Wednesday, 11 October 2017

My disease: The trials of my treatment and medication for Ulcerative Colitis

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.

Blog post number 4 in this series leads me onto my personal experience of how my Ulcerative Colitis was treated. Before I begin properly, I want to stress that what didn't work for me may have worked for others and what did work for me may not work for others! This disease is very personal with no set cure, finding a treatment that works is trial and error but you have to have faith in trying a whole range of new things. Due to funds raised by Crohn's and Colitis UK, developments in treatment are growing and more money means more research to find a cure.

I completed a sponsored walk this year to raise funds for C&CUK. The link is below if any of you wish to have a look or even donate, every little goes a long way!

So my medication...
Having UC you have to come to terms with the fact that every day for the rest of your life, you'll probably be taking various tablets. Not the greatest thing to be doing but you know if its going to help, it needs to be done.

When I was first diagnosed in March, I began taking Octasa (commonly known as Mesalazine) which is an anti-inflammotary drug given to a lot of IBD patients. I took 4 a day for the first month or so and didn't really notice any side effects. I was also on steroid foam enema which I had to use twice a day for two weeks, then once a day for two weeks and it wasn't a fun experience. As it was thought I only had proctitis, the goal was to tackle the disease at the bottom which was why enemas were chosen as it would directly reach the inflamed area. Enemas aren't enjoyable but after a while you just get used to it! I took this medication for a month and saw absolutely no difference to my symptoms. When I explained this to my consultant at the time, he simply told me to 'change my diet' and check in 'when I was available'.
Long story short, I was left for around 4 weeks with no working medication and no idea of what was happening inside as he made me think it was only a minor problem. The weeks I was left with nothing calming my Colitis made it so much worse to the point I knew I wasn't stupid, I was really ill.

I'd say it was around May/June time now and I'd changed consultants. I met my new consultant, told him everything and did all the tests, scans and scopes to determine the extent of my disease. From my MRI scan, it was determined my Colitis was no longer Proctitis and had travelled up the left side of my colon. To treat this I was put on a steroid called Prednisolone which is a quick fix, rather than a long term treatment. I was only on a low dose but as it's a steroid, I had to take Adcal D3 tablets which are calcium supplements. Now I'm no doctor but I'm sure I have to take these because the steroids weaken your bones or something along those lines. Throughout June this was the medication I'd take daily with very little knowledge of whether it was working or not. I knew my symptoms weren't getting any better but I wanted to have faith in the treatment working.
Mid-June it was discovered I had an anal fissure which is one of the most painful things to experience, especially when you have IBD and go to the toilet a lot! To treat this I had a special cream which was another vile experience but when you have IBD, all things poo and bums become normal!
June was my month of stressful A level exams and my mad girls holiday to Zante, which unfortunately left me hospitalised early July.

After a colonoscopy uncovered the severity of my disease, I was admitted to hospital as my colon was on fire. The first few days in hospital I had assumed the treatment I was getting would make me better, the reality was it was a quick fix. I was on really high doses of steroid infusions in order to stop my disease spreading which is used a lot in IBD to immediately maintain the disease. It was only on the third day in hospital that I began to understand treating my disease was now a much more long term process and I had a lot to learn.

So where am I now?

After leaving hospital I was still taking Prednisolone, Octasa and Adcal D3 and still am now. The only side effects I've really felt is the steroid moon face and an increased appetite, other than that I had no problems. In July I started Infliximab infusions which is a really confusing but really clever drug that works for a lot of IBD sufferers. It's a biological drug that targets a specific protein in your body that causes inflammation but if you want to gain a better understanding visit Crohn's and Colitis UK as they explain things much better! It does lower your immune system meaning I've had to have flu jabs, pneumonia jabs and Hepititis but it's lucky I don't mind needles! As a side effect of IBD, I became anaemic. My iron levels dropped quite low which made me so SO exhausted but luckily an iron infusion fixed this!
 I've had 3 Infliximab infusions over the past few months and am so so happy to say that after my last colonoscopy, I was told my disease is making excellent progress! I am not yet in remission which would be a symptom free life, but I know I'm going in the right direction and thats the first bit of hope I've had in the past 8 months. We've considered Azathioprine but after testing me for certain things, that drug has been ruled out for me. I am finally nearly off steroids and have a 6 week course of Azacol enemas to use in order to try and calm what inflammation is left in my bowel . If you're interested in finding out more treatment options then Crohn's and Colitis UK have all the information.
My treatment has felt like a long long road to nowhere for a very long time but I finally feel like there is a light at the end of the road! I know my disease is chronic and my body may grow resistant to certain things that work for me now, but for the time being I'm getting somewhere positive.
 My best advice is to research your treatment, don't expect over night results and never say never!
I hope by the end of 2017 I can say I've reached remission because I can't wait to know what it feels like to feel normal again.
 I am so thankful for being able to access the amazing treatment I've been given as I know peoples situations can impact their access treatment . I know what I've gone through is my own personal battle and may seem small to others, but I'm proud I've tackled all these hurdles and overcome a whole lot of challenges!

