Hi Friends,
I've been on 6mg entocort for three weeks now and not having dramatic results. I am still having either puffy poop or softly formed. It has changed color to a darker brown. I am left wondering if MC is the total picture with me as I get the sense from you all that everyone who was on entocort has pretty dramatic results.
I am completely free of the clonazapam for a couple of weeks and that feels good...although the heart racing is back as well as the lump in my throat which leads me to wonder about the subclinical graves disease diagnoses I have and whether the hyperthyroidism is somehow complicating my recovery. The good news there is I finally found a doctor who will write me a compounding perscription for methimazole....but he doesn't think it will improve my D. It's a low dose so I think I need to try it to see if helps.
I am trying to be patient...hopefully this just needs more time. I am hoping to start the thyroid medicine early next week. Does anyone have any experience with methimazole? Thanks everyone and I'll keep you all posted.
Love,
Cristi
Entocort Update
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Hi Cristi---
I have posted that Entocort didnt help me----matter of fact I had bad reactions to it-----which surprised everyone---
I had slurred speech---and was very unbalanced---when I called my GI he said---STOP it immediately---then called me the next day to see how I was---which was fine--
He was worried about a neurological issue ----BUT as we all have said----what works for one doesnt work for another!!!! SO dont let this worry you--remember meds, work slower/faster on each one of us--
As far as my thyroid issue--happy to say--my blood work-up is showing *normal* ---the first was a wee bit high but the others fine---sooooooo I am not in the needs of any thyroid meds.
My endo. will keep watch over me every 6 months---
Sorry cant help U with this situation-- the thyroid issue might be something to ask your endo. about---the racing heart kinda makes me be concerned---
Keep us informed----OK!!!
luve Barbara
I have posted that Entocort didnt help me----matter of fact I had bad reactions to it-----which surprised everyone---
I had slurred speech---and was very unbalanced---when I called my GI he said---STOP it immediately---then called me the next day to see how I was---which was fine--
He was worried about a neurological issue ----BUT as we all have said----what works for one doesnt work for another!!!! SO dont let this worry you--remember meds, work slower/faster on each one of us--
As far as my thyroid issue--happy to say--my blood work-up is showing *normal* ---the first was a wee bit high but the others fine---sooooooo I am not in the needs of any thyroid meds.
My endo. will keep watch over me every 6 months---
Sorry cant help U with this situation-- the thyroid issue might be something to ask your endo. about---the racing heart kinda makes me be concerned---
Keep us informed----OK!!!
luve Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Hi Barbara,
Thanks for sharing your experience. I don't seem to be having any bad side effects...just no great improvement in my poop. I am still being strict with my diet...no grains or any of my intolerences. I continue to lose weight which concerns me as well. All my tests indicate that my absorption of nutrients is okay and my poop sinks so my fat digestion is okay. It's just a mystery...can't really figure this out. I can post my diet if you guys think there is something going on there but with people not doing any diet and getting normal stools from using entocort I am wondering if diet is the problem. I just don't know what I am missing. Thanks for your support.
Love,
Cristi
Thanks for sharing your experience. I don't seem to be having any bad side effects...just no great improvement in my poop. I am still being strict with my diet...no grains or any of my intolerences. I continue to lose weight which concerns me as well. All my tests indicate that my absorption of nutrients is okay and my poop sinks so my fat digestion is okay. It's just a mystery...can't really figure this out. I can post my diet if you guys think there is something going on there but with people not doing any diet and getting normal stools from using entocort I am wondering if diet is the problem. I just don't know what I am missing. Thanks for your support.
Love,
Cristi
cludwig wrote:Hi Barbara,
Thanks for sharing your experience. I don't seem to be having any bad side effects...just no great improvement in my poop. I am still being strict with my diet...no grains or any of my intolerences. I continue to lose weight which concerns me as well. All my tests indicate that my absorption of nutrients is okay and my poop sinks so my fat digestion is okay. It's just a mystery...can't really figure this out. I can post my diet if you guys think there is something going on there but with people not doing any diet and getting normal stools from using entocort I am wondering if diet is the problem. I just don't know what I am missing. Thanks for your support.
