Thanks Tex,
BTW, I just started taking a Probiotic called Culturelle. I read the ingredient list and they seem to be safe for me. I'll post something if I feel it was of any benefit to me, in a few weeks. Any comments you may have are always appreciated.
Hotrod
Weaning Off Entocort
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hotrod,
If I remember correctly, that's the one that Polly had an adverse reaction to, but I'm thinking that at one time Dr. Fine used to recommend it. I could be wrong on both counts, though, due to the increasing severity of my CRS.
Tex
If I remember correctly, that's the one that Polly had an adverse reaction to, but I'm thinking that at one time Dr. Fine used to recommend it. I could be wrong on both counts, though, due to the increasing severity of my CRS.
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 hate to report this, but I feel like I need to be honest. Yesterday I had urgent D 5 times. So far today, I've had it 4 times. It seems that I have come full circle and I'm right back to where I was when I was Dx'd, in spite of all of my dietary changes.
I began taking Entocort this morning, 2 pills. I'm hoping that it will bring relief sooner than when I first took it and was only eliminating gluten from my diet. I believe it took 3-4 weeks before solid BMs appeared.
I have no idea why I've "lost it". It seems like the diet should have made some difference in the severity of my symptoms, but it hasn't. I'm still following it and am wondering if I have an unidentified intolerance that went unnoticed while I was on Entocort. Right now, I can't focus on that - I need to get my life back. It appears that I'm going to be one of those people who has to use Entocort regularly in order to maintain "remission." Today I can accept that, and I'm grateful Entocort will give me relief. A couple of days ago, it was hard to accept, especially considering all the foods I've eliminated from my diet. It isn't fair, but who said this disease is fair?
Gloria
I began taking Entocort this morning, 2 pills. I'm hoping that it will bring relief sooner than when I first took it and was only eliminating gluten from my diet. I believe it took 3-4 weeks before solid BMs appeared.
I have no idea why I've "lost it". It seems like the diet should have made some difference in the severity of my symptoms, but it hasn't. I'm still following it and am wondering if I have an unidentified intolerance that went unnoticed while I was on Entocort. Right now, I can't focus on that - I need to get my life back. It appears that I'm going to be one of those people who has to use Entocort regularly in order to maintain "remission." Today I can accept that, and I'm grateful Entocort will give me relief. A couple of days ago, it was hard to accept, especially considering all the foods I've eliminated from my diet. It isn't fair, but who said this disease is fair?
Gloria
You never know what you can do until you have to do it.
Gloria,
We have always stated here that it is the choice and decision of each person to decide which option is best for and suits each person. Diet or meds or both.
You have worked so hard and eliminated so many foods.
If you decide that you need to be on the Entocort , you have my support in your choice.
Love
Dee~~~
We have always stated here that it is the choice and decision of each person to decide which option is best for and suits each person. Diet or meds or both.
You have worked so hard and eliminated so many foods.
If you decide that you need to be on the Entocort , you have my support in your choice.
Love
Dee~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning Gloria,
Please do not feel alone in this. I have eliminated so many things and even had to make the choice to give up being a vegan for this disease - a very, very hard choice to make. As much as I have eliminated, at times I feel like I am right where I was in the beginning but without the 30 or 40 trips a day to the loo. I have no idea who Norman is and have totally given up looking for him. I just take it day by day and also am doing it with diet alone since Entocort and I have not seen eye to eye. LOL
Hang in there and we are here for support and DON'T give up!
Love, Maggie
Please do not feel alone in this. I have eliminated so many things and even had to make the choice to give up being a vegan for this disease - a very, very hard choice to make. As much as I have eliminated, at times I feel like I am right where I was in the beginning but without the 30 or 40 trips a day to the loo. I have no idea who Norman is and have totally given up looking for him. I just take it day by day and also am doing it with diet alone since Entocort and I have not seen eye to eye. LOL
Hang in there and we are here for support and DON'T give up!
