Difficulty Tapering Off Hydrocortisone Enemas

Hi all - I posted here a few weeks back while starting treatment for a UC flare (diagnosed in 2008, remission for about 10 years and was totally off medication for a few years, flare returned this spring). The good news is that a combination of oral mesalamine, hydrocortisone enemas nightly and UCERIS foam daily got my symptoms under control pretty well.

I started all the meds about two months ago and for the past several weeks have felt almost no symptoms. My GI said I could start tapering the steroids, so I began by substituting a mesalamine enema 2 days last week (not back to back) for the hydrocortisone enema. I used the mesalamine enemas as my maintenance med in the past so that seemed like the logical transition. Didn’t really notice a difference at first but after the second day of substitution my symptoms started returning (less formed stools, discomfort going, etc). I was somewhat surprised that such a minor backing off of the enemas could already have that effect.

Of course now I’m concerned that getting off the steroids will be more difficult than I thought. Anyone have experience with steroid dependency when using enemas? Maybe I just jumped the gun and tried to taper before my flare was really under control? I am pretty sensitive to the steroids even in enema form and developed noon face in the past so I was hoping to avoid staying on them too long.

Interesting, no, I didn’t even think about doing half. So you just squeeze half a bottle and leave the rest for the next night?

I was in your exact situation I was new free for 10 years then had a baby and had the worse flare ever my daughter is now 3 and it took me over 2 years to taper off hydrocortisone i eventually had to go on imuran which isn’t putting me in remission but I haven’t needed the enemas

I am due for a newer scope but I’ve always had just proctitis. I’ve always been on Asacol as the oral med - the Colazal did not agree with me when I took it years ago.

This week I tried tapering my daytime UCERIS foam to every other day (started taper last weekend). Initially I felt fine and I’d say even better than before - I was tempted to stop the uceris altogether and not taper at all. But then starting yesterday I’ve noticed a decline in visual appearance of stool, trending more toward that inflammation look. I don’t know how much of it to attribute to just changing the routine and my body needing to adjust vs chalking it up to a failed taper. It’s tough to walk the line between giving your body a chance and not wanting things to snowball. I’m only having one bm per day and feel good all day so it seems like I’d be able to reduce the med regimen at this point...