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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Let me put this plainly – I am not a runner. I hate running. In fact, I’m not really a fan of any sporting activities unless it involves dancing in a nightclub or maybe Zumba.
So when I decided to take on the British Vitality 10k, it was a big undertaking for me. Not least because I don’t enjoy running, but also because I’ve never pushed my my body to that kind of physical limit. The idea came at a spa (obvs, running and being fit and beautiful seems like a completely achievable goal when you’re at a spa), after Christmas, when I was drawing up my list of New Year’s Resolution. The resolutions were as follows:

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FYI – I am going to Bali and my nails are in good shape… I’m working on the others

I signed up with my boyfriend, Josh, in January and I was quite swift at getting the training going. IT WAS SO HARD. Given that I genuinely had never run further than 500m in my life, I found the first month gruelling and frustrating – my general fitness was extremely poor. I kept plugging away though and by March, I was able to comfortably run 5k in just over thirty minutes – SUCCESS!
Then came the Crohns flare up and the liquid diet – my training drew to a complete and utter standstill. Just getting to and making it through the day at work became my main priority pre liquid diet and once April came and I was on all liquid… well, hunger isn’t much of a motivator!! I did go for one run and well… it was interesting. Click here to read about it! Day 14: Halfway baby!
I managed to get back into it again by June, but by then I was only one month until race day and I still hadn’t run further than 6k. Furthermore, every time I ran I was experiencing really bad stomach ache – something that was definitely slowing me down! My Mum joked that because I didn’t have any large intestine, everything had more room to be thrown about. I think she was probably right! I resided that adrenaline would get me through the day and I would just keep running 5k as practice and hope for the best on the day… a risky strategy I appreciate.
We woke up at 0630 on the morning of the run to get to the starting line in central London for 0900. I honestly have to say that it was one of the best days of my life.
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Feeling spritely at 2k

The atmosphere on the day was incredible and to run with thousands of other people was just exhilarating. Of course the real motivator was the huge amount of money I was able to raise for Crohns & Colitis UK and I was truly blown away by the generosity of family, friends, colleagues and fellow ‘Crohnies’!!
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Feeling the pain at 8k

When I had to walk for a bit during the run as my stomach winced with pain, someone screamed ‘GO ON CROHNS AND COLITIS!’ It was all I needed to keep going and make it to the finishing line in 1 hr 7 mins – my best ever 5k time, twice over.
The feeling crossing the finishing line was just incredible and to have Josh run alongside me – I couldn’t have asked for anything more.
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Crossing the finishing line at 10k!!

I’d like to take a moment to thank everyone who has sponsored me so far. I thought of you all and the thousands of people in the UK who suffer from Crohns or Colitis every step of the way.
It gives me great pleasure to say, at time of writing, I have raised an incredible £1,430.00 for Crohns & Colitis UK! But never fear, there is still time to donate. Click here to see my Justgiving page. (One final plug is allowed!)
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Before I start, this is a gushing post. You’ve been warned!
I’m documenting the ultimate cornerstone to my entire liquid diet journey. This post in fact deserves the biggest chapter heading in the tale of Bryony Hopkins. Last week, I had my first doctors appointment with my specialist consultant since I finished my liquid diet. The same consultant who was determined that steroids were my only option and I opted for the complete opposite – a month intense liquid diet.
I have to say I was extremely nervous for the consultation. I worked it up in my head and the very thought of it reduced me to a near tearful wreck. Why you might ask? I obviously feel 1000x better than I did before the liquid diet, but the

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At the start of the liquid diet, April 2016

fact is, that not all of my symptoms have completely 100% disappeared, like I thought they miraculously would. What I didn’t know was that this is part of a longer healing process and as my consultant pointed out to me today, I am in a million times better place than I was before. I am pain free and able to control this through my diet. I am able to work full time, I am fulfilling all my social plans AND I’m training for a 10k. Pre liquid diet, I was just about able to get out of bed without being doubled over in pain. Yet I had completely forgotten how bad things were before until I sat in front of my consultant. He said ‘last time you came here Bryony you said you couldn’t carry on like this. You were at your wits end’. And I was – I had just forgotten. I was so focused on the fact I wasn’t completely ‘cured’ that I lost sight of the journey I’ve had and the transformation my body has gone through. The transformation that I allowed my body to go through and the work I have done to get it here.
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I can still eat deliciously good food! Black bean brownie and matcha latte courtesy of Ethos Foods.