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Maggie, Hotrod, Tex, and Dee,
Thank you for your support. I know that I can count of the members of the board to stand by me. It makes having this disease so much easier.
Maggie, it's nice to see your intolerances listed. I don't remember seeing them before, but I haven't been looking lately. When I first came on board, I immediately looked for the "list." It's helpful to see what foods others have had to eliminate in their quest. I think your list beats everyone's. Polly may have tied with you. Not that we're in a contest for who is the most deprived! LOL. It's really unfortunate that you had side effects with Entocort because I remember that it brought you much needed relief.
Gloria
Thank you for your support. I know that I can count of the members of the board to stand by me. It makes having this disease so much easier.
Maggie, it's nice to see your intolerances listed. I don't remember seeing them before, but I haven't been looking lately. When I first came on board, I immediately looked for the "list." It's helpful to see what foods others have had to eliminate in their quest. I think your list beats everyone's. Polly may have tied with you. Not that we're in a contest for who is the most deprived! LOL. It's really unfortunate that you had side effects with Entocort because I remember that it brought you much needed relief.
Gloria
You never know what you can do until you have to do it.
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Hi Gloria,
I had the intolerances listed at one time and somehow I lost them so I have added them again. Honestly think I need to add legumes but the jury is still out on that one. Hope one day that the list is much shorter than it currently is.
Glad we are here for other family member's support.
Love, Maggie
I had the intolerances listed at one time and somehow I lost them so I have added them again. Honestly think I need to add legumes but the jury is still out on that one. Hope one day that the list is much shorter than it currently is.
Glad we are here for other family member's support.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
I thought I'd give a quick update. I started taking two Entocort pills on Tuesday. Wednesday was another bad D day with 5 or 6 trips to the loo. But on Thursday, I was back down to two trips and starting to see a somewhat formed stool again. It's 6 p.m. on Friday and I still haven't gone yet. Seems like the fastest response to Entocort that I've ever seen. I don't really know what to make of it, but I'm glad for the immediate relief. As soon as I'm back to normal, I'll probably go back down to 1 Entocort per day and stay on it for the time being.
Gloria
Gloria
You never know what you can do until you have to do it.
I've stopped reeling from my relapse and have had time to reflect on possible explanations. I'm still on 2 Entocort a day and am seeing Norman sometimes, nearly Normans the rest of the time. I'm hoping that the quick response I had to Entocort this time (2 days) means that I'm mostly healed. I plan on staying on 2 a day until Norman is a steady visitor, then I'll stay on 1 for a while. I'm in no hurry to repeat the relapse.
As I looked over my food journal, I noticed that I resumed drinking orange juice at about the same time that I started having softer BMs. I had given it up for several months. I think I assumed that since I wasn't having any problems eating lemons and lemon juice occasionally, orange juice should also be OK. I've stopped drinking it again. If it turns out that the orange juice was a problem, then that's one more intolerant food that Polly and I share.
I also was eating cooked green peppers instead of substituting red peppers. I've corrected that too.
The final concern I have is corn. I've finally ordered the Freeda Geri and D vitamins because I absolutely couldn't find any multiple vitamin without corn. I had urgent D the day after Thanksgiving (but so did DH). We went to my DD's in-laws and the only items I ate that the hostess made were turkey and cranberries. I'm worried that it was due to the corn in the GF gravy mix I brought or the cornstarch in the blueberry cobbler I made. I hope that I'm not intolerant to corn, but it's on Polly's list and we have the same genetic test results. Corn is pervasive and I'm not sure how I can eliminate it entirely when I still can't eat many fresh fruits and have to eat canned fruits. I've reduced my corn intake as best I can, but it's hidden in so many foods. I can't be sure I've totally eliminated it.
I have decided that I'm drawing the line with tomatoes, which are also on Polly's list. Many of my dinner meals contain tomatoes and there isn't any adequate substitute for them. If it turns out that tomatoes are a problem, then I'll maintain with Entocort. I've discussed this with DH and he agrees. Chocolate is also another non-negotiable, though I've cut down on it considerably.
