Sorry to hear that. It certainly does run in families. I believe my mom had it, but of course back in those days, she was never even tested for it, and I didn't even realize there was such a thing as microscopic colitis. We live and learn.
Tex
When should I start seeing improvement?
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My PCP prescribed it for me on a routine checkup. I did not go into a lot of detail. I think I just said for D due to the MC.MomLady wrote:Thanks for that tip. I was thinking maybe it was time to try the cholestyramine. I don't have a relationship with a GI doc currently (last guy retired), but maybe my regular doc would prescribe it. Lord, will that be a long conversation to explain why I want it, and doubtless they will want to see me, etc.
Really appreciate the super fast responses when I am feeling so lost on this! Not sure what to eat now in the meantime.
He said no problem, he prescibes it all the time for people with D.
I would keep your conversation simple.
It worked really well for me. I had an unrelated side effect about 30 days in and had to stop it but it is pretty benign stuff and like I said I had solid stool in 1 - 2 days.
Dr. Smith--
"I've been eating a simple diet for 10 weeks and hoped to see improvements from that but I'm still having WD and now seeing yellow WD (describe your symptoms) Dr. Smith, what would be your thoughts on giving cholestyramine a try? "
The vibe I got from my PCP was it seemed like he prescribed it a lot for people with D, many who use it for years.
I don't think he would have prescribed the budesonide, he would have referred me to a gastro at that point.
"I've been eating a simple diet for 10 weeks and hoped to see improvements from that but I'm still having WD and now seeing yellow WD (describe your symptoms) Dr. Smith, what would be your thoughts on giving cholestyramine a try? "
The vibe I got from my PCP was it seemed like he prescribed it a lot for people with D, many who use it for years.
I don't think he would have prescribed the budesonide, he would have referred me to a gastro at that point.
As someone who depends on this stuff, I’m going to disagree with Tex on how quickly cholestyramine works.
I doubt a few days will give you a miracle cure. Seriously, I stopped taking it 2 times over a year or so...thinking it wasn’t helping me. Wrong !
I just noticed less rolling, churning, gurgling guts. Then poop started slowly getting better.. I guess you could argue that I am some sort of freakish outlier with this issue...maybe so. But I’d argue that it’s easier to overshoot it into constipation then back down. And by constipation, for me that basically means deer pellets, I’ve never not pooped for like three days or anything. A couple months ago I actually didn’t poop for a whole day
..wow!
Anyway, that’s my 2 cents worth. And you may be surprised at how your PCP is open to prescribing it for you. It’s becoming more mainstream and known.
Laine
I doubt a few days will give you a miracle cure. Seriously, I stopped taking it 2 times over a year or so...thinking it wasn’t helping me. Wrong !
I just noticed less rolling, churning, gurgling guts. Then poop started slowly getting better.. I guess you could argue that I am some sort of freakish outlier with this issue...maybe so. But I’d argue that it’s easier to overshoot it into constipation then back down. And by constipation, for me that basically means deer pellets, I’ve never not pooped for like three days or anything. A couple months ago I actually didn’t poop for a whole day
..wow!Anyway, that’s my 2 cents worth. And you may be surprised at how your PCP is open to prescribing it for you. It’s becoming more mainstream and known.
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Woo hoo, I now have a box with 60 packets of the Sandoz (with sucrose) cholestyramine. The doc just called it in with no further discussion than my email, to my amazement. 1 packet 2x a day was prescribed but I guess we'll see if that dose works or not. I wasn't prepared for the price ($145), but I guess I'll deal with that later.
Update on using cholestyramine for the last 10 days. I take a packet of Sandoz regular in the AM before first meal (11 am) and PM before bed (usually 9:30 ish). Good news is there are overall fewer trips to the bathroom, and the terrible watery/explosive D is gone. But I am definitely still very loose and going many times a day, now sometimes waking up at night to do so. I am guessing I might have to use more powder, but I'm not sure how much to step it up. I am guessing my PCP will have no clue how to proceed with this situation, and I wanted to make an "informed suggestion" to her on how much to increase, based on folks' experiences here. She wrote me a Rx for 60 packets, a 1 month supply of 2x a day.
I am still wondering what is the mechanism of my increase of symptoms. IE why did my D get more frequent, urgent, and watery, with gurgling and stuff, AFTER I went on a limited diet of what I hoped would be safe foods? All I can think of is moving to a nearly all carnivore diet required more bile to digest that protein and fat, and somehow exposed a possible problem I have in making too much bile anyway, and then it all went off the rails? It feels pretty bad to have made things worse by trying to eat smarter!
I am still wondering what is the mechanism of my increase of symptoms. IE why did my D get more frequent, urgent, and watery, with gurgling and stuff, AFTER I went on a limited diet of what I hoped would be safe foods? All I can think of is moving to a nearly all carnivore diet required more bile to digest that protein and fat, and somehow exposed a possible problem I have in making too much bile anyway, and then it all went off the rails? It feels pretty bad to have made things worse by trying to eat smarter!
This is just a guess, but one or more of the foods that you "selected" for your diet may be causing your immune system to produce antibodies against it. You may be reacting to the duck eggs, for example, or the bacon.
Another possibility (regarding the cause of the increased diarrhea) is that since you've probably drastically reduced your total fat intake, this has contributed to BAM, because of the availability of excess bile. This would especially be possible if you have had previous gallbladder surgery.
Laine (HockeyMom) is the expert on cholestyramine, but I'm going to guess that she would suggest increasing the dose by a packet per day. And if that doesn't do the job after a week or two, increase it by another packet (and so on until you find the best dose for your needs).
Tex
Another possibility (regarding the cause of the increased diarrhea) is that since you've probably drastically reduced your total fat intake, this has contributed to BAM, because of the availability of excess bile. This would especially be possible if you have had previous gallbladder surgery.
Laine (HockeyMom) is the expert on cholestyramine, but I'm going to guess that she would suggest increasing the dose by a packet per day. And if that doesn't do the job after a week or two, increase it by another packet (and so on until you find the best dose for your needs).
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.
Thanks as always for your speedy reply. FWIW, on my carnivore-ish diet of (hopefully safe) meats, I had more fat than usual, at least that is my impression. However, I should probably test the lamb (gosh, I hope that's not reactive as I actually like it), duck eggs, turkey, and pork bacon (which I had given up for 3 days earlier, but maybe I need a longer test than that ??).
Gluten antibodies have a half-life of 120 days, but antibodies to virtually all other foods have a half-life of only 5 or 6 days. So if you have avoided gluten for at least several months (and never cheated), then you should be able to test other foods. ideally, if you avoid a food (other than gluten) for 5 days and then eat it again, you should be able to detect a reaction (if there is one). If there's no reaction, the food is probably safe, but occasionally it's necessary to eat that food for 3 days in a row without any reactions, in order to verify that it's safe. Test only one suspect food at a time before moving on.
Tex
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.