How the hell can I be WORSE today??
I have been on budesonide for 10 days, all I ate today for lunch was chicken breast, no dairy, no gluten, no eggs. And my bloody stomach still finds a reason to grumble and grind and leak. what the hell can I do?
Budesonide Quick Question
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Pebbledash
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I am so sorry you are suffering. Maybe give the budesonide 15-20 days and reevaluate to see if you are getting any improvements. MC is a rough disease of peaks and valleys. I think most of us would classify elimination of
nocturnal D as improvement and less urgency as improvement.
On rough work days I've put boxed GF chicken broth or boxed GF bone broth in an insulated coffee mug thinggie
and sipped on that throughout the day. It has salt in it so it helps with dehydration. My coworkers think
I'm drinking coffee. It is not a permament
solution as not enough calories but I find for a day or day and a half it helps "settle things."
If I recall you've been in remission with this disease. You've got to draw on your history for strength. Stress management
is key. I find when I am in a flare the stress really ratchets up. THis is a bit "new-agey" but I've found setting a timer on my cell phone every two
hours and doing positive thinking/meditation/prayer helps to settle me. Netflix is also my friend.
nocturnal D as improvement and less urgency as improvement.
On rough work days I've put boxed GF chicken broth or boxed GF bone broth in an insulated coffee mug thinggie
and sipped on that throughout the day. It has salt in it so it helps with dehydration. My coworkers think
I'm drinking coffee. It is not a permament
solution as not enough calories but I find for a day or day and a half it helps "settle things."
If I recall you've been in remission with this disease. You've got to draw on your history for strength. Stress management
is key. I find when I am in a flare the stress really ratchets up. THis is a bit "new-agey" but I've found setting a timer on my cell phone every two
hours and doing positive thinking/meditation/prayer helps to settle me. Netflix is also my friend.
Hi Paul,
I reread your thread.
Ditch dairy for forever. (It is the casein that is problematic for us.) Down the road you can have almond milk but I would not
attempt that now as there are too many ingredients.
We have some members who have had undiagnosed MC for 20-30 years who have been able to go into remission.
I reread your thread.
Ditch dairy for forever. (It is the casein that is problematic for us.) Down the road you can have almond milk but I would not
attempt that now as there are too many ingredients.
We have some members who have had undiagnosed MC for 20-30 years who have been able to go into remission.
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Pebbledash
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Pebbledash
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- Joined: Sun Aug 11, 2013 1:37 pm
Hi Tex--I read your description of cholestyramine carefully. I did try it in the past, but perhaps I will try it again later today. You are correct, I do have tenure. A sabbatical would probably help, yes.tex wrote:Hi Paul,
Cortisol regulates bile uptake, and this is at least part of the reason why corticosteroids are helpful for MC, and why some people gain weight while taking budesonide (fat is absorbed rather than lost). But cholestyramine has the opposite effect — it binds bile salts and makes them unavailable, and then escorts them out of the digestive tract. This often stops the diarrhea. It also binds the fat that is entrapped by the bile so that most fat in the diet is lost with the bile. This may be good or bad, depending on whether fat malabsorption is contributing to the diarrhea and whether or not the patient can afford the calorie loss. Another downside is that cholestyramine interferes with any other meds and supplements. They must be taken at least two hours before the cholestyramine, or at least four hours afterward to prevent loss of efficacy (of the meds and supplements).
Also, as you have probably noticed, recovering from MC can be almost a full time job and requires minimizing stress. All of us have had a stressful event or series of events that provide an environment favorable to the development or exacerbation of MC. You evidently have earned tenure, if I read your post correctly. It's to late for this option this semester and probably the next, but if you could take a sabbatical it would really help to reduce the stress level and allow you to perfect your treatment and control of this disease.
I hope that some of this is helpful.
Tex
My gastro is phoning later. I'll update. No change in my condition, unfortunately.
Cheers
Paul
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Pebbledash
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Hi Paul,
Sorry, I've been sidetracked on another project this afternoon. I've never used chol;estyramine so I can only repeat label recommendations, which are 1 packet (or 4 grams) initially, increasing the dose gradually until you get control or have side effects. Maximum dose is 6 packets (or 24 grams). I believe many people wind up taking 4 grams in the morning and 4 grams in the evening. But a few have taken a total 16 grams per day.
Hopefully, someone with experience (and success taking it) will chime in.
Tex
Sorry, I've been sidetracked on another project this afternoon. I've never used chol;estyramine so I can only repeat label recommendations, which are 1 packet (or 4 grams) initially, increasing the dose gradually until you get control or have side effects. Maximum dose is 6 packets (or 24 grams). I believe many people wind up taking 4 grams in the morning and 4 grams in the evening. But a few have taken a total 16 grams per day.
Hopefully, someone with experience (and success taking it) will chime in.
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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Pebbledash
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Pebbledash
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- Joined: Sun Aug 11, 2013 1:37 pm
Antihistamines are often very helpful in certain situations, such as weaning off a budesonide treatment, where they can help prevent a relapse of symptoms. And some individuals find that when one type of antihistamine fails to help, another type might be much more effective. Many swear by fexofenadine (Allegra). And it's possible that increasing the dose might help. But antihistamines normally will not compensate for a diet that's high in histamine. In other words, avoiding or minimizing high-histamine foods is the only practical remedy if histamines are a major problem.
