Hi,
I am a newbie here, just diagnosed in February after my colonoscopy. I have had this going on for nearly 2 yrs and was just diagnosed IBS until I had the biopsies come out CC after the colonoscopy. I had gone gluten free about three months earlier which made my life a lot more manageable with the the help of Immodium AD.
Okay the doc put me on generic budesonide for six weeks - 9mg for 2wks, 6mg for 2wks, and then 2 wks @ 3mg. It took about one week for it to work, then I had the best week bathroom wise in the last nearly TWO yrs!!!! So Thurs I cut down to 6mg and everything was fine until today. Had a normal morning BM, then out of nowhere diarrhea 4 hours later. I am so sad and sick of thinking about D!!! Guess I am wondering if it is likely I need to be on 9mg longer than two weeks.
Newbie with an Entocort Question-is six weeks enough?
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Hi Annie,
Please don't be discouraged. Most of us encounter that problem on our journey back to health.
That deterioration in your condition means that something in your diet is causing you to react. As we reduce the Entocort dosage, most of us find that additional food sensitivities begin to show up. Either you need to avoid one or more additional foods, or your diet is being accidentally cross-contaminated by small amounts of the foods that you are trying to avoid. If you are only avoiding gluten, the reason for the relapse of symptoms is probably due to dairy products or maybe soy in your diet. Most of us here are sensitive to dairy, and almost as many are also sensitive to soy.
Most members here who use Entocort to mask their symptoms while their intestines are healing in response to their diet changes, find that it takes at least 6 months to (in many cases) a year, before they can safely taper off the Entocort without a relapse of symptoms. Most doctors don't realize how long it takes for the gut to heal from the damage caused by food sensitivities (if they even realize that food sensitivities are the reason why the intestines are inflamed in the first place).
Tex
Please don't be discouraged. Most of us encounter that problem on our journey back to health.
That deterioration in your condition means that something in your diet is causing you to react. As we reduce the Entocort dosage, most of us find that additional food sensitivities begin to show up. Either you need to avoid one or more additional foods, or your diet is being accidentally cross-contaminated by small amounts of the foods that you are trying to avoid. If you are only avoiding gluten, the reason for the relapse of symptoms is probably due to dairy products or maybe soy in your diet. Most of us here are sensitive to dairy, and almost as many are also sensitive to soy.
Most members here who use Entocort to mask their symptoms while their intestines are healing in response to their diet changes, find that it takes at least 6 months to (in many cases) a year, before they can safely taper off the Entocort without a relapse of symptoms. Most doctors don't realize how long it takes for the gut to heal from the damage caused by food sensitivities (if they even realize that food sensitivities are the reason why the intestines are inflamed in the first place).
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.
Hi Annie,
I was also on Entocort (budesonide) but for 4 1/2 months. During that time I went gluten and dairy free. Then I was still "gurgling" so I eliminated soy and that made a big difference. When I tapered off of Entocort I found I was reacting to eggs but meds were masking it. So I cut those out and never have had a big relapse, just brief set-backs once when I was accidentally 'glutened' and more recently when one of my vitamin supplements contained soy and I didn't realize it.
I would say 6 weeks is not long at all. I'll bet most of us who were prescribed Entocort were on it for 4-6 months, and some have been on it even longer. Some take a maintenance dose of 3 mg every couple of days.
Hope this helps,
Carol
I was also on Entocort (budesonide) but for 4 1/2 months. During that time I went gluten and dairy free. Then I was still "gurgling" so I eliminated soy and that made a big difference. When I tapered off of Entocort I found I was reacting to eggs but meds were masking it. So I cut those out and never have had a big relapse, just brief set-backs once when I was accidentally 'glutened' and more recently when one of my vitamin supplements contained soy and I didn't realize it.
I would say 6 weeks is not long at all. I'll bet most of us who were prescribed Entocort were on it for 4-6 months, and some have been on it even longer. Some take a maintenance dose of 3 mg every couple of days.
Hope this helps,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
I've been taking entocort for a little over two years now. I have been tapering for a long time and have been primarily on a low dosage for most of my use. Be patient because it can take time.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Thanks for your replies. I know I have to stay positive and just remember one day at a time. I am sure gluten is a problem for me but other things I just don't know. I am thinking about doing the testing (Entorlab?) I have heard about on this board. I get the feeling my doc, like many other docs doesn't really buy into the gluten problem without being Celiac, which I am not- he was very neutral on that when asked.
Welcome Annie. Most doctors don't know much about the connection to food that MC ( or any IBD) has. It's sad, because so many people are suffering because they are getting bad info or no info.
I was on Budesonide for six months. During that time I cut out Gluten, dairy, RAW FRUITS AND VEGGIES, beans and legumes, acidy foods , spicy foods, and caffeine. And I also cut way back on sugar. All of these things can get in the way of healing. I was on 9mg. for one month, 6mg. for two months, 3mg. for two months, and slowly tapered off from there. It takes a long time to heal the gut. When my dose got low, I noticed that I was reacting to the peanut butter i was eating, so I also cut soy out ( they are legumes, which are related to soy).
It's two years now from Dx and I have been able to add many things back into my diet. I still remain gluten, dairy, and soy free though.
Histamines are another thing that could be causing inflammation for you. it does for me, so I an OTC antihistamine each day.Otherwise I am doing very well and stay on this board to help others mostly…although I am always learning.
The Enterolab test is a good idea if you want to know for sure what your main triggers are. it's something you will have to probably have to do on your own though. Most doctors don't believe in it.
If you haven't bought Tex's book, maybe you should it's full of great info and explanations. Just click on the picture of it in the upper right hand corner of this page which will take you to Amazon.
Hope you figure it all out. Ask anything and keep us posted on your progress
Leah
I was on Budesonide for six months. During that time I cut out Gluten, dairy, RAW FRUITS AND VEGGIES, beans and legumes, acidy foods , spicy foods, and caffeine. And I also cut way back on sugar. All of these things can get in the way of healing. I was on 9mg. for one month, 6mg. for two months, 3mg. for two months, and slowly tapered off from there. It takes a long time to heal the gut. When my dose got low, I noticed that I was reacting to the peanut butter i was eating, so I also cut soy out ( they are legumes, which are related to soy).
It's two years now from Dx and I have been able to add many things back into my diet. I still remain gluten, dairy, and soy free though.
Histamines are another thing that could be causing inflammation for you. it does for me, so I an OTC antihistamine each day.Otherwise I am doing very well and stay on this board to help others mostly…although I am always learning.
The Enterolab test is a good idea if you want to know for sure what your main triggers are. it's something you will have to probably have to do on your own though. Most doctors don't believe in it.
If you haven't bought Tex's book, maybe you should it's full of great info and explanations. Just click on the picture of it in the upper right hand corner of this page which will take you to Amazon.
Hope you figure it all out. Ask anything and keep us posted on your progress
Leah
Endocort vs. lialda
Just wondering if I should be on endocort instead of lialda. Any ideas for me?
Oh my, it sounds like you are still eating something you shouldn't. Have you looked at soy or eggs as a possible culprit? Or are you eating fiber in the form of RAW fruits and veggies? Too much sugar or artificial sweeteners? Caffeine? You are still reacting to SOMETHING. If I was in your shoes, I would take ALL of the things I mentioned out and see if you see a marked difference. If you do, then you can test each food back in individually to figure out which is the problem.
Good luck
Leah
Good luck
Leah
yes! If you are buying packaged GF products, then there is a chance that you are reacting to one of the ingredients… maybe the xanthan gum? I know that I couldn't handle all those products until I had healed at least 6 months… and even then, I sometimes get the "grumbles"
The bananas could be giving you problems. I STILL can't eat them after two years!
Experiment and try to figure it out.
Leah
The bananas could be giving you problems. I STILL can't eat them after two years!
Experiment and try to figure it out.
Leah
Thanks,Leah I will try to avoid the xanthum gum and bananas and see how it goes. What fruit can I have? Canned fruit ok to try? I am so limited in what I can eat that I am getting very discouraged. I have lost weight and really can't afford to lose anymore but having problems trying to eat enough calories. Any suggestions on that? I really appreciate finally connecting with someone about this whole crazy disease.
Sometimes processed foods (especially baked goods or mixes for baking) contain flours that are cross-contaminated with gluten. Most people (and most manufacturers) assume that grains that are normally gluten-free, are indeed gluten-free. And this is usually true, but unfortunately it's not always true about flours. The sad reality is that a surprising amount of flour is cross-contaminated with gluten. This is probably due to the fact that (I'm just guessing here, based on my own limited experience in the industry) milling equipment is extremely difficult to clean, and as a result, stone mills, especially, are apparently a common source of cross-contamination in production facilities that sometimes process wheat, rye, or barley.
A lot of canned fruits work OK, because they are peeled and cooked. Just be careful that you don't overdo it, because fruit contains a lot of sugar, and most of us can't handle large amounts of sugar (especially fructose) when we are healing.
Tex
A lot of canned fruits work OK, because they are peeled and cooked. Just be careful that you don't overdo it, because fruit contains a lot of sugar, and most of us can't handle large amounts of sugar (especially fructose) when we are healing.
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.
When I was first healing, I did eat some canned peaches ( packed in juice that I didn't eat) and was OK with about half a can. I have issues with fructose, so I really have to be careful with fruit.
When it comes to gaining weight, I ate rice and sweet potatoes for starch. I also use coconut oil to cook with, coconut milk to add creaminess to soups and curries, avocado ( even though it's high histamine), black olives, Nitrite free bacon, ribs…etc.
Does that help? Now I am having to limit the amount of starch I eat because I am gaining weight! Boy, how things change
Leah
When it comes to gaining weight, I ate rice and sweet potatoes for starch. I also use coconut oil to cook with, coconut milk to add creaminess to soups and curries, avocado ( even though it's high histamine), black olives, Nitrite free bacon, ribs…etc.
Does that help? Now I am having to limit the amount of starch I eat because I am gaining weight! Boy, how things change
Leah