My Disease: A year on living with my ileostomy

Tuesday, 18 February 2020

On 16th February 2019, one year ago, I awoke to a day that was going to change my life and my body forever...
Due to the severity of my Ulcerative Colitis I underwent surgery having a sub-total colectomy leaving me with a stoma/ileostomy bag and a very sore stomach!

Writing this a year on I really can't believe how quick the time has flown by, I've achieved a lot and done a lot in the last 12 months which were all things I never thought I'd be capable of living with Ulcerative Colitis. A year ago today I made the decision that this operation was going to change my life, it was going to make me into the person I was always meant to be and I wouldn't let it stop me.

A year on I'd say I still do have that mindset but you do have hard days, so here is what I've learnt a year on living with my ileostomy and what I wish I knew...

1. It's all about your attitude and mindset
The easiest thing to do when life throws something challenging at you is to give up, I was on the verge of doing just that leading up to my operation as my illness had consumed me. I read back over some of my thoughts I'd wrote down and it makes me feel so sick, I was so low, so tired and I hated life. As soon as surgery was presented as the only guaranteed option I knew I had to pick myself up, put that smile on and think this is the break I needed to be able to live my life again!
Throughout the whole journey from my op to now of course I wanted to break down, give up and may be I have done in some ways but I will always try to remind myself of the attitude that kept me going through the hardest times.
I was a diamond, life was throwing all these cuts at me but at the end I was going to shine...

2. Fake it till you make it, looking different doesn't mean you are different!
Having an ileostomy bag means I don't look the same as everyone else, I have a bag of poo attached to me at all times and a lovely long scar down my belly. Over the past year I've shown my bagged body online many times, walked down beaches all over the world with my bag out and I won't lie, at first it's scary and I was so so anxious but push yourself, fake the confidence and then owning your bag comes easy. I will never look like the instagram models or the influencers so I really don't care, the world can see me as I am and I won't hide it for anyone.
The only way my body confidence has been knocked is through intimate situations and that's still something I find hard. When you've been through illness and have constant hospital examinations, invasive procedures and surgery the way you view your body almost changes. From being 17 I underwent so many colonoscopies, scans, examinations of my body that over time you start to desensitise from it and your body is more of an 'problematic object' than a person. 
I have body confidence in a way that yes, I can show the world my body but when it comes down to one person it terrifies me. 
I don't really view my body as anything anyone would ever want, but that doesn't mean I don't want to be in this body, it's just something I'm still trying to figure out and I know one day I will.

3. Bag changes become like brushing your teeth
At first changing your bag feels like such a big thing, I remember thinking 'How is this ever going to become part of my morning routine?' but it did and it's all fine!
It takes me about 2 minutes to change my bag now, I do it every 2 days and have very little problems. I have my routine, try and use as little products as possible and it works well for me, it takes time but you'll find your way!

4. People aren't disgusted, they're interested!
When you think of the literal version of what my body does, I simply shit into a bag and that doesn't sound pleasant. The one thing I've realised is most people don't care if anything, they're pretty interested in finding out how everything works. I've always been the most open, responsive person when talking about living with Ulcerative Colitis and my ileostomy so I'll explain every detail if someone wants to know.
It's pretty cool that I'm walking around without an organ I guess...

5. You won't miss going to the toilet!
In the 2 years between my diagnosis and operations, I probably went to the toilet more times than I had done in the 17 years I'd been alive and I will tell you know I don't miss that at all!
Personally I think pooing a big is a lot more efficient, I have control over my body, empty it when I need to and that's something I didn't have! 

6. The smallest things will remind you of the hardest times
It will be a song or a picture or even a smell that takes me back to what I went through. I still don't think I've faced the trauma I went through properly because my way of dealing was ignore that part of my life and start a new journey. At the end of the day it's what I went through, it made me, me and I can't run away from it forever. 
I think the next step for me is to stop putting on such a brave face and speak to someone about how everything truly effected me and how it still is. The smallest things bring it all back but if I confront what happened, I won't fear it anymore. 

7. Facing reality is daunting but you can still be a dreamer
For the first 6 months after my operation I was simply living my best life, going on holidays, to festivals and absolutely having the time of my life! I realise now that euphoria I felt was because I was doing whatever I wanted, not really living in reality which was amazing, but then I moved to London, reality hit and I really couldn't cope. 
I'd lived in a bubble for a long time and when that bubble popped everything in me fell away and I couldn't really figure it out. I hated what I thought I'd love and became quite lost, negative and scared by the world. 
Since then I've been balancing work and doing what makes me happy and in some ways I still do feel lost and scared, but I've acknowledged it now and want to make changes to fix it. My life at 17 was fully planned out, but then life threw a storm at me and I couldn't follow that plan. Now I know I have huge anxiety over committing to big goals because I'm so scared of a second storm coming along. 
I just need to believe in myself more, understand life won't be snatched away from me again and I can still be the dreamer I always was!

