Hi,
I was diagnosed with CC last week. I started Entocort 3 days ago. I started a Gluten free and Dairy Free diet about 2.5 months ago. I have a few questions:
1. How long will it take for the diarrhea to stop? It's still going strong.
2. From what I read in this forum, Should I take ALL 9mg of Entocort in the morning? Does it matter if I take it with or without food?
3. What kinds of foods should I eat now? At this point, I just can't tell what is good vs bad for me. It seems like everything I eat causes diarrhea?
4. I have several trips coming up....one is only 3 days; the other is overseas for 10 days. How do I prepare for that? Will airlines let you take a lot of food on the flight? What kinds of food do I pack?
Sorry for all the questions, but like many have posted, the GI doesn't think food makes a difference.
I'm 55 and female. Interesting, I also have an autosomal recessive disease called Familial Mediterranean Fever (FMF). FMF attacks cause a painful inflammation of the peritoneal cavity and diarrhea (systemic auto-inflammatory disorder) Attacks can be prevented by taking Colchicine daily. I've been taking Colchicine for many years without any issues. FMF patients lack a protein that helps control inflammation (Pyrin). I wonder if this lack of protein would also have caused my CC?
I appreciate any input and thoughts.
Thank you,
Marie
New to the forum; Questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Marie,
Welcome to our internet family. You're off to a good start by cutting out gluten and dairy. I'll attempt to answer your questions.
With Entocort, most members here see significant improvement within a week or 2, though some take a month or longer.
Tips on Traveling With MC or Another Inflammatory Bowel Disease
You're very welcome. Again, welcome to the board, and please feel free to ask anything.
Tex
Welcome to our internet family. You're off to a good start by cutting out gluten and dairy. I'll attempt to answer your questions.
Without the use of an anti-inflammatory medication to mask the symptoms, it typically takes several months or more of intestinal healing in order to reach remission as a result of the diet changes. For some of us it takes as long as 6 months to year or more, if we have severe damage, or many food sensitivities. Some of us see gradual improvement, while others see no improvement, and then virtually overnight, remission suddenly appears. Every case of MC is different, and we all respond differently to medications and to diet changes.Marie wrote:1. How long will it take for the diarrhea to stop? It's still going strong.
With Entocort, most members here see significant improvement within a week or 2, though some take a month or longer.
Glucocorticoids (corticosteroids) typically are more effective if the full dose is taken first thing in the morning, because that mimics the pattern of cortisol, the body's own natural glucocorticoid produced by the adrenal glands. It doesn't necessarily have to be taken first thing in the morning, but if it's taken later in the day it may interfere with sleep. According to the manufacturer, it doesn't matter whether Entocort is taken with food, or on an empty stomach.Marie wrote:2. From what I read in this forum, Should I take ALL 9mg of Entocort in the morning? Does it matter if I take it with or without food?
Anti-gliadin antibodies produced by the immune system in response to gluten have a half-life of 120 days, which is much, much longer than antibodies associated with any other food antigen. Therefore, after we remove gluten from our diet, it still takes a long time before the reaction against gluten diminishes to the point where it no longer dominates the immune system's response. Until that happens (that is, until the reaction against gluten declines), it typically seems that we are reacting to anything and everything. This is because early on, gluten can cause a medium to long-term reaction, rather the short term reaction that it will typically cause (if we ingest it) after our gut heals. After the antibodies against gluten settle down a bit, then the immune system will begin to recognize some of the other food sensitivities (if they exist), or it will settle down, if no other food sensitivities remain in the diet.Marie wrote:3. What kinds of foods should I eat now? At this point, I just can't tell what is good vs bad for me. It seems like everything I eat causes diarrhea?
They will allow you to take certain types of food, provided that the containers meet the current security regulations of the TSA. It's best to contact the airline a week or so prior to departure, to inform them of your needs. Copies of any letters may make it easier to get through security. Some of the members here who have done some traveling after their MC diagnosis have posted helpful suggestions, and discussions about their experiences in this forum:Marie wrote:4. I have several trips coming up....one is only 3 days; the other is overseas for 10 days. How do I prepare for that? Will airlines let you take a lot of food on the flight? What kinds of food do I pack?
