new and 16 in 11 days, decided to tell my story to see if anyone had the same problem
i was diagnosed with crohns in september after 2 years of symtoms , was in hospital for 2 weeks after bad flare up, one flare up in august nearly ment i couldnt fly to america as it happened in the hotel near heathrow lol i had no idea what was wrong
i was so thankful after many doctors had said there was nothing wrong with me even though CRP was 54 i was screaming in pain and being sick, the childrens hospital believed me that i was ill and addmitted me, it took a while to find and had many many tests, i was loosing weight very fast i had an ng tube in
i was told i had it in the terminal illuem and was put on pred, they never saw in the terminal illeum as they couldnt get to it, i left hospital and had many check ups i was then put on azathioprine as a long term durg it was fine for a week but i got a bad infection and was took off, they put me back on aza a month later but it made me sick as anything flu symtoms within hours of taking it and vomiting they admitted for a week and abit thinking it was my crohns but was still on 20mg of pred, they said it was a bug i knew it was aza , they gave it me again i was sick in front of them but somehow it was a bug , but they took me off it as they thought it was making me get the bugs, so while i was in there they decided to tell me that my crohns should hardly cause me any pain it is so mild this was by a random consult i have never seen as mine was off i was always in so much pain how can this be while i was in hospital i missed my school trip to barcelona all paid for
ohh yeah and tryed to pin me with ANOREXIA OR ANY EATING DISORDER
saw a psychologist and they said no its not its disordered eating a completely different thing so releved and she helped me about my dad and nan, NG tube feeds all day and night, so i went home and came off my steriods and was left with no meds and then had ng tube out, this takes me up to the middle of nov i felt so ill over nov and december had an appointtment and told them had bloos RP wasnt high,
had my dads wedding on the 31st of december luckely made it though that but was feeling ill , the next day so new year i was took in to hospital as i had major flare up , CRP wasnt high why so i spent another week on my usual ward 7 NG tube back in lost weight alot! i had a video capsual test as they have never had a look inside proberly, i left after a week an a few days by me begging hehe still no meds just feeds, however i got a call back they were shocked when they found it in the jejuem , terminal illeum and distanal illeum there was alot of inflimation ulcers that were bleeding and puss coming from them , they said it was bad they were considering surgry but as an important year at school and how treament has come along they put me on encort which has done nothing,and aza however same again made me so sick but they made me take it 3 times and made me sick to prove i was allergic, now its in my notes intolerent to aza so glad!!!!!
so back to hospital so now its remicade infusions i had my first on the 7th of march and next 21st of march , hasnt really worked so far hoping it will on the next one NG tube in since new year hoping for that out on the 21st for my birthday on the 24th , come to think of it i have only had a months break from the NG since september part of me now i call it timmy tube
i only really used to eat a pack of crisps or two at a push or abit of mash!!! eating has got better now, i havent really come to terms with the fact i have crohns i dont get upset ever, i dont think of myself as ill , i more think about my dad and nan because while i was being diagnosed my dad got told he had CML and my nan had motor neurone disease. all in all i dont cry but people think i should after all thats happened to me but i dont feel the need there are worse things , but its just fustrating, hoping remicade works so thats my story , and has it worked for anyone else and has encort not worked for anyone while waiting for remicade? xxx
----------------
meds used:
pred- worked so good
aza- allergic
On:
encort- not working
remicade: not fully working yet praying it does
NG tube: all day and night
"dont take life so seriously you will never escape it alive anyway"
i was diagnosed with crohns in september after 2 years of symtoms , was in hospital for 2 weeks after bad flare up, one flare up in august nearly ment i couldnt fly to america as it happened in the hotel near heathrow lol i had no idea what was wrong
i was so thankful after many doctors had said there was nothing wrong with me even though CRP was 54 i was screaming in pain and being sick, the childrens hospital believed me that i was ill and addmitted me, it took a while to find and had many many tests, i was loosing weight very fast i had an ng tube in
i was told i had it in the terminal illuem and was put on pred, they never saw in the terminal illeum as they couldnt get to it, i left hospital and had many check ups i was then put on azathioprine as a long term durg it was fine for a week but i got a bad infection and was took off, they put me back on aza a month later but it made me sick as anything flu symtoms within hours of taking it and vomiting they admitted for a week and abit thinking it was my crohns but was still on 20mg of pred, they said it was a bug i knew it was aza , they gave it me again i was sick in front of them but somehow it was a bug , but they took me off it as they thought it was making me get the bugs, so while i was in there they decided to tell me that my crohns should hardly cause me any pain it is so mild this was by a random consult i have never seen as mine was off i was always in so much pain how can this be while i was in hospital i missed my school trip to barcelona all paid for
ohh yeah and tryed to pin me with ANOREXIA OR ANY EATING DISORDER
saw a psychologist and they said no its not its disordered eating a completely different thing so releved and she helped me about my dad and nan, NG tube feeds all day and night, so i went home and came off my steriods and was left with no meds and then had ng tube out, this takes me up to the middle of nov i felt so ill over nov and december had an appointtment and told them had bloos RP wasnt high,
had my dads wedding on the 31st of december luckely made it though that but was feeling ill , the next day so new year i was took in to hospital as i had major flare up , CRP wasnt high why
so i spent another week on my usual ward 7 NG tube back in lost weight alot! i had a video capsual test as they have never had a look inside proberly, i left after a week an a few days by me begging hehe still no meds just feeds, however i got a call back they were shocked when they found it in the jejuem , terminal illeum and distanal illeum there was alot of inflimation ulcers that were bleeding and puss coming from them , they said it was bad they were considering surgry but as an important year at school and how treament has come along they put me on encort which has done nothing,and aza however same again made me so sick but they made me take it 3 times and made me sick to prove i was allergic, now its in my notes intolerent to aza so glad!!!!! so back to hospital so now its remicade infusions i had my first on the 7th of march and next 21st of march , hasnt really worked so far hoping it will on the next one
NG tube in since new year hoping for that out on the 21st for my birthday on the 24th , come to think of it i have only had a months break from the NG since september part of me now i call it timmy tube i only really used to eat a pack of crisps or two at a push or abit of mash!!! eating has got better now, i havent really come to terms with the fact i have crohns i dont get upset ever, i dont think of myself as ill , i more think about my dad and nan because while i was being diagnosed my dad got told he had CML and my nan had motor neurone disease. all in all i dont cry but people think i should after all thats happened to me but i dont feel the need there are worse things , but its just fustrating, hoping remicade works so thats my story , and has it worked for anyone else and has encort not worked for anyone while waiting for remicade? xxx
----------------
meds used:
pred- worked so good
aza- allergic
On:
encort- not working
remicade: not fully working yet praying it does
NG tube: all day and night
"dont take life so seriously you will never escape it alive anyway"
Last edited by a moderator:
