A big hello to the forum!!
I'm Bern from the UK - Near Cambridge.
My story is that I have been diagnosed with Crohns just before the birth of my first child - she’s now 14.
Since then I've had very long periods of active Crohns and also some periods of remission. One lasting four years! Generally have spent far too much time feeling like a wounded mutant in need of sleep and loo paper… fortunately having my own business meant that I’ve not been trapped at home or in poverty..
Oh! and God Bless the NHS… Fabulous treatment for years from the very best specialists the world can offer… My particular specialist now lecture tours the globe and I get to see him monthly, his team weekly and have constant support.
Treatment has ranged from Pred - more Pred and help my head is going to explode Pred back in the mid 90’s - then.
Azathioprine- turned me green (literally) and put in in ER (A&E in the UK)
Various Anti TNFs
Methotrexate - worked then ended up stopping my lungs working (six weeks in isolation ward - yuk)
No surgury as I have complete colonic Crohns - so its all out or none... have put of past strong suggestions form hospital to have it "Snipped out"
Various special trials
Most recent - Israeli drug that’s put me in good level of remission - Hooray!!
I just wanted to see who was here and get any news on new treatments.
Humira was good for me BTW and only stopped being good as my body seemed to have a genetic makeup that did not agree long term. I even have ten packs in my fridge that I really aught to dispose of - not at all sure how to do that... suggestions welcome as I understand it does not have a shelf life that lasts forever.
Anyhow – I seem to be in reasonable health now save for odd flashbacks where I have to curl up in a ball and take loads of painkillers.. but only for a couple of hours for one day a month like that now, so I can live with that.
Has anyone got news of meds that work for them?
All the best
Bern
I'm Bern from the UK - Near Cambridge.
My story is that I have been diagnosed with Crohns just before the birth of my first child - she’s now 14.
Since then I've had very long periods of active Crohns and also some periods of remission. One lasting four years! Generally have spent far too much time feeling like a wounded mutant in need of sleep and loo paper… fortunately having my own business meant that I’ve not been trapped at home or in poverty..
Oh! and God Bless the NHS… Fabulous treatment for years from the very best specialists the world can offer… My particular specialist now lecture tours the globe and I get to see him monthly, his team weekly and have constant support.
Treatment has ranged from Pred - more Pred and help my head is going to explode Pred back in the mid 90’s - then.
Azathioprine- turned me green (literally) and put in in ER (A&E in the UK)
Various Anti TNFs
Methotrexate - worked then ended up stopping my lungs working (six weeks in isolation ward - yuk)
No surgury as I have complete colonic Crohns - so its all out or none... have put of past strong suggestions form hospital to have it "Snipped out"
Various special trials
Most recent - Israeli drug that’s put me in good level of remission - Hooray!!
I just wanted to see who was here and get any news on new treatments.
Humira was good for me BTW and only stopped being good as my body seemed to have a genetic makeup that did not agree long term. I even have ten packs in my fridge that I really aught to dispose of - not at all sure how to do that... suggestions welcome as I understand it does not have a shelf life that lasts forever.
Anyhow – I seem to be in reasonable health now save for odd flashbacks where I have to curl up in a ball and take loads of painkillers.. but only for a couple of hours for one day a month like that now, so I can live with that.
Has anyone got news of meds that work for them?
All the best
Bern
..... I hate to say it too loud cause I might jinx it! I am glad you found this forum. I hope to see you around.
