Weaning Off Entocort

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Lucy
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Post by Lucy »

Gloria,

You may have started eating alot more fiber as you initially got better. Try going back to a lower fiber diet for a while, and see if that helps.

When I go to Beck's Prime, I ask them to really, really cook the mixed vegetables on the Robert's chicken dish I get, and also, will often just eat half the vegetables at a sitting as I notice it bothers me a bit to eat all of those at once.

A long time ago, I tried to eat at a couple of places I was sure made sure about my food. One restaurant served shreaded lettuce with a bunless burger, tomato slices, and onion, and the other served shreaded raw cabbage in a salad I could have. I finally figured out I was eating too much shreaded lettuce and cabbage at those two places, and would have to run to the potty before I was even through eating at the place that served the slaw.

Anyway, see if you don't notice eating too much or too raw, etc. vegetables right before you get into bigtime diarrhea.

It's funny, but regularly cut lettuce NEVER seemed to bother me the whole time I was reacting like crazy to the main "allergens" when I'd get contamination or an as yet to be discovered" allergen.

Just thought I'd give you food for thought on this one.

Good luck! Luce
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Gloria
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Post by Gloria »

I appreciate your concern and suggestions. I've been eating pretty low-fiber for quite a while. I no longer eat nuts, fruit, fresh vegetables, lettuce, potato skins or most food items that could irritate my gut.

I'm convinced that this time is different, because I am not rebounding quickly at all, like I have in the past. I have a strong feeling that I have a yeast infection. My problems began after taking a bite of the moldy cookie, as mentioned previously. I increased my Entocort dosage to one pill per day and began to improve. At this time, I was testing some low-fructose fresh fruit. Each fruit that I tested caused D, so I stopped testing it. My problems increased while visiting my daughter, and I was having D regularly. I increased Entocort to between 2-3 pills a day and for a few days, I was better. Eleven days ago, I ate a rice cake with sunflower butter and jelly. Later I had a desire for fruit, so I ate 1/2 cup of canned fruit. I have had D since then.

I haven't gotten the test results from my GI yet. He tested for the following: stool C. Diff, stool WBCS, stool C&S, stool O&P.

I've been eating a very restricted diet since last Thursday: no fruit, chocolate, bread, and very little sugar - just a small sprinkling of cinnamon sugar on cooked quinoa or buckwheat cereal in the morning. I've had some improvement in the quantity and quality of BMs, but I'm still going about 3 times a day, and I still have D, though it's not watery, explosive anymore. I didn't eat any rice yesterday, but it doesn't seem to have made any difference today. I don't see any direct relation between any foods I'm eating and my symptoms, which makes me believe this isn't a food intolerance problem.

Unfortunately, I have a urinary tract infection today and began taking Cipro. It was bound to happen, given the lack of fruit in my diet. I took D-Mannose yesterday and this morning, but it didn't help. Neither did the fresh-squeezed lime juice (w/o sweetener). I'll have to make a trip to Whole Foods to get some rice yogurt. I resumed taking a probiotic last week, but I don't think it's very potent.

I'm going to continue on this diet for another week or so in the hopes it improves my symptoms. My GI wanted me to increase Entocort to 3 pills/day, but I've read that steroids enable yeast infections to proliferate. I've been taking 1 pill one day, and 2 pills the next day. I'm concerned that between Cipro and Entocort I'm undermining any progress I'm making with the diet.

I'll post again after I get my stool testing results.

Gloria
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tex
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Post by tex »

Gloria,

I realize that you didn't ask for any advice, but here is a thought, anyway. If I were in your shoes, and I wanted to stop the D, I would up the Entocort dose to 9 mg per day, and let the Cipro worry about the yeast. At the levels of Entocort that you've been using for the past year, I doubt that it has significantly suppressed your immune system. If it had, you wouldn't be having D from MC, because you couldn't be having a autoimmune reaction, if your immune system were truly suppressed. Obviously, this is just a WAEG, on my part, but normal maintenance doses of budesonide, do not necessarily suppress the immune system, by a significant amount.

