

Accommodation


I really didn’t know anything about Edinburgh before this trip, so wasn’t sure what or where to go for in terms of accommodation. However, Josh & I are massive Air BnB fans (honestly best places I’ve ever stayed in Copenhagen, Amsterdam, Marbella etc), so we booked an apartment about 8 mins walk from the train station on Brunswick Street. The apartment was gorgeous and owned by the friendliest couple, Pat and George. They left milk in the fridge (for Josh obvs), cereal and the place was immaculate. Perfect location to walk into the city centre, as it was only about 15 minutes. Check out our apartment here.

Would love to hear if you use any of these travel tips in your future travels to Edinburgh!

 

Check out my Pitstop Guide to Copenhagen for more travel tips!
BRYONY HOPKINS, A BELLY FULL OF BRYONY

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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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OLYMPUS DIGITAL CAMERA

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

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

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

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

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31st December 2017. Always sparkles. Always optimistic.

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

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