Hello lovelies! This blog post is going to be a very personal one. I have had a lot, and when I say a lot I mean a massive amount, of people asking me about Ulcerative Colitis because as you may have seen every day at 3pm I tweet about UC. This blog post is not about asking anyone for money. I want to write this blog post to raise awareness and also answer any questions that you may have about this horrible invisible illness. December 1st until December 7th is National Colitis Awareness Week and I have decided to finally share my story about living with Ulcerative Colitis.
I've realised not many people know what ulcerative colitis is or how bad it can ruin someone’s life. This will be a very long blog as if I am going to write this and be one hundred per cent honest I'm not going to leave anything out. This is a view from a suffers point of view. So this page is basically me and my colitis in my own words:
First I want to state that I have had a lot of hate mail about my ulcerative colitis online and if you are going to be one of the people who is just going to message me, tweet me or comment below some crap to try and hurt me save it because I am really not interested. You have no idea what I have been through with this illness and you probably will never understand so please.. just don't bother.
Yes, I admit, it actually upset me quite a bit when people send me hateful emails because of something I suffer with. I'm not perfect and I have never stated I am, imperfection is perfect and we are all imperfect.
I have never told any of my friends what my condition does to me because I'm honestly worried they will be disgusted. This is actually really hard for me to sit and write down everything to put on my blog for the world to read where I know I am going to be judged. It's honestly, hand-on-heart, one of the scariest things I have ever done.
To explain it in my own words it’s basically a chronic disease with most of the symptoms of Chron’s disease, but also means it’s not located the same was as Chron's. Colitis itself is a disease which can attack the intestines and colon. Chron Diseases affects the throat and stomach.
Ulcerative Colitis is very similar (but not the same) as Crohn's Disease and is more than "just" a bowel condition. It's important to remember that Ulcerative Colitis and Crohn's Disease are both lifelong conditions, that can have a serious impact on a person's psychological health.
I was diagnosed with Ulcerative Colitis when I was fourteen years old after so many tests and hospital visits. I had been suffering for two years previously from the age of twelve years old but secretly had been suffering from when I was ten years old. I was scared and alone, I had no one to turn to and every time I did open up I would be taken to the doctors and just brushed off as "becoming a woman". LIES! I have learnt so much now that never ever take one doctors opinion, ask for another opinion, and another and another. Because if you know yourself that you are unwell then you are probably unwell.
Managing the disease with medication is often as unpleasant as having it. Anti-inflammatory drugs like mezalizine or sulferzalizine are usually taken daily but for other more serious cases, like mine, you need to take a high drug. I take a daily dose of mercaptopurine, which is a chemotherapy drug typically prescribed to leukaemia patients or rare people with my form of ulcerative colitis which needs to keep it under control. My personal known side effects of mercaptopurine are; higher risk of getting an infection, headaches and sometimes painful joints.
"UC" itself not only causes ulcers (which alone can be so dangerous) but also abdominal pain, bleeding, bloating, weight loss, fainting, vomiting, nose bleeds, constipation, diarrhoea, headaches, and on a very serious note cancer. And to top it all off - there is no cure.
Side effects from just Ulcerative Colitis without medication include the likes of; anaemia (which I battle most of the time); swollen joints/arthritis (with I have); osteoporosis (which I have); eye, skin and liver problems; overwhelming fatigue and lots more. Plus once you find a medication for Ulcerative Colitis that your body can handle then you will get at least one or two side effects from that too.
I was in secondary school when I first had my attack of the disease. It was horrible and I was alone in one of the art rooms. I got stabbing pains in my stomach; I was sent home from school with "period pain" and was told to rest. These pains did not go; they just got worse and worse so I was taken to the hospital. After waiting for what felt like forever I was finally seen, given a scan and some paracetamol {why is it that’s all accident and emergency give you?!} and told that I was "becoming a woman" and my periods would start. Well, that was bullshit because I had already been having my periods for over a year! I left the hospital, went home and a few days later was put back in school... I was still in pain. And I was about to reach my first low point. It was just before I left and it had "got out" that I had been unwell.
There was one girl who had seen me at the hospital holding my stomach and automatically I was sick, I was dying, I had an eating disorder, etc. So we were in class and I asked my teacher if it would be okay if I got some air, the teachers had been told I had recently been in hospital and was feeling unwell lately so let me go always, but in front of everyone this girl goes "you do this all the time, you don't even look sick!" and me being me replies "yeah but you don't look stupid, its amazing what makeup can do isn't it?" and walked out of the room. I think deep down that’s what attracted me most to make up. I could look "fine" and still feel like complete shit.