I think the only other food on Polly's list that I haven't dealt with is carrageenan. I don't even know where to begin with that one.
Gloria
As I looked over my food journal, I noticed that I resumed drinking orange juice at about the same time that I started having softer BMs. I had given it up for several months. I think I assumed that since I wasn't having any problems eating lemons and lemon juice occasionally, orange juice should also be OK. I've stopped drinking it again. If it turns out that the orange juice was a problem, then that's one more intolerant food that Polly and I share.
I also was eating cooked green peppers instead of substituting red peppers. I've corrected that too.
The final concern I have is corn. I've finally ordered the Freeda Geri and D vitamins because I absolutely couldn't find any multiple vitamin without corn. I had urgent D the day after Thanksgiving (but so did DH). We went to my DD's in-laws and the only items I ate that the hostess made were turkey and cranberries. I'm worried that it was due to the corn in the GF gravy mix I brought or the cornstarch in the blueberry cobbler I made. I hope that I'm not intolerant to corn, but it's on Polly's list and we have the same genetic test results. Corn is pervasive and I'm not sure how I can eliminate it entirely when I still can't eat many fresh fruits and have to eat canned fruits. I've reduced my corn intake as best I can, but it's hidden in so many foods. I can't be sure I've totally eliminated it.
I have decided that I'm drawing the line with tomatoes, which are also on Polly's list. Many of my dinner meals contain tomatoes and there isn't any adequate substitute for them. If it turns out that tomatoes are a problem, then I'll maintain with Entocort. I've discussed this with DH and he agrees. Chocolate is also another non-negotiable, though I've cut down on it considerably.
I think the only other food on Polly's list that I haven't dealt with is carrageenan. I don't even know where to begin with that one.
Gloria
You never know what you can do until you have to do it.
Gloria,
I reacted so violently to orange juice, that I hadn't tried any in almost five years. I bought some last week, though, and it seems to work OK, now.
Dishes such as blueberry cobbler, which often contain a lot of sugar, will usually cause D for me, because sugar is a trigger for the leaky gut syndrome for some of us, (I know it is for me). If you ate a significant amount of it, (assuming that it contained a lot of sugar), that could have been what caused your D. (But then, since your hubby also had D, the problem could have been due to a virus, or no telling what). You may be suspecting corn, unfairly. In all honesty, though, I never could conclusively prove that corn caused problems for me, but I finally got tired of fiddling with it, and so I cut out all the junk that I suspected, and then I was able achieve remission.
If you are referring to cutting out green bell peppers - yes, they should be much more problematic than red bell peppers, since red bell peppers are the only ones that are actually ripe, and therefore, not toxic. Bell peppers, however, bother a lot of people who don't even have MC, (due to the solanine).
Tex
I reacted so violently to orange juice, that I hadn't tried any in almost five years. I bought some last week, though, and it seems to work OK, now.
Dishes such as blueberry cobbler, which often contain a lot of sugar, will usually cause D for me, because sugar is a trigger for the leaky gut syndrome for some of us, (I know it is for me). If you ate a significant amount of it, (assuming that it contained a lot of sugar), that could have been what caused your D. (But then, since your hubby also had D, the problem could have been due to a virus, or no telling what). You may be suspecting corn, unfairly. In all honesty, though, I never could conclusively prove that corn caused problems for me, but I finally got tired of fiddling with it, and so I cut out all the junk that I suspected, and then I was able achieve remission.
If you are referring to cutting out green bell peppers - yes, they should be much more problematic than red bell peppers, since red bell peppers are the only ones that are actually ripe, and therefore, not toxic. Bell peppers, however, bother a lot of people who don't even have MC, (due to the solanine).
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.
Tex,
It's interesting to hear about your orange juice experience because no one really mentions it as a problem. Pineapple has been a satisfactory replacement for oranges, so I'm OK with giving them up again.
I had a week or so preceding my flare where I was eating green peppers almost every night, so they were likely a contributor to the problem.