Love,
Cristi
What tests have you done that tell you that this is ok?All my tests indicate that my absorption of nutrients is okay
Cristi,
I think there have been some cases where it took significantly longer than 3 weeks to get results from Entocort. If you're not having adverse reactions to it, that's a good sign - it may just need more time to take effect, (corticosteroids slowly build up with passing time, and become more effective).
If you will post the details of your diet, and the meds you are currently taking, maybe someone can spot a clue that will allow us to figure out the problem.
Love,
Tex
I think there have been some cases where it took significantly longer than 3 weeks to get results from Entocort. If you're not having adverse reactions to it, that's a good sign - it may just need more time to take effect, (corticosteroids slowly build up with passing time, and become more effective).
If you will post the details of your diet, and the meds you are currently taking, maybe someone can spot a clue that will allow us to figure out the problem.
Love,
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 Mike,
Regarding nutrient absorption....that's what my doctor told me after reviewing my blood results. I am not familiar with fitday.com.... I'll check it out.
Hi Tex,
I didn't realize that Entocort has a cummulative effect. That's encouraging news....hopefully with more time it'll kick in.
As for my diet....the only corelation (sp?) I have found between food and symptoms is that white potatoes make the joints in my hands ache terribly...hence the lack of posting lately. I eliminated them a 5 days ago and my joints are much better. So, here's what I've been eating.
2T. safe applesause
1 t. cashew butter
1-2 cups soup...chic broth, chicken breasts, tiny bits of carrot, acorn squash, and sweet potato
3 skinless chicken thighs
1/2 cup mushy green beans
!/2 a yam
sometimes I have another bowl of soup
1/3 pound pork tenderloin
1/2 cup mushy green beans
I cook with a tiny amount of olive oil. I reduced the flax oil to less than 1/2 a teaspoon and same with cod liver oil...down to less than 1/2 teaspoon. I completely eliminated these for a week without a change...don't know if that was long enough.
My naturopath gave me some glutamine to try..it says it is free of all intolerences..says free of wheat instead of gluten...so I was concerned but it says it is pure L-glutamine with nothing else. I'd like to try it if I was sure it didn't contain gluten. She also gave me some GABA to try...since the clonazapan helped with my stomach cramps she though this might help also. It says it is free of all my intolerences...so I was hoping to try that as well.
So, that's it. I brush my teeth with baking soda...don't wear lipstick or chapstick...careful with soap and shampoo. I hope you guys see something that I am missing. Thanks.
Love,
Cristi
Regarding nutrient absorption....that's what my doctor told me after reviewing my blood results. I am not familiar with fitday.com.... I'll check it out.
Hi Tex,
I didn't realize that Entocort has a cummulative effect. That's encouraging news....hopefully with more time it'll kick in.
As for my diet....the only corelation (sp?) I have found between food and symptoms is that white potatoes make the joints in my hands ache terribly...hence the lack of posting lately. I eliminated them a 5 days ago and my joints are much better. So, here's what I've been eating.
2T. safe applesause
1 t. cashew butter
1-2 cups soup...chic broth, chicken breasts, tiny bits of carrot, acorn squash, and sweet potato
3 skinless chicken thighs
1/2 cup mushy green beans
!/2 a yam
sometimes I have another bowl of soup
1/3 pound pork tenderloin
1/2 cup mushy green beans
I cook with a tiny amount of olive oil. I reduced the flax oil to less than 1/2 a teaspoon and same with cod liver oil...down to less than 1/2 teaspoon. I completely eliminated these for a week without a change...don't know if that was long enough.
My naturopath gave me some glutamine to try..it says it is free of all intolerences..says free of wheat instead of gluten...so I was concerned but it says it is pure L-glutamine with nothing else. I'd like to try it if I was sure it didn't contain gluten. She also gave me some GABA to try...since the clonazapan helped with my stomach cramps she though this might help also. It says it is free of all my intolerences...so I was hoping to try that as well.
So, that's it. I brush my teeth with baking soda...don't wear lipstick or chapstick...careful with soap and shampoo. I hope you guys see something that I am missing. Thanks.
Love,
Cristi
HI Friends,
I forgot a few things...I eliminated the applesause and the cashew butter for a week also...back when I substituted white potatoes with no noticable difference. I just lost another couple of pounds.
