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Weaning Off Entocort
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Sharaine
Adélie Penguin
Adélie Penguin


Joined: 28 Jun 2011

Posts: 235
User's local time:
2017 Nov 18 - 3:09 AM


Food Intolerances : Gluten, dairy, some soy, legumes, almonds
Location: Colorado

PostPosted: Thu Aug 25, 2011 4:36 pm    Post subject: Reply with quote

Gloria,

You have a lot of tenacity and courage. Thank you for continuing to share your progress and struggles. It really does help others. thumbs up

Hugs, Sharaine big big hug
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mzh
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 12 Nov 2010

Posts: 615
User's local time:
2017 Nov 18 - 5:09 AM


Food Intolerances : gluten sensitivity
Location: Upstate South Carolina

PostPosted: Sun Aug 28, 2011 7:19 pm    Post subject: Reply with quote

Hi Gloria,

I feel for you. I've been on Entocort since 2005. So much for staying on it for three months as the drug sheets say; just can't do it! I also tried to wean off Entocort starting Feb 2010. I kept diaries and kept trying to find a reason "why?" but was unable to figure out a cause nor to get off it longer than 56 days. (I was gluten-free at the time and it seemed to help initially.) When I restarted it I got back down to one pill every 2 days. That worked for quite some time but I just had a flare up to beat the band. I also had very low body temps with soft to runny poops for a year. One pill every 2 or 3 days was a waste but it was a good experiment.

When I restarted 6 mg Entocort last week, the D began to stop quickly. Lo and behold, my body temp quit being between 95.5 and 97 (94.3 at it's lowest when I was sickest) and went up to 98.4! I've also been drinking a lot of Sam's bottled water, the kind with the minerals added. It stops legs cramps too. I hope this higher dose keeps my too low Vitamin D higher. We'll see in Nov.

So, I don't know how to get off this either. I haven't done any lab testing yet (Enterolab and such) and now I'm wondering if I should just skip it.

Pred works too and I feel fantastic on it. If only it were safe to take long term.... I have to wonder if some of us just *need* a corticosteroid for some obscure reason.

Let's persevere despite our setbacks though!
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Gloria
King Penguin
King Penguin


Joined: 07 Jul 2007

Posts: 4761
User's local time:
2017 Nov 18 - 4:09 AM


Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit except mango, all vegetables, tomatoes, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Wed Aug 31, 2011 4:40 pm    Post subject: Reply with quote

Well, this is difficult to write, but I went back on Entocort today with the resignation that I'll probably have to stay on it.

I had a temporary improvement after stopping the statin, but within two days, I was back to D. I posted elsewhere that I experimented with giving up all vegetables for a couple of days, and I began having improved BMs. It's hard to know if giving up all vegetables would give me remission; generally my improvements are short-lived.

When I resumed eating vegetables, I ate some Brussels sprouts I found in my garden as a replacement for broccoli. I had explosive D the next day and continue to have watery D. My weight has dropped to 99 lbs.

I became curious about the fructose content of the vegetables I was eating: broccoli, Brussels sprouts, cauliflower, and asparagus. I was surprised to find that they all contain higher levels of fructose than avocado, the only fruit I can tolerate. Vegetables with low levels of fructose include peas, sauerkraut, spinach, artichokes, mushrooms, Rapini, beets, and corn. Of those, I can eat corn; I haven't tried Rapini or artichokes. I'm guessing that my problem with vegetables is the fructose. It would explain why Pat and I, the two people on the board with fructose intolerance, are having such a difficult time achieving remission without drugs.

When I realized that I would have to give up all fruits and vegetables in addition to being GF, EF, DF, SF, YF, among my other intolerances, I knew that I didn't have much choice in going back on Entocort.

I still plan on following a strict diet, but I am hoping I can indulge in half a banana or rhubarb in muffins once in a while. I will probably resume taking Simvistatin shortly.