Tips on Traveling With MC or Another Inflammatory Bowel Disease
I don't know much about that condition, but based on evidence that the protein is typically used by the immune system to prevent autoimmune-type inflammation from becoming self-perpetuating, I would guess that it could definitely predispose one to the development of MC (or virtually any other autoimmune-type syndrome).Marie wrote:FMF patients lack a protein that helps control inflammation (Pyrin). I wonder if this lack of protein would also have caused my CC?
You're very welcome. Again, welcome to the board, and please feel free to ask anything.
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 Marie,
I took Entocort in the morning and it did not matter with food or without. My diarrhea eased off in the first week of taking Entocort from 15 times a day to 2 or 3 times.
Entocort should be swallowed whole and should never be crushed, chewed or broken in half.
I took Entocort for 6 weeks tapering off over the last week. Then I started a food journal to track food reactions. I started basic: chicken soup, canned green beans, overcooked carrots, mashed potatoes, white rice, green tea, bananas....etc....every few days testing something new. I did not purchase GF products in the beginning and shopped at the farmer's market steering clear of processed foods.
When I travel I take rice cakes and turkey jerky because I do not react to them but everyone is different and that is one of the frustrating things. I keep hydrated by drinking lots of water. I think most of us would agree it takes time and patience to heal the inflammation. It took me about a year of experimenting. Today, I experience long periods of remission (usually from 3-6 months). When I have a flare up it's been because I have stopped being vigilant and took stupid food risks.
Good luck on improving your life by diet.
It can be done and this forum will help you on your journey.
Best,
Cory
I took Entocort in the morning and it did not matter with food or without. My diarrhea eased off in the first week of taking Entocort from 15 times a day to 2 or 3 times.
Entocort should be swallowed whole and should never be crushed, chewed or broken in half.
I took Entocort for 6 weeks tapering off over the last week. Then I started a food journal to track food reactions. I started basic: chicken soup, canned green beans, overcooked carrots, mashed potatoes, white rice, green tea, bananas....etc....every few days testing something new. I did not purchase GF products in the beginning and shopped at the farmer's market steering clear of processed foods.
When I travel I take rice cakes and turkey jerky because I do not react to them but everyone is different and that is one of the frustrating things. I keep hydrated by drinking lots of water. I think most of us would agree it takes time and patience to heal the inflammation. It took me about a year of experimenting. Today, I experience long periods of remission (usually from 3-6 months). When I have a flare up it's been because I have stopped being vigilant and took stupid food risks.
Good luck on improving your life by diet.
It can be done and this forum will help you on your journey.
Best,
Cory
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Welcome marie. So sorry to hear that you have MC though.
Tex has given you great advise and you might want to order his book. Just click the picture of it in the upper right hand corner of this page. It explains a lot.
I took Entocort for 6 months total , lowering the dose down as I got slightly constipated. It worked fast for me. At the same time, I did an elimination diet and took almost everything out that could cause problems ( except eggs. I kept them in) Besides the big four ( gluten, dairy, soy, and eggs), there are foods that you may not be intolerant to, but are considered "irritants". They could prevent you from healing because they are just too harsh on your inflamed gut right now. These include RAW FRUITS AND VEGGIES, SALAD, BEANS AND LEGUMES, citrus and citric acid, sugar and artificial sugar, acid foods like tomato products,nightshades, chocolate, and caffeine. We are all different, so it makes figuring this out much more difficult.
I kept my diet protein based and simple. I ate all fresh meats, nitrite free ( uncured) bacon and lunch meats, cooked easily digestible veggies ,eggs, white rice and rice products, almond butter, corn tortillas/chips, avocado, beets, and black olives. I only use olive oil and coconut oil and will eat chips that are fried in safflower oil. I sometimes have Chex cereal with almond milk.
Once I was off the entocort, I realized that soy was a problem and some of it's relatives ( peanut, split peas and lentils), but I have been able to add white and black beans back into my diet along with decaf coffee with coconut creamer, GF baked products, SF dark chocolate, spicy food, potatoes ( nightshades), fresh tomato ( but not sauce), small salads, small portions of certain fruits ( i still have a problem with fructose and soritol). I'm just here to let you know that there is light at the end of the tunnel for many of us. Patience is a virtue here.
As for traveling, I would use Immodium to help you control the D. It has very few side effects and is non-addictive.
Good luck and keep us posted on your progress
Leah
Tex has given you great advise and you might want to order his book. Just click the picture of it in the upper right hand corner of this page. It explains a lot.
