I was going to start a new thread, but this really is about weaning off Entocort. I haven't had any D or anything close to D since I eliminated green beans from my diet three weeks ago.
I'm going to begin reducing my Entocort dosage from 6 mg to 3 mg next week. I'm a little worried that Entocort is shielding me from even more of my intolerances. For example, I seem to have a "softer" stool after I've eaten blueberries. Or perhaps it's all the fresh fruit I'm enjoying this summer. I've always had a bit of a reaction to fresh fruit, but I think a lot of people do, don't they? That doesn't mean I'm intolerant to it, does it? Since I've had to give up green beans, I've started eating more broccoli and cauliflower. They would cause a softer stool, too. I'm wondering what type of BM should cause me to be concerned.
For those who have achieved remission:
What type of BM caused you to suspect an intolerance? Out and out D, of course, but what if Norman wasn't quite as solid as you'd like? Do you worry about that? How bad does it need to get to cause concern?
That's an interesting question. Though I'm certainly no coprophiliac, I suppose that most of us are somewhat of a coprologist, out of necessity. Accordingly, I've always considered somewhere about halfway between #3 and #4 on the BSS to be more typical for homo sapiens, (though it may well be true that #4 is more desirable). LOL.
Since motility, the amount of fiber, and various other constituents, significantly affect stool texture, and consistency, I don't worry too much about it until #7 shows up. At that point, there's not much question about it. Remember way back before the days of MC, when you would eat certain foods, even though you knew that they would cause you to have D for a day or so? It was no big deal, back then, and you went ahead and ate them anyway. Right? Those foods will almost surely still affect you the same way, but that shouldn't necessarily mean that your remission is in jeopardy, (unless, of course the foods we're talking about here happen to be one of your trigger foods for MC).
Anyway, that's the way I try to look at the situation. I try to avoid a Chicken Little outlook, (the-sky-is-falling), until proven wrong.
Blueberries shouldn't be a problem, (but then, neither should green beans, for that matter). Dried blueberries have a long history of use in Sweden as a treatment for diarrhea. Dr. Varro Tyler, in his book, Herbs of Choice, recommends either chewing dried blueberries, or making a tea by boiling crushed dried blueberries for about ten minutes.
Not only do blueberries contain tannins, which act as an astringent, (they contract tissue, and reduce inflammation and the secretion of liquids and mucous), but they also contain anthocyanosides, which have antibacterial properties, as well as being a good source of antioxidants. And, to offer something for everyone, blueberries are a good source of the soluble fiber pectin, which means that they can also help to prevent constipation. The usual disclaimer is probably in order, though - YMMV.
Good luck with the reduced dosage rate.
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.
Yes, Tex, I remember occasionally having looser stools pre-MC and I never worried about it. I thought it was unusual or interesting, but it didn't cause me any anxiety. I suppose I should have the same attitude now. I love blueberries and eat them all year because they are so beneficial. I'm hoping you're right and they won't cause me problems once I'm off Entocort.
I cooked my first batch of green beans from my garden for my DH. It seems so strange that I can't eat them anymore.
BTW, I had to look up the meaning of the word "coprophiliac." This is what Webster's said:
marked interest in excrement; especially : the use of feces or filth for sexual excitement. With that definition, I'm glad you added a disclaimer. LOL
Gloria
You never know what you can do until you have to do it.
Been away with work and a glorious week long solo canoe trip on the Colorado river. So amazing to feel so good after years of problems. So wonderful to comfortably enjoy what I eat while doing them.
My digestion made a remarkable transformation when I quit eating green beans. Posted several times about it. If I am not mistaken Polly found the same thing along with several others. Marsha is the only other one I can think of right now but their may have been others. It had to do with Lectins. Try doing a search on Lectins. Lots of useful stuff. I hope for your sake. It helped me despite those with other opinions.
At the time I was amazed at how I had missed it since all the other legumes were a problem . Just never thought of green beans as a legume. Duhhhhh!
Your list is very similar to mine .
No grains -Wheat , rye, barely, oats rice, corn
Citrus fruits and juices has been a problem for many of us.
No night shades - Potatoes, tomatoes , eggplant,Green peppers As you have found no tomato juice or tomato sauce
No legumes- any type of bean , peanuts are legumes
I wish I could eat corn but if wishes were horses......
