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Haven't been on in a while; things got crazy over here. I'm moving from Jordan to China in 2 weeks and that whole journey started last August!
Since I last posted and Tex gave me great advice about VtiD and Mag I've been doing really well. Until Tuesday (it is 3:30am on Thursday July 18th for me right now). I was eating some sesame chicken (with no known trigger foods) as leftovers when I realized I really didn't want to eat it, even though it tasted good. Didn't have an alternative, so I ate until full. Tuesday morning I had most of the contents of that meal in the toilet, but still pretty formed. Thought I'd take it easy, have some meat and veggies for dinner and not worry to much about it.
Wednesday morning at 1am it started. The flare. And it has been a doozy. I haven't had a flare this bad since before my diagnosis in 2017. I think I'm on the very first vestiges of the uphill slope, but man something got me. It could have been the duck I ate Tuesday evening at a restaurant, even though I specifically gave them all of my requirements. It could have been the sesame chicken, though I don't know how. It could have been a fruit bar I ate at a coffee shop Tuesday afternoon. Who knows. Which sucks.
Now I'm just trying to get the D under control so I can sleep more than 30 minutes at a time. Thank goodness for Smecta!
Anyway, just thought I'd share since I have been browsing the new posts incessantly for the last few hours trying to find some tips.
Sorry to hear that you're in a flare. With the added stress of a major move such as that, getting that flare under control may be really tough.
Do you have any possibility of getting a prescription for budesonide? Major flares can be real bears.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I'm pretty sure its available here without a prescription (most drugs are), but I've never used it. Fortunately, until now, I'd been able to get everything under control with diet changes, saccharomyces boulardii, and LDN. I've had some small flares, but nothing like this. Even the imodium isn't working for more than 8 hours.
eshuler wrote:Anything I need to know about budesonide?
Budesonide is an absolute lifesaver for many of us folks. Budesonide is absolutely the drug that allowed me to get into long term remission.
I understand why you and many of us try diet first. But if it doesn't work, try budesonide. It is a steroid that reduces inflammation big time and may get you out of this flare and back to where you were.
In addition to what tommyboywalker posted, You might pick some up, so you will have it in case you need it for the trip. Consider that it will probably take several days to begin working, if you take it. If you decide to take it, take the full dose (3 capsules per day), and reduce the dose at the first signs of constipation. Unless you're one of the few who are sensitive to budesonide, it will allow you to feel almost normal, while you're taking it. Some people gain weight while taking it.
If you're taking any thyroid medication, it will affect (raise) your TSH, so check with your doctor to see if or how much you need to decrease your thyroid med (if you're hypothyroid) while taking budesonide.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I am going to try it (though it was quite hard to find--and expensive--here). Tex, they only have the 9mg extended release tablets here. Should I still take 3 per day?
Hopefully this gives me another 2 or so years of remission! :)
Did some more research on the forum and then on google and realized I have the European version of Uceris, Cortiment MMX. So I will take one tablet for up to 8 weeks and see how it goes. :)
I really want to thank you very, very much for all of your hard work on this forum and your book. I like to research myself, but trying to find anything on MC was like wading through a garbage pile to find diamond. And you are the diamond!!! Seriously, without this forum I would be very, very lost.
I see that you've already resolved the question correctly. Yes, the daily dose of Uceris or Cortiment MMX is only one capsule or tablet (9mg) per day. And the interesting thing about this product is that it isn't activated until it passes well into the colon, so that there's no chance of it getting into the bloodstream to cause most the problems that are associated with most other corticosteroid medications, making it a much safer product to use. And the experiences of the members (so far at least) show that it is just as effective as conventional forms of budesonide for MC patients (without most of the side-effect risks).
Best of luck with your recovery, and your move. And thanks for the note of gratitude. I appreciate it.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Just a quick update: 5 days on Uceris and I slept through the night with no stomach pain! That doesn't happen very often even when I'm not in a flare! I am impressed. I'm not quite to "normal" as I'm still having some joint pain issues, but I feel those will resolve themselves soon, as well. I'm thinking of starting to wean slowly after 4 weeks, but using 8 weeks of doses to do that. Would that mess with my progress? Should I use the last 2 weeks of doses to wean down or should I do 8 weeks straight AND THEN start to wean?
Thanks for the update. Theoretically (or, rather according to the "experts"), weaning from a Uceris treatment is unnecessary. But this only considers the potential effect of corticosteroids on the adrenals. I have a hunch that it's still a good idea for MC patients to taper (as best you can, considering that a full dose is in each pill), in order to minimize the risk of causing a mast cell rebound that might trigger a relapse.
If it were me, I would use the last two weeks to taper, unless my bowel movements were still not back to normal. However, if constipation becomes a problem, I would begin to taper at that point. Hope the treatment works without a hitch.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I get that all the time with doctors, they say you can just stop a med and it always ends up wreaking havoc with my system, which is why I was thinking the last 4 weeks. But, I think I'll take your suggestion and start tapering at 2 weeks.
I was really hesitant to try this med because the last time I got glutened I ended up in a head to toe rash (Duhring's) and they put me on prednisone. I took 4 days of a 10 day course and had to stop because it was starting to shut down my kidneys and mess with my blood sugar. Thankfully nothing like that this time. And it has been a life saver.
Thank goodness for Smecta! 