A year on from my operation and I still stand by the fact it was the best, most life changing thing that's ever happened to me and I am so grateful to be able to live like me again. Throughout the last year I have been a little lost, confused by what I really want out of life but I think I need to sit back a bit more, relax and let things work themselves out. 
I live in a healthy body and that felt like an impossibility a year ago and really if you have your health, you can't ask for anything else!

So if anyones reading this about to go through surgery then my advice is this...
It is hard, but nothing worth having in life is easy and you have to keep motivated by your own positivity and strength. It is life-changing but in the best ways, you adapt to the little things that might scare you and the positives out weigh the negatives.
You can do it, you can own it and you can live life again!

Lucy Jane

You Monday not Blue Monday

Monday, 20 January 2020

Today is Blue Monday and I want to start my post by asking how are you?
You don't have to tell me, tell yourself, check in on yourself and write your answer down. 
Give yourself time to think how your mind and body truly are, it's important.

Blue Monday is supposedly the most depressing day of the year but I don't know how statistically true that is. Regardless of the science behind it, it's important to understand that every day, not just today, can be hard for people. 
Rather than having a Blue Monday have a You Monday.

Mental health is something we all deal with on a daily basis and whether you like to admit it or not, it is just as important as physical health. We dismiss it, don't want to talk about it because we feel 'silly' or 'stupid' but the more you don't talk, the more isolated you become. When you open up to people you realise you aren't the only one going through it, the world is a scary place and we're bound to think scary things. The right people will always be there to talk to, always be there caring for you and always try to help.  A problem shared is a problem halved is what I always believe and I wish more people would realise that, no matter how bad things get telling someone feels like a weight lifted off your shoulders and that's when things can change. 
Reading this you might be sat there thinking
 'You're some positive fashion blogger with 0 problems preaching at the internet'
I'd agree I'm a positive fashion blogger but my mind has dealt with a lot, I got the help I needed and things did change so that's why I'm sat here preaching to talk about you!

Recently the world has felt like a crazy place to me. 
I've seen so many people I love hurting and it's frustrated me that I can't take that hurt away from them. I tell myself everything happens for a reason, you grow from every single thing but it seems so unfair watching people go through these things.
I've realised the worst things always happen to the best people and that's life.
I have incredible people in my life, they make me stronger every single day and they make me want to smile more because I know I've got them to smile back at me.

Please make today You Monday not Blue Monday.
Ask yourself how you're doing and whatever the answer is, listen to yourself. 
Reach out to your friends and family, let them know you care and take all of the crazy stuff racing around your mind seriously because it's important. 
Do what will make your day brighter, bring a smile to your face because life is too short, it's made for living so please don't live it feeling alone!

Lucy Jane

we don't walk into the 20s, we strut .

Thursday, 16 January 2020


Motto of 2020, we don't walk into the 20s, we strut .

Happy New Year to you all! 
A slightly belated one but I survived through the stress of working Christmas in retail and I'm ready to take on 2020 with a bang. A new year definitely doesn't mean a new me but I think it's brought a new attitude and I'm kinda loving it...
2019 was a weird one for me having the highest highs and the lowest lows it was all a bit crazy. It started consumed by illness, I lost my large intestine, gained an ileostomy bag and got my life back. I then had the best summer imaginable, moved down to London for University, absolutely hated it and ended the year back at home. Amongst all this was a whole load of other things but as a general round up, my 2019 was completely unexpected. 
An uncontrolled yet exciting mess...

Heading into 2020 my mind is a bit of a shambles but all I know is I want this year to be filled with everything I adore. 
To travel, to create, to laugh, to dance, to be healthy, to love, to inspire, to grow, to write, to explore, to learn, to express and what I really want to do the most is to help people.
This time a year ago I was completely helpless, I never knew how I'd get better mentally and physically. Ulcerative Colitis was my life as I slumped into 2019. Now, I've got everything I could ever dream of back and I can strut my way confidently into 2020.

Who knows what 2020 will bring but for once the unknown is pretty exciting to me, having a life plan is over-rated because when I did have one it all went tits up!
My plan is to strut my way through my days and see where I end up.
I'll let ya know what happens...

Lucy Jane


Related Posts Plugin for WordPress, Blogger...

Latest Instagrams

© Infinity Of Fashion. Design by FCD.