Hello everyone
Im a 24 year old male and was recently finally diagnosed with Crohn's disease, after the disease starting showing symptoms at about age 15-16 possibly earlier hard to remember. Originally it was just occasional diarrhoea but every now and then I would get horrendous stabbing pain in my gut for about 10 hours with vomiting and diarrhoea until the pain went away.
About 7 years ago another one of these flares happened and was taken to hospital (wasn't taken any other times due to advice given to my parents from nhs helpline that it would be OK probably just a bug or something). Was sent home straight away with tablets for pain and to stop the vomiting, a week later I was sent back by my gp due to being unable to eat anything (no appetite) and pain with the gp thinking it was appendicitis. After multiple tests all coming back as inconclusive I was told that I most likely have crohns and the pain I had may have been a small bowel obstruction but due to it being over a week later it had gone so was hard to tell.
I was discharged after 3 weeks and told I would be scheduled for an outpatient colonoscopy to diagnose crohns which ended up never happening (firstly the hospitals fault as my name was never put on the list and secondly my fault as eventually when I was put on and had a letter through I forgot to reply and was taken off)
Fast forward to about 2 years ago, I had mostly been symptom free apart from the small flare of diarrhoea once or twice a year but nothing major like the hospital time and had mostly forgotten about the whole thing. Anyway my flat mate ended up getting very sick and ended up being diagnosed with UC and having an ileostomy, this was an eye opener for me and made me go back and ask to have the colonoscopy done.
Had my first colonoscopy done just before xmas 2014 which went badly as the doctor couldn't get the scope around the sigmoid section due to the angle, it was very painful and ended up having to end it. Had 2nd one just before xmas last year this time with a pediatric scope which could get through and samples were taking etc. Before the first one I had uveitis in both my eyes (separate times not at the same time lol) and after the second one this has happened again in my right eye which I've been told is down to the crohns.
Had my appointment with the doctor last week and was told it was definitely crohns in the ileum and have been told he would like to start me on aziothripine to maintain the remission I've been in the last 5ish years. He says while I am in remission bowel wise the uveitis shows it is still somewhat active. Going back next week to decide on the treatment or not.
Any ways that's the story! Anyone have any experiences on aziothripine? Reading some of the things about risks of lymphoma is a bit worrying not really sure what to do due to being generally ok for so long now.
Thanks
Im a 24 year old male and was recently finally diagnosed with Crohn's disease, after the disease starting showing symptoms at about age 15-16 possibly earlier hard to remember. Originally it was just occasional diarrhoea but every now and then I would get horrendous stabbing pain in my gut for about 10 hours with vomiting and diarrhoea until the pain went away.
About 7 years ago another one of these flares happened and was taken to hospital (wasn't taken any other times due to advice given to my parents from nhs helpline that it would be OK probably just a bug or something). Was sent home straight away with tablets for pain and to stop the vomiting, a week later I was sent back by my gp due to being unable to eat anything (no appetite) and pain with the gp thinking it was appendicitis. After multiple tests all coming back as inconclusive I was told that I most likely have crohns and the pain I had may have been a small bowel obstruction but due to it being over a week later it had gone so was hard to tell.
I was discharged after 3 weeks and told I would be scheduled for an outpatient colonoscopy to diagnose crohns which ended up never happening (firstly the hospitals fault as my name was never put on the list and secondly my fault as eventually when I was put on and had a letter through I forgot to reply and was taken off)
Fast forward to about 2 years ago, I had mostly been symptom free apart from the small flare of diarrhoea once or twice a year but nothing major like the hospital time and had mostly forgotten about the whole thing. Anyway my flat mate ended up getting very sick and ended up being diagnosed with UC and having an ileostomy, this was an eye opener for me and made me go back and ask to have the colonoscopy done.
Had my first colonoscopy done just before xmas 2014 which went badly as the doctor couldn't get the scope around the sigmoid section due to the angle, it was very painful and ended up having to end it. Had 2nd one just before xmas last year this time with a pediatric scope which could get through and samples were taking etc. Before the first one I had uveitis in both my eyes (separate times not at the same time lol) and after the second one this has happened again in my right eye which I've been told is down to the crohns.
Had my appointment with the doctor last week and was told it was definitely crohns in the ileum and have been told he would like to start me on aziothripine to maintain the remission I've been in the last 5ish years. He says while I am in remission bowel wise the uveitis shows it is still somewhat active. Going back next week to decide on the treatment or not.
Any ways that's the story! Anyone have any experiences on aziothripine? Reading some of the things about risks of lymphoma is a bit worrying not really sure what to do due to being generally ok for so long now.
Thanks