I was talking to my husband and we were wondering if anyone in the beginning of getting MC used the paleo diet to get to Normans. My Naturopath is a big advocate for the Paleo diet , but she says her healthy patients who adopt this diet go from constipation to softer stools. We were thinking that perhaps I need to be in a healthier place to do this diet and that adding a non-gluten grain might help bind me up until my gut heals. What grain do you think would be best other than rice?
I am also interested in the time of day that people took their entocort and if you took them all at once or spread them out during the day. I've been taking them on an empty stomach in the morning. Thanks for your help everyone.
Love,
Cristi
I forgot a few things...I eliminated the applesause and the cashew butter for a week also...back when I substituted white potatoes with no noticable difference. I just lost another couple of pounds.
I was talking to my husband and we were wondering if anyone in the beginning of getting MC used the paleo diet to get to Normans. My Naturopath is a big advocate for the Paleo diet , but she says her healthy patients who adopt this diet go from constipation to softer stools. We were thinking that perhaps I need to be in a healthier place to do this diet and that adding a non-gluten grain might help bind me up until my gut heals. What grain do you think would be best other than rice?
I am also interested in the time of day that people took their entocort and if you took them all at once or spread them out during the day. I've been taking them on an empty stomach in the morning. Thanks for your help everyone.
Love,
Cristi
Mike and Cristi
Was just wondering. I tried L-glutamine on and off for several years. As highly touted as it is to rebuild the tissue in the GI tract it gave me major problems every time I tried it . Since this is something you are both taking and apparently both still having problems I wonder if it might be a good idea to see what happens if you lay off it for a while.
I have found that a week is not really long enough to test if abstaining from something is going to help. A month is more like it for me.
Matthew
P.S. Almost all supplements are suspect for me. The further I got away from the better I felt.
Was just wondering. I tried L-glutamine on and off for several years. As highly touted as it is to rebuild the tissue in the GI tract it gave me major problems every time I tried it . Since this is something you are both taking and apparently both still having problems I wonder if it might be a good idea to see what happens if you lay off it for a while.
I have found that a week is not really long enough to test if abstaining from something is going to help. A month is more like it for me.
Matthew
P.S. Almost all supplements are suspect for me. The further I got away from the better I felt.
Hi Mathew,
I haven't started the glutamine yet...but thanks for sharing that it didn't work for you. I know you've been successful healing your colon through diet and meditation. In the beginning of your recovery did you eliminate all grains from your diet? I feel like when I eliminate all the applesause, the majority of well cooked veggies, the cashew butter and all the oils.....I'm not left with much and after doing that for a week, my weight starts to go down fast. That's why I am exploring if I should add a non gluten grain so I can survive while eliminating the other stuff longer. I seem to be able to eat yams and sweet potatoes...but white potatoes doesn't work. I am unsure what to do.
Love,Cristi
I haven't started the glutamine yet...but thanks for sharing that it didn't work for you. I know you've been successful healing your colon through diet and meditation. In the beginning of your recovery did you eliminate all grains from your diet? I feel like when I eliminate all the applesause, the majority of well cooked veggies, the cashew butter and all the oils.....I'm not left with much and after doing that for a week, my weight starts to go down fast. That's why I am exploring if I should add a non gluten grain so I can survive while eliminating the other stuff longer. I seem to be able to eat yams and sweet potatoes...but white potatoes doesn't work. I am unsure what to do.
Love,Cristi
Hi Cristi,
If Irish potatoes are causing you to have joint pain, that's a classic nightshade reaction. You probably will need to avoid all the nightshades, (the Solanaceae family of plants), including tomato, potato, eggplant, and peppers of all kinds (except black pepper). Be aware that tobacco is also a member of the nightshade family.
Most new arrivals here, who are looking for solutions, seem to concentrate on eliminating troublesome items from their diets, rather than adapting a paleo diet. Consequently, I don't recall anyone who started the paleo diet, right off the bat. I really don't see any reason, though, why it wouldn't be a good place to start.
