Crohn's Disease: Emily's Story - Core Results Personal Trainer

Crohn’s Disease: Emily’s Story

This year in November I’m turning 30, which also means that by then I will have officially had Crohn’s Disease (& Irritable Bowel Syndrome) for over half my life! Oddly I feel this is a bit of a celebration! Weird I know, but I can’t really remember how it felt to not have it. So I guess I feel that the celebration is because it really is part of me now, rather than a ‘bad moment’ of my life. I don’t remember everything about it but I do remember feeling really bloody unwell!

What is Crohn's Disease?

Crohn’s disease is one type of Inflammatory Bowel Disease (IBD) that affects the digestive system, most commonly the end of the small intestine or the colon. It causes areas of inflammation, which can vary in size and occur in multiple areas. There is no cure for Crohn’s disease but you can have periods of remission or relapse/flare-ups. The symptoms of Crohn’s can vary in each person, as well as in severity. The most common symptoms are diarrhoea, pain, fatigue, anaemia, weight loss, no appetite, mouth ulcers and feeling generally unwell (for more information, check outcrohnsandcolitis.org.uk).

Where it all began...

I was 14 when I first felt ill (REALLY ill) and in the first term of year 10. It was around October 2003, so just before I turned 15. I’d been at my new school for barely a term and a half. It wasn’t fun. I already felt like enough of an outsider as I'd joined the school at the start of the year 9 summer term! 

​This is from Christmas 2003. I wouldn’t say you’d automatically think I look unwell. But I don’t look particularly well or ‘healthy’ either.

I always thought I’d kept it quiet for just a few weeks before telling my mum. I was so embarrassed so it took some courage! Maybe I just got better at managing it (or ignoring it), I don’t know, but my mum is sure I told her around the time of our house move… in June 2004.

Now I was definitely a skinny teen, and looking back now I realise how skinny I was but my god did I eat a lot. I don’t think I fully clocked how skinny Crohn’s kept me until I looked back a few years later. I remember I’d just always want to eat and I rarely turned down an opportunity to do so (hunger can be a side effect of the steroids)! I’d typically have 2 pieces of toast for breakfast and a mid morning snack. Then for lunch I'd have a large school meal including rice or potatoes, 2 pieces of bread with butter AND a dessert (sometimes soup to start too). After school I’d have either fruit or a chocolate bar before pick up, then a huge dinner and probably pudding as well. I scoffed at the idea of ‘watching what I ate’ as I never noticeably gained weight, ever. Maybe it wasn’t my Crohn’s, maybe I was just naturally skinny, who knows! I did avoid certain foods when I was really unwell and had started to figure out what worked for me, but I still ate a lot, it was just all very bland. Now I can eat more of the things I originally avoided and am just fine. There are certainly things I don’t actively include in my diet now, and things I can have in small amounts, but overall I eat a lot healthier.

After telling mum, I just have this jumbled and very vague recollection of endless trips to the GP, a private doctor at the hospital who I really didn’t like, and lots of medication (including steroids) some of which I’m still on today.

The day we moved house in June 2004.

I hated going to school, I used to cry a lot about going in, and mum said that people would laugh about me ‘making noises’ in the bathroom. Awesome for a 15 year old! If only they knew at the time how unwell I really was, but I kept that info to myself.

I got nervous about going to other people’s houses, especially when staying over. I used to freak out if the bathroom wasn’t tucked away somewhere where no one could hear me, no matter where I was. I hated car journeys and I remember getting upset when choosing food on the go. I really wanted to eat so I wouldn't just turn it down. I was jealous of people who felt ‘normal’ and I was starting to forget what ‘normal’ felt like.

My diagnosis

It can take a long time to diagnose, and to be honest I don’t really remember a lot of the official stuff too well, just being asked the same questions over and over again at the consults (important I know, but exhausting). I believe I was finally officially diagnosed January 2005. They were already sure it was Crohn’s disease but needed to confirm it via my first Colonoscopy.

In 2005 when I went on my post GCSE holiday to the Isle of Wight (below right), I got HORRENDOUSLY burnt on the second day despite slathering myself every 2 hours in sun cream. No one else got burnt, yet I looked like a tomato. I had a giant bandage on my arm from a huge blister and had sunstroke. I was on a high does of steroids around this time and vaguely remember being told I'd be more sensitive to the sun. Maybe I was, or just bloody unlucky. But

either way I was miserable on this trip unfortunately. However, my family holiday to Menorca (below) was lovely. Although I still hated having my picture taken, it was safe to say you could see I was ‘pumped’ on steroids here! My face went up and down over the years and it was actually one of the main things that bothered me, because it’s what people could see!

My brother Will & I on our summer holiday with Mum to Menorca.

The day we left from our 'post-GCSE' IOW trip. Everyone else was grinning from ear to ear.

