Char’s World of Colitis

Introduction:

Hi there, I’m Charlotte, 35, from London and I was diagnosed with UC in June 2009. I can honestly say that the last three years have been the hardest years of my life so I’ve signed up to this site in order to meet fellow friends around the globe and reach out for some positivity.

I enjoy writing, music, pottery, open spaces, greenery, dogs, friends, wine (uh oh) and good conversation.

Some more about me:

Well, I’m an events manager by day and a budding travel writer by night, or whenever I’m lucky enough to get a commission! My friends would say that I’m an up for a laugh, vivacious, and nice human being. They would probably say that I worry a lot about stuff that I shouldn’t, like work, but hey I’m working on that.

I love my life and the only thing that gets the better of me from time to time is this horrible disease that leaves me with no energy to go out to enjoy it.

Im a born and bred Londoner – actually, I’m one of the very few real Londoners left living in London. I love my city but I also enjoy leaving it from time to time – it can sometimes be too stressful.

I love dogs and I’m hoping to get a furry animal soon.

Symptoms:

I’m currently bleeding with mucous and have pretty bad abdominal cramps.

I’ve been in bed for about four days with no energy. Sad times. I’m gutted.

I used to suffer with quite bad mouth ulcers – however, I believe i have found a cure which I am going to write about below.

Char’s World of Colitis

Charlotte’s World of Colitis. A disease I had never knew existed until June 2009 when I was on a break in Greneda, writing a travel feature for the newspaper that I worked for at the time.

It started with some weird cramping and a little bit of blood that got progressively worse as the year went on. Unfortunately, the disease went undiagnosed for a long period of time which meant I suffered more than necessary. I kept being told that I had iBS but never mind.

UC has changed my life in so many ways – in fact it is still changing every day. I can honestly say, this is the hardest thing I have ever been through and until anyone of us becomes ill – you never really appreciate good health until you’ve lost it. What is that saying, the ‘greatest wealth is your health’. Ain’t that the truth.

So, I haven’t had a boyfriend for two years – not a serious one as I haven’t had the energy or commitment to focus on a relationship while I have been suffering so much. Also, I’ve been really embarrassed about the symptoms that come with it – i’ve had really bad wind!! I’ve also felt really unattractive and bloated a lot of the time due to the steroids I was on at the start of this roller coaster ride.

However, about 16 months ago the doctor put me onto Azathioprine and I do believe that I saw a difference. I never reached remission but I perked up. I had regular blood checks to ensure my cells were doing all of the right things (which they were – hooray, something works) and 2012 was not as bad. Well, actually my joints flared up a little bit but they were kept under control on sulphasalazine.

The whole time I went through this – I continued to work, five days a week, on a busy national news desk without a break. I do not know where I found the strength, grit or determination to continue working like I was a fit and healthy person. I always knew that I had a very strong inner strength and the type of of resilience that is rarely seen, but actually it is something that I regret.

Maybe I was in denial? Maybe I was too ambitious? Or scared of getting fired? Or just plain stupid. I do not know. I do know that I put work before my health and that is something I will never do again.

However, I am off work now for the first time in five years in order to finally get to grips with what has happened to my body and to deal with the physical and mental ramifications that come with it.

Last Friday, I think I had a little bit of a mental and physical exhaustive break down. I said to myself, no more. I’ve packed up my desk, GP signed me off and I’ve spent the last week reading and reading and reading.

I’m now going to look at new diets, holistic therapies and any other fads that are out there in order to get well. I’ll do anything. I’m going to start a blog.

I say this, after spending four days in bed feeling very sorry for myself, but I gotta believe and I have to stay strong. I love my life and people in it too much to give up.

I’d love to connect with people on this site that are in the same position as me, or who can give words of encouragement, tips, advice, rants, laughs and thoughts.

It’s really hard for my friends and family to understand – and I am only too aware already of how much I have lent on certain people over the last few years for support. It’s a strain on everyone, not just me.

Unless people see a broken leg, I believe that other’s will always find it hard to relate or support continuously. No one wants a depressed friend, do they! And that is just the problem with Colitis – it is continuous. My parents are great – they call, they check in, but they worry. And that makes me worry. I don’t want them to worry. I guess that is life though.

On the bashful side of things – I’m not bothered about my doctor checking out my butt all of the time. It’s the last of my concerns…. ;)

On that note, I hope to hear from you all soon.

Now what the hell is going to stop the bleeding? Help!

Love, Charlotte xx

Medications:

Azathioprine worked for me to a certain point. I never reached full remission but I did feel better.

However, I want to share a drug with you that quite literally saved my life. I suffered with severe, SEVERE mouth ulcers for the last five years. I’ve never experienced so much pain in my life. I continued to work – again I do not know how. I tried everything in the books from bonjela, to steroids, to doxycycline, to azathioprine, Corlu pellets – the lot. Nothing worked. I was at my wits end and had no life.

Until I stumbled across a professor at Guys Hospital in London who told me I had two options left, great! Thalidomide OR colcichine. A drug normally prescribed for Gout symptoms.

I said yes to Colchicine and after five years of agony my ulcers went away. To this day I cannot believe it. Pepe Shirlaw is her name – I will never forget her. Apparently, it is something to do with your nutrofills – and this drug surpresses them. Hey presto – no more ulcers!

It doesn’t come without it’s controversy but it has given me life back so I can at least eat, speak and go out now.

written by Charlotte

Submitted in the colitis venting area