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Only cortifoam keeps things under control

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Ulcerative Colitis
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Posted 6/24/2018 10:22 PM (GMT 0)
Can’t ask my gastro right now (and I’m currently shopping around for a new one). I actually tried to talk to her about this but she totally blew me off.

The only thing that is currently making the most noticeable difference in my treatment is the cortifoam. When I was first put on 9mg budesonide daily, I was also given two weeks of cortifoam. Everything was okay (not good but tolerable) until about 3-4 days after the cortifoam ran out. Pretty much all symptoms returned. In June I started tapering off the budesonide despite not having complete symptom relief. I also got a 6 week prescription of cortifoam. Things went back to being okay (1-2 BM per day, still urgent and completely unformed, but no blood mucous of pain). I haven’t used it in a couple days because my prescription ran out and I haven’t picked up a new one, and the bleeding and mucous is back.

I don’t know what to do. Obviously I will start back the cortifoam on Monday and will continue tapering off the budesonide (on 6mg, will taper down to 3 in another week).. but every time I stop the cortifoam I feel like I’m back to square one. How will I ever achieve remission if every time I stop the cortifoam the bleeding and discomfort comes back?

I will bring this up as I meet other gastros but I just wanted to see if other people have had similar experiences.

TIA
Posted 6/25/2018 2:08 AM (GMT 0)
Are you on any other meds? Mesalamines? Biologics? I'm sorry I haven't had that experience, so I don't really have much to share, but you should be on some other med to keep you in remission.
Posted 6/25/2018 4:56 AM (GMT 0)
kinda did a quick look at your previous posts so maybe i missed it, so ………. tell me what your diagnosis is -

but even w/o that info, my thought is your treatment has been less than stellar - you mentioned looking for another doc - what options do you have ?

as mentioned in another thread, you should be on some kind of oral and rectal maintenance drugs, and the add steroids after that if needed - the anti-inflammatory drugs do take some time to work and it doesn't seem like that happened - again, did i miss something ???
Posted 6/25/2018 9:50 AM (GMT 0)
^ive been diagnosed with ulcerative colitis but have no more specific diagnosis. When I went for a colonoscopy the inflammation was so bad that they couldn’t go much further than a certain distance. I don’t remember off the top of my head but I think it was 40 cm.

I’m currently on mezavant (4.8mg daily), 6mg of budesonide, and the cortifoam. The mezavant is an oral maintenance med, yes? What is a rectal maintenance drug? I was on salofalk for a while but then the dr took me off of it.

I already spoke to my GP about getting referred elsewhere and explained why. He is supportive and is referring me to another gastro. Looking forward to that initial consult all ove again lol. I live in a major city with a lot of big hospitals so I am hoping that there are lots of other options.
Posted 6/25/2018 1:15 PM (GMT 0)
yes, the mezavant is your maintenance med - sorry, i was confused by your current/previously listed meds -

are you in Canada ?
Posted 6/25/2018 1:39 PM (GMT 0)
Sounds like left-sided or proctosigmoiditis, like me.

Steroids are one of our most effective medications, but also one of the most dangerous when used longterm (causing osteoporosis, glaucoma, type ii diabetes, etc.), not a matter of 'IF" but more a matter of "WHEN".

If you cannot stay off of the steroids without flaring then you need stronger maintenance meds. That could be mezavant 4.8mg daily and Rowasa/pentasa/salofalk retention-enemas 4.0 grams daily. If that is not enough then you should be on biologics (humira/remicade) and/or immunomodulators (azathioprine/imuran/6MP) PLUS everything you are currently on. Once you get off of the steroids for 2-6 months without trouble, then consider reducing the meds. As you need less medication to initially achieve a remission then t o sustain it.
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