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Was I three days ago writing about how well my MC was behaving, I had a real nasty flare up, two days ago. I am still in the process of tampering down the medication, I open the capsules and take some of the granules out. Two days ago a lot more than normal, I think that caused the flare up, but then still, there have been days I forgot to take my medication at all and nothing like this time happened
First I wasn't sure if it was the MC or maybe a virus, you have to careful with tap water and some food here. But in my case that is almost impossible since I cook all my own food myself and only drink water from bottles.
The main sign, the gurgling, extremely loud, that was for me the sign it is MC and nothing else. I started in the late afternoon - early evening. And it was really severe. Much worse than the time before I started the medication and diet. It was really water what was coming out and I could go to toilet every half hour. At twelve at night I decided to take another capsule and then after three hours it stopped.
It is still frightening how thin the line still is, in being well and being ill. My god, like it was the other night, you don't want to be somewhere else than home near your own toilet.
I am almost 100% sure it was the level of medication, other courses could be a coffee (not decaf what I normally drink but I doubt it), a small box of candy with aspartame, but it was so little and a water ice cream but also in there nothing unusual in it.
In my case you would expect since the very good reaction to a very low dose of entocort (only one pill a day) from the start, I would be cured now. Or that I have a mild version or something like that (since others sometimes need three a day and then still have to wait for days to see a result, also that from the first day I start taking entocort I responded to it). I seem to be one, that only need a low dose of medication but need it for a long time (over a year now). And like I said and extreme thin line in between being almost 100% symptom free and having a severe flare up, seems to be the case in my situation. When it comes to the lever of medication.
My plans of quitting the meds are back in the fridge.
an MC flare up
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Harma,
I'm sorry to hear about the flare, but it's great that the Budenofalk works so effectively for you. Apparently you are much more responsive to budesonide that most people.
I keep having a nagging suspicion that there is still something in your diet, that is causing your need to rely on the drug, but I have no idea what it might be. It is almost always extremely difficult to track down that last, little problem in our diet.
I hope you can find it soon.
Tex
I'm sorry to hear about the flare, but it's great that the Budenofalk works so effectively for you. Apparently you are much more responsive to budesonide that most people.
I keep having a nagging suspicion that there is still something in your diet, that is causing your need to rely on the drug, but I have no idea what it might be. It is almost always extremely difficult to track down that last, little problem in our diet.
I hope you can find it soon.
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.
Dear Harma
We are twins! I was just about to start a post about going into a new flare three days ago. I hope you do not mind if I post it here to keep you company....
On Saturday the watery D started. First day X3, yesterday and today X5 per day and still counting..... In fact it is the worst one for over a year. I am doing 2 Pepto B a day and maybe should increase it. So far it seems to do nothing but turn the "water" black (or in the last case dark green).
I keep looking at the the pack of Entocort, but will not go back on that yet - I have now been off it for 55 days.
I took a look at my "winning the poo" diary and what might have caused it. Apart from a little bit of egg in the rice on Friday, last Thursday and again on Friday I had sorbet at a restaurant. Who knows what was in it. Possibly egg white and, of course, lots of fructose, and I wonder if anything else??
Harma, when you say "water ice cream" I assume it is the same as sorbet. (But, unlike me, if you made it yourself there would be no egg white in it.)
The other thing I noticed was that for three days before the flare started my poo (mainly firmish) was very light brown - normally it was browner.
Lets hope tomorrow is a better day for both of us.
All the best, Ant
We are twins! I was just about to start a post about going into a new flare three days ago. I hope you do not mind if I post it here to keep you company....
On Saturday the watery D started. First day X3, yesterday and today X5 per day and still counting..... In fact it is the worst one for over a year. I am doing 2 Pepto B a day and maybe should increase it. So far it seems to do nothing but turn the "water" black (or in the last case dark green).
I keep looking at the the pack of Entocort, but will not go back on that yet - I have now been off it for 55 days.
I took a look at my "winning the poo" diary and what might have caused it. Apart from a little bit of egg in the rice on Friday, last Thursday and again on Friday I had sorbet at a restaurant. Who knows what was in it. Possibly egg white and, of course, lots of fructose, and I wonder if anything else??
Harma, when you say "water ice cream" I assume it is the same as sorbet. (But, unlike me, if you made it yourself there would be no egg white in it.)
The other thing I noticed was that for three days before the flare started my poo (mainly firmish) was very light brown - normally it was browner.
Lets hope tomorrow is a better day for both of us.
All the best, Ant
oh ant so sorry you too. But good news that it went well for 55 days.
Tex about my diet, I thougt about that too, only thing I can come up with is my vitamin supplements, but I checked checked and double checked them and they are all soy, gluten and milk free. In my diet is impossible since I eat only fruit, vegetables. meat, fish and rice. I skipped the aspartame and stuff, only drink juice, water and tea (and now and than decaf esspresso), sometimes but not often dark chocolate which I check for soy/milk free.
