My Disease: What a year living with Ulcerative Colitis has taught me

Wednesday, 28 March 2018

My disease is Ulcerative Colitis and it is going to be mine forever! 
The time feels right to start raising awareness and sharing my story because my disease is not  going anywhere, and it certainly is not going to beat me. Please don't let the title of 'My disease' scare you off because I want these posts to be knowledgable, helpful and informative. Having a chronic disease has become part of daily life to me, I want to write these posts to share my experiences and not feel isolated throughout.

One whole year has gone by since the day I was diagnosed with Ulcerative Colitis and what a year it has been. On the day I was diagnosed I could've never imagined how much of an impact this disease was going to have on my life. It has been the hardest year of my life, a year of constant battling to get into remission which is still on going to this day. Technically, I've now been in a year long flare up as I haven't had a day in the past 12 months where I haven't suffered from symptoms. This year has been the most important year of my life and it has changed me massively as a person, but I think for the better. Instead of focusing too much on the negative side of my journey, I've decided to think about the things I've learnt because of this disease and how it's changed me. 
I might hate Ulcerative Colitis, but if it hadn't have come into my life I would never have learnt these valuable lessons.

If all this sounds like complete nonsense to you, you can click here to read a bit more about Ulcerative Colitis or take a look at my blog series titled 'My Disease'.

Feeling embarrassed is a waste of time
Ulcerative Colitis is within your bowel, to get to your bowel you go through the bum and what comes out of there? POO. Now let me set the scene for you... Imagine lying on a hospital bed naked except from the loose gown and pair of paper knickers provided, you lie on your left hand side whilst a team of about 4 nurses and a doctor stick a camera up your bum and watch it on a screen. Well that my friends is a Sigmoidoscopy/Colonoscopy of which I've experienced 5 times and have come to not even think about being embarrassed, it's just something that has to be done. If people do feel embarrassed about having IBD, I hope I can help to break the stigma. We all talk a lot about bums, poo and blood so at least try and embrace it! We all have a body that performs the same bodily functions so lets just stop feeling embarrassed and realise its normal.

Being selfish is okay!
Throughout my life I've always put everyone else before myself. I never viewed it as a bad trait to have as I loved to make people happy but there comes a point in your life where you realise that you're just as important. I am now my number one priority and I don't feel scared to say that, you have to be selfish sometimes and it is okay to be like that! I don't do things that I don't want to, I don't speak to people that I don't want to, everything I do has come from a decision that will benefit me. I want the most out of my life so I put myself first!

Listen to your body
Whether you're in good health or bad health, I stress to you to listen to your body because it's the only one you've got! Personally I think I've come to know my body pretty well, I know when things are going well and I know when things aren't. For example, my new treatment Humira did wonders for the first 4 weeks and then I just knew things weren't right. I was more symptomatic, so exhausted and within a matter of days feeling so weak. I'd had 2 stool samples taken the first when I was feeling okay, the second 2 weeks later. The first sample came back with inflammation marker of 49 which is almost normal (0-48 being normal) yet the second sample returned at 467 which is NOT normal. After more tests I was told I'd become very low in iron again explaining the exhaustion and to sum up it, my bowel was on the verge of another huge flare. I'd always doubt myself if things weren't going right but now I've learnt that I know better than anyone whats happening and I need to listen to my body. 
If things don't feel right, tell someone and things can get sorted!


Mental health is just as important as physical health
I don't think people truly understand the extensive affect mental health can have on you until you go through it yourself, well at least thats how it was for me. Before Colitis I was perfectly healthy, surrounded by amazing people and looking back I was living a dream-like reality. Of course I had some bad days but I'd never say I suffered with mental health issues, I never needed help and I was genuinely fine. From that to living day to day with a chronic condition was a massive change. It can become very debilitating on your mental health and it definitely did for me. In a way I feel lucky that I know my changes in my mental health correlate with my physical health and therefore can put things in perspective and battle on seeing a light at the end.
Everyones battle is just as important no matter how big or small. 
This year taught me that physical health is SO important but it should not prioritised over mental health, they're both as important. A change in either can have such life changing impacts and that needs to be noticed in our society. We all need to have the support there to be able to talk about whats going on on the inside because thats the only way things can change. You might feel so alone but if you keep reaching out for help, you WILL be listened to!

I'm not chronically ill, I'm chronically strong!
If someone had told me a year ago what the future was going to hold, I would've cried and probably fallen apart. To know that I'm here, a year on, still getting up and getting on with life everyday makes me proud. I won't lie, it does get SO hard sometimes but for the most part I battle on. The amount of times I've been pushed back down again in the past year is countless but every single time I've got back up and that is why I am strong. I get through all the hospital appointments, the blood tests, the new doctors, the steroids, the endless medications, the times things don't work, the anaemia, the infusions and the fact that I have absolutely NO idea when I'm going to reach remission and what this disease is going to do to my body throughout my life. 
But I do it because I am strong.


I am strong and so is everyone else fighting Ulcerative Colitis, Crohn's disease or any form of chronic condition YOU ARE CHRONICALLY STRONG!

So after facing the year I have, I know I can get through anything and I will get through anything.
I'm wiser, stronger and have a much greater knowledge of where toilets are but I am still me!
I never thought the past year would pan out the way it did but it has changed my life and at some stage in life, I will look back and think I DID THAT!

Dear Lucy Jane - 28th March 2019,
I hope you've found a drug which works for you and have successfully reached remission, if you haven't I hope your life is symptom free some other way. I hope you're back to a more normal reality and aren't facing everyday as a battle, you'll probably still be living at home but I hope you've got some of your independence back. I hope you haven't given up on your dreams and that things are slowly working out so you can get to where you want to be. I hope you've continued to raise awareness about IBD because you're good at using that voice of yours. But most of all I really hope you're happy and life is pretty stable for you, I hope theres less time spent at hospital and more time spent having fun!
I hope you've finally got your life back!

Love Lucy Jane - 28th March 2018




6 comments

  1. You are such a strong person! One of my relatives has it too and I know it can get quite painful sometimes. Have a nice day! xx

    Andreea,
    http://couturezilla.com/

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    1. Thank you so much, wishing you and your relative all the best!xx

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  2. gurl, you're so strong and inspiring!! the way you tackle your disease and the attitude you take towards it is something that everyone should adopt in their everyday life. Like you say, this year has been immensely challenging but all the hurdles you've faced will have taught you so much and next time you are faced with a life challenge you'll think "i can do that, i am surviving this". Its also so fab that you're raising so much awareness and speaking so openly about it all, wishing you all the best for the next year xx

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    1. Honestly Katie what you've said is the loveliest thing to hear, I just want to try and make positives from negative situations from now on and keep going! Thank you lovely xx

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  3. You are such a strong and powerful woman, keep raising your voice and talking about the disease! There´s so many people out there that must feel embarrassed to talk about it, and I am sure reading this, with you not being ashamed of it, it´s amazing!

    Andrea//

    https://justohana.blogspot.com.es

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    1. Thank you so much, feels amazing reading this!x

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