Opinions differ on the details of the paleo diet, of course, but my opinion is that the paleo people ate mostly a meat diet, and only ate fruit, berries, roots, etc., when they were in season, (very short seasons, for most of them), and/or whenever they were close enough to a supply to visit them when they were in season. Remember, the paleo people had no refrigeration, and couldn't store most food items, since they were nomadic, and had very few ways to presereve food anyway. They could dry meat, but very few other options were available. Grain wasn't a significant option, in those days.
Maybe I'm looking at this wrong, but I don't see any reason why a paleo diet would tend to cause softer stools, unless relatively high volumes of fruit were being consumed. When I cut back on carbs, and eat closer to a paleo diet, I have to watch out for constipation.
If you are looking for a grain to eat, and rice is off limits, that doesn't leave many options. The most obvious one is corn, and if you can tolerate it, it is good for gaining weight, if you eat enough of it. Asside from corn, there is quinoa, buckwheat, millet, amaranth, and a few even more exotic choices. Most of these are pretty bland, though, flavorwise. Sorgham is another option, and is somewhat popular in South America, but nutritionally, it's very close to corn, with less flavor.
Maybe someone else will have some better ideas.
Love,
Tex
If Irish potatoes are causing you to have joint pain, that's a classic nightshade reaction. You probably will need to avoid all the nightshades, (the Solanaceae family of plants), including tomato, potato, eggplant, and peppers of all kinds (except black pepper). Be aware that tobacco is also a member of the nightshade family.
Most new arrivals here, who are looking for solutions, seem to concentrate on eliminating troublesome items from their diets, rather than adapting a paleo diet. Consequently, I don't recall anyone who started the paleo diet, right off the bat. I really don't see any reason, though, why it wouldn't be a good place to start.
Opinions differ on the details of the paleo diet, of course, but my opinion is that the paleo people ate mostly a meat diet, and only ate fruit, berries, roots, etc., when they were in season, (very short seasons, for most of them), and/or whenever they were close enough to a supply to visit them when they were in season. Remember, the paleo people had no refrigeration, and couldn't store most food items, since they were nomadic, and had very few ways to presereve food anyway. They could dry meat, but very few other options were available. Grain wasn't a significant option, in those days.
Maybe I'm looking at this wrong, but I don't see any reason why a paleo diet would tend to cause softer stools, unless relatively high volumes of fruit were being consumed. When I cut back on carbs, and eat closer to a paleo diet, I have to watch out for constipation.
If you are looking for a grain to eat, and rice is off limits, that doesn't leave many options. The most obvious one is corn, and if you can tolerate it, it is good for gaining weight, if you eat enough of it. Asside from corn, there is quinoa, buckwheat, millet, amaranth, and a few even more exotic choices. Most of these are pretty bland, though, flavorwise. Sorgham is another option, and is somewhat popular in South America, but nutritionally, it's very close to corn, with less flavor.
Maybe someone else will have some better ideas.
Love,
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.
Cristi-
Within a couple of months of starting the diet I eliminated all grains. I wrote to Dr. Fine about doing this and how much better I felt along with a few other questions. He was so supportive in what I had found that I was a bit overwhelmed. I have never looked back.
Some ideas
Breakfast- Green tea- bacon and eggs with leftover vegetables- Winter squash omelet with leftover pork roast- buckwheat muffins(buckwheat is a fruit not a grain) with leftover salmon-Leftover shrimp and a baked apple- banana pancakes (One banana, one egg, one tablespoon almond flour, fry up like pancakes) with leftover salmon or pork
Lunch- I makes several kinds of soup on the weekend, chicken soup and pork soup are my favorites but carrot is also very good. Chicken soup is so good and so easy. Put four leg sections, thigh and leg, in the bottom of the pot. Fill the rest of the pot with chopped carrots, chopped celery, a few cloves of garlic, a little ginger, chopped Zucchini and chopped onions. Cover with pure water. Simmer four or five hours if you are flaring and just drink the broth. Later I did not cook it as long and was able to eat more and more of the vegetables and more and more of the meat.
Dinner- Chicken, Pork or beef. Natural if you can afford it, grain fed if you are rich. Find some kind of green vegetable that works for you and eat a moderate amount. Zucchini with the seeds scooped out was one of the first that worked for me. The fiber in winter squash has always worked for me. Butternut and Acorn are the most common varieties but others can be found at farmers markets this time of year. White potatoes have never worked for me but none of the nightshades do. Other root vegetables are great in winter.