I get so annoyed sometimes at some of my friends and family when they play "jokes" or say "jokes" to me because deep down you have no idea at all how much them jokes of yours can hurt someone - and I stopped telling people my point of view about my condition because every time I did, they got judgemental and critical or weird with me. So if people ask me "what’s wrong?" I just say "I'm fine" or "ulcers" these days.
And that was the day my colitis went overdrive into "flare up". ("Flare up" is a term used by suffers when you get every single side effect at once because you are either stressed or your blood sugar is low.) I went to hell. For ten months my life went on hold: I didn't eat, sleep, or even hardly talk. Or whenever I did talk I would mumble a few words because it was so painful for me to do anything. I just lay in bed for months listening to music. I couldn't read or watch tv because the pain had gotten so bad that I couldn't concentrate on anything. I lost a lot of weight, a hell of a lot of weight! Every time I went to the hospital doctors would just say the same thing "it's just her periods starting" and send me home. People who may read this who are close to me will probably notice that from the ages of twelve to sixteen there are hardly any photographs of me and that’s because I wouldn't let people see me. I was a living zombie. I do have about three photographs and look at them from time to time to remember how far I have come and what I have been through to get to where I am now. But those ten months I was in my own version of hell. I was starving, depressed and alone, and all I wanted to do was find out what was wrong. Why me? What did I do to deserve this? Did I, myself, do something to cause it? I just wanted answers and no one could give me them because no one knew. Do you have any idea what it is like to be fourteen years old and cry yourself to sleep every single night for ten months because that was the only way you exhaust yourself so much that you would get some sleep? Do you have any idea what it is like to wake from that sleep and wonder why you are waking up and are not dead? Because I do. And trust me when I say it’s a fucking living hell.
On Thursday 5th February 2004 I had enough. I had been in bed for ten months unwell. I was thin, starving, scared and alone. My little brother, who was only four years old at the time, had come into my bedroom to see me and he asked me was I going to be an Angel in Heaven with God. I burst into tears. That was my changing point. I packed my bags and made my dad take me to the hospital, I refused to move until I was properly seen and after a very long wait, I was given a bed in a ward. I was in the hospital until Sunday 15th February and I can honestly say the days were a blur. I was put on an intravenous drip and the number of times I had tests, scans, needles, medication, side effects, the number of bed sheets I used due to nose bleeds and slipping drinks because I was too weak to even hold a cup to my mouth without it shaking was all unreal. From what they told me I had anorexia I knew I didn't but still tests and scans and medication, doctors just wouldn't seem to listen and said I was depressed and that I was suicidal. I wasn't suicidal. I'm not suicidal. I never have been suicidal. I was tired. I never wanted to die, I just wanted the pain to go away. I got tired of never feeling good enough, feeling worthless, tired of crying. I was too exhausted from trying to be stronger than I feel. So I quit. I gave in and I let the hospital keep me in and run as many tests as they wanted.
I was fifteen years old, I had been in the hospital for a full week, I was a size four-six in women's clothes, I could fit into a children's age six-seven, I was five foot one and I weight just hitting three stone. I was dying. Yes, you read that right, three stone. But I was ill. More days passed and finally, they said they were taking me to the theatre. I was scared and worried but I knew I had to be strong. I went to the theatre and when my results came back I was so happy that I let them help me.. they found something.. I had UC! They finally knew what was wrong with me and they knew how to save my life.
It took me a really long time to be diagnosed with my colitis (just under four years to be exact) and I remember the day I was diagnosed. I was a size six, sixteen years old fragile little thing and I sat there in this over bright lemon painted room and felt like it was just a matter of time before they add the word "syndrome" after my surname. I do actually remember saying when I was fourteen that if they ever find out this mystery illness that I want it named after me - that kind of still makes me giggle a little bit. But after four years and hundreds of tests and scars and medications I had an answer, I knew what was "wrong with me". I've lived with this disease now for way over ten years so I basically know my body now and have learned my lessons of what to do and eat and drink etc. My advice to anyone is to not always listen to one doctor, always get a second (and sometimes third) opinion. Don't be scared to ask questions, do not stress about things and don't Google if you don't feel well, make a doctors appointment and be seen by them.