It feels amazing. I actually can’t stop smiling. After I chose the liquid diet, I was rife with uncertainty. I had absolute no clue that I was doing the right thing or just being a stubborn cow. I am just over the moon it has worked out and been recognised by the most hard to please doctor! Whilst I am still on adlimumab injections, I am wholly optimistic that one day I could be drug free. It’s hard to believe how much things have changed just through one month of pure elemental.
For anyone who also suffers with Crohns & Colitis, I urge you to give the liquid diet a try if you’re ever at a treatment crossroad. Yes, it’s hard. Yes, it’ll mentally challenge you in ways you couldn’t have ever imagined. Yes, you’ll be hungry and angry for a few days. But my god – is it worth it! It’s a clean way to let your body heal – no chemicals, no side effects. Just you and your willpower.
My journeIMG_3837y is by no means over. I still have many food groups to reintroduce (this has all slightly stalled since I started a new job which is completely exhausting) and I have a job on my hands to manage my stress levels to keep my pain at bay. But the point is that’s all in my hands. I’m back in control.
This makes me even more determined to raise as much money as possible for Crohns & Colitis UK in my 10k run this Sunday. If you have any pennies to spare, I would be so eternally grateful – every pound means more than I can put into words! Click here to donate.
I feel like celebrating with a gluten free and dairy free brownie!!!!!
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Rewind six years and I was a fresh faced fresher arriving in earnest at university. First time living away from home and I didn’t have A CLUE how to cook. No, seriously, I could just about to do baked beans on toast. In fact, on one particular occasion I managed to burn a jacket potato to a crisp in the microwave. The first ever dish I ate with my new flat mate (and now best friend), was a stir fry. And I didn’t even cook the stir fry!! From that moment on, stir fry was my staple meal and I genuinely ate it about 3-4 times a week! I was all about pre chopped veg, egg noodles and packet sauce though. Hey, I was a lazy student!IMG_3705
Stir fry has continued to be my comfort meal but since my culinary skills have expanded, I use fresh ingredients and a wide range of my favourite vegetables. I absolutely love this recipe – so many super food vegetables AND it’s gluten and dairy free! Your golden ingredient here are the Tamari sauce. It is extremely similar to soya sauce in flavour and texture and it still derives from the soy bean, but it’s wheat free. Winning! The sweet peppers also add colour and a sweet kick to the dish.
This recipe is so super simple! Perfect weekday dinner and still gorgeous if you reheat for lunch. It is gluten free, dairy free and vegan! This recipe could be LOFFLEX friendly if you replace some of the vegetables.
Ingredients  – Serves 2
2 garlic cloves – crushed/chopped finely
Thumb of ginger – finely chopped
3 tbsp Tamari sauce
Half a red chilli – finely chopped (more if you like it spicy!)
Brown rice noodles
Mixed sweet peppers (I like different colours but pick up what’s available!)
100g pack of asparagus – chopped in half
One large pak choi – finely chopped
Large handful of kale
Half a pack of mange tout
Half a bunch of coriander – roughly chopped for garnish
Method
Start by putting a pan of salted water on to boil – get this ready for your noodles.
On a chopping board, finely chop your garlic, ginger and red chilli, and put to one side. Then chop your asparagus in half, roughly chop your pak choi and slice your sweet peppers into slithers.
Once your water is boiling, add your noodles. Now heat a large glug of olive oil in a wok. Wait until your oil is hot and add your crushed garlic and ginger. Bring the heat down to a medium level and stir for a minute.

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Look at those colours!

Then add your mange tout, asparagus, red chilli and peppers. Give these a couple of minutes, before adding the pak choi. Stir these all together until the pak choi has started to whilt. Now add your tamari sauce and watch it sizzle! The kale comes last, as it cooks extremely fast. Stir everything together and let your veggies sizzle in the tamari sauce. Your noodles should be done by now, so drain these and add them to your wok. Stir through. If it’s looking a bit dry, add a little more tamari sauce.
 
 
Serve with roughly chopped coriander on top and some fresh chilli if you like it spicy. Delicious!
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The best thing about this recipe is versatility. Swap up the vegetables to your taste – in this dish I used green beans instead of asparagus and mange tout – still just as yum!
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I’ve been shamefully quiet here for the past week and for that I must apologise. I’ve just started a new job and I feel like I blinked and missed this week passing! I have however still managed to get in the kitchen and experiment with more gorgeous gluten free and dairy free delights – of which I will be sharing with you soon!
Apart from starting the new job, I have just got involved with a really exciting project. Some weeks ago, during the liquid diet fandango, I was invited to get in touch with the GCASFM team. gcasfmStanding for ‘Give Crohns a Slap From Me’, the project works to raise awareness and money for Crohns & Colitis UK through articles by contributing writers, as well as art, culture and music events. Founder, Matt Strutt, created GCASFM in a eureka moment during remission (he told me!) when he received 2000 UPS postal labels from a friend in the US. With a keen interest in graffiti and street art, he sent the stickers across the globe to artists, inviting them to create a sticker (‘a slap’) to raise awareness of Crohn’s Disease.
Two years on and the project has gone from strength to strength with many contributors. So I’m really excited to now be one of them! Have a read of my first article, just click here. The article also features an interview I did for BBC News two years ago – something I haven’t yet shared on this blog!
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Keep your eyes peeled for more delicious recipes to come! See below for GASFM social media sites.
GCASFM online
GFASFM Twitter
GCASFM Facebook
GCASFM Insta
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