Where it all began...
Hi my name is Nath and yes i am fortunate to have an illness called crohns disease which not many people know about and with many people that have this illness, they dont like to talk about it much due to what it can do, which i will get to later on.
First i would like to tell you a little bit of my story. When i was 16, i began to feel unwell such as extreme tiredness, weight loss, loss of blood through the anus, loss of appetite like i wouldnt eat much the whole day and the worst was belly pain. When all of this happened i kept this to myself as i was embarressed to say anything to anyone and struggled abit until one day i woke up with my bottom lip clustered with ulcers which made my bottom lip look huge which was hard to hide this. By this time, i couldnt stand my belly pain as i would curl up on the sofa which my parents called the NHS helpline to see if i needed to go to hospital, they said that i had a bug that would go after 5 days.
After those 5 days i was still suffering and went to see my gp who referred me to a Gastroenterologist who is my specialist right now, his name is Dr Shaw and he is the NHS clinical lead for gastroenterology and also holds a post for the national clinical lead for Inflammatory Bowel Disease (lets call it IBD for short). i can still remember waiting in the waiting room to see Dr Shaw at what used to be Berkeley Hospital and being called to see him and telling him all my symptoms and being told that i may have crohns disease, now when you first hear something that you have never heard before you sort of go into a state where everyone is taling but all you can hear is yourself asking the usual questions like am i going to be ill for the rest of my life or the other daughting question, the rest of that day all i did was kept quiet and thinking the same thing again and again.
Now after seeing Dr Shaw on that day i had to go to hospital to have a Colonoscopy procedure, which i can tell you the day before is way much worse than the actual day of the procedure as you have to fast for one day whilst drinking a medicine called Moviprep or Cleanprep, these two lovely delightful drinks literally clear your insides out, you think having diarreha is bad enough oh no this is like having a hurricane in your belly and having literally seconds to run to the toilet to poop loads whilst sometimes being sick, at the same time.
The colonoscopy procedure is daunting the first time because well you dont really want someone shoving a camera up your arse, but its one of those things that yo have to accept as it is the best way to find out how bad or good your intestines are. The camera is a thin long flexible device so it can navigate round your intestines whilst having this done you can watch it if you arent drowsy from the anaesthetic they give you, i can remember parts (its like watching a drain pipe survey just abit more bloody and green mucus everywhere).
With this all going on i just started college which i had to balance my study and managing my illness luckily college understood and sent me work to do at home, they were pretty awesome with me with all the specialist visits and all the sick days that came. Also friends and family were understanding of this and even though i didnt ask for them to either understand what i was going through or the change i had to make, they were there if i needed a hand or a timeout and they still are but some friends began to distance themselves from me such as saying i wouldnt have the time for them when i was ill, i can tell you that it is the hardest thing that your going through a hard time trying to fit the pieces in on why you and what this illness is let alone trying to explain to someone else what it is.
Anyway after having the colonscopy i was then diagnosed with Crohns Disease and was put on a course of pentasa and azathiaprine tablets along with some prednisolone steroid tablets to help me with my gain weight and also calci-chew tablets to help give my bones some strength due to taking the steroids. the azathiaprine tablets were to lower my immune system due to my crohns attacking my body, so basically having crohns is like having your body attack itself and this could range from the anus all the way to the mouth but there are side effects/symptoms that come along which i will explain in my future blogs.
So after awhile of taking these tablets i was ok, i was seeing my specialist for a while until one summer i had fell really unwell like my legs didnt want to move much and i stopped eating due the extreme pain i was experiencing which i was then admitted to hospital for a week and was put on an IV drip for the majority of my stay. Being in the hospital was weird as every time i had to go to the pooper i would have to record what it looked like and what colour it was and how many times i went a day, but when the doctor saw me in the ward they had explained that i was having a flare up of my illness, flares are like moments where my Crohns likes to remind you that its there and will never go away but you just got to remind yourself that YOUR the one in control of your illness.
So after leaving the hospital after a lovely stay and eating hospital mashed potatoes which i loved, i carried on with the normal routine of taking the tablets and carrying on with my college work. it wasnt till a year later that i had to go back to hospital but this time i was asked to take on a very new drug in the UK which was called Infliximab or Remicade, now i was 17 by the time i had this and not many people my age at the time was taking this drug to the unknown effects, so you could say i was trialed to see if people my age could use it, now your probably thinking why i was being trialed a new drug? basically i was "growing up" if you knew what i meant and the specialist didnt know what could happen with this knowing only i could say whether or not to test this drug. I did agree to it and was given loads of forms to fill out some were quite personal and some were just to normal rubbish you have to fill out then once that was done only a qualified nurse could proceed with giving me the Infliximab.
The infliximab is a sort of forced Intreveneous drip through a machine this was the only way because if it was in oral form the body would destroy it before any good came to it. Whilst this is being pushed through my body nurses would have to check on me every hour to make sure nothing wrong was happening, i think i was on the IV machine for a day and once that was done a further 3 days to make sure that nothing would happen to me. After this happened i was eating loads, i had got my hunger back and was raiding anything in the cupboards or fridge to eat. There are many side effects that could happen with infliximab also which i will talk about in a future blog.
