A young person with IBD ~ what the last two years of my life has given me

I promised you this post months ago so, first, I'd just like to apologise for the delay. I would come out with the cliche "life just got in the way" but in reality I was enjoying myself far too much for most of July and early August and didn't have the will power to sit down, write this and put absolutely everything out there for people to read. This isn't just for me though, this is for awareness and for all the other people out there with the same type of condition because, damn, there's a lot more of us than you would believe. I had no idea.

DISCLAIMER: This is probably the most personal thing I've written and it covers some, well, interesting topics and anecdotes so expect a lot of crude sarcasm, euphemisms and just general up front truth because there's no way to cut corners or use idealism here.

WHAT IS IT?

So, what is it? Crohn's disease, Ulcerative Colitis...they all come under one branch called IBD. Irritable Bowel Disease. There's your first heads up why people are hesitant to talk about it. Not the most catchy name. I have Crohn's Colitis which means I have Crohn's disease but it only affects my colon.

WHAT DOES THAT MEAN?

Okay, so now for the behind the scenes (Apologies in advance if you have prior knowledge or study Biology I'm not a medical expert by any means). Essentially, its a chronic disease, which means it can't be cured but it can be managed, and where it comes from is a bit of a mystery. So far, theories are a combination of

1. A gene from one of your parents and

2. An outside trigger.

How beautifully specific. If you want to go deeper - excuse you - it's basically means you have a non-functional immune system that causes inflammation in your digestive system. For whatever reason, it attacks healthy tissue as well as unwanted things. Then, that can give you the symptoms of a flare up, which is just a dramatic sounding name for getting ill lets be honest. You go through periods of remission, which is when you're healthy and life is almost completely normal, and then you have flare ups which come and go and side effects that like to make themselves heard sometimes. To give you some sort of idea these (for me) include things like:

Bloating

Cramps

Weight loss

Anaemia

Fatigue

Irregular stools (A fancy term for 'When I'm ill I can go 7 days with nothing or 7 times in the space of 7 hours' take it as you will.) All of which can make you feel like crap...no pun intended.

Still with me? If you've got your head around that, you're doing well. It took me a good couple months of doctors leaflets and frantic googling - would not recommend - before I worked out what the hell my body was doing.

MY DIAGNOSIS STORY

I was 17 when I was diagnosed and it will be two years in April 2019 but it took six months of doctors appointments and being called into hospital before I was officially diagnosed with Ulcerative Colitis (which would later change to Crohn's disease then Crohn's Colitis).

Christmas 2016, I lost a stone in weight over the two week holidays. Any other time of year this would have been odd but not crazy but at Christmas? If you haven't put on half a stone via pigs in blankets and Quality Streets you're doing it wrong. I went on multiple trips to see different GP's and was told the same every time: "It's teenage stress it will calm down, eat more". It wasn't until my 8th doctors appointment, at which point I ticked every symptom box for colon cancer, did I get a hospital referral.

February 2017, I had a colonoscopy. To save you having some strange Google history searches this means sticking a camera up your bum *insert joke about losing anal virginity if you fancy* and poked around your entire colon whilst high on gas an air. The only way I can describe this is uncomfortable in all its meanings. Especially when the nurse makes a joke about me seeing myself "inside and out" due to the large TV screens showing live footage of the camera you can't really avoid...

April 2017, it all kicked off for better and for worse. I got ill with a virus and this combined with an untreated flare up, unbeknown to me at the time, lead to more weight loss, me not being able to walk from one end of the house without almost collapsing and fatigue that lead to breathing difficulties. To add some relatable humour to it, you know the light headed, nausea, can't really breath feeling after you run a sprint? That was me after I walked up the stairs. Attractive, I know. However, a quick drive to hospital and suddenly I had a million and one tests done and a consultant brought over and I got my official diagnosis that day.

I have to make a huge shout out to the NHS here because in the last two years they've been incredible. I have a nurse with a 24 hour helpline who never fails to get back to me within a few hours if I have a problem, an assigned doctor who makes things happen when they need to and is the most lovely lady. As well as this, because of my age at diagnosis I was fast tracked straight onto an adult program of care and never once have I felt as patronised as I did sat in that GP's office being told I need to "de-stress" and it would all calm down. Please.

DEALING WITH LIFE WITH IBD

Life would be incredibly boring if you couldn't make at least a few pregnancy jokes about how bloated you look. For me, being able to laugh at myself has definitely helped me and taught me that you shouldn't take yourself too seriously but at the same time there have been things I've had to adapt to.

My diet. Eating is a trial an error situation there's quite a few things I can't eat and I've had to try and work around this.

My iron levels. All the iron in my body is artificial (fun fact) because my body can't produce it or absorb it properly so I have to have infusions.

Getting ill. Which sounds like the most blatant thing on the planet but because of my immune system I will pick up anything and it will effect me worse than usual. So, an example, I got a stomach bug a few weeks ago and instead of two days in bed I was in bed for a week and had to go to the hospital for emergency bloods and sample tests because my symptoms kicked off. I also got bad tonsillitis I picked up on a night out on bank holiday weekend (If that doesn't put you off the Buttermarket, people reading from Shropshire, I don't know what will).

Lastly, weight loss. This is probably the biggest thing I've had to face personally. I've always been on the slim side but because of this when I do lose weight from being ill it makes a physical difference and in the past has caused self confidence issues, more because you don't feel like you're in control of your own body and how you look. Also just general perception and what I mentioned earlier about how people view you differently. I'm not ashamed anymore of having and dealing with Crohn's, but its not the most glamorous illness and you certainly can't sugar coat it. My biggest fear was always how people would perceive me or label me or see it as almost off-putting? Which sounds harsh but I'm a 19 year old girl (in a few days) in what can be a very shallow world. There will be certain people I might not want to read this but tough. This is me. I'm not perfect, why should I be.

POSITIVITY

The most important thing there is for anyone that has a long term illness or condition or knows someone that does. How do I stay positive? I follow some incredibly inspirational people on Instagram that also have IBD such as @amberostomy and @hannahwitton who are gorgeous and so funny and upbeat considering what they have to go through on a daily basis. I'm also just very grateful that my IBD hasn't lead to surgery and so far I've had a pretty easy run with only one major and two minor flare ups in the last year and a half. Also, I have got the most wonderful and supportive friends, some of which have seen me in worse states than my doctors and have been there to literally pick me up off the floor and put me to bed and look after me - you know who you are and I appreciate you so much. When its a chronic condition and its a case of ups and downs it is a complete mind set thing though. My entire outlook on life has changed since being diagnosed and now I'm just a lot more carefree, spontaneous, and, I like to think, more appreciative of all the good times. When you're healthy you want to do everything and achieve lots and make the most of it and just have fun because you don't know when it could get bad again and until then, why not? You might as well make the most and do something that makes a difference and enjoy yourself.

AWARENESS

Just to finish, I would absolutely love it if you could go have a quick look at this site. They're the main organisation and do so much to help raise awareness for people with the condition but also for others to help spread understanding of the condition and also break the silence around talking about it and what it really involves. I'm a member and their info and help packs have honestly been so so useful to me.

Crohn's & Colitis UK

Thank you so much for reading this guys!

Any comments or opinions would be much appreciated and if you want to know anything else about the condition or me I'm happy to talk about it just message me!