another newbie.... Severe crohns suffer
Hiya everybody,
ive joined forums before, but never thought id be joining one to discuss a lifelong disease, glad ive found it though, as its given me alot of info to consider.
Im on here looking for peoples opinions of whats going on with myself at the moment, as i was only diagnosed 5 weeks ago, im still a bit green.
a bit of history i guess.....
I was diagnosed with IBS at 15, never had any tests for anything else at this point. im 23 now and a year ago i went to my gp with a change, having diaherea 6 times a day, over the year lost 3 stone and went to toilet 30 times a day in agony.
i got a colonoscopy 5 weeks ago and this confirmed i had Crohns Colitis, an MRI 3 weeks later also confirmed i had crohns in my ilieum, stomach, throat and yip, mouth. lol.
I was put on presdisolone 5 weeks ago at 40mg a day, to be reduced by 5mg a week. I've seen absolutely no improvement on these at all, told my doctors this and they checked my bloods, and yip absolutely no improvement on the inflamation either. im on 1 tablet of omeprazole a day too.
The GI specialist said that because im not responding to the steroids and i have and i quote " an aggressive, severe form of crohns", its all getting worse pretty quick, ive to start infliximab tomorrow, which im crapping myself about to be honest and they've put me on PENTASA 2g a day.
I went to see the GI nurse yesterday as ive now got a really bad UTI, which i get all the time, but this time its worse and im in absolute agony. They now think ive got a fistula from my small bowel to my bladder, as my small bowel is resting right on it.
Its all a bit much really, I seem to have every side effect from every drug they've put me on. ive got moon face, acne, water retention, weight gain, hair growth, tiredness, lack of appetite,swollen tummy and insomnia.
Just wanted to ask what everyone thinks of what they've put me on, i know everyone is different etc. The nurse told me yesterday that if the infliximab doesn't get it under control then the surgeons gonna become my new best friend. which really scares me.
so now im currently on 20mg prednisolone, 20mg omeprazole,2g pentasa, antibiotics and about to start infliximab every 2 weeks
any feedback of anykind, much appreciated
Hiya everybody,
ive joined forums before, but never thought id be joining one to discuss a lifelong disease, glad ive found it though, as its given me alot of info to consider.
Im on here looking for peoples opinions of whats going on with myself at the moment, as i was only diagnosed 5 weeks ago, im still a bit green.
a bit of history i guess.....
I was diagnosed with IBS at 15, never had any tests for anything else at this point. im 23 now and a year ago i went to my gp with a change, having diaherea 6 times a day, over the year lost 3 stone and went to toilet 30 times a day in agony.
i got a colonoscopy 5 weeks ago and this confirmed i had Crohns Colitis, an MRI 3 weeks later also confirmed i had crohns in my ilieum, stomach, throat and yip, mouth. lol.
I was put on presdisolone 5 weeks ago at 40mg a day, to be reduced by 5mg a week. I've seen absolutely no improvement on these at all, told my doctors this and they checked my bloods, and yip absolutely no improvement on the inflamation either. im on 1 tablet of omeprazole a day too.
The GI specialist said that because im not responding to the steroids and i have and i quote " an aggressive, severe form of crohns", its all getting worse pretty quick, ive to start infliximab tomorrow, which im crapping myself about to be honest and they've put me on PENTASA 2g a day.
I went to see the GI nurse yesterday as ive now got a really bad UTI, which i get all the time, but this time its worse and im in absolute agony. They now think ive got a fistula from my small bowel to my bladder, as my small bowel is resting right on it.
Its all a bit much really, I seem to have every side effect from every drug they've put me on. ive got moon face, acne, water retention, weight gain, hair growth, tiredness, lack of appetite,swollen tummy and insomnia.
Just wanted to ask what everyone thinks of what they've put me on, i know everyone is different etc. The nurse told me yesterday that if the infliximab doesn't get it under control then the surgeons gonna become my new best friend. which really scares me.
so now im currently on 20mg prednisolone, 20mg omeprazole,2g pentasa, antibiotics and about to start infliximab every 2 weeks
any feedback of anykind, much appreciated