Week 4 of entocort and stomac seems worse
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Week 4 of entocort and stomac seems worse
Ok, after being on entocort 3weeks, going GF, and even tried a dairy free day- and had terrible gas- my stomach seems worse. I'm starting to wonder if something much worse is wrong with me, and it's scaring me. And I feel alone, bc this was the med after asacol that was supposed to work. Sure, I've got 3 more weeks to go on full dose , but shouldn't I see something significant by now?? I'm worn out and worn down. Sorry to be such a downer, but my mood is sinking.
Microscopic Colitis
Asacol 800 mg 6 daily
Immodium PRN
Entocort 8 weeks
Asacol 800 mg 6 daily
Immodium PRN
Entocort 8 weeks
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
sorry you are struggling -
my thoughts....
- one day of dairy free is not enough, dairy is highly inflammatory and to optimise benefit of taking the entocort, avoiding food triggers that cause inflammation is strongly recommended.
- are you following bland, low fibre, eating plan that we recommend? having good serves of animal protein? small amount of well cooked vegetables? minimal processed gluten free food items.
- are you taking Vit D3 and magnesium? our observation based on experience of many people here, the medications for MC have limited scope of success if the patient is deficient in Vit D3 and magnesium, and further impacted if the patient continues to eat inflammatory food items.
It is unlikely there is any other issues. Being deficient in Vit D3 and magnesium will also heighten emotional unsettlement.
hope this helps
my thoughts....
- one day of dairy free is not enough, dairy is highly inflammatory and to optimise benefit of taking the entocort, avoiding food triggers that cause inflammation is strongly recommended.
- are you following bland, low fibre, eating plan that we recommend? having good serves of animal protein? small amount of well cooked vegetables? minimal processed gluten free food items.
- are you taking Vit D3 and magnesium? our observation based on experience of many people here, the medications for MC have limited scope of success if the patient is deficient in Vit D3 and magnesium, and further impacted if the patient continues to eat inflammatory food items.
It is unlikely there is any other issues. Being deficient in Vit D3 and magnesium will also heighten emotional unsettlement.
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Lela,
Gabes is right on target with her advice. For most people Entocort usually works in less than about 2 weeks. But some of us have taken 2–6 months to see results. It depends on your food sensitivities and how carefully you control your diet. If you only avoided dairy for 1 day, it's no wonder that the Entocort isn't working. And that makes me wonder how carefully you are avoiding gluten. Most of us have to avoid it 100 %, even in tiny trace amounts.
Some of us are lucky and recovery is easy, and some of us have to get down to business and get serious about our diet and work very hard in order to control the disease. Everyone (and their GI doc) thinks that something else is wrong when a treatment doesn't work. So they spend money on more tests. But they never find anything else wrong. MC is a tough disease to control.
If we have a tough case that doesn't respond to Entocort, then our only hope is the diet and we have to work extra hard and do everything right in order to control the disease. It takes time for the diet to heal the gut, and that's only if we make absolutely sure that no gluten or dairy (and in many cases, soy) sneak into our diet, even in tiny amounts.
Tex
Gabes is right on target with her advice. For most people Entocort usually works in less than about 2 weeks. But some of us have taken 2–6 months to see results. It depends on your food sensitivities and how carefully you control your diet. If you only avoided dairy for 1 day, it's no wonder that the Entocort isn't working. And that makes me wonder how carefully you are avoiding gluten. Most of us have to avoid it 100 %, even in tiny trace amounts.
Some of us are lucky and recovery is easy, and some of us have to get down to business and get serious about our diet and work very hard in order to control the disease. Everyone (and their GI doc) thinks that something else is wrong when a treatment doesn't work. So they spend money on more tests. But they never find anything else wrong. MC is a tough disease to control.
If we have a tough case that doesn't respond to Entocort, then our only hope is the diet and we have to work extra hard and do everything right in order to control the disease. It takes time for the diet to heal the gut, and that's only if we make absolutely sure that no gluten or dairy (and in many cases, soy) sneak into our diet, even in tiny amounts.
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 was very strict on gluten free. I have a hard time finding these products, such as GF bread, with little to no fiber though. I was only off dairy one day bc thought I'd give it a go. But as I said, it ended up being a bad day. I still don't understand why one week I was fine on regular food and then all of a sudden had diarrhea. It seems illogical to me, but I'm for GF if it will help. Thx for the input. I know y'all are trying to help.
Microscopic Colitis
Asacol 800 mg 6 daily
Immodium PRN
Entocort 8 weeks
Asacol 800 mg 6 daily
Immodium PRN
Entocort 8 weeks
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
the simpliest explanation i can give is that it is like the slow leaking tapI still don't understand why one week I was fine on regular food and then all of a sudden had diarrhea.
at first there does not appear to be any damage that the slow leaking tap is causing
over time you can start to see some staining and some wear at the spot where the tap is constantly dripping
eventually the wear can turn into a divot/hole.
this is what happens to the wall of our digestion system. the inflammation levels gradually increase, the damage is very gradual, we dont notice the slight symptoms of fatigue, small amount of pain, small change in BM size / colour / consistency. with the gradualy ongoing inflammation key nutrients are being depleted and the gut can not heal form the inflammation, at this point our immune system reacts and you have chronic symptoms.
