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Posted 10/10/2020 3:38 PM (GMT -5)
I need to slow down my D, I'm in a severe flare and the frequency is draining the heck out of me. I don't have control of my disease. Currently on 40mg of prednisone. The situation is complicated, but I moved over the summer to a new province and it has taken FOREVER to see a GI doctor here. So I am without care. I also don't have a drug plan, so no fancy biologics for me. My new GP here has me on prednisone in the mean time.

I went to the ER here and it was scary. The doctor on call didn't really know what he was doing. When I asked if he could order a CRP test to see how high my inflammatory markers were, he asked why anyone would do that. He then sent me home, saying I'm not severe enough for admittance. I may end up back in the ER anyway, I'm getting so weak. It's a merry go round.

What I want to know is the statistics on toxic megacolon and loperamide. I took some today and my energy is better because transit time slowed right down, so I can absorb more food. But I imagine it's not good to prevent all that gross mucousy and bloody D from coming out. I do go to the bathroom still throughout the day, it's just way less.

I have pancolitis, so I guess that puts me at higher risk.

Has anyone here with severe UC taken loperamide before, at least for a while?

Honestly this is a nightmare and my options aren't good. Please go easy on me, I'm really not trying to harm myself, but I need the D to slow down before I can't even get out of bed.
Posted 10/10/2020 4:00 PM (GMT -5)
I was on it in the hospital because of incompetent doctors not knowing what else to do. It really didn’t help all that much. Like you said slowed it down a little but not all that much

I don’t know about where you are but here in the US biologics administered by infusion ( like remicade and entyvio) are covered under the medical side of the plan instead of prescription because they are administered by a doctor or hospital type setting.
Posted 10/10/2020 9:10 PM (GMT -5)
All I want to know is if loperamide is actually dangerous or not, at the OTC dosage (not the Rx dosage).
Posted 10/11/2020 6:41 AM (GMT -5)
i don't think anyone here has the expertise to say whether or not it is dangerous for you - all we can do is quote the same facts that you have read, which imo, are questionable at best -

i have used it since almost the beginning of my uc - and i'm still here -

for me, it was worth the small perceived risk to get done whatever it was that i needed to get done - i didn't use it for the fun of it -

be smart and do what works for you -
Posted 10/11/2020 6:44 AM (GMT -5)
I googled around a bit (because i was curious about the answer to this) and it seems it would be risky if you had a c diff infection, as the loperamide stops the bacteria from being eliminated, allowing them to do more damage to the colon and hence increasing the odds of toxic megacolon.
Posted 10/11/2020 6:45 AM (GMT -5)
just curious ------- how did you fail mesalamine ?
Posted 10/11/2020 11:51 AM (GMT -5)
Since I don't have infectious colitis it's probably safe, and I've used it before in other flares... just not at the beginning of a flare when things are at their worst. I am finding it helps with absorption.

Mesalamine failed because it made my symptoms 10x worse. I also used the oral version and it caused stomach bleeding. It was a nightmare.

For some reason my UC does not accept rectal anything. Even saline. If I put something up there, my inflammation and bleeding explode. Nobody has ever been able to explain this to me. So, rectal meds are not an option.
Posted 10/11/2020 12:58 PM (GMT -5)
well, you're in quite a pickle then ;-)

and diet changes ------ any luck there ?

and ya, GI's have a hard time with UC quite often - ER's ? LOL !

TT
Posted 10/11/2020 6:26 PM (GMT -5)
have you tried slippery elm?
Posted 10/11/2020 6:27 PM (GMT -5)
and what about simple carbon? it's safe and absorbs bacteria
Posted 10/11/2020 6:32 PM (GMT -5)
and a probiotic with saccharomyces boulardii (there is a Polish probiotic Enterol which is specifically for diarrhea, it contains boulardii), it's very good and cheap
Posted 10/11/2020 7:21 PM (GMT -5)

TroubledTurds said...
well, you're in quite a pickle then ;-)

and diet changes ------ any luck there ?

and ya, GI's have a hard time with UC quite often - ER's ? LOL !

TT

This flare has been weird, and going on for over a year. I was really recovering, but I couldn't reduce the 12 hour transit time, no matter how hard I tried. Normally when my UC is healing, transit time just gets better and better until it's normal again. This time, the recovery stopped at 12 hours. Going that often continued to irritate my colon, and I think that's what partially started up this flare again.

It's been suggested that the quick transit time is because maybe I have some kind of small bowel problem... maybe damage? Or maybe another condition that affects the small bowel, like SIBO. Can't get imaging on it without a GI doctor though. My last GI back in Vancouver was an idiot... he wouldn't do any small bowel investigation. He just said that I have UC and need to accept that, even though info on my small bowel could indicate a different treatment course. Some doctors are just infuriating.

I should've taken loperamide before this flare kicked back into high gear again, back when transit time was naturally 12 hours. Now I am dealing with severe UC if I even stop taking it.
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