The way it was yesterday also looked like a reaction to something I ate that day. Maybe the diet needs just more time. But in general I have seen so much improvement over the year. And I am not on a diet yet for a whole year.
Maybe there was something in the Candy or ice cream (Ant I meant water icecream like the one you buy on stick) and I had just a very quick reaction to it.
Another reason for the flare up (in combination with the lower dose of medication) is the antibiotics I took about three weeks ago. The only time I remember having this kind of D was when I was using a probiotic. Than also the MC got worse than ever.
Tex about my diet, I thougt about that too, only thing I can come up with is my vitamin supplements, but I checked checked and double checked them and they are all soy, gluten and milk free. In my diet is impossible since I eat only fruit, vegetables. meat, fish and rice. I skipped the aspartame and stuff, only drink juice, water and tea (and now and than decaf esspresso), sometimes but not often dark chocolate which I check for soy/milk free.
The way it was yesterday also looked like a reaction to something I ate that day. Maybe the diet needs just more time. But in general I have seen so much improvement over the year. And I am not on a diet yet for a whole year.
Maybe there was something in the Candy or ice cream (Ant I meant water icecream like the one you buy on stick) and I had just a very quick reaction to it.
Another reason for the flare up (in combination with the lower dose of medication) is the antibiotics I took about three weeks ago. The only time I remember having this kind of D was when I was using a probiotic. Than also the MC got worse than ever.
Ant,
Are you aware that the "magic number" for weaning off Entocort is 8 weeks? That's 56 days, of course. Basically, if you can maintain remission by diet alone, for 8 weeks after discontinuing Entocort, then you are home free. Up until 8 weeks, though, you are still in a period of "probation". I've forgotten where we originally obtained that number, but it has seemed to be very reliable, over the years.
Harma,
I'm guessing that the "water ice cream" that you refer to, is what we call a "popsicle" here in the States.
Yes, the antibiotic may have been the cause of the problem, because it takes several weeks, (at least), for bacteria to begin recolonizing the gut, after they are exterminated by an antibiotic. Therefore, it's very possible that you may have developed a "bad" population of bacteria in your gut, (IOW, an infection). If the D was worse than it ever was, the problem may be a C. diff infection, because if my memory is correct, you took a form of amoxicillin, and amoxicillin is the antibiotic most frequently associated with causing a C. diff infection.
What I don't understand, is how budesonide could stop the D, if you have a C. diff infection. Budesonide should have no effect on a C. diff infection. Maybe it was only a minor infection, and it cleared up on it's own, (with the help of your immune system). Still, if it returns, I would get a C. diff test, before trying anything else, especially if there is any blood in the stool. As long as you don't have any D, though, there is nothing to be concerned about.
Tex
Are you aware that the "magic number" for weaning off Entocort is 8 weeks? That's 56 days, of course. Basically, if you can maintain remission by diet alone, for 8 weeks after discontinuing Entocort, then you are home free. Up until 8 weeks, though, you are still in a period of "probation". I've forgotten where we originally obtained that number, but it has seemed to be very reliable, over the years.
Harma,
I'm guessing that the "water ice cream" that you refer to, is what we call a "popsicle" here in the States.
Yes, the antibiotic may have been the cause of the problem, because it takes several weeks, (at least), for bacteria to begin recolonizing the gut, after they are exterminated by an antibiotic. Therefore, it's very possible that you may have developed a "bad" population of bacteria in your gut, (IOW, an infection). If the D was worse than it ever was, the problem may be a C. diff infection, because if my memory is correct, you took a form of amoxicillin, and amoxicillin is the antibiotic most frequently associated with causing a C. diff infection.
What I don't understand, is how budesonide could stop the D, if you have a C. diff infection. Budesonide should have no effect on a C. diff infection. Maybe it was only a minor infection, and it cleared up on it's own, (with the help of your immune system). Still, if it returns, I would get a C. diff test, before trying anything else, especially if there is any blood in the stool. As long as you don't have any D, though, there is nothing to be concerned about.
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 thought also about C. diff infection, but really seems to be MC. The thing that I suspect now is coffee (besides a to low dose of entocort). I had a normal espresso that day and looking back it all started after the coffee. Yesterday I had to decaf again and also felt not very good. Not as bad as the last time. And also that is the only thing that is different in my whole food pattern than when I was in Holland, the coffee. Of course it is just a guess, and it is quite unusual here, that coffee causes problems. But for now I will stay away from coffee for a while.
The only thing left for me at starbuck is orange juice, since they are out of tea
The only thing left for me at starbuck is orange juice, since they are out of tea
Harma and Ant,
So sorry to hear about the flares.
