My Disease: Understanding Ulcerative Colitis

Monday, 18 September 2017

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.

We're at post 3 in the 'My Disease' series and it's time to talk about understanding it!
When I was diagnosed with proctitis/ulcerative colitis, I went straight onto Crohn's and Colitis UK website as everything was so easy to access. All my prior knowledge of the disease stemmed from my Nana as she suffered with colitis and had an ileostomy due to the severity. Immediately I was scared, now looking back I wish someone would have told me this.

5 tips to understanding Ulcerative Colitis:

1. Colitis is an auto-immune disease causing an inflammation and ulceration in the colon and rectum which makes you shit, a lot!
Basically, your immune system is fighting against your body which in the mean time, creates ulcers and a bit of a mess in your colon, hence making a mess of your bowel movements!

The diagram below shows what my disease would look like if it was visible on the outside and after being made to watch the camera travel through my colon, I can tell you its a good job you can't see it!
Stages 1-4 show the severity of colitis, 1 being Proctitis only effecting the rectum and 4 effecting the whole colon. My condition, as of now, has reached stages 3-4 even though I was diagnosed early on.

2. IBS is not IBD.

Irritable Bowel Syndrome is a completely different condition to Inflammatory Bowel Disease but they get confused so easily. I understand they sound similar, but when I was first diagnosed I let people assume that they were when they are completely different. The truth is that IBD causes inflammation, ulceration and damage to the bowel whereas IBS does not, IBD involves rectal bleeding IBS does not and the extreme fatigue with IBD is not a symptom to IBS. Although the symptoms of stomach cramps, varied stool movement and the urgency to go may be shared, they are two separate conditions that need to not be confused!

3. Everyone suffers differently.

One of the most annoying things to accept is how 'My disease' really is 'My disease' as every sufferer of Colitis is unique. When I was first diagnosed, I understood that the disease had a process of being in 'flares' and then 'remission'. I was obviously searching for remission and as of September 2017, I can't say I've found it. My experience with the disease has been a constant suffering of symptoms in one long flare. Other people go years before seeking medical help as their short flare ups are followed by months of remission, it's different for everyone!

4. Therefore, everyones treatment is different.

Ulcerative Colitis has no definitive fix and my god do I wish it did!
There will be a post on my personal treatments at some point but heres a quick overview.
In general terms treatments range from anti-inflammotary drugs, steroids and biological drugs which all can be taken in tablet form, through infusions or the joys of enema form. In treating Ulcerative Colitis, I've gotten the impression its a trial and error system. My body has been quite unresponsive to most drugs and the next stage if it can't be managed with medication, is considering surgery. The one surgery I know for Ulcerative Colitis is an ileostomy as that is what my Nana has lived with for 50 years. I am not hugely knowledgable on the surgery side as I hope my disease doesn't progress to that but if you're interested in learning more, Crohn's and Colitis UK have plenty of information.

5. It is a chronic disease with no cure.

I'll most probably do a separate post on this, but Ulcerative Colitis is a chronic condition meaning it will have to be managed for the rest of my life. Even though you're told you can get back to normal once its under control, there is always the underlying feelings that things might not be normal forever.   I think accepting that I have this disease for the rest of my life is the hardest part because I think of my life pre-diagnosis and wish things were that simple again. The daunting prospect of it having no cure is what pushes me to fundraise for Crohn's & Colitis UK as there is nothing more that I could wish for than a life without this disease!
My fundraising JustGiving page can be reached here!

Honestly, I'm still understanding my disease as there is so much to it and I'm so newly diagnosed, I could never know it all! I hope this has increased your knowledge on Ulcerative Colitis and made you think about battling IBD together!

Lucy Jane

Useful Links

A disposable summer of 17

Monday, 11 September 2017

A disposable summer of 17.
I look back at these as a sort of highlight reel of the past few months, these pictures show the best bits and thats what I need to remember. Most years I've done a blog post reflecting on my summer experience and always get so overwhelmed when writing it as I'd been having the time of my life. This summer didn't pan out the way I'd planned when dreaming of my final summer before University. It's been 40% really good and 60% not so good but I'm here to look on the bright side and forget all the shit.

Since 22nd June I've been living out what has felt like the longest summer ever. So highly anticipated  by all my friends and I, we had so many ideas and plans that made my summer calendar jam packed. Unfortunately, this summer wasn't exactly how I imagined, it was more jam packed with hospital visits than the plans I'd previously made but that was okay.

This summer has knocked me down, messed me up and I think I'm glad of it. With everything that has happened, I've had to learn more about myself and my body in order to understand my limitations. I'm more conscious of how I'm feeling, if I'm tired I let myself sleep, if I feel good I make myself go out. Being in this unpredictable state for such a long time it becomes hard to make plans. I don't want to be a let down but I just can't help it. I suppose I'm now more grateful for all the positive days I do spend with friends and family, if I get at least 1 good day a week thats a reason to smile! 
The times I've spent with the people I love over summer are the times that have pushed me into wanting my old way of life back. Being surrounded by support, there simply is no reason to give up, I want to get better for everyone and for myself.