Lucy Jane

Sunday, 8 October 2017

My Normal Life?

Jacket - Bershka // Jumpsuit - Topshop // Shirt - Chairty // Shoes - River Island // Belt - Mango // Backpack - Primark

I miss the posts where I just write my thoughts accompanied by an outfit of the day I was thinking about it, so here goes nothing...

If you were told to go back to your 'normal life' when you still didn't feel like the 'normal you' what would you do? I started to question what my 'normal life' is.

The normal life I knew of should've been living in London,  going to University and studying to reach a career of a lifetime. The normal life was enjoying myself, organising so many day trips and nights out that I'd never have a moment to myself. The normal life was waking up and being energised and motivated to do something with my day, to reach all the goals I had. 
The normal life was everything I'd dream of. 
 When you're told to live your 'normal life' again and you realise you don't know how to, it hits you hard. 

Things are going positive for me at the minute but positive doesn't mean back to normal. I'm so happy about the direction my health is going in and know within the next few months things should be more 'normal' than they have been all year! I'm just finding it hard to grasp that my 'normal life' now, isn't exactly the one I thought I knew.
For now 'normal life' doesn't feel familiar, but I hope this time next year I can say I did it, I got back to my normal life.

Lucy Jane

Wednesday, 4 October 2017

Red Racer

I'm going to start this post by simply saying...
I won't lie, I felt like such a boss shooting these pictures, I loved it!

Moving on from my little self confidence booster, since March I had been dying to shoot a post in these Misguided red pants as they are everything I need in life. I wore them when I watched a show on Broadway in New York and the experience will always stay with me. I remember walking through Times Square and a man shouted 'Hey, where can I get a pair of pants like those?' I replied 'England ahah' and he said he was coming to England to get them! They're certainly head-turning pants but they fill me with so much confidence, I couldn't care less!

Red is definitely a big colour this A/W but in my head, red has always been my special colour. I have a red a room, I have a red car and nearly 50% of my wardrobe is some shade of red just so you understand my obsession. It's fun to be walking round the shops and entering a sea of red but a little part of me wants to take everything off the shelves and keep it for me as my signature thing. Today I decided the  'Red Racer' vibe was for me, pairing this PLT top, Misguided pants and Zara boots, I was head to toe in red. One of my favourite pieces is this Charity Shop red belt. The silver studded detail gives it this edgy, street-style look which people are loving at the minute. Trends always repeat themselves, so head to a Charity shop to find some goodies!

Finally, I want to address this amazing Primark find that I customised and now obsess over!
I picked this Denim Jacket up for £19 in Primark which was such a steal, it originally had black laces on each side but I decided to make it my own. I ordered some ribbon off eBay, laced it up and created this beauty! 
If you can't find clothes you like, why not just do it yourself?

Lucy Jane

Sunday, 1 October 2017

# CHARITY SHOP BOP - Mad for a little bit of plaid

It feels like autumn is quickly approaching and I am rather excited about that. It means I can dig out all my favourite cozy jumpers and invest in some new ones!

Usually I'd be dressed head to toe in burgundies, orange tones and leopard print but I've been opting for something slightly controversial, pastels! I've never really been one to invest in the pastel colour palette as it doesn't really do anything for my complexion but when I saw these pants, how could I leave them? I picked them up for only £1 from my favourite Scope charity shop which is such a steal. They're this pretty mix of blue, green and yellow which is a combination so far away from my typical style its a little bit scary. With autumn styles quickly taking over the high street stores, I've seen a lot of pastel pinks, purples and blues trying to push their way into a typically dark autumn wardrobe, slightly strange. The one thing about Charity shopping is the affordability, you can be one step ahead of the game and try a trend for a minimal price! 

Lets talk about this £1 knit (YES THE WHOLE OUTFIT WAS ONLY £2!!), I love it! You always need a staple white knit to pair with absolutely anything through the colder months and I think this is mine. The thing that sprung out to me about this piece was the oddly shaped neckline, is it turtle or square necked, who knows? It's so cosy, comfy and warm, the three essentials for my winter wardrobe!

Lucy Jane

Monday, 18 September 2017

My Disease: Understanding Ulcerative Colitis

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

Monday, 11 September 2017

A disposable summer of 17

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

Thursday, 7 September 2017

So uncool

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