This article will help to explain it
(For Mc'ers we can have multiple triggers that cause inflammation and villi damage)
http://reallifewithceliacdisease.com/excerpt_villi.pdf
have you read the posts in the Guidelines to Recovery section? the information there will help you on the journey to wellness.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Lela,
I wouldn't eat any gf bread until much later. I ate meat, specifically turkey and potatoes for a month if not longer. Or cauliflower overcooked. Water and black coffee or green tea. I had to ditch coffee for awhile.
Once you find your safe foods you will feel much better. It takes a while to find those. I am hoping to add more soon. Its been 1 year 2 months for me with diet. But I've had this for 8 years...
I wouldn't eat any gf bread until much later. I ate meat, specifically turkey and potatoes for a month if not longer. Or cauliflower overcooked. Water and black coffee or green tea. I had to ditch coffee for awhile.
Once you find your safe foods you will feel much better. It takes a while to find those. I am hoping to add more soon. Its been 1 year 2 months for me with diet. But I've had this for 8 years...
Martha E.
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Lela,
Martha is right. Many of us cannot find a commercial GF bread that we can tolerate because they all contain so many ingredients that most of us react to one or more of those ingredients. That also applies to most other processed food products. I haven't eaten any kind of bread in probably 10 years or more.
After we have been in remission for a while we have a much better chance of being able to tolerate such products. But while we are trying to recover, our intestines are supersensitive, and many ingredients can trigger a reaction even though they might be safe later after our intestines have healed for a few months or more. Many of us have to heal for a year or two before we can tolerate commercial processed (GF) foods, and some of us can never tolerate them, depending on the ingredients. I always went by the rule of thumb that if a product contained more than five ingredients, or I couldn't pronounce some of them, or I wasn't sure what some of them were, then I didn't buy it.
Back when I was initially recovering, every time I tried any commercial baked products, even mixes that I made myself, I got sick almost every time.
The foods that Martha mentioned that she ate while recovering are usually safe for most of us. We have to use our food as medicine while we are recovering.
To expand on what Gabes posted, here is why we can eat certain foods all our life and then suddenly they make us sick:
Research shows that when the genes that predispose to CC/LC/MC are triggered, the genes that predispose to gluten sensitivity are also triggered. Gluten sensitivity causes increased intestinal permeability and this allows partially-digested peptides from certain foods to enter the bloodstream, which provokes an immune system response (because these peptides are obviously not supposed to be there). The immune system then begins to react to certain proteins in those foods every time they are eaten. This is why some of the foods that you have been eating for most of your life can suddenly begin to cause chronic inflammation by provoking your immune system to produce antibodies against them. And because physicians are trained to treat disease by prescribing drugs, and none of them receive any significant amount of formal training in dietary treatment methods, they are pretty much forced to treat MC by prescribing drugs. Fortunately, here and there a few gastroenterologists are beginning to learn about the diet connection, but in most areas of the country, progress is still very slow.
In most cases food sensitivities probably are not the reason why the disease developed initially, but once the sensitivities develop then they tend to perpetuate the inflammation which perpetuates the symptoms. This makes the disease very difficult to control unless certain diet changes are made.
I hope that some of this is helpful.
Tex
Martha is right. Many of us cannot find a commercial GF bread that we can tolerate because they all contain so many ingredients that most of us react to one or more of those ingredients. That also applies to most other processed food products. I haven't eaten any kind of bread in probably 10 years or more.
After we have been in remission for a while we have a much better chance of being able to tolerate such products. But while we are trying to recover, our intestines are supersensitive, and many ingredients can trigger a reaction even though they might be safe later after our intestines have healed for a few months or more. Many of us have to heal for a year or two before we can tolerate commercial processed (GF) foods, and some of us can never tolerate them, depending on the ingredients. I always went by the rule of thumb that if a product contained more than five ingredients, or I couldn't pronounce some of them, or I wasn't sure what some of them were, then I didn't buy it.
Back when I was initially recovering, every time I tried any commercial baked products, even mixes that I made myself, I got sick almost every time.
The foods that Martha mentioned that she ate while recovering are usually safe for most of us. We have to use our food as medicine while we are recovering.
To expand on what Gabes posted, here is why we can eat certain foods all our life and then suddenly they make us sick:
Research shows that when the genes that predispose to CC/LC/MC are triggered, the genes that predispose to gluten sensitivity are also triggered. Gluten sensitivity causes increased intestinal permeability and this allows partially-digested peptides from certain foods to enter the bloodstream, which provokes an immune system response (because these peptides are obviously not supposed to be there). The immune system then begins to react to certain proteins in those foods every time they are eaten. This is why some of the foods that you have been eating for most of your life can suddenly begin to cause chronic inflammation by provoking your immune system to produce antibodies against them. And because physicians are trained to treat disease by prescribing drugs, and none of them receive any significant amount of formal training in dietary treatment methods, they are pretty much forced to treat MC by prescribing drugs. Fortunately, here and there a few gastroenterologists are beginning to learn about the diet connection, but in most areas of the country, progress is still very slow.
In most cases food sensitivities probably are not the reason why the disease developed initially, but once the sensitivities develop then they tend to perpetuate the inflammation which perpetuates the symptoms. This makes the disease very difficult to control unless certain diet changes are made.
I hope that some of this is helpful.
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.