I took Entocort for 6 months total , lowering the dose down as I got slightly constipated. It worked fast for me. At the same time, I did an elimination diet and took almost everything out that could cause problems ( except eggs. I kept them in) Besides the big four ( gluten, dairy, soy, and eggs), there are foods that you may not be intolerant to, but are considered "irritants". They could prevent you from healing because they are just too harsh on your inflamed gut right now. These include RAW FRUITS AND VEGGIES, SALAD, BEANS AND LEGUMES, citrus and citric acid, sugar and artificial sugar, acid foods like tomato products,nightshades, chocolate, and caffeine. We are all different, so it makes figuring this out much more difficult.
I kept my diet protein based and simple. I ate all fresh meats, nitrite free ( uncured) bacon and lunch meats, cooked easily digestible veggies ,eggs, white rice and rice products, almond butter, corn tortillas/chips, avocado, beets, and black olives. I only use olive oil and coconut oil and will eat chips that are fried in safflower oil. I sometimes have Chex cereal with almond milk.
Once I was off the entocort, I realized that soy was a problem and some of it's relatives ( peanut, split peas and lentils), but I have been able to add white and black beans back into my diet along with decaf coffee with coconut creamer, GF baked products, SF dark chocolate, spicy food, potatoes ( nightshades), fresh tomato ( but not sauce), small salads, small portions of certain fruits ( i still have a problem with fructose and soritol). I'm just here to let you know that there is light at the end of the tunnel for many of us. Patience is a virtue here.
As for traveling, I would use Immodium to help you control the D. It has very few side effects and is non-addictive.
Good luck and keep us posted on your progress
Leah
Marie,
It's easier for us to tolerate soluble fiber (such as psyllium) than insouble fiber (such as fruit and vegetable peels, bran, etc.), but some of us here can't tolerate either of them in significant quantities. A few members here have posted that they felt that psyllium helped them.
As Leah mentioned, Imodium is typically at least as beneficial (for reducing D), and it works for a majority of people who try it. Unlike fiber, Imodium does not irritate the gut — it merely slows down motility, which allows time for the colon to remove some water from the stool.
If you can tolerate psyllium though, and it seems to help, then there is nothing wrong with using it. As another member (Gabes) would say, "There's no right way or wrong way to treat this disease — there is only your way".
IOW, we each have to determine what works best for us, depending on our lifestyle, resources, ambitions, etc. This discussion board merely saves time by allowing us all to compare notes to see what has worked the best for most others here.
You are most welcome. And thank you for the kind remarks.
Tex
It's easier for us to tolerate soluble fiber (such as psyllium) than insouble fiber (such as fruit and vegetable peels, bran, etc.), but some of us here can't tolerate either of them in significant quantities. A few members here have posted that they felt that psyllium helped them.
As Leah mentioned, Imodium is typically at least as beneficial (for reducing D), and it works for a majority of people who try it. Unlike fiber, Imodium does not irritate the gut — it merely slows down motility, which allows time for the colon to remove some water from the stool.
If you can tolerate psyllium though, and it seems to help, then there is nothing wrong with using it. As another member (Gabes) would say, "There's no right way or wrong way to treat this disease — there is only your way".
IOW, we each have to determine what works best for us, depending on our lifestyle, resources, ambitions, etc. This discussion board merely saves time by allowing us all to compare notes to see what has worked the best for most others here.
You are most welcome. And thank you for the kind remarks.
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.
Marie,
If you have only been using Entocort for a few days, it won't have any significant effect on your EnteroLab test results. But as Donna pointed out, after you have been using it for a few weeks, it can begin to have an effect, and after a few months of use, the effect can be enough to skew your test results. So if you are going to order some tests, you would need to do so fairly soon.
Tex
If you have only been using Entocort for a few days, it won't have any significant effect on your EnteroLab test results. But as Donna pointed out, after you have been using it for a few weeks, it can begin to have an effect, and after a few months of use, the effect can be enough to skew your test results. So if you are going to order some tests, you would need to do so fairly soon.
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 All,
I'm in my 4th week of 9mg of Entocort. So far it's been great. I do have a few side effects but nothing horrible (rapid heartbeat sometimes, gassy, some stomach pain occasionally - I think these are side effects?)
