It's been at least 4 years!

Hi all

It's been at least 4 years since I posted here mainly because I started Azathioprine ( think also called Imuran) and kinda forgot I had UC I have kept so well. However on advice from my GI who advised to stop the med because the inflammation was under control I have been having the worst flair since first diagnosed in 2002! I just got out of hospital on Saturday, first ever admission, as had to get blood transfusion after really bad bleed.

My problem is my GI doc refuses to believe it was a flare up of UC. Back at the beginning of dec I realised I was starting to flare, being proactive I used rectal steroid meds twice per day for 2 weeks but things were getting worse so went to GI doc who done scope, at the time I was only going between 3 a 5 times per day and was totally manageable. Scope showed that bottom end was ok (i put down to meds I was using) there was patchy inflammation further up with some ulcers. Asacol was doubled and I was sent away, within 4 days I was going over 10 times per day and up to 5 times per night. It was over Xmas time so a different doc prescribed steroids 40mg. Took them for 2 weeks had first solid bm one morning then that night had the big bleed which landed me in hospital. By that time I knew there was little or no inflammation steroids had done their job, GI done a scope seen no inflammation also couldn't see where blood coming from but again said he did not believe it was UC flare up. Wants me off steroids ASAP to drop 5mg every 5 days, finished 5 days of 30mg and dropped to 25mg today but the cramps are coming back. I get woken about 6am with cramps which have me running to the bathroom I am so scared that within a few weeks I am going to be right back in a flare again. GI said all we can do is wait for me to get ill again and then he will scope when ill so he can see inflammation with his own eyes as he's not prepared to treat me blind! I am so upset, I'm a mum of two young kids and can't bear to go through all this again.

I feel my doc thinks this is all in my head.

Thanks for reading, any thoughts would be appreciated.

Why the different docs? Have you tried tapering slower on the pred?

I'm shaking my head. You were on Imuran, you were in remission 4 years, you stopped, fell out of remission, and since they have not put you on Imuran again? The pieces of the puzzle don't seem to fit together. I can't tell you how many people come here who attained remission, quit what they were doing, and then they're back. You should never quit doing what put you into remission, ever. UC is an autoimmune disease where your body attacks either your colon or something in your colon, causing inflammation. Meds and treatments can stop this, as long as you continue a treatment plan to keep it stopped. These treatments don't cure you, all they do is stop the attack or keep it under control while you are doing treatments. Once you stop a treatment plan your body resumes the attack all over again and future flares always seem harder and harder to treat. Once you achieve remission you should never stop doing what it was that got you there, not matter how good you feel or how long you have felt good. Why on earth haven't they restarted the Imuran? That's just plain stupid.

I am so sorry your doctor is being an idiot. It is amazing how some people can get medical licenses. You should never stop a treatment that is working. I agree find another GI.

Meh, I'll go against the grain and say...you tried to stop the meds...which in a sense is good. Putting these meds in the body isn't the greatest thing also.

Oh well, you tried to stop the meds, flared...it is what it is. You shouldn't be sad for trying to be free of meds.

....sad for flaring though.

Just remember with a new doc there is no law that you have to obey them like an obediant slave. Most doctors will confess to you that they don't know what causes your UC and they don't know how to cure it. Bottom line, what the heck do they know? Nothing. They know 5 ASA's. They know prednisone, Imuran, 6mp, Remicade, Humira, suppositories and enemas. Most all of us know that. Most of us actually know far more than the doctors do so if you know that something is not right you need to stand up for yourself and not just be that obediant slave where if the doc tells you to jump off a bridge, you go jump off a bridge.

tums, i'm a bit confused as to why your doctors don't think you are not flaring. you have ALL the signs of a flare- i also throw up a lot on the toilet when flaring from the pain and nausea. it makes no sense to me at all that they don't treat you more seriously.

also, did you have two colonoscopies in december and your doctor wants to do ANOTHER one? that is crazy and i agree with the others that you need a new doctor. that is so bad for your colon, especially when it's sick.

No nothing wrong with my blood work my doc just decided it was time to come off it?

Had 2 sigmoidoscopy tests so not as bad as colonoscopy but still bad enough for me. 1st one showed ulcers and inflammation further up in colon and that is why my doc saying not UC as they were not at the bottom but I was using rectal meds. I'm pretty sure I also do have ibs but I think my dr now thinks that's all I have. Does ibs cause ulcers in the colon? Does it cause you to bleed lots? Does it leave you virtually bed bound with extreme fatigue that even something so simple as having a bath exhausts you?.

Anyway good news is I've just been to see my local doctor who was lovely and very understanding. What a difference to soeak to someone and actually feel you are being listened to. She is referring me to another GI doc for a 2nd opinion and she agreed with me regarding slowering the taper from pred.