New member from Australia.

Just want to say thanks to all your posts. I have learnt more from you guys than from any doctor.
I've had UC for fifteen years - I seem to have a flare up every ten months or so that lasts for four to ten weeks and in between time I'm symptom free although the colonoscopy says I still have signs of ulceration. Current flare up is bleeding with every BM aprox 12 times per day. No cramps but that horrible dragging in the bum feeling an the worse thing is the lack of energy. I really struggle to get through a normal day.
For the past too many years I haven't taken any medication - stupid and stubborn I know. No one ever explained to me the dangers of long term cancer risks.
I'm currently taking two colifoam enemas - just increased from one, prednisolone - starting at 50 mg and reducing over a week and 250 mg of messasalazine - 2 tablets here times a day - which I am to continue taking for life!!
After reading what you guys have said the course of pred- being one week course which was prescribed - did nothing so I have gone back on which. Will taper off over the next two weeks and hopefully this will make a difference.
Sorry for ramble - blame it on the drugs!!
I don't know anyone with UC so you guys have been a real help. Thanks.

Hi and welcome.

You could also consider using the mesalamine enemas once you stop the steroid ones.

Welcome Golfower.

I'm another Australian UC sufferer too.

Which areas of your colon are affected?

Glad to report that day 2 on my second course of pred has made a HUGE improvement. 6 BMS compared to 16 and I actually played golf!!! And made it through the game - just!!! :)
This - plus the high if the pred- makes me feel so much happier.

I'm also taking on board what people have written on the forums and am making some good diet changes. So hopefully I will continue to improve.
But don't you know it - now I have to rush off to the loo!!

Glad you're feeling better. The prednisone will make you a bit high while you're on it, amongst other things. You may get sleepy when tapering down but you will return to normal after a little time.

Hopefully the mesalazine will keep you in remission once off the pred. Remember to keep taking the mesalazine every day even if you feel better.

Well a week later and things are going back to bad again.
I decreased the pred from 50 to 25 and the bleeding and tenesmus is back with avengance. Looks like I dropped too much too soon. This is all a trial and error thing isn't it. I need to get a new doctor but of course that doesn't happen overnight. Could take me weeks to get an appointment. I think I need to start all over again with my diagnoses and treatment.
So I think I'll try at 40 mg of pred for a week. Any advice would be welcome. So far no ill effects after nearly three weeks.
Also I found an alternative to the two tablets of mesalazine three times a day half an hour before food which is not the easiest of regimes to follow. In Australia it's called mezavant and when I asked my gp about it he knew nothing although its listed on the phs.
Just wish this flare up would go away!!! I know compared with so any others mine is a mild attack but I'm still over it!!!

Hi fellow Aussie -I'm currently on 40mg pred for 2wks then a taper of 5mg per week til 0mg, so that is tapering for 7wks after 40mg for 2. Last time I had a course of pred 5mths ago I was prescribed only 25mg for 2wks then taper by 5mg/wk and it didn't show much improvement.

For 6-7 yrs I've been taking 6 sulfasalazine tabs (3mg/day) but if it doesn't keep me in remission I want to try something else (not salofalk tho it made me feel crap).

Anyway..I am really happy to have found this forum and totally feel your sentiments about previously suffering in silence and that reading posts is helping to accept my UC. I have mild flares go for months, when I finally did get into the dr, she said next time I have a flare I am to tell the reception staff on ph it is an IBD flare and i need a quick urgent aptmt so I don't wait mths to get in.

There are lots of helpful suggestions here and I am keen to try a different maintenance therapy and new diet!

Thanks for your advice Alumbai. :)

Insofla - no idea why my gp prescribed such a short course of pred. He's a gp so I suppose limited knowledge of UC. Not good enough I know. I wish he had referred me there and then. Because I wasn't in a lot of sin he didn't think the symptoms were bad - but 20 BMs , constant bleeding , naseau, fatigue just wasn't enough I guess!!!

I'm also taking colifoam and messasalazine tablets. The tenesmus is just horrid at the moment. I strain and strain and just blood and clotty stuff comes out but hardly any poo. When I do pass poop I heave and vomit. Oh this is just too much fun isn't it!!!

hey Golflower,

i've suffered UC 5 for 5 years now and one thing i've found if what people have been saying is true tappering off the pred. needs to be very slow the last time i did i tapered off 40mg daily to 0mg over 4 months. Another thing i realised and is why i tapered for so long was because your body gets used to the drug and lives off it with drops from 50mg to 25 mg you body can actually start shutting down and not functioning properly which causes all the craziness.

one thing to understand is that your body naturally produces about 5mg of prednisone a day so with that in mind..

i suggest cos i feel like i was exaclty like you to be on 40-50mg for 2-3 weeks and all the other meds that your doc suggested and stay on it till you start feeling stronger and then start the process of tapering @ 5mg per week and when you get to around 15mg this is crutial because this is where you are starting to cros back to relying on your own body to produce it's own amount .. take the tapering even slower ... 2.5mg a week til your back to your normal self.
with seeing a naturopath and sussing out a good diet for yourself you will be well on your way to getting better ... everyone is different but atm i am drug free and controlling my mini episodes with diet and LOTS of rest.

i understand some people are different and have alot more painful flares and UC can affect people different but see how you go.

:)

hey Golflower,

how are you doing today? was just browsing and saw your reply of thanks and thought i'd say "hi" and also see how you're holding up?

simonde

Colonoscopy today showed moderate to severe inflammation. They give me the pictures and it looks very sore!!
The doctor there blasted my gp for taking such a assive approach to my treatment and has put me on a five week pred course and salofalk enemas. Also told me to get a decent specialist.
The prep Last night was horrid. It took four hours to kick in and I was in so much pain. And what came out was black and putrid. Never had that before!!!
But I feel like at least I have a proper diagnoses and a more aggressive medication regime which I will stick to and I will continue with even when I'm not flaring. I'm not going back to being like this again.
Thanks for your concerns and all the wonderful advice. It s invaluable. Xxxx

The aftermath of the colonscopy has left me extremely sore horrid tenesmus and vomiting and bleeding. Oh and I'm getting a cold. Happy days.