The Year That Changed Me
So this is the story about how I got diagnosed with Crohn's Disease. Because it wasn't as straight forward as you'd hope a diagnosis would be. Thousands of people every year get told they have some form of IBD, and it's becoming increasingly common for the average age to be early teens, although when I was diagnosed, this was still relatively uncommon. More so, as a teenage girl, I feel that potentially I wasn't taken as seriously as I should have been.
So when I was 11 years old, I started to lose weight. Drastically. I went down to a size 2 (which doesn't really exist, I'd kind of have to find the very rare size 4 clothing and a belt). Weight loss of this extreme comes with all manor of side effects, things like your hair falling out, your skin turning grey, obvious fatigue, lack of concentration, issues with how you view yourself and your body, and one of the ones I personally found the worst - not being able to sit down without bruising my spine because it dug into things.
My parents were obviously at a loss, I was refusing to eat because it hurt. I'm not talking stomach ache, I'm talking 10/10 pain, where you don't want to even open your eyes because you'll probably scream and won't be able to stop. I was also going to the toilet 25+ times a day, where I'd be physically doubled over crying and unable to move because of the pain. Being 11 years old and starting secondary school, I was self conscious anyway, but this definitely didn't help things. So I hid my toilet habits from my family. I was too embarrassed, and too scared to tell anyone. So I suffered. Like many teenage girls do. And that was so dangerous. There's absolutely nothing wrong with talking about poo, it's completely normal. What is wrong is not being able to talk about it to the extent that your health suffers and you almost end up in an early grave. Anyone that knows me now knows that I make an actual point to talk about poo and bodily functions, because they're normal and if you don't want to deal with that then I probably don't want to deal with you. Sorry.
So anyway, I'm 11 years old, I'm 4 stone at 5"1 odd, I'm feeling like literal death, I'm being bullied at school, I'm scared to look in the toilet, and my body feels like it's rejecting me. My Mom drags me to the GP. He takes a quick look at me, at my weight, my age, sees I'm struggling to fit in at school, hears that I refuse to eat. Anorexia. Bulimia. No further questions. And what's possibly more scary, no treatment.
"She has to eat".
No shit.
So that was that. My parents basically force fed me. I remember crying on the sofa one night really clearly because they'd put a bowl of tomato soup in front of me, and I tried to eat it. I really really tried. But I couldn't. The pain was beyond unbearable. Understandably they lost their tempers with me, because it must have been unbelievably frustrating to watch with no understanding of what was actually going on inside of me. They told me to get up to my bedroom, but I physically couldn't move, so I just sat and cried whilst they shouted.
And I think that's one of the worst memories I have. Because I remember feeling so utterly helpless and scared.
It went on like that for a while. I have a really vivid memory of being at my grandparents and actually really fancying some of the food they'd put out as a buffet but not having the physical ability to get up and fetch it for myself, so just sitting there instead. Then I remember later that night breaking down and crying to my Mom that I was terrified. Because I thought I was going to die. Because nobody believed me, which meant that nobody was going to help me get better. She told me she believed me. I didn't believe her though, I felt too entirely hopeless to even try.
Luckily she did believe me. They both pushed and pushed for me to be seen by Drs. Eventually, some bloods were taken to check my CRP levels, which is short for C-Reactive Protein. This is a really standard blood test that is used to check your inflammatory markers. Low is good, high is bad. There's many reasons why they can be high, but it's a good starting point for disease. CRP is a substance produced in your liver in response to inflammation. When a test is done, the results will be measured in milligrams per litre of blood. Normal results will be less than 3.0 mg/dl, with most healthy people not showing as even having any. My results came back at around 78.0 mg/dl. To give more of an indication of what that actually means, chances are you'd be dead before 200.
After this, I got referred to Birmingham Children's Hospital where I met my new consultant, Mr Murphy. Mostly what I remember about him was that he had big eyebrows. He arranged some tests. Because of my age and the pain I was experiencing, they put me to sleep for an endoscopy. (Unfortunately you're only this lucky for a few years...) If you don't know what one of these is, it's a lovely and dignified test where they effectively shove a long tube with a camera attached to it up your ass and take some photos. As I'd find out a few years later, they love to talk to you during this.