I have a couple of questions:
1. How long should I stay on Entocort? I have a dr. appt in 2 weeks. I am thinking that after this first month I would drop the dosage to 6mg (month 2); then drop to 3 mg in month 3. Thoughts? I have been gluten free for about 3.5 months; and casein free for about 2 months. I have noticed some issues with a few other foods, even on Entocort - mostly gassy and bloated but mostly normal BM. So I have eliminated those foods (dried fruit, applesauce - so maybe the fructose is bothersome).
2. I know that we (MC sufferers) should watch raw veggies and fruit. But what about green smoothies - like spinach, banana, coconut water, etc? Something that would provide more vitamins and a breakfast idea beside eggs, GF toast w/ almond butter, or GF cereal with almond milk.
Thanks again for this wonderful support forum. And for Tex's book - GREAT read! I've learned so much.
Marie
I'm in my 4th week of 9mg of Entocort. So far it's been great. I do have a few side effects but nothing horrible (rapid heartbeat sometimes, gassy, some stomach pain occasionally - I think these are side effects?)
I have a couple of questions:
1. How long should I stay on Entocort? I have a dr. appt in 2 weeks. I am thinking that after this first month I would drop the dosage to 6mg (month 2); then drop to 3 mg in month 3. Thoughts? I have been gluten free for about 3.5 months; and casein free for about 2 months. I have noticed some issues with a few other foods, even on Entocort - mostly gassy and bloated but mostly normal BM. So I have eliminated those foods (dried fruit, applesauce - so maybe the fructose is bothersome).
2. I know that we (MC sufferers) should watch raw veggies and fruit. But what about green smoothies - like spinach, banana, coconut water, etc? Something that would provide more vitamins and a breakfast idea beside eggs, GF toast w/ almond butter, or GF cereal with almond milk.
Thanks again for this wonderful support forum. And for Tex's book - GREAT read! I've learned so much.
Marie
Hi Marie,
Also, if you have any kind of extremely stressful one of a kind event in period you are getting off....i.e. getting married, job change, buying a house, consider stay on longer at low end taper to get you through the event before you finally get off.
Brandy
I was a 4.5 month Entocort user. Typically on this board we find that 3 months is not quite enough time and can lead to relapse. That being said it sounds like you are doing well particularly since you were already GF and DF when starting Entocort. On the board we find people have good success at getting off at 4-5-6 months etc. Main thing is to listen to your body regarding stepdowns. When you get constipation step down quicker. At the low end consider step down taper of every other day for 2-4 weeks and then the same at every third day. This will be somewhat individualistic depending on how you feel. All in all it sounds like you are doing better than most of our newbies as you have the GF and DF under control.How long should I stay on Entocort?
Also, if you have any kind of extremely stressful one of a kind event in period you are getting off....i.e. getting married, job change, buying a house, consider stay on longer at low end taper to get you through the event before you finally get off.
Brandy
Brandy wrote:Also, if you have any kind of extremely stressful one of a kind event in period you are getting off....i.e. getting married, job change, buying a house, consider stay on longer at low end taper to get you through the event before you finally get off.
That is great insight and excellent advice! 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.
Pat,
I haven't talked to the airlines yet. But I will do that prior to my departure. I'm trying to bring mostly non liquid and not fresh (can't take fresh fruit or veggies out of the country generally) food so it shouldn't be an issue. I am going to take jerky (it's difficult to find jerky without wheat - so I will make my own using a dehydrator); I found small individual packs of almond butter - Justins brand. They will fit into the quart size bag to take on the airplane; rice cakes; GF/DF cereal. That's what I'm thinking of now.
Once I get to my destination (Israel), I can find GF/DF food. I'm doing research now looking at restaurants and markets. Mostly I wanted to be prepared for the long flight. Though I requested a GF/DF airline email I don't really trust them.
When I return I will provide an update.
Marie
I haven't talked to the airlines yet. But I will do that prior to my departure. I'm trying to bring mostly non liquid and not fresh (can't take fresh fruit or veggies out of the country generally) food so it shouldn't be an issue. I am going to take jerky (it's difficult to find jerky without wheat - so I will make my own using a dehydrator); I found small individual packs of almond butter - Justins brand. They will fit into the quart size bag to take on the airplane; rice cakes; GF/DF cereal. That's what I'm thinking of now.
Once I get to my destination (Israel), I can find GF/DF food. I'm doing research now looking at restaurants and markets. Mostly I wanted to be prepared for the long flight. Though I requested a GF/DF airline email I don't really trust them.
When I return I will provide an update.
Marie