So my Crohns started around 9 years ago. I was in Year 8 of High School. Used to wake up and frequently go to the toilet 6-7 times ( liquid) before leaving the house. Used to feel generally unwell until around lunchtime every single day. Didn't tell my parents or anyone about it. The school bus journey used to be a real tough ask. Noise, a lot of people, misbehaviour, all the sort of stuff you don't want when your feeling unwell. So around the February time of 2004 i started getting some symptoms with my bowel habits. My hair became very thin, my nails started to crumble, i was very very pale and i had lost a lot of weight within a year. To show a before and after picture would be scary. To attend the Aston Villa matches, which was and still is my main hobby in life was really tough. So i got sent to have a blood test by my GP. I went up the hospital to have my blood test and that same afternoon whilst i was at school my parents had a call to get me to the GP asap. So i came in from school, was whisked off to the GP without having any tea or a drink and feeling quite scared at what was going on. My GP was a young fella and he had the blood results in front of him and told us that the local Hospital had a bed waiting for me on the Childrens section and he personally felt it could be Leaukemia. Now i knew what that was, despite being young and you could imagine how scared i was. So we went up to the hospital where this bed was waiting for me. As it was night was just admitted onto the ward, my parents sent away and that was it til the morning. Knew nothing at all and as you can imagine it was very distressing for a young teenager.
The following morning a top paediatrician, specialising in Asthma came and saw me. He was shocked at what my GP had said about Leaukemia and he said he suspected either Ulcerative Colitis or Crohns disease which i hadn't heard of at the time. I was put on Iron because i was anaemic and 2 weeks later had a Colonoscopy at the Birmingham Childrens Hospital. The consultant straight away diagnosed Crohns Disease following this and recommended they built my weight up first. So they put me on a Fortisip/Fortijuice diet. This contained 8 nutrient drinks a day and nothing else but this taste was really unbearable and i couldn't hack it. So they fed me for 8 weeks through a NG tube which is quite an experience in itself. I totally lost all confidence to do anything, even go out and i was off school from Easter through til the following September. So this NG tube feed diet helped me put on about a stone, hardly seemed worth it as when they pulled it out, my symptoms quickly returned and some weight fell off again. They then tried to put me on a very high fat diet. Told me to smother everything in butter etc. Dream to me if they said that now
but that didn't work and i remember all of a sudden i had no urge to eat anything. Like it was physically impossible to eat anything. So i was taken back into hospital, they suspected a blockage and i was put on IV Pottassium etc because i wasn't eating at all. At the time also i had a badly infected toe which had to be sorted out with IV anti biopics but they never did find out the cause of that not able to eat stage. So it came to the point where my local hospital was scratching their heads at what to do with my Crohns, so i was in my local hospital for a month awaiting a bed back at the Birmingham Childrens.
I finally got my bed and the lady who performed the colonoscopy became my consultant. At this point i was on Steroids to help control it and to build my weight up again and it worked to some extent. I remember having a week full of different people coming to see me. Surgeons, Stoma Bag experts- you name it. It was a lot to take in for a young kid but they did decide to halt the surgery and try this one last drug they though may have some success. This was Azathioprine. So they put me on 200mg of Azathioprine aswell as keeping me on the Prednisolone and the Pentasa sachets. I was discharged from there on my birthday on 1 August 2004. I had a district nurse come to see me during the first few months and after about 3 months the Azathioprine started to work and i was taken off the Prednisolone. Had some issues with the Pentasa but changed the type of Pentasa and was ok again. My weight built up, my hair grew, the horrible scabs on my scalp disappeared, my nails went healthy again and i had a colour in my face again. At the start of this treatment my Platelet count, which they can monitor inflammation from was at 1,400. A healthy person's platelet count is between 200-300. Azathioprine really has worked, they even dropped my dosage from 200mg to 150mg and this is how it remains now. I was also on some blood thinning tablets but they were stopped quite quickly after too.
After a few years i was finally discharged from the Birmingham Childrens and for about 4 years the care has gone over to a Gastro consultant at my local hospital. He is very good but have had no problems at all since. I go to see him once every 6 months and have a blood test done every 3 months to monitor. I get my off days, often if i overeat or something upsets me and have had my first little flare up lately but seems to be wearing off again. 8 years ago seems a very long time ago, i'm not sure i can explain to you how low i was back then. It really hit my confidence more than you can imagine and kids aren't very forgiving then. Whilst i was off school at the start i had only one friend come and visit me. Others spread vicious rumours about me around the school and when i finally returned to school a month after i was discharged from hospital, i got some great support from some teachers in particular but found myself having to find a whole new friendship group, which in Year 9 is tough. Its not nice going through that once, but twice is tough. But these friends stuck with me and most are still around me today. I went through the denial stage at first. People asked me why i was away for so long and i said '' it was my asthma playing up'' but as I got older you feel more at ease to explain Crohns and what it really is and how it affects you, people don't understand the severity of it at first.
So i got through school, with around a 97% attendance rate which was quite good in the end, achieved my GCSE's, went on to do A Levels and got 3 good grade A Levels which i was pleased about.