When I woke back up my parents were taken into a separate room to be told my diagnosis before me, so that they could choose to either tell me, or at least be with me when the doctors told me. None of us had any idea what Crohn's Disease was, but we all felt a strange relief that I finally knew what was wrong with my body.
And that's basically where my story starts.
Love and shit x
So when I was 11 years old, I started to lose weight. Drastically. I went down to a size 2 (which doesn't really exist, I'd kind of have to find the very rare size 4 clothing and a belt). Weight loss of this extreme comes with all manor of side effects, things like your hair falling out, your skin turning grey, obvious fatigue, lack of concentration, issues with how you view yourself and your body, and one of the ones I personally found the worst - not being able to sit down without bruising my spine because it dug into things.
My parents were obviously at a loss, I was refusing to eat because it hurt. I'm not talking stomach ache, I'm talking 10/10 pain, where you don't want to even open your eyes because you'll probably scream and won't be able to stop. I was also going to the toilet 25+ times a day, where I'd be physically doubled over crying and unable to move because of the pain. Being 11 years old and starting secondary school, I was self conscious anyway, but this definitely didn't help things. So I hid my toilet habits from my family. I was too embarrassed, and too scared to tell anyone. So I suffered. Like many teenage girls do. And that was so dangerous. There's absolutely nothing wrong with talking about poo, it's completely normal. What is wrong is not being able to talk about it to the extent that your health suffers and you almost end up in an early grave. Anyone that knows me now knows that I make an actual point to talk about poo and bodily functions, because they're normal and if you don't want to deal with that then I probably don't want to deal with you. Sorry.
So anyway, I'm 11 years old, I'm 4 stone at 5"1 odd, I'm feeling like literal death, I'm being bullied at school, I'm scared to look in the toilet, and my body feels like it's rejecting me. My Mom drags me to the GP. He takes a quick look at me, at my weight, my age, sees I'm struggling to fit in at school, hears that I refuse to eat. Anorexia. Bulimia. No further questions. And what's possibly more scary, no treatment.
"She has to eat".
So that was that. My parents basically force fed me. I remember crying on the sofa one night really clearly because they'd put a bowl of tomato soup in front of me, and I tried to eat it. I really really tried. But I couldn't. The pain was beyond unbearable. Understandably they lost their tempers with me, because it must have been unbelievably frustrating to watch with no understanding of what was actually going on inside of me. They told me to get up to my bedroom, but I physically couldn't move, so I just sat and cried whilst they shouted.
And I think that's one of the worst memories I have. Because I remember feeling so utterly helpless and scared.
It went on like that for a while. I have a really vivid memory of being at my grandparents and actually really fancying some of the food they'd put out as a buffet but not having the physical ability to get up and fetch it for myself, so just sitting there instead. Then I remember later that night breaking down and crying to my Mom that I was terrified. Because I thought I was going to die. Because nobody believed me, which meant that nobody was going to help me get better. She told me she believed me. I didn't believe her though, I felt too entirely hopeless to even try.
Luckily she did believe me. They both pushed and pushed for me to be seen by Drs. Eventually, some bloods were taken to check my CRP levels, which is short for C-Reactive Protein. This is a really standard blood test that is used to check your inflammatory markers. Low is good, high is bad. There's many reasons why they can be high, but it's a good starting point for disease. CRP is a substance produced in your liver in response to inflammation. When a test is done, the results will be measured in milligrams per litre of blood. Normal results will be less than 3.0 mg/dl, with most healthy people not showing as even having any. My results came back at around 78.0 mg/dl. To give more of an indication of what that actually means, chances are you'd be dead before 200.
After this, I got referred to Birmingham Children's Hospital where I met my new consultant, Mr Murphy. Mostly what I remember about him was that he had big eyebrows. He arranged some tests. Because of my age and the pain I was experiencing, they put me to sleep for an endoscopy. (Unfortunately you're only this lucky for a few years...) If you don't know what one of these is, it's a lovely and dignified test where they effectively shove a long tube with a camera attached to it up your ass and take some photos. As I'd find out a few years later, they love to talk to you during this.
When I woke back up my parents were taken into a separate room to be told my diagnosis before me, so that they could choose to either tell me, or at least be with me when the doctors told me. None of us had any idea what Crohn's Disease was, but we all felt a strange relief that I finally knew what was wrong with my body.
And that's basically where my story starts.
Love and shit x
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