You're taking half a dose of Entocort, so you're getting roughly half-control. If you feel that you have a yeast overgrowth in your GI tract, then controlling it would be a fairly long-term project. What you do with budesonide dosing, for a few weeks, is not likely to have much effect on the yeast, in the long run. At least that's the way I see it, FWIW, (probably all of about 2 cents).

Tex
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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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Gloria
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Post by Gloria »

I heard from my GI's nurse. She said the lab reports didn't show anything wrong, which I knew would happen. I've never had the hospital test show anything wrong.

I told her that I was still having problems and she wanted to know if I increased the Entocort to 3 pills a day. When I told her my regimen, she said "You should be taking 3 pills a day. It takes time to build it up." I told her I've been taking it for 2 1/2 years and I know how it works, but it's not working this time. I told her that I suspect I have a yeast infection and asked her if they tested for that. They hadn't. Grrr. Then I told her about my reaction to fruits. She's going to talk to the doctor. Why can't I talk to the doctor?

Tex,
Per yours and the nurse's advice, I took another Entocort, making the dosage 3 pills for today. It feels like I'm postponing the agony, even if the increase helps. I'd like to know why I'm continuing to react after all I've done. I get so near and yet am so far from remission. I guess you can tell I'm getting discouraged and frustrated.

I've thought about getting the yeast stool testing done again at Enterolab. I tested positive a couple of years ago. It makes me wonder if I ever completely overcame it, or if it's always been hovering.

Is it possible that you had a yeast infection and you couldn't get rid of it until you eliminated all sugar and fruit? Is it possible that all of us who have a problem achieving remission are really dealing with a yeast infection and can't get cure our leaky gut until we get rid of the excess yeast? I can't remember - how long did it take for you to see an improvement after you eliminated almost all sugar? I know that you've never taken Entocort, so your situation was different from mine.

Gloria
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tex
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Post by tex »

Gloria wrote:I'd like to know why I'm continuing to react after all I've done. I get so near and yet am so far from remission. I guess you can tell I'm getting discouraged and frustrated
.

I wish I knew the answer to that. If it's a food, it has to be something that you're ingesting regularly - something you trust. Probably a processed food of some type.
Gloria wrote:Is it possible that you had a yeast infection and you couldn't get rid of it until you eliminated all sugar and fruit? Is it possible that all of us who have a problem achieving remission are really dealing with a yeast infection and can't get cure our leaky gut until we get rid of the excess yeast? I can't remember - how long did it take for you to see an improvement after you eliminated almost all sugar? I know that you've never taken Entocort, so your situation was different from mine.
Yes, it's certainly possible that I had a yeast problem. I've often wondered about that. Especially since I blame my leaky gut on sugar, in the first place. I can remember noticing thrush on my tongue, fairly regularly,when I was reacting.

Looking back at my records, I seemed to be doing a lot better, about a month after I cut sugar down to a minimum. Unfortunately, I stopped keeping records soon thereafter, but that was probably because I decided that I had the problem under control.

Tex
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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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Gloria
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Post by Gloria »

Thank you, Tex. That's very helpful to know. I think I'll hang in there as long as I can and eliminate almost all sugar and yeast. Eventually the yeast should die off, if indeed it's a yeast infection.

I had been holding off because I didn't know what I could eat when I was away from home for lunch. I always had a turkey sandwich. I finally realized that I can make a tuna macaroni salad instead, as long as I can handle rice pasta. Breakfast is also tricky without fruit, eggs, waffles or pancakes, but I'm getting used to hot buckwheat and quinoa cereals.

Gloria
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tex
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Post by tex »

You have to realize that back in those days, I probably had never even heard of such a thing as a yeast overgrowth. I just knew that I couldn't handle much sugar, without getting into trouble.

Do/did you know Karen, (moremuscle)? She may have stopped posting before you joined. Her motto was "never leave home without a pork chop in your handbag", (and she meant it, too. LOL). She used them for meals away from home, breakfast, or whatever.

Tex
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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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Gloria
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Post by Gloria »

Tex,

I joined the board when Karen was still posting. I do remember her saying to never leave home without a pork chop in your bag. Frankly, I never understood that. Isn't it unsanitary to keep meat, even cooked meat, without refrigerating it?