Did you know that many mixed nuts are dusted with wheat so they brown. In my early learning curve I had to discover that the peanuts were a legume. Not hard to eliminate mixed nuts. Woner about the oils they are cooked in.
The oxcilic acid In spinach and many other greens is a problem
I love snapkingly delicious apples dipped in almond butter. I hope that some day you will also be able to do these things. It took me a while.
I don't think problems with green beans , from my point of view , is very strange. Any more than the the problem I have with tapioca flower in gluten free breads that takes them off may radar.
I can be happy healthy and productive despite it all.
I've been reducing the Entocort on the following schedule:
Week 1 - reduced from 2 pills every day to one pill one day, two pills the next day
Results: Continue to have solid or normal BMs daily.
Week 2: reduced to 1 pill per day.
Results: continue to have 1-2 solid or normal BMs per day.
Exception: had D in the evening after I drank orange juice in the morning.
How much longer should I stay on 1 pill before reducing to 1 pill every other day? I'm assuming that my colon is healing now that I'm not constantly irritating it with green beans. My understanding is that the Entocort is only suppressing symptoms; the healing that occurs is due to removing trigger foods. Would it be best to stay on 1 pill daily for another week? Should I be testing suspect foods right now or should I wait until I'm completely off the Entocort?
Another observation: even though I tested positive for yeast intolerance, for several months I've been eating yeast bread regularly (1-2 times per week) without any apparent reaction. I usually wait 3-4 days between eating it, but occasionally have eaten it after 2 days. Does this mean I'm no longer intolerant to it?
Those are some tough questions. I hope you can get some responses from members who have been through that program. Probably, though, since we're all different, it may boil down to what you're most comfortable with.
Regarding trying suspect foods, personally, I believe that the longer our digestive systems heal, the better the chances of tolerating a once-troublesome food. On the other hand though, if a test, (challenge), results in a reaction, it would probably be a milder reaction, with some Entocort remaining in your system.
Though I'm not aware of any research to document this, I have read expert opinion claiming that we only test positive to yeast intolerance, if we actually have a yeast overgrowth at the time of the test. That infers, (by default), that if we do not have a yeast overgrowth, then we are not yeast intolerant. I believe this to be the case, anyway, and while I'm sure there are others who will disagree with me, I have never seen any proof to the contrary. What this position is saying, of course, is that the antibodies that are generated due to yeast, are being generated due to the yeast growing in our bodies, rather than yeast that we are ingesting.
You seem to be clicking right along with your program.
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've had a busy week and haven't been posting much. I'm attending a genealogy conference in Chicago until Thursday and am commuting by train and bus. I'm glad I never had to commute far when I was working. It's pretty tiring.
I'm sorry to report that I haven't been doing as well this past week. Norman hasn't visited at all. I could explain his absence a couple of days when I ate mashed potatoes while eating out. But the other days I've been eating my normal fare. I'm even packing a lunch and bringing it to the conference each day.
For the last couple of days, I've eliminated chocolate again, but I haven't noticed a difference. I've been enjoying the fresh fruits of the season. These weren't a problem while I was on 2 Entocort pills per day, nor when I alternated between 2 pills and 1 pill. Now that I'm down to 1 pill per day, I'm having soft stools.
Thus far, eliminating the chocolate hasn't produced any Normans. I hate to be back to the guessing game when I thought I had this figured out. I'm getting discouraged. Is it possible that my colon is still very sensitive to fiber, fruits and the like? I stopped eating green beans July 1 and had Normans consistently from then until August 13. I've been on 1 pill per day since August 3, so after 10 days of being on 1 pill, Norman disappeared.
Should I go back to 2 Entocort pills per day to give my colon a longer chance to heal? There are a couple of people on the board who take 2 pills per day as a maintenance dosage. Did you have the same problems I'm having when you went down to a lower dose? I appreciate any insight you might have.
Gloria
You never know what you can do until you have to do it.
You may have to pose your questions on the Main Message Board. For some reason or other, a lot of members on medications don't seem to read this forum, (at least they don't often post here). Maybe they consider this to be a diet forum, and they're not interested.
