Long Term Budesonide Foam (Uceris)

Steroids do make us feel wonderful, but unfortunately are for temporary usage. Steroid enemas can thin the walls of our intestines and have other lasting effects. Steroid enemas are about 10% systematic, so it still has an affect on your bone mass, blood sugar, and other typical steroid side effects and if taken for many months, a year, or more can result in osteoporosis, glaucoma, type ii diabetes, etc etc. You do not have to stop steroid enemas at this point, only 2-weeks in. Generally want to limit them to a couple months or so.

What's next in your treatment? What makes you think you failed rowasa? If you took both delzicol and rowasa at maximum dosages without resolving your flare then you likely need much stronger meds like biologics (remicade/humira) or thiopurines (azathioprine/imuran or 6mp).

I had the same response to Uceris foam. It was great a twice a day but started to fail at anything less than that. My doctors don't see too alarmed about using for longer than the 6 weeks (2 boxes) but of course it wouldn't be a permanent thing. I have already gone through 3 boxes, including a period of time off the foam. Now I am trying to stick to every-other night. I have a box in reserve and I will have no hesitation about using it as needed before my next appointment in May.

I’ve been one form of steroids or another coming up for 2 years now. The last few months have been only steroid enemas, a huge improvement to being stuck on pred but obviously still not ideal.
I spoke with my gi yesterday about long term steroid enema use and the risks involved. He said that the biggest worry for me was the effect on my bones. Apparently I’m getting to an age (I’m 36) where my body will soon stop producing calcium in my bones and I will have to rely on the reserves already in them for the rest of my life- so a bad time to deplete it. Apparently after this time, no amount of calcium supplements can help. He also said glaucoma and diabeties where risks to be concerned about but dismissed the thinning of my colon as being something he was overly stressed about.
He said the time that people react badly to steroids can vary greatly person to person so couldn’t give a time frame, but it may be less of an issue for a younger person if they were able to get off the steroids in time to build back the calcium before the point of no return. He did say my risk of complications had reduced dramatically dropping from pred to the enemas but finding a maintenance med was obviously a top priority.

There was a fair bit of talk about surgery at my consultations with him when I was stuck on pred and failing maintenance med after maintenance med, but he said he didn’t think this was so much of a concern right now if I was only on enemas & I had more time to try other meds out

Yeah, steroids eventually give us all type ii diabetes, glaucoma, and/or osteoporosis when used long term (continuously or cumulatively). Not a matter of 'if' but a matter of 'when.' And yes, some do react stronger and have those irreversible side effects sooner.

The other thing steroids tend to do is redistribute body mass from the extremities to the core. Long term steroid patients are meanly called "potatoes with match stick arms," as you end up with skinny arms and legs, and extra mass around the torso. Steroids turn muscle into sugar and it reconstitutes as fat on the torso.

Yes i think always good to check to be on the safe side. Hopefully you'll be fine! I am intolerant to dairy since i developed UC so that probably doesn't help my situation...