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Ulcerative Colitis
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Posted 6/4/2017 11:49 AM (GMT 0)
Had a week of work and I have been thinking about things a lot.

Its still early days I think as far as azathioprine is concerned as I have only been on 200mg for 3 weeks after having a dose increase. I am taking 5 mg of pred now as I was told to taper of it. I have been taking it for nearly two years.

I am still using salofalk enemas nightly and have been for three years solid and I also use asacol Suppositories now and again. My bleeding is up and down. I had hardly any blood two days ago and yesterday used a suppository. There is a massive increase in blood this morning. This makes me wonder if the suppositories are actually irritating things. This then go me thinking about the enemas. They obviously don't help as far as remission is concerned but I did wonder whether they were irritating me also or were they just dampening things down slightly.

Now I am tempted to stop the suppositories definitely but also maybe stop the enemas too. Maybe just for a short trial or a week or too.

I need some help and thoughts about doing this.
Posted 6/4/2017 1:02 PM (GMT 0)
I probably wouldn't stop them both together, I'd stop them one at a time and then you can determine whether the suppository is making it worse but the enema is making it better and vice versa.
Posted 6/4/2017 1:29 PM (GMT 0)
I wouldn't stop anything during a taper. Change only one thing at a time, to know what is or isn't working.

If you're seeing blood while tapering then that is the likely cause. I'd wait at least 6 weeks before getting to a very low dose of pred. Perhaps the taper is a bit too quick. Everybody really wants to be off of pred yeterday, but the only prize in rushing a taper is a bloody mess of a flare.
Posted 6/4/2017 2:06 PM (GMT 0)
Hi
Thanks for your replies. I have been doing a long slow taper of pred. I tapered every 14 days from 40mg and then styed at 20mg for 6 weeks. Then tapered every 14 days again 15, 10, 7.5 and now at 5. I did wish that my gastro would have let me stay on higher doses of pred longer to allow the aza to kick in but he wouldn't let me because I have been on doses of between 40 and 30mg for nearly two years.

I am definitely going to stop the sups. I dont use them regularly enough anyway.
Posted 6/4/2017 2:31 PM (GMT 0)
Wow, getting down to 5 mg of pred after two years on it is quite the accomplishment! Struggling with a taper myself right now - can't get below 15mg. My doc is also tapering me even though my new medication (Entocort) hasn't really kicked in yet. That said, I was never in total remission on pred either.

I'd keep on with the enemas.
Posted 6/4/2017 4:16 PM (GMT 0)
Thanks.

My symptoms always came back at low doses of pred. I never got to below 20mg without having to increase them. I always used to think to myself as I increased them back to 40 that this time they would work but they didn't.
When I first used the enemas they worked straight away and now I just wondered if my body is resistant t them to.

I am so fed up of this two year flare and am really hoping the aza kicks in. I started on 150mg but after a blood test that said I hadn't reached therapeutic levels it was increased to 200mg three weeks ago. They were being really cautious because I have cyclic neutropenia.

God I hate this illness. For me if aza doesn't work I think it will be surgery. Its a shame they cant just cut out my sigmoid and rectum and leave the rest.

Thanks to all who read this and can offer their thoughts.
Posted 6/5/2017 7:44 AM (GMT 0)
Try biologics before surgery.
Posted 6/5/2017 3:35 PM (GMT 0)
Can't have biologicals. I have other medical conditions that would be made worse by using them. There is no way I would take the risk and my GI said he would not put me on them either because of this.

I am trying the FODMAP diet at the moment in the hope this may help. First day today.
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