I'll do the best I can with the corn. I haven't noticed any problems in the past, but like you said, you get tired of fiddling with everything.
Gloria
It's interesting to hear about your orange juice experience because no one really mentions it as a problem. Pineapple has been a satisfactory replacement for oranges, so I'm OK with giving them up again.
I had a week or so preceding my flare where I was eating green peppers almost every night, so they were likely a contributor to the problem.
I'll do the best I can with the corn. I haven't noticed any problems in the past, but like you said, you get tired of fiddling with everything.
Gloria
You never know what you can do until you have to do it.
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning Gloria,
Orange juice is a definite problem for me too. I also cannot do the tomatoes or green peppers and the red peppers are almost as bad therefore, I consider myself nightshade free since eggplant does the same. Safe with the potatoes too.
Love, Maggie
Orange juice is a definite problem for me too. I also cannot do the tomatoes or green peppers and the red peppers are almost as bad therefore, I consider myself nightshade free since eggplant does the same. Safe with the potatoes too.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
It's been nearly a month since I've posted my progress. I resumed taking 6 mg Entorcort per day for a little over 2 weeks, then reduced to 3 mg per day for 3 weeks. This week, I began taking 3 mg of Entocort every other day and am still doing OK. I have about 100 Entocort pills left, so I can use 1 pill every other day for the next 6 months or more. I'm not anxious to repeat my previous relapse.
I believe that I am intolerant to sweet potatoes (or yams?), which are supposed to be one of the least allergenic foods. My food diary shows a consistent pattern of a change in my stool after eating them. Since Thanksgiving, I've completely given them up, even though I love them and they have a high nutritional value. I'm a little nervous because I know that sweet potatoes are a member of the nightshade family, and I don't want to be intolerant to all nightshades.
I've also continued to eschew the orange juice and green peppers. Lemons don't seem to bother me, however. I'm eating SF chocolate chips regularly with no apparent problems. Norman is appearing 1-2 times every day. I've only had one episode of D after eating in a restaurant last week. I still consider anything less than Norman to be a signal that something is bothering me.
Things seem to be on a steady course and I'm feeling confident that I will eventually be able to manage this disease without any medication.
Gloria
I believe that I am intolerant to sweet potatoes (or yams?), which are supposed to be one of the least allergenic foods. My food diary shows a consistent pattern of a change in my stool after eating them. Since Thanksgiving, I've completely given them up, even though I love them and they have a high nutritional value. I'm a little nervous because I know that sweet potatoes are a member of the nightshade family, and I don't want to be intolerant to all nightshades.
I've also continued to eschew the orange juice and green peppers. Lemons don't seem to bother me, however. I'm eating SF chocolate chips regularly with no apparent problems. Norman is appearing 1-2 times every day. I've only had one episode of D after eating in a restaurant last week. I still consider anything less than Norman to be a signal that something is bothering me.
Things seem to be on a steady course and I'm feeling confident that I will eventually be able to manage this disease without any medication.
Gloria
You never know what you can do until you have to do it.
Gloria,
Congratulations! You seem to be doing quite well.
Actually, though, sweet potatoes are not a member of the nightshade family - they are from the morning glory family. Here's a quote from a Whole Foods site:
That certainly doesn't mean that it's not possible to be intolerant of them, though.
I hope that you don't have any interruptions of your remission, this time.
Tex
Congratulations! You seem to be doing quite well.
Actually, though, sweet potatoes are not a member of the nightshade family - they are from the morning glory family. Here's a quote from a Whole Foods site:
http://www.whfoods.com/genpage.php?tname=george&dbid=62Although the sweet potato, whose scientific name is Ipomoea batatas, belongs to the same plant order as the nightshades (Polemoniales), it does not belong to the Solanaceae family found in this order, but to a different plant family called Convolvulaceae.
That certainly doesn't mean that it's not possible to be intolerant of them, though.
I hope that you don't have any interruptions of your remission, this time.
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.