And now here I am, i'm 19 ( 20 in August). I'm a second year Student Nurse at the University of Wolverhampton. I have a brilliant family with 2 little nieces and nephews and also living with my boyfriend of nearly 2 years who is incredibly supportive of me. He built my confidence back up despite it being 6 years on ( yeh thats how long it knocked my confidence for) and life is good right now. In decent health too and halfway through training for a career which helped me so much and inspired me to do it. I'm so sorry if this has bored anyone, i know its an essay but I hope it can help some of you guys. I know how your confidence can be easily knocked but don't think you won't come out of it because you will. I never though i'd find love, i thought wow Crohns is too hard a disease to discuss to anyone i like, dates etc will be too hard to get through and it was tough but if the person you are embarking on a relationship with is as supportive as mine has been and is, you'll be blessed.
Crohns is such a debilitating disease and has so many factors involved but you can easily lead a good and healthy life with the people you love around you. Keep your chin up and the light at the end of the tunnel will come, that's what i always say.
Thanks,
Simon.
The following morning a top paediatrician, specialising in Asthma came and saw me. He was shocked at what my GP had said about Leaukemia and he said he suspected either Ulcerative Colitis or Crohns disease which i hadn't heard of at the time. I was put on Iron because i was anaemic and 2 weeks later had a Colonoscopy at the Birmingham Childrens Hospital. The consultant straight away diagnosed Crohns Disease following this and recommended they built my weight up first. So they put me on a Fortisip/Fortijuice diet. This contained 8 nutrient drinks a day and nothing else but this taste was really unbearable and i couldn't hack it. So they fed me for 8 weeks through a NG tube which is quite an experience in itself. I totally lost all confidence to do anything, even go out and i was off school from Easter through til the following September. So this NG tube feed diet helped me put on about a stone, hardly seemed worth it as when they pulled it out, my symptoms quickly returned and some weight fell off again. They then tried to put me on a very high fat diet. Told me to smother everything in butter etc. Dream to me if they said that now
but that didn't work and i remember all of a sudden i had no urge to eat anything. Like it was physically impossible to eat anything. So i was taken back into hospital, they suspected a blockage and i was put on IV Pottassium etc because i wasn't eating at all. At the time also i had a badly infected toe which had to be sorted out with IV anti biopics but they never did find out the cause of that not able to eat stage. So it came to the point where my local hospital was scratching their heads at what to do with my Crohns, so i was in my local hospital for a month awaiting a bed back at the Birmingham Childrens. I finally got my bed and the lady who performed the colonoscopy became my consultant. At this point i was on Steroids to help control it and to build my weight up again and it worked to some extent. I remember having a week full of different people coming to see me. Surgeons, Stoma Bag experts- you name it. It was a lot to take in for a young kid but they did decide to halt the surgery and try this one last drug they though may have some success. This was Azathioprine. So they put me on 200mg of Azathioprine aswell as keeping me on the Prednisolone and the Pentasa sachets. I was discharged from there on my birthday on 1 August 2004. I had a district nurse come to see me during the first few months and after about 3 months the Azathioprine started to work and i was taken off the Prednisolone. Had some issues with the Pentasa but changed the type of Pentasa and was ok again. My weight built up, my hair grew, the horrible scabs on my scalp disappeared, my nails went healthy again and i had a colour in my face again. At the start of this treatment my Platelet count, which they can monitor inflammation from was at 1,400. A healthy person's platelet count is between 200-300. Azathioprine really has worked, they even dropped my dosage from 200mg to 150mg and this is how it remains now. I was also on some blood thinning tablets but they were stopped quite quickly after too.
After a few years i was finally discharged from the Birmingham Childrens and for about 4 years the care has gone over to a Gastro consultant at my local hospital. He is very good but have had no problems at all since. I go to see him once every 6 months and have a blood test done every 3 months to monitor. I get my off days, often if i overeat or something upsets me and have had my first little flare up lately but seems to be wearing off again. 8 years ago seems a very long time ago, i'm not sure i can explain to you how low i was back then. It really hit my confidence more than you can imagine and kids aren't very forgiving then. Whilst i was off school at the start i had only one friend come and visit me. Others spread vicious rumours about me around the school and when i finally returned to school a month after i was discharged from hospital, i got some great support from some teachers in particular but found myself having to find a whole new friendship group, which in Year 9 is tough. Its not nice going through that once, but twice is tough. But these friends stuck with me and most are still around me today. I went through the denial stage at first. People asked me why i was away for so long and i said '' it was my asthma playing up'' but as I got older you feel more at ease to explain Crohns and what it really is and how it affects you, people don't understand the severity of it at first.
So i got through school, with around a 97% attendance rate which was quite good in the end, achieved my GCSE's, went on to do A Levels and got 3 good grade A Levels which i was pleased about.
And now here I am, i'm 19 ( 20 in August). I'm a second year Student Nurse at the University of Wolverhampton. I have a brilliant family with 2 little nieces and nephews and also living with my boyfriend of nearly 2 years who is incredibly supportive of me. He built my confidence back up despite it being 6 years on ( yeh thats how long it knocked my confidence for) and life is good right now. In decent health too and halfway through training for a career which helped me so much and inspired me to do it. I'm so sorry if this has bored anyone, i know its an essay but I hope it can help some of you guys. I know how your confidence can be easily knocked but don't think you won't come out of it because you will. I never though i'd find love, i thought wow Crohns is too hard a disease to discuss to anyone i like, dates etc will be too hard to get through and it was tough but if the person you are embarking on a relationship with is as supportive as mine has been and is, you'll be blessed.
Crohns is such a debilitating disease and has so many factors involved but you can easily lead a good and healthy life with the people you love around you. Keep your chin up and the light at the end of the tunnel will come, that's what i always say.
Thanks,
Simon.