Soft stools are not necessarily D, (at least they are not necessarily due to an MC reaction). There's a very good chance that your problems are due to the fruit. I had to eliminate virtually all sugars and fiber from my diet, in order to allow my gut to heal. Obviously I couldn't cut all of it out, but I reduced it to a bare minimum. Fruit is high in both, and more than that, most fruit contains sorbitol, a natural laxative, and some fruit contains a lot of it, (peaches, for example). Sorbitol still gives me D, FYI, although it never bothered me before my symptoms started.
Other than sorbitol, though, (and possibly the other sugar alcohols), I seem to be able to handle any other form of sugar, these days. I had a very serious problem with the leaky gut syndrome, though, (presumably because of a long history of excessive sugar consumption). The fact that sugar is one of the primary triggers for LGS, (second to alcohol, I believe), may be why sorbitol has such a potent effect on many of us - it's a double whammy, since it's both an alcohol, and a form of sugar. That observation is strictly mine, (I haven't seen it documented anywhere), but it certainly seems logical to me. YMMV.
Note that unlike other sugars, only 10 to 30 % of sorbitol is absorbed through the intestinal walls. That means that the rest of it is left to do whatever mischief it might choose to do, as it traverses the rest of your intestinal tract. It's this residual 70 to 90 % that tends to cause D for so many of us, obviously.
This raises the possibility that you may not actually be intolerant of green beans, but when you were eating them, the additional fiber, (IOW, the cumulative amount in your overall diet), may have been enough to tip the balance, and trigger D. Most of us have tolerance thresholds for virtually all of our intolerances, (even gluten), but for some of us, (and for some foods), obviously those thresholds are quite low. It could be that you might have been able to tolerate green beans, if you had cut out some other source of fiber.
From the standpoint of avoiding sugars, (sucrose, fructose, and sorbitol), contraindicated vegetables are: beetroot, Brussels sprouts, carrots, gherkens, green beans, kohl rabi, okra, onion, parsnip, peas, pepper, plantain, shallots, spring onion, squash, sweetcorn, sweet potato, and tomato.
Recommended vegetables, (again, from the standpoint of avoiding sugars), are: celery, globe artichokes, mange trout, mushrooms, spinach, watercress, mung beans, red kidney beans, dried split peas, lentils, and potatoes.
That doesn't mean that these recommendations are suitable for MCers in general, (or for anyone in particular, for that matter), but it gives you an idea of what choices to make if sugars are a particular problem in someone's diet.
It takes a while for the corticosteroids to work their levels down in the body, after a dose is reduced. For most people, it probably takes a week to ten days, (more or less), for the level to completely drop to the equilibrium level for the new dose. IOW, to "see Norman" again, you probably will need to either drastically reduce your sugar and fiber intake, or increase your dose of Entocort. If I recall correctly, for most IBDs, the labeled maintenance dose for Entocort EC, is 6mg, daily. For Crohn's, for example, the recommended treatment dose is 9 mg per day for up to 8 weeks, followed by a maintenance dose at 6 mg per day. Anything below that, is based on the patient's response.
It's very frustrating, I know, but please don't be discouraged - you're almost there.
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.
Thank you, Tex. I can always count on you for a response.
The way that I read the board is to click on the number link of my unread messages. The list that pops up doesn't distinguish between the type of board, unless people are deliberately looking at the board column. I've never paid attention to the board type, but you could be correct. The other explanation for the lack of responses is that this thread is getting pretty large. I always click on the last page to see the latest postings, but perhaps some don't realize they can do that.
If your theory is correct, I have three choices. I can eliminate as much sugar from my diet as possible and wait to see if I have an improvement; I can increase my Entocort dosage back to 6 mg or I can go on the elimination diet and start from scratch. I eat a lot fewer sugar-sweetened products and fruit than I used to, but I still do consume some. I feel like I'm on a pretty restrictive diet already. I hate to think that I have to give up even more foods.
I've been hoping that my gut was healing because I've eliminated so many foods. What you're saying is that it's still getting irritated and isn't healing. That's pretty depressing. I've been at this for 14 months, but I don't feel like I'm much closer than I was a year ago. It doesn't seem like I'm almost there at all. I really thought I had it solved when I eliminated the green beans and had immediate improvement.
I think I'm going to PM Dee and JJ. They both are on 6 mg maintenance dosages aren't they? Perhaps they can explain why they have chosen that route. I can certainly understand it if they had the same problems I'm having. I really was hoping to get off the Entocort, but perhaps that's too lofty a goal for someone with multiple intolerances.