I consider myself very lucky with how severe the disease has been really. I always feared surgery and a colostomy bag, but I have fortunately never needed either. That’s not to say that my condition hasn’t been life altering… I took over 20 tablets a day, tried gluten free, dairy free, avoided different foods, ate bland food, had vitamin deficiencies, got a giant face, had sleepless nights, cried a LOT, felt massively insecure, ugly, bloated, exhausted, lost blood, became anaemic, learned to openly talk about number 2’s, had countless blood tests, tons of drug infusions, Colonoscopy’s, a Sigmoidoscopy, had a ton of time off school/college/work, did all my GCSE’s in the school San, did AS & A-Levels in the same year, was told I’d probably never be able to work full time, I slept a lot (still do), had a noisy tummy that I struggled to hide, suffered pain, panicked about days/nights out and travel, had countless GP/hospital visits and I always knew where the nearest toilet was 😉 My condition is actually one of the main reasons I didn't want to go to university, due to living in close quarters with other people and thinking the stress of studying and money would screw me over.

BUT, I also did a ton of things I wasn’t sure I’d be able to do or felt terrified about including: going travelling (where I also got a stomach bug just before going camping – shit happens right?), camping 4 nights at a festival, taking flights alone, skydiving, getting piercings, deciding not to pursue the career I thought I

wanted (film editing), learning to exercise, learning to ski, studying to be a PT (2010), learning to eat better, studying sports massage, moving out, completing 5k races & a 12.5 mile Tough Mudder (this was huge, think fear of needing the toilet), building some muscle, meeting my boyfriend, moving towns, starting work at Core Results, buying a house, getting a dog, studying more on training/nutrition, & also improving my baking skillz 😉

My 18th birthday in November 2006. My face had drastically reduced in size.

The weird thing is that now, being so well, I sometimes feel like a ‘fraud’ for saying I have the condition probably because I’m so used to it, or that I feel I’ve not ‘suffered’ enough – which is beyond ridiculous. I still take medication twice daily and rarely get the odd very minor symptom. So fuck it, either way I still very much have Crohn’s & IBS (plus my doc says so anyway) and it’s just under bloody good control! That’s not to say that anything I do will work for someone else, and that’s also not to say that if I wasn’t following the lifestyle I am now, I wouldn’t be as well as I am with regard to my Crohn’s.

This is in the Cook Islands during my last couple of weeks travelling in June 2008. I stayed on the tiniest dose of steroids during this whole trip. I was terrified of changing things & having another flare up.

This is from April 2012 after volunteering as a masseuse at the London Marathon. I finished the day with a very impromptu visit to 10 Downing Street & a quick photo showing off my last ‘moon face’.

My last flare up was in November 2011 just before I started my Sports Massage Course in London. I imagine it was the stress of the idea of commuting every day – even though I didn’t feel as stressed about it as you’d think, I was excited! I went back on a moderately high dose of steroids again and felt like I was back to square one; but I wasn’t, as this lead me to stopping them all together. My doctor nearly fell off his chair when I eventually announced I'd come off them. I think it only took me about 8 years, and I don't miss the moon face!

My life now

I recently met someone who has Ulcerative Colitis and we had a chat about symptoms, experiences, medication etc., which I really don’t get to do much anymore. I rarely even meet someone with either Crohn’s or Colitis, so it was quite refreshing. We also had a good giggle over ‘things people say to those with Crohn’s or Colitis’. I personally don’t take any actual offence to any of these – however that’s not to say they don’t sometimes irritate me a little, as I’m sure anyone with any medical condition can agree with. I also know that all of these comments can come from a good place, so I don’t think badly of a person for saying them.

Things like:

  • "You don't look ill."
  • "You look tired/pale/shit."
  • "I'm ALWAYS tired too."
  • "You're so skinny!" OR "You've gained weight!"
  • "I get a bad tummy too so I know how you feel."
  • "Have you tried gluten free / dairy free / vegetarian / vegan etc.?"
  • "Have you tried Herbalife / Juice Plus etc.?" BONUS: "I've heard it cures IBD!"
  • "Should you be eating that?"
  • "My sisters boyfriends uncle has it & he   *insert apparent miracle*   & now he's fine!"
  • "Can you  hold it in?"
  • "Surely all that medication is bad for your liver/body/brain/soul?”
  • 😉
Anyway, most of the comments I have either personally heard over my life or other Crohn’s/Colitis sufferers often hear over theirs. They are funny, I think, and I know people usually mean well so don’t be afraid to say things to me, but sometimes those things can bring on a real eye roll moment!

Talking to someone with a disease or medical condition might feel awkward at first. But please think before you say something. Most of the time someone just wants to hear – “that sounds like it sucks” or, “could you tell me more about it?” – we of course like to spread awareness, but we’re also allowed to express that we’ve had a shit experience. And trust me MOST of the time, funnily enough, we’re likely to know more about it than you do. If it’s early days in the condition and you do happen to know more, we may not be ready to hear your advice just yet as we might not have got our head around what it all means. I remember not wanting to even accept what my own doctor was saying.