In my first year of taking my infliximab, i burst my lung at my friends gathering this lead me to staying in hospital for a day in AAU and had to stay at home and do nothing for 4 weeks even waling for long periods of time or going up the stairs left me breathless while this was happening i had to leave college on my second year luckily i got a qualification before this happened.
the next step was to get a job, so you do the normal process of filling out an application form and put down what illnesses you have and all other details that i personally think should help you get a job but there you go. Then if i was lucky i would get an interview which i would always fail out due to the interviewer asking what Crohns is. So i signed on to job seekers which was embarressing but they did help me with interview techniques and put me through an agency of some sort where they help people with illnesses and disabilities to find a job, thats when i got a work experiance at the job where i work now. Now this work experiance was meant to last for 12 weeks but luckily a job came up in another department as a temporary staff which turned into a permanent role. Where i work in the past 5 years have been very understanding of me and my illness in ways of some days i could be bad and struggle at times, but i am very thankful for this.
3 years into my job i got diagnosed with gall bladder stones and had to have surgery to have my gall bladder out, at the age of 25 is very unusual to get this but as it turned out my Crohns was to blame as it spread to that area, when they took my gall bladder out they discovered that it was inflammed and had a 1cm stone stuck in there, now you think after having this procedure done i should watch out for my weight but in truth nothing has changed there so in ways my Crohns have its advantages.
So now its the present and my illness has been classed as in remission and im not taking any more infliximab infusions but my specialist wants me to have a CT scan to see if anything is wrong down there which has made me to think of if there is anything wrong shall i look down the route of having surgery which means that either i have a intestinal resection or have most of my intestines out and have a colostomy bag which will make an impact on my day to day life. I will keep you girls and guys informed in future blogs to come.
So thats my story so far with my illness, you probably noticed that i have really put my in my feelings towards my illness, the reason is that i really do struggle projecting how i feel with it but i will try soon.
If you are a fighter with this illness and feel that you are alone in your fight believe me you are not whether you just been diagnosed or been battling it for ages i am here for you IF you need some guidance or just want someone to grind your gears on please contact me only through here and i will personally give you my email address.
Thanks for spending the time on my first ever blog i promise you that i will get better at this and be more open with my illness, i just want people to know how it is with fighting against Crohns and show 'normal' people whether they are open or not that it is not just a pooping disease or a belly ache problem as some people are to jump to conclusions.
Peace
Nathan Portlock
First i would like to tell you a little bit of my story. When i was 16, i began to feel unwell such as extreme tiredness, weight loss, loss of blood through the anus, loss of appetite like i wouldnt eat much the whole day and the worst was belly pain. When all of this happened i kept this to myself as i was embarressed to say anything to anyone and struggled abit until one day i woke up with my bottom lip clustered with ulcers which made my bottom lip look huge which was hard to hide this. By this time, i couldnt stand my belly pain as i would curl up on the sofa which my parents called the NHS helpline to see if i needed to go to hospital, they said that i had a bug that would go after 5 days.
After those 5 days i was still suffering and went to see my gp who referred me to a Gastroenterologist who is my specialist right now, his name is Dr Shaw and he is the NHS clinical lead for gastroenterology and also holds a post for the national clinical lead for Inflammatory Bowel Disease (lets call it IBD for short). i can still remember waiting in the waiting room to see Dr Shaw at what used to be Berkeley Hospital and being called to see him and telling him all my symptoms and being told that i may have crohns disease, now when you first hear something that you have never heard before you sort of go into a state where everyone is taling but all you can hear is yourself asking the usual questions like am i going to be ill for the rest of my life or the other daughting question, the rest of that day all i did was kept quiet and thinking the same thing again and again.
Now after seeing Dr Shaw on that day i had to go to hospital to have a Colonoscopy procedure, which i can tell you the day before is way much worse than the actual day of the procedure as you have to fast for one day whilst drinking a medicine called Moviprep or Cleanprep, these two lovely delightful drinks literally clear your insides out, you think having diarreha is bad enough oh no this is like having a hurricane in your belly and having literally seconds to run to the toilet to poop loads whilst sometimes being sick, at the same time.
The colonoscopy procedure is daunting the first time because well you dont really want someone shoving a camera up your arse, but its one of those things that yo have to accept as it is the best way to find out how bad or good your intestines are. The camera is a thin long flexible device so it can navigate round your intestines whilst having this done you can watch it if you arent drowsy from the anaesthetic they give you, i can remember parts (its like watching a drain pipe survey just abit more bloody and green mucus everywhere).
With this all going on i just started college which i had to balance my study and managing my illness luckily college understood and sent me work to do at home, they were pretty awesome with me with all the specialist visits and all the sick days that came. Also friends and family were understanding of this and even though i didnt ask for them to either understand what i was going through or the change i had to make, they were there if i needed a hand or a timeout and they still are but some friends began to distance themselves from me such as saying i wouldnt have the time for them when i was ill, i can tell you that it is the hardest thing that your going through a hard time trying to fit the pieces in on why you and what this illness is let alone trying to explain to someone else what it is.