Snacks. Half an apple dipped in almond or walnut butter were the first things that worked for me. Don’t get carried away with either one
Don’t over eat at any meal. Don’t get really hungry. The best snacks are a little bit of what you would eat at any meal. ALWAYS sit down to eat. Gobbling , eating in a hurry or just stuffing something down because I have gotten to hungry is the worst thing I can do to myself. Digestion start is the mouth. Chew,Chew, Chew. I take at least forty five minutes to eat a moderate meal, sometimes an hour. A snack takes twenty minutes. Take a few minutes to relax before during and after eating anything. Savor every bite. I sometimes found that my mind was so busy that I never was aware of what I was eating or even if I had enjoyed it, its flavor, texture or aroma.
So these are a few of the things that have worked for me. Experiment, You will soon be giving me some ideas.
Matthew
Within a couple of months of starting the diet I eliminated all grains. I wrote to Dr. Fine about doing this and how much better I felt along with a few other questions. He was so supportive in what I had found that I was a bit overwhelmed. I have never looked back.
Some ideas
Breakfast- Green tea- bacon and eggs with leftover vegetables- Winter squash omelet with leftover pork roast- buckwheat muffins(buckwheat is a fruit not a grain) with leftover salmon-Leftover shrimp and a baked apple- banana pancakes (One banana, one egg, one tablespoon almond flour, fry up like pancakes) with leftover salmon or pork
Lunch- I makes several kinds of soup on the weekend, chicken soup and pork soup are my favorites but carrot is also very good. Chicken soup is so good and so easy. Put four leg sections, thigh and leg, in the bottom of the pot. Fill the rest of the pot with chopped carrots, chopped celery, a few cloves of garlic, a little ginger, chopped Zucchini and chopped onions. Cover with pure water. Simmer four or five hours if you are flaring and just drink the broth. Later I did not cook it as long and was able to eat more and more of the vegetables and more and more of the meat.
Dinner- Chicken, Pork or beef. Natural if you can afford it, grain fed if you are rich. Find some kind of green vegetable that works for you and eat a moderate amount. Zucchini with the seeds scooped out was one of the first that worked for me. The fiber in winter squash has always worked for me. Butternut and Acorn are the most common varieties but others can be found at farmers markets this time of year. White potatoes have never worked for me but none of the nightshades do. Other root vegetables are great in winter.
Snacks. Half an apple dipped in almond or walnut butter were the first things that worked for me. Don’t get carried away with either one
Don’t over eat at any meal. Don’t get really hungry. The best snacks are a little bit of what you would eat at any meal. ALWAYS sit down to eat. Gobbling , eating in a hurry or just stuffing something down because I have gotten to hungry is the worst thing I can do to myself. Digestion start is the mouth. Chew,Chew, Chew. I take at least forty five minutes to eat a moderate meal, sometimes an hour. A snack takes twenty minutes. Take a few minutes to relax before during and after eating anything. Savor every bite. I sometimes found that my mind was so busy that I never was aware of what I was eating or even if I had enjoyed it, its flavor, texture or aroma.
So these are a few of the things that have worked for me. Experiment, You will soon be giving me some ideas.
Matthew
Thanks so much Tex and Mathew,
I'll keep working on this. It helps so much to bounce ideas off you guys. I do feel better and stronger the longer I eat Paleo....just hasen't healed the colon yet. It's strange because when I first found this site and read about your symptoms, my D wasen't as frequent or as loose as many of you described so I assumed incorrectly that I would improve quicker. Boy was I wrong. Well, I'll keep trying...I'd be going crazy with this stuff without everyones help here.
Love,
Cristi
I'll keep working on this. It helps so much to bounce ideas off you guys. I do feel better and stronger the longer I eat Paleo....just hasen't healed the colon yet. It's strange because when I first found this site and read about your symptoms, my D wasen't as frequent or as loose as many of you described so I assumed incorrectly that I would improve quicker. Boy was I wrong. Well, I'll keep trying...I'd be going crazy with this stuff without everyones help here.
Love,
Cristi