It can be so discouraging, can't it? But keep focusing on the incredible progress you have made, and it will be better before you know it. It's amazing how well both of you have done - and living in Jordan and Hong Kong to boot!
In my experience flares were almost always due to some contaminant, although stress certainly can play a role too. I would probably pop some more Entocort temporarily if it were me, since sometimes flares seem to develop a life of their own and continue for a while. It's almost like once the inflammation takes hold, it perpetuates itself.
Please keep us posted. And feel better!!!!!
Love,
Polly
P.S. Good question, Tex. My thought would be that a steroid can reduce begin to reduce inflammation no matter what the cause. But in the case of C. diff. only to a certain point perhaps. In the long run, it would make the infection worse as the bugs multipled and damaged even more gut surface.
So sorry to hear about the flares.
It can be so discouraging, can't it? But keep focusing on the incredible progress you have made, and it will be better before you know it. It's amazing how well both of you have done - and living in Jordan and Hong Kong to boot!In my experience flares were almost always due to some contaminant, although stress certainly can play a role too. I would probably pop some more Entocort temporarily if it were me, since sometimes flares seem to develop a life of their own and continue for a while. It's almost like once the inflammation takes hold, it perpetuates itself.
Please keep us posted. And feel better!!!!!
Love,
Polly
P.S. Good question, Tex. My thought would be that a steroid can reduce begin to reduce inflammation no matter what the cause. But in the case of C. diff. only to a certain point perhaps. In the long run, it would make the infection worse as the bugs multipled and damaged even more gut surface.
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Dear Tex and Polly,
Thanks for your concern. Today was a bit better. 5 BMs , but no watery D, just loose, undigested looking and unformed. All pale brown and acidic (baboon bum material). I did not take any Pepto today. I am still resisting the Entocort, but wonder if I go back on it what level I should take? (I cannot ask my GI, 'cos he would say I should have tried the Salofalk).
Oh well, let's see what happens tomorrow.
Harma, like you I am off the espressos for the time being
I came off them a few days before the flare attack due to some mild vertigo, although that is now better.
Best, Ant
Thanks for your concern. Today was a bit better. 5 BMs , but no watery D, just loose, undigested looking and unformed. All pale brown and acidic (baboon bum material). I did not take any Pepto today. I am still resisting the Entocort, but wonder if I go back on it what level I should take? (I cannot ask my GI, 'cos he would say I should have tried the Salofalk).
Oh well, let's see what happens tomorrow.
Harma, like you I am off the espressos for the time being
I came off them a few days before the flare attack due to some mild vertigo, although that is now better.Best, Ant
Ant,
That sounds like progress, all right. Light brown is better than pale or greenish, because as the color fades back to green, that indicates rapid transit. (IOW, the green color comes from unconverted bile, and the longer the bile stays in the intestines, the more the color changes toward the characteristic normal brown color.
Unless you are unusually sensitive to budesonide, (like Harma), you would probably need a 6mg or better dose, to get rapid resolution of symptoms, but you might be able to quickly taper to a 3mg dose, soon after remission appears. By this point in time, you probably understand your body's response better than anyone else, though, so you should be the judge.
Best of luck with this.
Tex
That sounds like progress, all right. Light brown is better than pale or greenish, because as the color fades back to green, that indicates rapid transit. (IOW, the green color comes from unconverted bile, and the longer the bile stays in the intestines, the more the color changes toward the characteristic normal brown color.
Unless you are unusually sensitive to budesonide, (like Harma), you would probably need a 6mg or better dose, to get rapid resolution of symptoms, but you might be able to quickly taper to a 3mg dose, soon after remission appears. By this point in time, you probably understand your body's response better than anyone else, though, so you should be the judge.
Best of luck with this.
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.
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Linda in BC
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Dear Ant and Harma:
Glad you to hear are getting better, Ant, and Harma, how are you doing? When you first said "water icecream ", Harma, I thought you meant that gelato they sell in malls and is made from a mix. Some of it is "water- based", other milk based, but from experience I learned this summer that the water based still has lactose/casein in the mix.
Tex, congrats for figuring out that Harma was talking about a popsicle!!! I was
Linda
Glad you to hear are getting better, Ant, and Harma, how are you doing? When you first said "water icecream ", Harma, I thought you meant that gelato they sell in malls and is made from a mix. Some of it is "water- based", other milk based, but from experience I learned this summer that the water based still has lactose/casein in the mix.
Tex, congrats for figuring out that Harma was talking about a popsicle!!! I was
Linda"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Yes sometimes I just translate the Dutch version of something to English what not seems to work always. Yes I meant a Popsicle, learned a new word again today. In Dutch you call it a "water ice-cream" and the other, sorbet based ice-cream. I am recovering quite well. I am back on one full pill now and will stay on it for a while. I still don't get it, I can't think of anything else than I a food contamination, like when celiacs have sometimes when they eat something with gluten. It was in instant reaction so quick, not that the day before already something was going on. For sure I will stay off coffee and that Popsicle and the kind of candy I bought that day. It looks like as long as I stick to basic food (4 veggies, 2 fruits, canned fruit, rice, chicken, fish, juice, tea and water) I am doing fine.