Anyway after having the colonscopy i was then diagnosed with Crohns Disease and was put on a course of pentasa and azathiaprine tablets along with some prednisolone steroid tablets to help me with my gain weight and also calci-chew tablets to help give my bones some strength due to taking the steroids. the azathiaprine tablets were to lower my immune system due to my crohns attacking my body, so basically having crohns is like having your body attack itself and this could range from the anus all the way to the mouth but there are side effects/symptoms that come along which i will explain in my future blogs.
So after awhile of taking these tablets i was ok, i was seeing my specialist for a while until one summer i had fell really unwell like my legs didnt want to move much and i stopped eating due the extreme pain i was experiencing which i was then admitted to hospital for a week and was put on an IV drip for the majority of my stay. Being in the hospital was weird as every time i had to go to the pooper i would have to record what it looked like and what colour it was and how many times i went a day, but when the doctor saw me in the ward they had explained that i was having a flare up of my illness, flares are like moments where my Crohns likes to remind you that its there and will never go away but you just got to remind yourself that YOUR the one in control of your illness.
So after leaving the hospital after a lovely stay and eating hospital mashed potatoes which i loved, i carried on with the normal routine of taking the tablets and carrying on with my college work. it wasnt till a year later that i had to go back to hospital but this time i was asked to take on a very new drug in the UK which was called Infliximab or Remicade, now i was 17 by the time i had this and not many people my age at the time was taking this drug to the unknown effects, so you could say i was trialed to see if people my age could use it, now your probably thinking why i was being trialed a new drug? basically i was "growing up" if you knew what i meant and the specialist didnt know what could happen with this knowing only i could say whether or not to test this drug. I did agree to it and was given loads of forms to fill out some were quite personal and some were just to normal rubbish you have to fill out then once that was done only a qualified nurse could proceed with giving me the Infliximab.
The infliximab is a sort of forced Intreveneous drip through a machine this was the only way because if it was in oral form the body would destroy it before any good came to it. Whilst this is being pushed through my body nurses would have to check on me every hour to make sure nothing wrong was happening, i think i was on the IV machine for a day and once that was done a further 3 days to make sure that nothing would happen to me. After this happened i was eating loads, i had got my hunger back and was raiding anything in the cupboards or fridge to eat. There are many side effects that could happen with infliximab also which i will talk about in a future blog.
In my first year of taking my infliximab, i burst my lung at my friends gathering this lead me to staying in hospital for a day in AAU and had to stay at home and do nothing for 4 weeks even waling for long periods of time or going up the stairs left me breathless while this was happening i had to leave college on my second year luckily i got a qualification before this happened.
the next step was to get a job, so you do the normal process of filling out an application form and put down what illnesses you have and all other details that i personally think should help you get a job but there you go. Then if i was lucky i would get an interview which i would always fail out due to the interviewer asking what Crohns is. So i signed on to job seekers which was embarressing but they did help me with interview techniques and put me through an agency of some sort where they help people with illnesses and disabilities to find a job, thats when i got a work experiance at the job where i work now. Now this work experiance was meant to last for 12 weeks but luckily a job came up in another department as a temporary staff which turned into a permanent role. Where i work in the past 5 years have been very understanding of me and my illness in ways of some days i could be bad and struggle at times, but i am very thankful for this.
3 years into my job i got diagnosed with gall bladder stones and had to have surgery to have my gall bladder out, at the age of 25 is very unusual to get this but as it turned out my Crohns was to blame as it spread to that area, when they took my gall bladder out they discovered that it was inflammed and had a 1cm stone stuck in there, now you think after having this procedure done i should watch out for my weight but in truth nothing has changed there so in ways my Crohns have its advantages.
So now its the present and my illness has been classed as in remission and im not taking any more infliximab infusions but my specialist wants me to have a CT scan to see if anything is wrong down there which has made me to think of if there is anything wrong shall i look down the route of having surgery which means that either i have a intestinal resection or have most of my intestines out and have a colostomy bag which will make an impact on my day to day life. I will keep you girls and guys informed in future blogs to come.
So thats my story so far with my illness, you probably noticed that i have really put my in my feelings towards my illness, the reason is that i really do struggle projecting how i feel with it but i will try soon.
If you are a fighter with this illness and feel that you are alone in your fight believe me you are not whether you just been diagnosed or been battling it for ages i am here for you IF you need some guidance or just want someone to grind your gears on please contact me only through here and i will personally give you my email address.
Thanks for spending the time on my first ever blog i promise you that i will get better at this and be more open with my illness, i just want people to know how it is with fighting against Crohns and show 'normal' people whether they are open or not that it is not just a pooping disease or a belly ache problem as some people are to jump to conclusions.
Peace
Nathan Portlock
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