I was reading the "Complete Candida Yeast Guidebook" today and Carolyn DeMarco, MD wrote that statins are antifungal medications. I then remembered mentioning that I hadn't taken my statin while I was visiting my daughter because I hadn't received the refill before I left home. You may recall that my problems began while I was visiting her.

My GI's nurse left a message today and said "There's not a specific test to check for yeast in the stool. The Microbiology department at the hospital says if they note yeast when they do a culture, they make a note of it." She faxed in an order for another stool test. I'm irritated. That's what I wanted them to look for the first time. I think something gets lost in the translation when I talk to his nurse. I don't know if I should do the second test. I've been reading that most MDs don't recognize yeast infections in the gut. I have my doubts that he'll take this seriously.

What are your opinions? Either way, I'm going to do the diet. The book says it will take two months for the diet initially. I haven't read far enough to see how I'd procede after that.

Gloria
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tex
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Post by tex »

Hi Gloria,

This probably goes against "proper" USDA guidelines, but from personal experience, I've found that cooked meat will generally "keep" for a surprisingly long time without refrigeration. I certainly am not recommending that anyone should keep it that way for days, but a few hours should be quite safe, for properly-cooked beef or pork, at least, and I normally wouldn't worry about keeping it for up to 8 or 10 hours, depending on temperature and humidity. I'm not sure that I would trust poultry or fish for more than a few hours, though. Poultry and fish spoil more easily, and they're generally much more polluted during processing, so that statistically, there's a much better chance that some of the microbes may survive the cooking process, and propagate rapidly, without refrigeration, or preservatives.

There's a somewhat confusing issue involved with the statins, due to nomenclature. First off, Nystatin is an antifungal drug to which many molds and yeast infections are sensitive, including Candida. Nystatin is not absorbed through intact skin or mucous membranes,and it's generally considered a relatively safe drug for treating oral or gastrointestinal fungal infections. Nystatin, is not one of the "statin" drugs, however.

To add to the confusion, the statin drugs appear to provide both anti-microbal, and anti-fungal efficacy. Consider this quote, from the article at the link shown below:
Testing 6 statins in the laboratory against a variety of species of Candida and molds, Dr. Akins observed a hierarchy of antifungal activity: simvastatin > fluvastatin > lovastatin > atorvastatin = rosuvastatin > pravastatin. However, concentrations of the drugs needed for an inhibitory effect are significantly higher than what is believed to be the serum concentrations of the statins when they are taken for cholesterol control.
http://www.medscape.com/viewarticle/563088

So yes, notwithstanding the caveat about dosage rates mentioned in the above quote, IMO, this effect certainly might have played a part in your current reactions, because if the gut is already hypersensitive, sometimes it doesn't take much to tip the balance.

And yes, important information frequently gets lost when an intermediary relays information to a doctor. Whenever I'm in a situation such as that, I like to see them make a note of all the information that needs to be relayed, and even then, there are certainly no guarantees that nothing will be lost or changed in the translation.

I have a hunch that Candida plays a much bigger role in the leaky gut syndrome, and MC, than the medical community realizes. Mainstream medicine seems to be mostly oblivious of what goes on with candida in the human body.

Good luck with this.

Tex
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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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Gloria
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Post by Gloria »

Another update:

I increased my Entocort dosage to 9 mg. a day. With my prior relapses, I only needed to keep it at that level for two days before I saw solid BMs. After two days, I could reduce to 6 mg a day and would continue to improve.

This time has been much different. I took 9 mg. of Entocort for eleven days in combination with two weeks of a sugar-free diet before I had solid BMs. I reduced to 6 mg. yesterday because my urinary tract infection returned. I'm on a second round of Cipro. I don't know if Entocort has anything to do with Cipro not being as effective. I usually only need to take Cipro for three days when I have a UTI. This time, I took it for five days because I continued to have problems after three. Apparently even the five days weren't long enough. I worry that the bacteria are getting resistant to Cipro.

