Hey guys,
Thought i would say hi to you all, I've been a lovely sufferer of UC for 18 years now, was diagnosed when i was 8 years old.
Been on Pentasa since diagnosed, and was a terrible teen going thru some serious denial and most of those years ended up with the sewer system having lots of pentasa treatment as most of my meds went down the sink, unless i was having pretty nasty flares in which case i would start taking them and often end up on oral or IV prednisolone depending how long i had left it for.
Got to around 18 when i was really sick overseas on a trip to Italy, spent most of it in the hotel losing amazing amounts of blood to the toilet, and when i stepped off of the plane in Glasgow instead of my parents taking me home i stopped off in the hospital, where i stayed for a month where i fought for weeks to try and keep my large bowel. Was on the theatre list more than once and am obviously a persuasive person because talked my gastro consultant out of operating on me several times. Eventually after 1 month of IV steroids and several weeks on oral pred i recovered. Not enough for my poor wee tum, i am now left with scarring over 2 thirds of the large bowel, and for the next two years after having such a fright i took my meds religously, i ended up having to start on Azathioprine because i was having too many courses of steroids.
Since then i have gradually improved, my flares are now limited to two or three times a year and most of the time i can treat them with predfoam enema stuff, occasionally need to go on prednisolone.
I am originally from Scotland, and have a fantastic gastro team there who i have been seeing since i was 14 and started to move across to the adult health team. My consultant is brilliant and i have such a good relationship with him, when i start to feel a flare coming on i call his secretary and he gets back to me within the day with a plan. He listens to me and i have the greatest respect for him since he spared taking out my bowel all those years ago! He still threatens it from time to time about eventually having an ileo-anal pouch fashioned but only when i have a couple of flares close together.
I work as a nurse and decided to move to New Zealand for a year to work in a NICU there and see the country. I am 8 months into the year and loving it, the people are fab and loving work here, not that different to Scotland but its cool. Unfortunately i ended up in the NZ health care system a couple weeks ago, had what i thought was a mild flare up, a slight increased freq going to the loo and losing a bit of blood, so thought some predfoam would clear it up, but my GP sent me straight to emergency to see the gastro team, there i had a sigmoidoscopy and realised that instead of my usual 10cm affected inflammation i was actually ulcerated and inflammed to more than 40cm of bowel, which floored me a bit.
The consultant wanted to change my pentasa over to asacol, and start a new steroid programme on me, to which i actually refused, as i didnt want to mess around with meds i had been on for years and am semi stable, i knew if i recovered i would have at least a few months before i got sick again, and would be home by that point in aa health care system who knew me and my disease and who i trusted! Plus didnt want to spend the rest of my trip in hospital and on the loo if it went wrong! So got some steriods to improve things and they upped my pentasa from 6 to 8 tabs daily and on my way i went.
Unfortunately or fortunately, however i look at it, they took bloods for 6TGN levels (they dont do this in the UK as it is too expensive for the NHS!) which shows my levels are sky high, this is the ones that determine how Azathioprine is being used by the body, and high levels mean you are getting toxic from it, and its damaging your bone marrow. I have just had a repeat to confirm, then its likely that they will take me off it or substantially reduce it, which scares ,me as it has been the only thing to keep me relatively stable. so it has put a bit of a dampener on things at the moment.
Its great i can moan to people who know where i am coming from cos my family only nod then change subjects!PLus reading other stories is really inspiring.So i found you guys while researching other stuff and thought i would say hi!
:ycool:
HI!
Thought i would say hi to you all, I've been a lovely sufferer of UC for 18 years now, was diagnosed when i was 8 years old.
Been on Pentasa since diagnosed, and was a terrible teen going thru some serious denial and most of those years ended up with the sewer system having lots of pentasa treatment as most of my meds went down the sink, unless i was having pretty nasty flares in which case i would start taking them and often end up on oral or IV prednisolone depending how long i had left it for.
Got to around 18 when i was really sick overseas on a trip to Italy, spent most of it in the hotel losing amazing amounts of blood to the toilet, and when i stepped off of the plane in Glasgow instead of my parents taking me home i stopped off in the hospital, where i stayed for a month where i fought for weeks to try and keep my large bowel. Was on the theatre list more than once and am obviously a persuasive person because talked my gastro consultant out of operating on me several times. Eventually after 1 month of IV steroids and several weeks on oral pred i recovered. Not enough for my poor wee tum, i am now left with scarring over 2 thirds of the large bowel, and for the next two years after having such a fright i took my meds religously, i ended up having to start on Azathioprine because i was having too many courses of steroids.
Since then i have gradually improved, my flares are now limited to two or three times a year and most of the time i can treat them with predfoam enema stuff, occasionally need to go on prednisolone.
I am originally from Scotland, and have a fantastic gastro team there who i have been seeing since i was 14 and started to move across to the adult health team. My consultant is brilliant and i have such a good relationship with him, when i start to feel a flare coming on i call his secretary and he gets back to me within the day with a plan. He listens to me and i have the greatest respect for him since he spared taking out my bowel all those years ago! He still threatens it from time to time about eventually having an ileo-anal pouch fashioned but only when i have a couple of flares close together.
I work as a nurse and decided to move to New Zealand for a year to work in a NICU there and see the country. I am 8 months into the year and loving it, the people are fab and loving work here, not that different to Scotland but its cool. Unfortunately i ended up in the NZ health care system a couple weeks ago, had what i thought was a mild flare up, a slight increased freq going to the loo and losing a bit of blood, so thought some predfoam would clear it up, but my GP sent me straight to emergency to see the gastro team, there i had a sigmoidoscopy and realised that instead of my usual 10cm affected inflammation i was actually ulcerated and inflammed to more than 40cm of bowel, which floored me a bit.
The consultant wanted to change my pentasa over to asacol, and start a new steroid programme on me, to which i actually refused, as i didnt want to mess around with meds i had been on for years and am semi stable, i knew if i recovered i would have at least a few months before i got sick again, and would be home by that point in aa health care system who knew me and my disease and who i trusted! Plus didnt want to spend the rest of my trip in hospital and on the loo if it went wrong! So got some steriods to improve things and they upped my pentasa from 6 to 8 tabs daily and on my way i went.
Unfortunately or fortunately, however i look at it, they took bloods for 6TGN levels (they dont do this in the UK as it is too expensive for the NHS!) which shows my levels are sky high, this is the ones that determine how Azathioprine is being used by the body, and high levels mean you are getting toxic from it, and its damaging your bone marrow. I have just had a repeat to confirm, then its likely that they will take me off it or substantially reduce it, which scares ,me as it has been the only thing to keep me relatively stable. so it has put a bit of a dampener on things at the moment.
Its great i can moan to people who know where i am coming from cos my family only nod then change subjects!PLus reading other stories is really inspiring.So i found you guys while researching other stuff and thought i would say hi!
:ycool:
HI!
