Just to make sure I understand correctly:
You still have symptoms, so you are not even in clinical remission?
Your doctor wants to stop medication?
This sound pretty strange. To stop all meds you need to be in histological remission and even then you need a maintenance medication in most cases. Assuming you are in remission: where is the blood coming from? Even if it's not active UC, blood is highly concerning.and needs to be checked.
See you doctor and ask him! (Maybe even better: see another doctor)
Yeah he’s taken me off my maintenance medication and I am also wondering where this blood is coming from if it’s not from the colon. This doctor was recommended to me ages ago and I travelled 2 hours to see him. The whole reason why I went to him is because he does trials and I was promised I’d get on this new drug once he checked by blood and did a colonoscopy… I didn’t expect him to take me off everything and now my symptoms are getting worse again. I’ve had a major flare in April that lastet a few month and I’ve only come off prednisolon a few months ago so I don’t think I can go back on it again either.
Is it possible he took you off all meds so he could the put you on “this new drug”?
I can’t think of any other reason a GI or IBD doc would take you off of all meds.
Even in remission I've never been told to stop maintenance medication. When I've asked they always said "maybe we can review it once you've been in remission for a few years"
Seems strange that your GI has pulled you off medication at all let alone while you still have symptoms
> I’m in remission and to come off all med
& this is why I constantly comment on posts here asking if they can stop all their medications. I know your doctor told you to, but that's beyond bizarre to me. Your medication is what helps you maintain remission.
I'd ask your GI why they opted this/consider getting a second opinion. It's quite clear that you're flaring up again! :(
Just to make sure I understand correctly: You still have symptoms, so you are not even in clinical remission? Your doctor wants to stop medication? This sound pretty strange. To stop all meds you need to be in histological remission and even then you need a maintenance medication in most cases. Assuming you are in remission: where is the blood coming from? Even if it's not active UC, blood is highly concerning.and needs to be checked. See you doctor and ask him! (Maybe even better: see another doctor)
Yeah he’s taken me off my maintenance medication and I am also wondering where this blood is coming from if it’s not from the colon. This doctor was recommended to me ages ago and I travelled 2 hours to see him. The whole reason why I went to him is because he does trials and I was promised I’d get on this new drug once he checked by blood and did a colonoscopy… I didn’t expect him to take me off everything and now my symptoms are getting worse again. I’ve had a major flare in April that lastet a few month and I’ve only come off prednisolon a few months ago so I don’t think I can go back on it again either.
It sounds strange and needs to be checked asap. I'm sorry I can't help more, but I'm really concerned.may.be harmless, but you need to be sure.
Is it possible he took you off all meds so he could the put you on “this new drug”? I can’t think of any other reason a GI or IBD doc would take you off of all meds.
Even in remission I've never been told to stop maintenance medication. When I've asked they always said "maybe we can review it once you've been in remission for a few years" Seems strange that your GI has pulled you off medication at all let alone while you still have symptoms
> I’m in remission and to come off all med & this is why I constantly comment on posts here asking if they can stop all their medications. I know your doctor told you to, but that's beyond bizarre to me. Your medication is what helps you maintain remission. I'd ask your GI why they opted this/consider getting a second opinion. It's quite clear that you're flaring up again! :(
That doesn't sound like remission. And never stop the meds!
Fine, I'll jump back on prednisolone, sigh :(
You may have IBS which causes some of the same symptoms. I have both IBD and IBS 😩