Gloria
You never know what you can do until you have to do it.
The way you're navigating the board is probably the proper way to do it, but I suspect that a lot of people do it the way that I do - by selecting forums with new posts, from the index page. Sometimes I suspect that some members bookmark the Main Message Board, and never get past it, but I could be wrong, of course. Probably, a lot of members start there, and if they're short on time, they read the posts with titles that catch their eye, and never get around to reading the rest, because if they log out, all the posts will then be marked by the system as "read", (whether they actually were read, or not), so the next time they log on, those posts will no longer be flagged as new.
I would hope that everyone goes straight to the last page on long threads, but I could be wrong.
The question is, do you have any indications that you are sensitive to sugar? It's not a given that all of us are, (though I think that it may be be more common than we realize), because of the LGS issue. How much fruit are you consuming? I couldn't handle very much at all, back when I was reacting. The only sugar that I could handle in any significant amount was maple sugar. I could drink one coke per day, for example, but two would make me sick.
If your problem is LGS, (due to sugar), I'm not sure that this would necessarily imply that your gut is inflammed. IOW, while LGS often goes along with MC, it's not really directly linked - it's a different mechanism for causing D, and it causes most of the other symptoms that most of us have. Those who don't have LGS, often have D, with no other significant symptoms, (IOW, no aches, pains, stiff joints, headaches, etc). LGS is caused by the tight junctions between the cells of the epithelia remaining open, when they should not be open, thus allowing the passage of not only amino acids, but longer polymer chains of partially digested food. Fresh fruit in sufficient quantities, (especially those high in sorbitol), can cause anyone, (including those with entirely normal digestive systems), to have soft stools. It doesn't necessarily mean that their gut is inflammed.
For all I know, it may be possible for the gut to heal, even though D is present due to some cause other than MC, though it seems intuitive that the less D present, the better the healing conditions. Also, the definition of D is important. Is a soft stool really D? A true MC reaction typically involves secretory D, which is characterized by very high volumes of effluent, due to the fact that the colon is secreting water into the lumen, rather than taking it out. I gather that's not what is happening with you, and that's why I suspect that you just need to fine tune your diet, to cut out some of the known "stool softeners".
If the problem is too much fiber, though, I would have to guess, (because none of this is documented by research, to my knowledge), that the gut would be inflamed by the extra fiber, so that makes the fruit a riskier item, as far as healing is concerned. Are you eating any raw fruit or vegetables? If so, that's very, very likely to be the problem.
You're a heck of a lot closer than you were a year ago. You may be only one day away from Norman, for all we know. There's no way to tell, except in hindsight We've all felt the way that you're feeling now, but when the final piece of the puzzle dropped into place, our state of mind completely changed, and then we could easily see how close we had been. It took me over a year and a half on the GF diet, to finally come to grips with the fact that I had to totally cut out all dairy, and all but minimal amounts of fiber, and sugar, from my diet, and once I did that, and "tasted success", I wondered why it had taken me so long to do it, since it seemed so obvious at that point, (in hindsight).
Yes, I believe both Dee and JJ are using the 6 mg rate, because they can't maintain consistent control at a lower dose, under current conditions in their lifestyles.
I'm almost certain that you're a lot closer than you realize.
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.
You're right, Tex, I don't have watery D, but I really never have had it unless I've had a quick reaction to something I've eaten. When I described my stool, which was more like pudding, to my GI, he said it definitely was D.
I woke up at 1 a.m. last night for the second time in a week in order to make a trip to the bathroom. I made two more trips later today; the last was not even a formed stool. I'm definitely regressing.
I don't think I eat that much sugar, but here are my typical meals:
Breakfast
Arrowhead buckwheat cereal or Rice Chex with banana and either blueberries or strawberries. Today I had just a banana
in my cereal. I sprinkle less than a teaspoon of sugar on top.
Homemade rice milk. I add 1 tablespoon sugar to 1 quart of the milk when I make it, so I get less than a teaspoon sugar when I use 1 cup in my cereal.