I'm happy to report that Norman returned today. :banana: I have continued to abstain from eating any chocolate, sugar and fruit, other than unsweetened lemon/lime juice. I started drinking unsweetened cranberry juice this morning to help keep the UTI's at bay. I'd like to think that the sugar-free diet is helping. I'm going to stay on it for a month and then reassess. I'm not sure I can get through the holidays without indulging in some sugar. Breakfast is the hardest meal. I have to force myself to eat hot buckwheat, quinoa or rice cereal without sugar or fruit. I eat soup with rice crackers and guacamole and/or olive paste every day for lunch. If I need a snack, I eat potato chips. Dinner hasn't changed much. My weight has dropped to 108-9 lbs.

I'm thrilled that I seem to be able to eat yams (but not sweet potatoes). I'm going to have them periodically for breakfast. It's more difficult to find yams; most stores don't understand that there's a difference. The store that carries them puts them in the same bin as the sweet potatoes and I have to be very careful.

I appear to be back on track. I'm pretty sure that I've had a yeast problem and the combination of Entocort with the sugar-free diet have soothed my gut.

Thank you for your support. I doubt that I would have been able to endure this latest setback alone.

Gloria
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mbeezie
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Post by mbeezie »

Gloria,

I was wondering if you were taking D mannose for the UTI? I seem to remember you bought some a while back. Is this contraindicated on the sugar free diet?

Hope you get to feeling better soon.

Mary Beth
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Gloria
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Post by Gloria »

Mary Beth,

Yes, I've been taking the D-Mannose a few times a day. It hasn't seemed to help. Neither did the fresh-squeezed lemon/lime juice every morning. I hope the unsweetened cranberry juice does the trick.

Gloria
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tex
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Post by tex »

Gloria,

It's a relief to see that you've finally turned the corner on the D, at least. When everything is "swarming" at once, it's pretty tough to concentrate on an organized treatment program.

One of the symptoms of a candida overgrowth, is relapsing UTIs, or frequent UTIs. The Cipro might be working normally, but the deck may be stacked against it.

Tex

P. S. I was wondering about the D-mannose, too. Something like 85% of UTIs are supposedly due to E. coli, and P. mirabilis, Klebsiella, and E. fecalis, account for most of the other 15%. I'm just guessing here, but there's a good chance that D-mannose may only work for E. coli bacteria, so if the infection is due to some other pathogen, it might be ineffective. :shrug:
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ant
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Post by ant »

Dear Gloria

Fingers crossed that you have at least turned the corner on the D.

Best wishes, Ant
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Gloria
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Post by Gloria »

An update:

I've been doing pretty well, my usual 6-month cycle, I guess. I reduced to 3 mg Entocort every other day this week. I've been on 3 mg every day for about 5 weeks.

I'm still eating a diet without fruits, very limited sugar and bread, and no cookies, cakes, brownies, waffles or pancakes. I continue to drink 1/3 cup of unsweetened cranberry juice each morning. I drink almond-rice milk with my meals and water the rest of the time.

I have been eating 1 oz. of chocolate a day for the last month and have begun putting a little brown sugar and aspartame on my hot buckwheat, quinoa or rice cereal in the morning. I also make pudding with a blend of a small amount of sugar and aspartame. Luckily, I don't seem to have any problems with aspartame.

I usually eat rice crackers with sunflower butter or olive paste with my daily soup for lunch. For snacks, I eat either potato chips or olives. I'm a little concerned that I'm eating too much salt because of my limited snack choices. My blood pressure has gone from very low to average.

I read tonight that it's pretty common for cookies made with sunflower butter to turn green inside. It has something to do chlorogenic acid in sunflower seeds. So I probably didn't eat anything moldy after all. Now I'm wondering if I ever had a yeast problem.

I'm really beginning to miss fruit and the variety it adds to meals and snacks. I'm starting to feel like my body isn't quite right. Yesterday I was shaky right after a dinner of pot roast, mashed potatoes, and asparagus. That's never happened before. DH says I had low blood sugar, because I was extremely tired afterward. I ate a rice cake with sunflower butter and a teaspoon of jam, but it took a while to feel better. I didn't want to drink juice because I knew I'd have D afterward. Is there such a thing as not enough sugar?

Gloria
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