So summer 2017 may not have been the most amazing summer of my life, yet I'm still grateful for every experience I've had. 
I hope to look back on this in a years time and say 'Well you did it Lucy!'.
 I hope I'll be packed up and ready to move to London after living out the best summer I could imagine. 
I really hope things are better after a year of trying, I hope you're being the best you and living like you used to.

Lucy Jane

So uncool

Thursday, 7 September 2017

A style heavily influencing the fashion world in recent months is the retro styles of the 90s and early 2000s. The only way I can describe the look is that its so uncool, it actually looks pretty cool. People seem to be pulling inspiration from Paris to Britney, the Olsen twins to the notorious Mean Girls and I absolutely love it! The famous trends linked to these 'IT girls' at the time were feminine, sexy and unique, like the velour tracksuit that was iconic in my youth! I looked towards the grunge scene of this era, playing up pieces with this tough, strong feminine vibe. 

Lets begin with my 50p Charity shop glasses which you'll either love or hate. All over Instagram my feed has been filled with people rocking these slim shades and I'd been debating whether they were a hit or a miss. As a practical pair of sunglasses they definitely don't fit the bill, but as a unique accessory I think they add a twist to any look. 
Keeping on the theme of accessories, I layered two chokers purchased from Ebay and Primark because I feel so bare without them. The geometric piece kicks off the chunky silverware accent to the look, matching my red Charity Shop belt and my DIY B&Q thick chain. Having such stand out accessories can either make or break an outfit, in this case it makes it!

Rummaging through my usual location of a charity shop, I discovered this mens oriental print top which I knew I could style up in such a different way.  Whenever I come across oriental pieces whilst charity shopping, I automatically want to buy them as the prints are so intricate and with the culture behind it, it will never get old. I paired a Zara mesh top underneath which is a staple for A/W as its all about those layers. Another staple is my Asos denim skirt which I wear to death! When you find a good denim skirt, a part of your heart feels fulfilled that was once empty. Slight exaggeration but I do love it a great deal.

You be the judge, is this look so cool or so uncool?

Lucy Jane

A colourful day in Camden

Saturday, 2 September 2017

Last week my friends and I ventured on a little 4 day holiday, a trip down to my favourite city London for a lot of sight-seeing, laughing and lets not lie, drinking. London is the city I adore and was supposed to move to this year (long story). This trip was a sort of 'get to know the nightlife' for me and to also share my love for the city with my best friends! 

Saturday 19th August, after quite a slow start to the day due to the antics of the previous night, we left the hostel at around dinnertime. Camden was the plan. A day filled with quaint little markets and a bunch of instagramable graffiti, one of my favourite spots in London. After a quick tube journey and a stop off at platform 9 3/4, we arrived in Camden and all had one thing in mind, FOOD. 
We stumbled upon a restaurant called 'The Diner' which none of us had ever heard of before and decided to eat there (best decision EVER). The food was exactly what we needed, proper tasty food that we were all obsessing over. I had a Chicken Burger which was amazing and shared some Blueberry Pancakes with Ell which were so delicious, I'm craving them now!

After eating we walked up to Camden Market where Sally and I got lost in the stalls for hours, all the unique designers never fail to impress me there. Something about running your own stall really appeals to me, the amount of people you'd meet and get to share your talents with is pretty astounding! A certain stall caught our eye, it was ran by the loveliest lady and she braided feathers into your hair which of course, Sally had done! I will say I regret not getting some feathers as it looked so pretty on Sally, but I probably couldn't pull it off as well!

A colourful day in Camden was brightened by the discovery as the most instagrammable wall I have ever seen! I knew blog pictures had to be taken...
For my outfit, I'd opted for this pretty little Zara playsuit which deceives all as it looks like a dress! The shorts hidden underneath were a necessity walking round as London decided to be very windy that day. I'm all for those red vibes at the minute so paired it with my beloved eBay choker, you can never go wrong with it. I then threw on my classic Vans and some fishnet socks and off I went. I'm big on comfort these days with my Ulcerative Colitis constantly affecting my belly area, so dresses and loose fitting pieces are what I live for! 

To finish off the day we strolled up to Primrose Hill, watching the sky change colour and dogs steal pizza. This colourful day in Camden was one of the best days I've had all summer, a day where I didn't feel defeated by my disease. Sat on Primrose Hill surrounded by my best friends, I couldn't have wished to be anyone else or anywhere else. These are the days I need to hold on to and remember when things get me down. The bad days might outnumber the good for now, but at least those good days are bloody good!
Just keep swimming I suppose...

Lucy Jane


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