Once again, I don't want to discourage others. I seem to have a rather insurmountable list of intolerances: fructose, histamines, and the five Enterolab intolerances. Most here are not intolerant to fructose or histamines and should be able to beat this beast. I am always happy for those who can. It's quite an accomplishment and you should feel proud. My feelings are more resignation than defeat. I know that I've given diet my all; I hope I can get back to normal with Entocort fairly quickly and will only need a small amount to maintain.

Gloria
_________________
You never know what you can do until you have to do it.
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mzh
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 12 Nov 2010

Posts: 615
User's local time:
2017 Nov 18 - 5:09 AM


Food Intolerances : gluten sensitivity
Location: Upstate South Carolina

PostPosted: Wed Aug 31, 2011 5:54 pm    Post subject: Reply with quote

Welcome to the club, Gloria. I've been on Entocort since 2005 and expect to be on it forever at the rate I'm going. You've clearly tried everything to stop it - far more than I have. Your weight loss is terrible. I am the opposite of you in that regard; I gain weight b/c the food that doesn't shoot through me now gets absorbed as calories. I hope you'll gain some weight if you stay on it.
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sarkin
Rockhopper Penguin
Rockhopper Penguin


Joined: 10 Mar 2011

Posts: 2313
User's local time:
2017 Nov 18 - 5:09 AM


Food Intolerances : Gluten, dairy, eggs (maybe more?)
Location: Brooklyn, NY

PostPosted: Wed Aug 31, 2011 7:21 pm    Post subject: Reply with quote

Gloria,

I know this is not the outcome that you were hoping for, but I truly admire you for this thoroughly researched and well-thought out decision. I hope you are soon restabilized for symptoms, and able to use the magic of Entocort to add foods to your diet - not only for nutrition and restoring a few pounds, but also for variety and enjoyment.

I hope you will wait on adding back the Simvastatin. I think one big change at a time is plenty, even for 'civilians' without MC, and I have a lot of concerns about that class of drugs, and their risks/benefits... But I know your decision process to be absolutely top-notch, and am behind you in this as well.

Thank you for sharing your thinking, and your whole process. It's of vital benefit to many of us who are still picking our way through the underbrush on this road.

All my best, always,

Sara
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mzh
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 12 Nov 2010

Posts: 615
User's local time:
2017 Nov 18 - 5:09 AM


Food Intolerances : gluten sensitivity
Location: Upstate South Carolina

PostPosted: Wed Aug 31, 2011 8:42 pm    Post subject: Reply with quote

Gloria, have you ever considered that you might have low stomach acid? Maybe that's a partial reason you can't digest much. I found I feel much better when I take a Betaine HCl with pepsin capsule with every non-fruit and salad meal. Really seems to help my digestion.
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MaggieRedwings
King Penguin
King Penguin


Joined: 31 May 2005

Posts: 3865
User's local time:
2017 Nov 18 - 5:09 AM


Food Intolerances : Gluten, Soy, Eggs, Nightshades, Mushrooms, Bananas, Melons, Most Dairy, usually Citrus, Corn for the most part
Location: SE Pennsylvania

PostPosted: Thu Sep 01, 2011 4:43 am    Post subject: Reply with quote

Morning Gloria,

Well your situation really sucks! Going back to Entocort for you may be the best way to manage adding a few things back into your meager list of foods and hopefully you will be able to gain some pounds back. Years ago, one would never have wanted to gain weight back but this disease can really make you shed them. I so want to see you be able to eat a more varied diet and feel better than you do.

Love, Maggie
_________________
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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Kari
Rockhopper Penguin
Rockhopper Penguin


Joined: 05 Sep 2010

Posts: 1218
User's local time:
2017 Nov 18 - 4:09 AM


Food Intolerances : gluten, dairy, soy
Location: Colorado

PostPosted: Thu Sep 08, 2011 4:03 pm    Post subject: Reply with quote

Hi Gloria,

Sending positive thoughts your way that entocort will quickly get you back on track, and with a more varied diet x fingers .