For example, bananas are considered a high-histamine food, but if you eat them before they become fully ripe, they are normally not yet a high-histamine food. When fruit is ripening (or chicken in the frig is aging, or whatever) histamine levels increase rapidly. Histamine growth may be slowed down at refrigeration temperatures, but it is stopped only by freezing at zero degrees F, or below. So freeze leftovers, buy only very fresh fish and chicken and cook them and then freeze any not eaten immediately, or freeze them if you are not ready to cook them. Turkey has a much lower histamine problem than chicken, and beef and pork usually don't cause histamine problems either. The worst offenders are fish, chicken, very ripe bananas, dehydrated foods, and fermented foods.
If you freeze leftovers in meal-size portions, they are easy to thaw (preferably in a microwave to reduce the time for histamine propagation), and they increase convenience significantly. I buy bananas a dozen or so at a time, peel them and freeze them individually in ziploc bags. About mid-morning each day I take one out of the freezer, let it begin to thaw for only a minute or two, and then smear some cashew butter or almond butter on top each time I take a bite. It makes a great snack, and it's as close to a desert as I ever eat these days. Freezing is the only practical way to keep bananas from quickly becoming a high-histamine food.
Antihistamines can be helpful in temporary situations, but some authorities are convinced that histamines deplete diamine oxidase ezyme (DAO). Therefore, in the long run, they can become counterproductive. The basic problem lies in the fact that the body uses DAO to purge excess (unused) histamine from circulation, and if DAO is depleted, histamine levels can continue to rise until they become problematic. One of the side effects of MC is that it depletes DAO, so the problem can get out of hand in a hurry, and this problem is usually difficult to resolve once initiated. It's important to note that antihistamines do not destroy or purge histamine from the body. They merely keep it from attaching to histamine receptors in the body. But that means that if DAO is inadequate, histamine levels in circulation continue to rise.
This is not substantiated by medical research, but I'm convinced that in some cases, it's the dominant mode of inflammation, thus making such cases refractive to normal treatment methods. If you have reason to suspect that histamine is a problem in your case, it might be the key that is perpetuating the inflammation.
Tex
For example, bananas are considered a high-histamine food, but if you eat them before they become fully ripe, they are normally not yet a high-histamine food. When fruit is ripening (or chicken in the frig is aging, or whatever) histamine levels increase rapidly. Histamine growth may be slowed down at refrigeration temperatures, but it is stopped only by freezing at zero degrees F, or below. So freeze leftovers, buy only very fresh fish and chicken and cook them and then freeze any not eaten immediately, or freeze them if you are not ready to cook them. Turkey has a much lower histamine problem than chicken, and beef and pork usually don't cause histamine problems either. The worst offenders are fish, chicken, very ripe bananas, dehydrated foods, and fermented foods.
If you freeze leftovers in meal-size portions, they are easy to thaw (preferably in a microwave to reduce the time for histamine propagation), and they increase convenience significantly. I buy bananas a dozen or so at a time, peel them and freeze them individually in ziploc bags. About mid-morning each day I take one out of the freezer, let it begin to thaw for only a minute or two, and then smear some cashew butter or almond butter on top each time I take a bite. It makes a great snack, and it's as close to a desert as I ever eat these days. Freezing is the only practical way to keep bananas from quickly becoming a high-histamine food.
Antihistamines can be helpful in temporary situations, but some authorities are convinced that histamines deplete diamine oxidase ezyme (DAO). Therefore, in the long run, they can become counterproductive. The basic problem lies in the fact that the body uses DAO to purge excess (unused) histamine from circulation, and if DAO is depleted, histamine levels can continue to rise until they become problematic. One of the side effects of MC is that it depletes DAO, so the problem can get out of hand in a hurry, and this problem is usually difficult to resolve once initiated. It's important to note that antihistamines do not destroy or purge histamine from the body. They merely keep it from attaching to histamine receptors in the body. But that means that if DAO is inadequate, histamine levels in circulation continue to rise.
This is not substantiated by medical research, but I'm convinced that in some cases, it's the dominant mode of inflammation, thus making such cases refractive to normal treatment methods. If you have reason to suspect that histamine is a problem in your case, it might be the key that is perpetuating the inflammation.
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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Pebbledash
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- Joined: Sun Aug 11, 2013 1:37 pm
Hi Paul,
Mesalamines are a class of drugs that can help with inflammation. Lialada is a brand of Mesalamine. I took 4 pills of Lialda in addition to 3 pills of Entocort in the middle of a flare to get things under control.
At my worst, I was also taking Imodium daily (my doctor OK'd up to 6 Imodium a day -- thankfully I never got to that, but would always keep a stash in my bag).
Prednisone is a steroid that is stronger than Entocort and I imagine would take care of your flare. My understanding is that Prednisone does come with some more side effects that you'd want to consider.
Wishing you all the best.
Mesalamines are a class of drugs that can help with inflammation. Lialada is a brand of Mesalamine. I took 4 pills of Lialda in addition to 3 pills of Entocort in the middle of a flare to get things under control.
At my worst, I was also taking Imodium daily (my doctor OK'd up to 6 Imodium a day -- thankfully I never got to that, but would always keep a stash in my bag).
Prednisone is a steroid that is stronger than Entocort and I imagine would take care of your flare. My understanding is that Prednisone does come with some more side effects that you'd want to consider.
Wishing you all the best.