6-8 oz. of fruit juice - usually pineapple juice or raspberry syrup mixed with water
Lunch - chosen from the following:
turkey sandwich - slight amount of sugar is in the mayonaisse recipe I use
potato chips
fresh nectarine, cherries or rarely, grapes
canned pineapple, applesauce, fruit cocktail - I usually buy it in its own juice
beef vegetable soup
chicken noodle soup
If I eat soup, then I have a snack - Lara bar, some type of homemade snack cake or rice crackers with an olive spread
water to drink
Snacks
I did make a batch of chocolate brownies with chocolate frosting a couple of weeks ago. It's the first time I made them in a few months.
2 small pieces of Trader Joe's (almost bitter) 73% cocoa chocolate (a couple of days this week)
Nut/seed/honey bar from Whole Foods
Dinner
RiceDream milk
various meats or casseroles
broccoli or asparagus
once a week or so, I'll have raspberry sorbet for dessert - I usually don't snack after dinner
I'm not a big soda drinker. I sometimes drink one glass diet 7up diluted with water in the evening and a small amount of fruit syrup. The rest of the time I'll have ice water.
When I was younger, in my 20's or so, fresh fruit would cause me to have D so I've tended to avoid a lot of it. I don't recall having problems with fruit prior to the onset of MC, but I wasn't looking in the bowl like I do now. I even turn the bathroom light on at 1 a.m. It's like I'm taking a test every time I go now. LOL
I've never had the stomach pains that others report. I very rarely have mild headaches and they're usually an indication that I'm getting dehydrated. I don't drink a lot of fluids, something I'm trying to change. I don't have overall pain in my joints, just in my fingers and my knees (due to arthritis).
The conference ended today and I'll be able to stay around home for the next week. I can try to completely eliminate all fruit and fruit juice and eliminate as much sugar as possible to see if that makes a difference. I really hate to eat cereal without any fruit. Do you think a banana would be OK? I should probably also eliminate the RiceDream milk, too. I guess if I have to eliminate fiber, I'd have to eat Rice Chex and eliminate the carrots in my soup.
Do you think a week will be long enough to tell me if sugar is the problem? If so, I will do it for a week. If I don't have any improvement I'm going to increase the Entocort back to 2 pills a day every other day initially. I'm nervous about being on a reduced dose of Entocort much longer while I'm symptomatic because I'm afraid that it won't be effective when I go back to a higher dose.
Gloria
You never know what you can do until you have to do it.
Well, I agree - you definitely have D, and it certainly seems to be getting worse, which suggests that the Entocort was providing a lot of benefit, at the 9 mg rate.
I'm not sure about pineapple or pineapple juice - it gave me D, the last time I tried it, so I haven't touched it in years. Grapes give me D, also, and I still have to avoid them.
Is that homemade soup, or from a can, or a commercial mix?
I can't find a specific ingredient list on that Trader Joe's 73% chocolate bar, but based on what I can find, I suspect that it has lecithin on the label. That's a derivative of soy, and that's exactly the ingredient that kept Karen, (moremuscle), in the bathroom, until she did some serious detective work, and found that it was in there, even though the label did not list it. Most chocolate contains soy lecithin. It is very, very difficult to find one that does not. Karen did find one, though, after she ditched the brand she was eating, and it worked fine.
One of the unlisted markers of MC, is a dedication to bowl-watching - we all do it, when we are reacting.
Bananas are a high fiber food, and that's probably why they gave me D until my gut healed. I can eat them now, without any problems.
I finally caved in and cut out all processed food, before I was able to achieve remission. I don't know why, because they should have been safe, (according to the labels), but many of them caused me to have D, and other members here have found the same thing for many items. Cooking from scratch is the only way to be absolutely sure, (if you're having problems achieving remission).
It might be worth a try, to bite the bullet, and try a week on a very restrictive diet, to see if one of the foods that you cut out is the culprit. You may see a difference in just a couple of days or so, if you're lucky. Once you up the dosage rate of the Entocort, you won't be able to do that trial, obviously.
I tend to agree with you that the longer one reacts, the more difficult it is to regain control with a medication, (or with the diet, for that matter), but I'm not aware of any documentation to back that up. I'm just going by what I've noticed from my own and others' experiences. Still, some members are able to regain control promptly, when restarting, or increasing, their meds. I suppose, like everything else about us, that issue varies by the individual.
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.
that I'll be able to reduce Entocort with no relapse.