About my stomach cramps: My stomach makes some terrible horrible embarrassing noises too and it can be so shameful! I hate it so much. To some people the noise may be like "ouch, painful" but you seriously have no idea. It feels like someone has stuck a knife in you and they are slowly turning it. I have learned a small tip though; whenever it happens and its bad, I hold my breath until the pain has passed and then slowly let the breath out. That way I'm more concerned on holding my breath in, then I am about the pain and it slowly fades. It does sound horrible and it feel like a baby is inside me kicking, I've actually had family and friends hold my stomach when an ulcer is about to pop and they say it feels like that also.
Dieting, food/drink and exercise: Dieting is hard to "normal" people, dieting with a chronic illness is hell. You can't over exercise because of exhaustion, you need to cut calories to make up for not being about to exercise and are more exhausted due to lack of nutrients. After all these years I know what I can and can't eat without feeling like insides are going to explode! Scrambled eggs, chicken, fried rice, frozen yoghurt, jelly sweets (like Haribo or penny sweets), milkshake, pancakes, strawberries, cherries - are all really good things for me to eat. Hot chocolate, coffee, Jack Daniels and coke, lemonade - are all really good things for me to drink. Short walks, dancing, sex, massager's, Zumba - are all really good things for me to do. Hot water bottles are amazing.
I'm allergic to medications which end in "zine", black currant, liquorice, currents, lavender, Lucozade, and tea tree.
Invisible Illnesses a horrible nightmare to live with. You can't see the pain I suffer every moment of every day, most people don't even understand what I go through and deal with on a daily basis. People think I'm lazy or that I want them to feel sorry for me, but I am stronger than anyone knows because I fight this illness against my body every single day of my life. I don't want people's sympathy at all, I just want to be treated with respect like any other person and all I want every day of my life is to feel better because I have honestly forgotten what that feels like.
One of the best things someone has ever told me about dealing with my Ulcerative Colitis is "Head Up, Stay Strong, Fake A Smile and Move On". Because that's all someone like me can do.
I want to make it clear now to everyone ever who has mocked me, bullied me or said horrible things to me about my Ulcerative Colitis condition.
- My medication is the reason I have a fat face, not because I eat lots of food.
- My medication is the reason I am overweight, not laziness.
- My disease is the reason I find it hard to leave the house, to plan activities, to be somewhere new.
- My disease is the reason I am tired 80% of the time.
- My disease is the reason I'm so fussy with food, not because I am a bad fussy eater.
- My medication is the reason I get mood swings sometimes, not because I am a complete bitch.
I look fine, but I'm not. I'm being strong but people's comments and judgements and lack of understanding hurt. They hurt so much they make me feel worse about myself. So excuse me if I don't have to take for your silly comments and remarks because I don't have time for negative people in my life to hurt me.
Phil, my husband, has also written a little bit of a description of what it is like to live and be with someone who suffers from Ulcerative Colitis like me:
"Living with someone who has ulcerative colitis is often challenging, often there are the bathroom emergencies, which can be surprising to people unused to it however once understood can mean the pace of your day may alter but is still your own. Finding public toilets can prove a task but with the help of an orange card, businesses are understanding of a medical emergency. Food can sometimes be intriguing as certain foods which would think be irritable can prove helpful in flushing out built up ulcers. Hot water bottles are often a must in easing the pain but not stopping it completely. Energy can be dropped quickly through even the basic of tasks but does not stop the sufferer from going about their day. Car journeys can prove difficult as potholes in the road, speed bumps and uneven road surfaces will put the sufferer in more pain through the vibration and motion. Plans may have to change or be cancelled if the sufferer doesn't feel well enough to go outside their house. Medication can have various side effects varying from different people ranging from insomnia, hallucinations, depression, anxiety and loss of appetite."
If you have taken the time to read all of this, thank you so much! You are amazing and I love you for it. I have tried to cover everyone's questions so if there is something you want to ask just let me know by commenting below or tweeting me and I will answer any questions. I really hope this gives people a bit more of an understanding or helps people who are suffering.
So please everyone share this status for me, copy and paste it in support of Ulcerative Colitis and everyone living with this horrible illness goes through: "Colitis Awareness: Fighting To Find A Cure. 💕 @crohnscolitisuk @crohnseffect @ccfa #colitis #uc #ulcerativecolitis"