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!

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).

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! 

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.

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

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

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.

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!

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?”
  
• 😉

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