The Embarrassment of Crohns

I was diagnosed with crohns at the age of 18 but it took almost two long years for me to get diagnosed. I had to go to the hospital to see the specialist doctor because I had anal fissures. At first they were thought to be piles and I was given cream for that but it did nothing. I was then told they were fissures (small cuts) which get stretched every time I went to the toilet. Cream and laxatives were prescribed.

Now, having to show your bum to a male doctor is extremely embarrassing, but I had got comfortable with my doctor and it ended up not being that bigger deal. His boss decided to see me one week after years of seeing the other doctor. I freaked. There was no way I was going to show my bum to this man. He just said ‘Yes, but I’m his boss’…I don’t care. He could be in charge of the entire hospital; he was not seeing any of my nether regions. So I sat down and told him, that it was still hurting, I was still bleeding and struggling to go to the toilet.

He discharged me and told me to stop taking the medicine.

Three months of absolute agony passed and I requested to go back to the hospital, it was decided that I would have a biopsy. ‘There is no sign of cancerous tissue but there is sign of crohns.’ I had never heard the word ‘crohns’ before and I had no idea what it was. I was given all these different types of leaflets and I was introduced to the ‘crohns nurses’ who I could get in touch with about anything.

Whilst all of this was happening, not a single friend or teacher knew why I was going to the hospital. I told them was going to the dermatologist. I didn't want jokes being made.

But know there was a reason for all the pain I was going through. A reason for the horrendous stomach cramps that made me stop in the street and double over. There was a reason I was losing weight.

I never knew that, from that day on, I would spend so much of my life talking about how ‘solid my stool’ is and how many times a day I am going to the toilet. And now, after a year of that, I think I could talk to anyone about pooing. I mean, I’m writing a blog about it and I’m not feeling the tiniest bit embarrassed.

If anything, I laugh about it now.

PEACE!

10 Things you can do whilst sat on the toilet.

Here is a list of things that you can do whilst your sat on the toilet. Because people with crohns spend a lot of their day sat on the loo and want to make it productive. HERE GOES!

1. Read a book.
2. Listen to music.
3. Complete a puzzle.
4. Do your homework.
5. Sleep.
6. Call your parents and tell them how great your life is because after you've been on the loo you're going to go do some work/ get drunk (if you're over 18 in the UK/21 in the USA)
7. Eat.
8. Scroll through Facebook/ Twitter.
9. Text your crush.
10. NOTHING!

And there you have it, a list of things you can do to make your time on the toilet more productive :) If you can think of any more....post them in the comments ;)

PEACE

Infliximab: Turns out I'm allergic to dead mouse

About a month after I was diagnosed, I was started on Infliximab, which is medicine that is in infused through a drip. I had to go to the hospital and sit in a chair for about three hours while this drug was put into my bloodstream. It started off every two weeks, then every four until eventually I should only have to go every six weeks. 

I quite enjoyed going to that department in the hospital, all the nurses where loverly and I enjoyed listening to their banter. They didn't take themselves very seriously, which was really nice because a hospital is quite a serious place.

I was usually surrounded by old people having blood transfusions and where very ill. But one day, I was sat next to this man, whose son was with him. He started talking to me and asking what I was there for and I told him everything about my crohns and he told me everything about his cancer. He even got his son to go and buy me a packet of quavers because I didn't like any of the food. I got home and both him and his son had added me on Facebook. Had I just made a friend at hospital?

Infliximab seemed to be working. I was having less stomach aches and I was eating better. Everything looked like it was going up.

On the day that I was due my third infusion, I decided I would go on my own. I was used to having needles prodded into my arm and all I did was sit there. I got dropped off and my grandma set a time that she would return. The gentleman that I had met on my second infusion was there with his wife and sat next to me. She told me that she had 'heard a lot about me.' I didn't realise I had such a big affect on them.

Whilst chatting to them both, I suddenly started to feel very hot and clammy and my chest felt tight, it was as if someone had put a pile of bricks on it. I called over the nurse. She immediatly stopped the drip. The gentlemen's wife held a sick bowl for me and held my hair whilst I was sick. I was taken over to a bed in the corner of the room and the curtains pulled round. The doctor was called. Adrenaline was being prepared. 

I had an anaphylactic shock. 

Apparently I am allergic to the dead mouse that is used.

Luckily I didn't have to have any adrenaline. Being sick seemed to do the job. But this lady that I had only just met stayed with me the entire time. And I am so thankful for that because it was so nice to have someone who wasn't a nurse or a doctor just to hold my hand. 

That was the end to Infliximab.

My Friend called Crohns

In order to make myself feel better about the whole 'crohns is with you for life', I like to think of it as a friend. At the minute, I don't see much of it (which I am thankful for) but it is always going to be there.

Its like when you was younger and you had that friend, that you realised was just a little too much and you wanted her to leave you alone. But she never would. Wherever you would go, she would be there.

Following you.

Crohns just wants some attention and instead of spending the majority of your life running away from it, you should just embrace it. Take it under your wing and say 'I can live with you, as long as you don't screw me over!' 

2010: The Start of the Fall

Looking back, 2010 was the year when everything start to go downhill.

My great grandma died (She was 102 years old).

My grandad died of cancer.

My parents told me they where separating.

This was quite a lot for a 16 year old to go through. I mean, on top of all that I had my GCSEs and was going to start sixth form. It was a stressful time and is not a year that I like to remember.

When my great grandma died, I was devastated. She was a woman that I thought would live forever, but deep down I knew what was coming and when I found out I was surprised. But that doesn't make it any easier.

When my granddad died, I was inconsolable. I was devastated. He was there for me throughout everything. He would come see me in shows and fall asleep, but he always woke up to watch me. He was a smoker, and ultimately that's what killed him. I had many arguments with him begging him to stop smoking but he never listened. 

The last thing I ever said to him was 'night, night. I love you' and kissed his forehead as he slept. I will never forget that day. Him grasping onto my hand so tightly when he realised I was there.

I wish I never let go. 

In my room at university, I have a lot of pictures of my friends and family. But I only have two pictures framed. Me and him.

My god, this is so hard to write!

I'm going to move onto something else.

A couple of month later, during the summer holidays, I was told that my mum and dad didn't love each other anymore. Instantly I thought it was my fault. I was a hormonal teenager; always causing stupid fights at home. 

Everything was falling apart in the space of six months.

That's when it started to hurt to go to the toilet. When I say hurt, I mean, 'felt like I was giving birth from my bum'. When it was at its worst, I would be in the bathroom for about an hour, crying. It was horrible. I would go to the toilet at college but I would never tell my friends where I was going because I new I could be a while and I didn't want any awkward questions.

It's AMAZING what stress can do to your body without you even knowing it!

Whats the Point?!

From the outside looking in, you would probably say my life is pretty perfect. It's not. I mean, is anyone's perfect? Everyone has things going on in their lives that they wish would just disappear. 
I live in London (the place I have dreamed of living since I was five). I'm studying the one thing I am passionate about (acting). I have a supportive family. I have a job which should allow me to stay in London after the three years. I have some amazing friends. And I have had so many opportunities.

But I have crohns.

About a year ago, I had so many dreams that I thought would never become a reality. I was going to hospital every single week and I knew there would be no chance I could do that alone.

Looking back on the hellish year that was 2012/13, I met some incredible people and learnt so many things about myself.

This blog is a kind of way for me to reflect on everything that happened and the journey that I went on. I'm not really writing this with the intention of getting a mass of views. It's for me. And if it helps others, with crohns or similar illnesses, realise that it doesn't have to rule your life. Well, that's great :)

PEACE!