Hey everyone I have being looking at this forum for a while now and finally decided to make an account
I Was diagnosed two years ago now but have been Unwell for about 3 years . It took a whole year to get someone to believe me I was ill my doctor basically said I was a liar and my family were doubtfully too (even though my sister has crohns disease , But finally my doctor referred me to the hospital where I underwent test's and nothing showed up So they send me to another hospital in another city where I got a barium-meal and not much showed up And got a colonoscopy and endoscopy (which i got put to sleep for as I was young ) when I woke up from it I had an N.G tube and they said I had lots of disease and no wonder I was ill , I was put on a N.g feed (modulen) and steroids and then discharged . I really didn't like the N.G tube so I said I would drink the modulen instead they removed the tube and I went home . Back at home I was really struggling to drink it as I had not appetite and I had lost a lot of weight already. So they had to put the N.G tube back down and I had it for 6 weeks (during that time it came up twice and I have to put it back down )
Skip to a few months later and I was feeling really well however that only lasted 2 moths so I had my N.G tube back down and was on modulen for another six weeks (During that year i had 6 N.G tubes down and ending up putting 2 down myself ) The modulen that time never worked so the next few months I was on .. azathioprine , Prednisolone , You name it i was on it
For that year I was off and on just about every crohns medication there is . Since nothing was working I had lots more test's - MRI 's , barium-meal's scans , blood test everything . Then i had another colonoscopy and endoscopy which I was awake for and never even found it bad ) My doctor said I was " riddled with disease" and scarring . So I was put on Infliximab and had 3 infusions which never worked and I actually took and allergic reaction to it.
A few weeks later The doctors said My only option was surgery as my scarring was so severe and my Intestine was getting narrower . I was sent home to think about it but only four days after I was rushed in with a blockage ! ( It was the worst pain in my life ! I was vomiting so much I couldn't even walk . I had to have Emergency surgery a day after . When I woke up from my surgery I was so weak and in so much pain ! I couldn't even cough without being in pain . While in hospital after my surgery I got an infection which made me Feel very ill .( oh I got 1 and half meters of my intestine out as well as my appendix)
Anyway 2 months after my surgery I was still unwell because the doctor said there was to much disease to cut out so I was put on humira, a week after I was due to go on holiday the doctors said the didn't recommend it but I went anyway (holiday was rubbish as I was to ill to leave the hotel most days )
A few months on and here we are I'm very unwell just now and I'm still getting humira ( every week now) I haven't been able to go to school for six months now and i don't leave my house i only leave if I have to go to the doctors. The main reason I don't leave is because I have a fear of going to public toilets and won't go if anyone can hear me . The doctors are struggling as what to do next as I have now been on every crohns disease medication . They want to put me forward for a stem cell transplant as I meet all the criteria except the age - you have to be 18 to be considered for it but I'm only 16. My doctors are trying to build up as case to let them consider me despite my age . As right now I have basically no life I can't go to school and don't see my friends . My friends always want to come over to see me but I always say no as I have this constant fear of going to the toilet if they are hear. So right now Me and my family are basically in limbo :/
haha Sorry for the huge story
Thanks for reading x
I Was diagnosed two years ago now but have been Unwell for about 3 years . It took a whole year to get someone to believe me I was ill my doctor basically said I was a liar and my family were doubtfully too (even though my sister has crohns disease , But finally my doctor referred me to the hospital where I underwent test's and nothing showed up So they send me to another hospital in another city where I got a barium-meal and not much showed up And got a colonoscopy and endoscopy (which i got put to sleep for as I was young ) when I woke up from it I had an N.G tube and they said I had lots of disease and no wonder I was ill , I was put on a N.g feed (modulen) and steroids and then discharged . I really didn't like the N.G tube so I said I would drink the modulen instead they removed the tube and I went home . Back at home I was really struggling to drink it as I had not appetite and I had lost a lot of weight already. So they had to put the N.G tube back down and I had it for 6 weeks (during that time it came up twice and I have to put it back down )
Skip to a few months later and I was feeling really well however that only lasted 2 moths so I had my N.G tube back down and was on modulen for another six weeks (During that year i had 6 N.G tubes down and ending up putting 2 down myself ) The modulen that time never worked so the next few months I was on .. azathioprine , Prednisolone , You name it i was on it
For that year I was off and on just about every crohns medication there is . Since nothing was working I had lots more test's - MRI 's , barium-meal's scans , blood test everything . Then i had another colonoscopy and endoscopy which I was awake for and never even found it bad ) My doctor said I was " riddled with disease" and scarring . So I was put on Infliximab and had 3 infusions which never worked and I actually took and allergic reaction to it.
A few weeks later The doctors said My only option was surgery as my scarring was so severe and my Intestine was getting narrower . I was sent home to think about it but only four days after I was rushed in with a blockage ! ( It was the worst pain in my life ! I was vomiting so much I couldn't even walk . I had to have Emergency surgery a day after . When I woke up from my surgery I was so weak and in so much pain ! I couldn't even cough without being in pain . While in hospital after my surgery I got an infection which made me Feel very ill .( oh I got 1 and half meters of my intestine out as well as my appendix)
Anyway 2 months after my surgery I was still unwell because the doctor said there was to much disease to cut out so I was put on humira, a week after I was due to go on holiday the doctors said the didn't recommend it but I went anyway (holiday was rubbish as I was to ill to leave the hotel most days )
A few months on and here we are I'm very unwell just now and I'm still getting humira ( every week now) I haven't been able to go to school for six months now and i don't leave my house i only leave if I have to go to the doctors. The main reason I don't leave is because I have a fear of going to public toilets and won't go if anyone can hear me . The doctors are struggling as what to do next as I have now been on every crohns disease medication . They want to put me forward for a stem cell transplant as I meet all the criteria except the age - you have to be 18 to be considered for it but I'm only 16. My doctors are trying to build up as case to let them consider me despite my age . As right now I have basically no life I can't go to school and don't see my friends . My friends always want to come over to see me but I always say no as I have this constant fear of going to the toilet if they are hear. So right now Me and my family are basically in limbo :/
haha Sorry for the huge story
Thanks for reading
x