Love and hugs,
Kari
_________________
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
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Gloria
King Penguin
King Penguin


Joined: 07 Jul 2007

Posts: 4761
User's local time:
2017 Nov 18 - 4:09 AM


Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit except mango, all vegetables, tomatoes, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Thu Sep 08, 2011 8:58 pm    Post subject: Reply with quote

I appreciate all of your comments and kind words. It looks like it's going to take some time for Entocort to "kick in" again. It took three months the last time I increased the dosage, after I eliminated some foods. Within weeks, I had problems again and had to eliminate more foods. Finally, after six months, I began seeing Normans. I'm not in a position to eliminate any more foods this time, so I'm hoping that Entocort will still be effective.

mzh wrote:
have you ever considered that you might have low stomach acid? Maybe that's a partial reason you can't digest much.

No, I've never considered that I have low stomach acid because I don't have GERD. I suppose it's possible because I can't eat anything acidic like vinegar and citric acid. I get mouth sores soon afterward. Is there a reason you use Betaine HCI with pepsin instead of vinegar or citric acid?

Gloria
_________________
You never know what you can do until you have to do it.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30706
User's local time:
2017 Nov 18 - 4:09 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Sep 08, 2011 9:39 pm    Post subject: Reply with quote

If I recall correctly, Betaine HCl is sort of the opposite of a PPI. Where a PPI suppresses the ability of the parietal cells in the stomach to produce hydrochloric acid, Betaine HCl stimulates them to produce more acid.

Tex
_________________
cowboy

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
King Penguin
King Penguin


Joined: 07 Jul 2007

Posts: 4761
User's local time:
2017 Nov 18 - 4:09 AM


Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit except mango, all vegetables, tomatoes, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Thu Sep 08, 2011 10:04 pm    Post subject: Reply with quote

Tex wrote:
Where a PPI suppresses the ability of the parietal cells in the stomach to produce hydrochloric acid, Betaine HCl stimulates them to produce more acid.


So using Betaine HCI would stimulate the parietal cells to produce hydrochloric acid instead of putting an exterior acid into my stomach. Maybe I should try it and see if things improve. I must not have much acid considering I don't eat any acidic foods at all.

Gloria
_________________
You never know what you can do until you have to do it.
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mzh
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 12 Nov 2010

Posts: 615
User's local time:
2017 Nov 18 - 5:09 AM


Food Intolerances : gluten sensitivity
Location: Upstate South Carolina

PostPosted: Fri Sep 09, 2011 7:31 am    Post subject: Reply with quote

Gloria, I do use ACV and olive oil in my salads even though I'm not a fan of the vinegar; it always bothers my throat some. I don't get sores like you do though.

Tex is right; the Bet HCl is the opposite of PPIs. I was on omeprazole for a few months b/c my GI doc said so but couldn't tolerate it more than 4 weeks at a time; it always made my mic colitis flare up. My GI doc told me to take three Entocorts instead of two to control the diarrhea. That didn't agree with me either so I stopped the PPI. He knows. He also told me I sometimes see pills in the toilet b/c I have a somewhat shortened colon. That's not right either, right Tex?

He also told me one Bet HCl was meaningless b/c there's already tons of acid in the stomach. I asked him to check the actual amount in my stomach when he did the endoscopy but he ignored me. Instead, he told me I had focal Barrett's, which is why I was supposed to be on PPIs for TWO YEARS! No way will I do that. Like you, I don't ever feel GERD.

Do a search on "testing for low stomach acid" or on hypochlorhydria. You will see that most of the mainstream doctors don't address this at all. FWIW, I take Solgor Betaine HCl with Pepsin. It's a powder in a gel cap rather than a hard pill.

