Sunday, 5 November 2017

My Disease: What life is honestly like living with Ulcerative Colitis (diagnosis - now)

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.

This is the post where I talk about how my life has been impacted by this disease and it will probably be the most raw, emotional and honest post I will ever write. Before you read this post I just want to say that regardless to how I have felt, my life the past 8 months has included so many unforgettable times and the majority of the time, I can focus on the positive. This post is something personal for me to reach out and find if anyone can relate, to not feel so alone...

People say when you're diagnosed with a chronic condition you go through stages; denial, anger, bargaining, depression and acceptance. You're mind goes into meltdown mode because you know this  disease is going to be with you forever and you question how life is going to change. You want to look on the bright side but it feels like there isn't one.

Living with UC has made a few things arise in me; anxiety, isolation, unreliability and a general mix up of my life.

Anxiety was never something I'd had to deal with in the past and something I'd never imagined myself suffering with. Of course I got nervous on occasion, yet it was never anything worse than a few butterflies which always subsided. I've always known about anxiety and the affects it has on peoples lives, but I always felt too confident and self-assured that I'd never be in that position.
If you'd have told me in January that by October I was going to suffer with anxiety, I wouldn't have believed you.
My main anxiety stems from my urgency to go to the toilet with 0 control over when and where that will happen and what the consequence might be if I don't find a toilet in time.
I do everything I can to possibly minimise the chance of an accident; travelling on trains with toilets not trams, keeping my radar key with me at all times and locating the nearest toilets wherever I go but it is truly exhausting. I worry so much when I'm out of the house and by worrying I feel like I'm not behaving like myself. My house feels comfortable for me, leaving it brings so much anxiety sometimes I think why bother? I get upset because I know this wasn't the way I used to be, I'd always be out at college, working or with friends and now the thought of any of that is so daunting.
 I hate it. I try my best to push myself to go out and mask these insecurities because I know the longer I contemplate what could happen, the more anxious and worked up I'll become.
 When you're already worried about what exactly this disease and all these medications are doing to your body, feeling worried about leaving the house doesn't positively add to the equation. When I reach clinical remission and am no longer experiencing symptoms, then I am hopeful the urgency will go along with my anxiety surrounding it.
For now, anxiety is making everything much harder to cope with than I've ever known. Being somewhere alone, going on long car journeys, trying to go for a nice walk, it makes my mind tick more and more and builds up anxiety because who knows when I'm going to need to go.

Emotionally, I feel this disease has made me feel isolated. Throughout my life I've always been the friend that wanted to help, be the one to pick people up if they were feeing down. I always had a positive outlook on life and I loved that. Having the role shifted and desperately needing help myself, I struggled. I don't think I've ever wanted to admit that I am ill or that I can't do things exactly the way I used to. I tell my friends and family that I am okay or that I'll be okay because I really really want to be! Telling yourself you are and actually being okay are different things.
My recent colonoscopy report showed huge improvements which was amazing to hear, yet when you're still suffering constant symptoms it's hard to take it as a positive.
I feel isolated because it's hard for people to understand the emotional battle unless they're going through it with me (My Mum & Dad) or have been through it themselves. I wouldn't say I bottle things up but I'd say I find it hard to express how I really feel. I'm thankful I have my Mum to break down to on the bad days otherwise I don't know what I'd do, she gets how I feel and listens.
My emotions are constantly up and down and I suppose I've isolated myself because I don't think anyone needs to deal with it other than me.
 Dealing with both anxiety and isolation are something I'm going to work on and hopefully reach out and get the help I need. I've recognised now that I don't want to feel like this because physically, my disease is improving so why don't I feel like I am?

A huge impact on my life has been the unreliability of the day to day. With this disease, you could wake up after an 8 hour sleep and be bounding to start the day or you could wake up feeling like you've been hit by a bus, as if all the sleep you had that night didn't count. General fatigue is something symptomatic of IBD, add that to anaemia which I developed through having Ulcerative Colitis and you can easily become exhausted. I know I have boundaries now and if I push myself, I'll become ill and need days of resting.
You can't work out how you'll feel tomorrow or next week, which is why it makes it hard to plan things. I currently don't work or study and as of right now, I don't think I could. Some days I feel amazing and limitless others I feel defeated and useless, every single day is different.
Take today for example, it's Saturday 4th November and yesterday I had my Infliximab infusion which is the drug I am on to try to maintain my disease. It is slowly working which always gives me a positive outlook when I have my infusions. I was determined to wake up today at 8:30, get in some exercise and have such a productive day. The reality is when I woke at 8:30 I felt exhausted and couldn't even pull myself out of bed, so I slept in till 10:30 and have stayed in Pyjamas all day as I feel worn out, have been constantly on the loo and having stomach cramps.
Just another normal day with IBD...

I wanted to share a few quotes I found online that express things perfectly.

Regardless of all these mixed up emotions, I am still fighting because I refuse to let IBD consume my life. Some days you feel like you can't take it anymore, asking yourself 'What did I do to deserve this disease?' but the reality is you did nothing.
I tell myself that even though my battle feels like a heaviness that will forever be with me, some people have battles that they know they can't win. Although the suffering this year as been so hard to deal with, I know treatment can eventually prevent this and if all fails, surgery can successfully stop the disease.

Sometimes it's hard for me to digest when I think about the way I go about life these days. I couldn't have predicted the anxiety, the isolation and the unreliability because I always thought I could be strong faced with a battle like this.
So what is life honestly like living with Ulcerative Colitis?
It is the hardest thing I've ever faced but you have no other choice than to put on a brave face, be strong and keep on battling.

Lucy Jane

Wednesday, 18 October 2017

The Snakeskin pair of printed flares

Animal prints are my thing at the minute...
From leopard print to zebra, cow print to snakeskin, I am completely in love.

For the past two weeks I've been battling a dreaded cold which wiped me out for longer than expected. Laying in bed for days on end may seem relaxing for some, but when you've been battling illness for a year you don't wish for any more time in bed!

The cooler weather is slowly rolling in and as much as it brought a cold along with it, I am still so excited to wrap up in all my jumpers. The thought of long winters nights, spent first by a dip in a sweetly scented bath followed by being wrapped up snug on the sofa watching a film. I can't wait!
One of my favourite A/W things to do is layer pieces over turtleneck jumpers. Whether it be t-shirts, slip dresses or sweatshirts, it's an extra layer and some extra interest to an outfit! I opted for my CK sweatshirt , Zara bag and these PLT flares which I think are AMAZING.
I wore them on a recent night out and received so many compliments about them, I felt so special. You know when you just feel so sassy and confident you couldn't care less what you're doing?
Well thats me in these pants!

I love that you can dress them up and keep them so casual and also, that they're so comfy!
This A/W I'll definitely be rocking so many pairs of printed flares...

Lucy Smith-Butler

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

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