And lastly, this is more of a pet peeve, which I’m sure anyone with a stomach condition can relate to. When people on social media post a ‘selfie’ of how ‘bloated’ they are. Side by sides can actually be interesting and educational, or even just when it’s clear it’s showing a true big bloat. But this is more about the people that have literally got a flat stomach so I really can’t see what they’re moaning about. Trust me love, you might feel bloated and therefore are bloated, but no one can bloody see it. It happens to most people so just move on. You’re just showing off your midsection, so just call it as we see it and be proud - it’s ok to do! My bloat would have cast a shadow over your house - just saying!

So finally here I am at my mum’s wedding & also standing in front of some mountains on my 2018 ski trip. You may have learned that I have Crohn's disease, or you may have just learned

more about my Crohn’s experience. But more importantly, you have also seen the evolution of my brother! 😀

Will, Mum & Me in November 2016.

Les Deux Alpes in April 2018.

Leave a Comment:

16 comments
Elaine Redd says April 25, 2018

Well done Em for putting it out there and hopefully giving other sufferers confidence and positivity in coping with the condition. You are, and always will be a beautiful young lady and despite Crohn’s disease you have achieved much in your life so far and will continue to do so. You are an inspiration and we love you. xxx

Reply
    Emily Adams says April 26, 2018

    Thanks Elaine, that’s what we’re hoping to get from it. More awareness at least! It makes me quite sad when I think back to everything but in reality the really bad times are only a small part of my whole life. Of course I’d rather not have it, but I may not be where I am now without it 🙂 Love you too xx

    Reply
Ray says April 25, 2018

Very brave Emily.

Reply
    Emily Adams says April 26, 2018

    Thank you Ray!

    Reply
Nai says April 25, 2018

Well done Em. Very proud of you for putting yourself out there. Love you loads xxxx

Reply
    Emily Adams says April 26, 2018

    Thanks Nai, even though I’m open about it all now, it did feel a bit ‘scary’ to put it out there! Love you loads too xxx

    Reply
Jackie says April 25, 2018

So interesting to read this & I know we have spoken about it although I cannot recall my response so hope it was appropriate! But well done Emily for what you have achieved against such challenging circumstances.

Reply
    Emily Adams says April 26, 2018

    Hi Jackie, thank you for your comment. Yes of course, nothing you have said was inappropriate at all 🙂

    Reply
Louise Brett says April 26, 2018

Well done Em.
There were certainly many ups and downs over the years, but you took everything in your stride!
I remember being given plenty of advice on your diet by people who “know best” The only people who know best are those dealing with it!
I remember the tears after school as you had been laughed at in the loos, kids can be very cruel and hopefully raising awareness will stop cruel jibes!
You set yourself goals and have achieved them!
I am very proud of you and pleased you can now share your story.
You have and always will be my beautiful daughter! And you have a very handsome brother too! xx

Reply
    Emily Adams says April 26, 2018

    Yep very true – and I know people mean well so I feel bad for saying that I can sometimes get irritated by comments, and I don’t hold it against them. But sometimes you don’t want advice, you just want someone to listen!! Not to say I’m not ever going to listen to advice, but like anything, you have to be ready to hear it. As much as kids can be mean too, I’m glad I got it when I did as I don’t remember much different, and at least I wasn’t trying to hold down a job, bill paying etc as I would be if it happened now. It was just part of growing up, as horrible as it was, I’d say it was at the best time for me. More goals to achieve now. And thanks mother 😀 Will is handsome, although he needs to ditch the Westlife trousers! Xx

    Reply
Andrew Adams says April 26, 2018

I’m a very, very proud Dad. X

Reply
    Emily Adams says April 26, 2018

    Thanks Padre 😀 x

    Reply
Sarah Roberts says April 27, 2018

This is an excellent article Em!!! It’s heartfelt and very honest. Very well done for being brave enough to write about this and share your experiences with other people. Hopefully it will help so many others xx

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    Emily Adams says April 30, 2018

    Thanks Sarah, that’s very kind! Hope you’re well! Xx

    Reply
Sam Ricketts says April 28, 2018

Great blog Emily, it’s great to hear about how differemt people deal with crohn’s and even better to make others aware of it’s hidden symptoms.

Our stories are almost identical going back through photos there are many many moon face photos of me which I’d rather never existed. All the best Sam

Reply
Lou Williams says May 1, 2018

Emily, that is a very brave thing to have done and is giving loads of other sufferers hope and support. It’s not easy to open your heart to a whole bunch of people you know and don’t know. Regardless of this condition and your story I do still think you have a very mature head on your shoulders and have a very high level of common sense and emotional intelligence. The future will always be bright for you and that’s why I keep coming back to the gym. xxxxxxx

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