Am I still in a flare? - advice if you've had experience please

Hi there, I was diagnosed with UC in May and tried Asacol enemas, Colifoam enemas and Pentasa to get it under control but nothing worked until I was given 8 weeks of Prednisolone. I went back to my Consultant for follow-up when I finished the Pred. and we had a chat. He's not convinced my flare is over and may start me on Mercaptopurine. I'm really hoping to avoid this. He took bloods and as they came back normal he said that he'll see how I am in December and to call the IBD Nurses if I worsen and he'll prescribe the Mercaptopurine. The thing I'd like advice with is - I've gone from bleeding severely all day to no blood and only slight occasional diarrhoea and mucus (so much better) and if my bloods were normal I'd have though I'm out of a flare and this could just be IBS? He said we'd do faecal calprotectin to make sure but I think he forgot as I've not heard about giving a stool sample. Has anyone had experience of recovering from a flare and maybe just having slight symptoms that aren't too bothersome, so could I avoid strong drugs do you think? Thank you

[willow24 Administrator]

It def isnt IBS if you were passing lots of blood, and I assume your bloods were abnormal, which doesnt happen in IBS. You can still experience slight symptoms even when in remission. I still pass mucus, have loose stools and go up to 6 times a day when in remission - but thats my 'normal' lol

With crohns you will have flare up and remission stages. Meds are use to treat flare ups in higher doses and when symptoms settled are used in lower doses to try and keep in remission (known as maintenance dose).

The meds in IBD are not prescribed lightly due to side effects, so Im guessing you were very ill when had the flare up. weigh it up. do you want to avoid meds and experience a flare up sooner rather than later, or take meds and could be in remission for yrs?

Yes you can have flare ups whilst on meds but because you are already on the meds, a phone call to/from IBD nurse, and these can be increased immediately. Otherwise its a case of making an appointment and waiting to see the gastroenterologist. Gps cannot prescribe these meds first hand as they are specialist meds

I know this isn't probably what you wanted to hear, but I hope it helps x

[Hidden in reply to willow24]

Thank you for your helpful reply. When I got back from work last night I had a letter through the post from my consultant asking me to get a blood test & the blood form included with a request for 'quantiferon gold '. Any idea why he wants this done?!

[willow24 Administrator in reply to Hidden]

Its a test for TB, and is usually done when a patient is to start on immunotherapy / anti-TNF therapy for IBD. He has likely asked for this as he wants you to start mercaptopurine. TB needs to be ruled out (you can be a carrier without any symptoms) as these meds can reactivate/activate TB and can be very serious.

Im assuming your last bloods are still showing inflammation etc so he is requesting further bloods to be sure and to also check your WCC (white cell count) to make sure it is 'safe' to start medications. As I say this is just an assumption going from my own experience and that shared by others

Hang in there x

[Hidden in reply to willow24]

Thx for your support, the IBD nurse told me my bloods were fine that's why I'm so confused? I only have mild symptoms so I'm sure this is just a precaution?

[willow24 Administrator]

Yeah, and it sounds as tho you have a good consultant and IBD nurse. im glad I can be of some help x

[Gillysboy]

Hi if you are off preds I think that you may well not stay as you are Mercaptopurine can be good to help keep you as you are now but can take up to three months to work