Ant, I can understand, once of entocort, you are not looking forward to start again, but like Polly is saying, before a flare starts to live a life of its own, maybe it is does not really over soon, starting again is maybe not a bad idea. But I hope you survive without it, of course.
Maybe things will get better in future, but the way it looks now to me, the choice is feeling healthy and almost no bowel complaints at all but being on a strict diet or have a broader choice of food with more complaints and/or a higher dosage of medication. I think I prefer the first one.
Chocolate is easy here, since LINDT does contain soy here (except one very expensive kind), no more coffee (cappuccino was already impossible here since I can only drink it with rice milk) the rice milk I found here contains carrageen or guar-gum (which I can't stand either) and for other reasons I don't drink anyway, alcohol makes me tired and I have a hangover of only two glasses of wine. All the candy does contain corn starch or other corn stuff. Sooo.......that's an easy one. Food has become more something, like drinking water when I am thirsty.
But as long as I am free of the MC symptoms I can live with it.
Ant, I can understand, once of entocort, you are not looking forward to start again, but like Polly is saying, before a flare starts to live a life of its own, maybe it is does not really over soon, starting again is maybe not a bad idea. But I hope you survive without it, of course.
Maybe things will get better in future, but the way it looks now to me, the choice is feeling healthy and almost no bowel complaints at all but being on a strict diet or have a broader choice of food with more complaints and/or a higher dosage of medication. I think I prefer the first one.
Chocolate is easy here, since LINDT does contain soy here (except one very expensive kind), no more coffee (cappuccino was already impossible here since I can only drink it with rice milk) the rice milk I found here contains carrageen or guar-gum (which I can't stand either) and for other reasons I don't drink anyway, alcohol makes me tired and I have a hangover of only two glasses of wine. All the candy does contain corn starch or other corn stuff. Sooo.......that's an easy one. Food has become more something, like drinking water when I am thirsty.
But as long as I am free of the MC symptoms I can live with it.
Harma, glad you are doing better and I think you've got your act together! I would rather have very few safe choices to eat and do well, then to "expand" my food intake and have problems. I've taken that approach with my own diet, very basic, very plain. I often think about Tex when he was in his recovery stage, he took 18 months while he slowly added items back into his diet.
Ant, my GI would agree with Polly in taking the Entocort. I was told that if I had a flare, to immediately go back on the high dosage of Entocort and then taper. It makes sense, nip it in the bud and then reduce the dosage. Most of all I hope you are feeling better. I hate for you to have had this relapse. This disease sure can humble one!! Love Ginny
Ant, my GI would agree with Polly in taking the Entocort. I was told that if I had a flare, to immediately go back on the high dosage of Entocort and then taper. It makes sense, nip it in the bud and then reduce the dosage. Most of all I hope you are feeling better. I hate for you to have had this relapse. This disease sure can humble one!! Love Ginny
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
Dear Tex, Linda, Gloria, Harma and Ginny,
Thanks for all your responses. It is so good to get them when feeling a bit down.
Anyway, today's score was 3 BMs: all pale; two were undigested and loose; one was D (but not too watery).
So slight improvement I think. I did not take Pepto today so that is two days without it. And I have not yet taken Entocort.
From what you have advised, if tomorrow I sense any relapse I will go back onto Entocort, but for now I am sticking to a simple diet and hoping that it will end the flare. It is a test for me to see if I can control without the meds. Part of my motivation is my desire to keep off steroids due to osteoporosis.
Gloria, yes I had been gradually reintroducing some limited fruit - dried apricots and cherries, fresh strawberries, avocado (if that is a fruit??) and of course the raspberry sorbet that probably "dun me in"
Good night all. God Bless, Ant
Thanks for all your responses. It is so good to get them when feeling a bit down.
Anyway, today's score was 3 BMs: all pale; two were undigested and loose; one was D (but not too watery).
So slight improvement I think. I did not take Pepto today so that is two days without it. And I have not yet taken Entocort.
From what you have advised, if tomorrow I sense any relapse I will go back onto Entocort, but for now I am sticking to a simple diet and hoping that it will end the flare. It is a test for me to see if I can control without the meds. Part of my motivation is my desire to keep off steroids due to osteoporosis.
Gloria, yes I had been gradually reintroducing some limited fruit - dried apricots and cherries, fresh strawberries, avocado (if that is a fruit??) and of course the raspberry sorbet that probably "dun me in"
Good night all. God Bless, Ant