Your mouth sores and weight loss worry me though. However, too much alkalinity could be contributing to your problems as much as too much acid.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30706
User's local time:
2017 Nov 18 - 4:09 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Sep 09, 2011 8:17 am    Post subject: Reply with quote

Gloria,

It really shouldn't matter whether you eat acidic foods or not, your stomach should automatically produce enough hydrochloric acid to maintain a pH in the range of 1.5 to 3.5, for proper digestion. Most of us lose some of our capacity to produce stomach acid as we age, but for some strange reason, doctors tend to automatically assume that everyone produces too much acid. headscratch I have a hunch that the strange reason has a lot to do with pharmaceutical company promotions of PPIs. Laughing

That said, very few people take Betaine HCl to supplement their stomach acid production. I suspect that situation would be quite different if drug companies were promoting Betaine HCl, instead of PPIs. That will never happen, though, since Betaine HCl is a cheap, OTC product. Without actually measuring stomach acidity, it's pretty much of a guessing game, unfortunately.

I tried it, when I was recovering. I was kind of surprised that I "had the guts" to do it, because this was after the enzyme fiasco that had made me so sick. Laughing Anyway, I tried a pill at the start of each meal, for a while, when my digestion didn't seem to be doing so well, and it seemed to help. I don't remember if I ever tried to increase the dose, but I didn't use it very long, anyway, because about half the time I would forget to take it, and I seemed to do OK without it, so I stopped using it.

Tex
_________________
cowboy

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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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30706
User's local time:
2017 Nov 18 - 4:09 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Sep 09, 2011 8:29 am    Post subject: Reply with quote

Marcia wrote:
He also told me I sometimes see pills in the toilet b/c I have a somewhat shortened colon. That's not right either, right Tex?


Wow! You're right, of course. I would think that GI specialists would be required to learn at least the rudimentary facts about how the digestive system works, but evidently your doc must have been asleep during those lectures. Rolling Eyes Not even enteric-coated pills should make it past the first half of the colon, without dissolving. Whenever they do, it's a sign of rapid transit, not a short colon. I have no colon at all, (I have an ileostomy), and there are never any signs of any pills in the output.

Any doctor that "knows" that a patient has too much stomach acid, without ever actually checking the level, obviously doesn't know what he's talking about. sigh

Tex
_________________
cowboy

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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mzh
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 12 Nov 2010

Posts: 615
User's local time:
2017 Nov 18 - 5:09 AM


Food Intolerances : gluten sensitivity
Location: Upstate South Carolina

PostPosted: Fri Sep 09, 2011 9:14 am    Post subject: Reply with quote

Quote:

It really shouldn't matter whether you eat acidic foods or not, your stomach should automatically produce enough hydrochloric acid to maintain a pH in the range of 1.5 to 3.5, for proper digestion. Most of us lose some of our capacity to produce stomach acid as we age, but for some strange reason, doctors tend to automatically assume that everyone produces too much acid. I have a hunch that the strange reason has a lot to do with pharmaceutical company promotions of PPIs.


Truly! PPIs are the top selling type of the drug in the world!

Everyone I know who is taking PPIs is taking them b/c the doc thought it would be a good trial for frequent reflux. (There is a technical difference between reflux and GERD but I'll just use reflux here.) No one that I know has ever been tested for acid levels. None. Often PPIs work by luck. According to some, reflux can be from a loose lower esophageal sphincter (LES) caused by too little acid, not too much. Also, if one has sleep apnea (I do) every apnea causes a pressure change and causes a whoosh! of reflux, but not necessarily acid reflux. That has been tested and found to be true.

There are ways to test for the proper dose of Bet HCl. I never got above one pill per meal - more than that causes a too-warm sensation - and I only take it when there's a good amount of protein in the meal. I feel much better when I take one with the right kind of meal.

Tex, you told me a few months ago that you see no pills and you don't even have a colon. That shocked me so much that I'll never forget it! conversation

Gloria, I have to wonder if the mouth sores are from vitamin deficiencies b/c of the diarrhea. I'm thinking the Bs.
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