Weaning Off Entocort
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Here's an update:
It's been 7 weeks since I reduced to one Entocort pill every three days and 4 weeks since I've stopped taking it completely. If I still have any Entocort in my system, it's probably miniscule.
I am holding on to remission so far. I fluctuate between Normans, a solid BM (cloudy when flushed) and an occasional soft BM, usually after eating away from home. I don't see any gradual or consistent deterioration. If I have a little reaction one day, it clears up by the next day.
So far, so good! I don't want to celebrate just yet, but I'm pretty hopeful that I've finally figured out all of my intolerances and irritants. I've been GF for 21 months, EF, SF, DF for 19 months, and legume-free for 10 months. I thought I had everything resolved once I eliminated all legumes, but it took another 7 months to figure out other irritants, such as lettuce, orange juice, carrots, onions, and red and green peppers. I can eat them occasionally, but I have a small reaction the next day. I don't want to push my luck, so I'm avoiding them as much as possible. I'm hopeful that I'll be able to resume eating fresh fruits and salads by summer harvest time.
Keeping my
Gloria
It's been 7 weeks since I reduced to one Entocort pill every three days and 4 weeks since I've stopped taking it completely. If I still have any Entocort in my system, it's probably miniscule.
I am holding on to remission so far. I fluctuate between Normans, a solid BM (cloudy when flushed) and an occasional soft BM, usually after eating away from home. I don't see any gradual or consistent deterioration. If I have a little reaction one day, it clears up by the next day.
So far, so good! I don't want to celebrate just yet, but I'm pretty hopeful that I've finally figured out all of my intolerances and irritants. I've been GF for 21 months, EF, SF, DF for 19 months, and legume-free for 10 months. I thought I had everything resolved once I eliminated all legumes, but it took another 7 months to figure out other irritants, such as lettuce, orange juice, carrots, onions, and red and green peppers. I can eat them occasionally, but I have a small reaction the next day. I don't want to push my luck, so I'm avoiding them as much as possible. I'm hopeful that I'll be able to resume eating fresh fruits and salads by summer harvest time.
Keeping my
Gloria
You never know what you can do until you have to do it.
- MaggieRedwings
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Congratulations Gloria!
It was a long and hard road for you but it seems that you have achieved success. It is amazing that you, Polly and I have a lot of the same intolerances. I have never been tested but I am almost sure I carry the double Q gene and it seems that intolerances/irritants go hand in hand with it.
Continued success and love, Maggie
It was a long and hard road for you but it seems that you have achieved success. It is amazing that you, Polly and I have a lot of the same intolerances. I have never been tested but I am almost sure I carry the double Q gene and it seems that intolerances/irritants go hand in hand with it.
Continued success and love, Maggie
Maggie Scarpone
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Gloria,
Hotrod and Pat are quite right, of course. Congratulations!
You've come a long way, down a tough path, but you made it. Your perseverance is par excellence.
Tex
Hotrod and Pat are quite right, of course. Congratulations!
You've come a long way, down a tough path, but you made it. Your perseverance is par excellence.
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.
Never underestimate the power of Entocort.
I haven't seen Norman for a week. I'm going three times per day, though it's not urgent, which is a relief. I don't have D, but my BMs are consistently soft-solid, and are staying at that consistency. I could live with this, though I know that there's still something amiss. Sometimes my gut feels a little raw after going; sometimes not.
When I was on Entocort, my symptoms were never this consistent. One time I'd have a Norman, the next time I might have some deterioration. It was somewhat easier to determine the offending food(s). The present consistency of my stool makes me think that I'm eating something irritating every day. I first suspected my fish oil capsule because I just opened a new bottle and there was a small change in the ingredients. But I haven't taken one since Friday. I'd been eating strawberries every day, and of course, chocolate. I eliminated both of them and still had the softer stool.
What to do? It's tempting to give up and go back on the very low dosage of Entocort. I was doing fine on one pill every other day and even every three days. It's amazing to me that such a small dose would make a difference. My gut must be extremely sensitive.
I eat the following each and every day: some form of rice, chocolate, and fruit. I rotate all other foods, including potatoes, though I eat them frequently.
I'm going to stop eating all rice, chocolate and fruit for a few days and see if there's any change.
Gloria
I haven't seen Norman for a week. I'm going three times per day, though it's not urgent, which is a relief. I don't have D, but my BMs are consistently soft-solid, and are staying at that consistency. I could live with this, though I know that there's still something amiss. Sometimes my gut feels a little raw after going; sometimes not.
When I was on Entocort, my symptoms were never this consistent. One time I'd have a Norman, the next time I might have some deterioration. It was somewhat easier to determine the offending food(s). The present consistency of my stool makes me think that I'm eating something irritating every day. I first suspected my fish oil capsule because I just opened a new bottle and there was a small change in the ingredients. But I haven't taken one since Friday. I'd been eating strawberries every day, and of course, chocolate. I eliminated both of them and still had the softer stool.
What to do? It's tempting to give up and go back on the very low dosage of Entocort. I was doing fine on one pill every other day and even every three days. It's amazing to me that such a small dose would make a difference. My gut must be extremely sensitive.
I eat the following each and every day: some form of rice, chocolate, and fruit. I rotate all other foods, including potatoes, though I eat them frequently.
I'm going to stop eating all rice, chocolate and fruit for a few days and see if there's any change.
Gloria
You never know what you can do until you have to do it.
Gloria,
It doesn't seem that one pill every 3 days could provide you with that kind of relief....... HOWEVER...... at one time our Peg was maintaining on 1 Asacol a day and Asacol isn't nearly as powerful as Entocort.
So, I think a pill every 3 days is not as big a surprise as it sounds. I just don't know why. Haha
Love, Shirley
It doesn't seem that one pill every 3 days could provide you with that kind of relief....... HOWEVER...... at one time our Peg was maintaining on 1 Asacol a day and Asacol isn't nearly as powerful as Entocort.
So, I think a pill every 3 days is not as big a surprise as it sounds. I just don't know why. Haha
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Gloria,
I certainly am no expert on this as I struggle probably more than most but I have always wondered about your sugar consumption, fruit and otherwise. I would be more suspicious of those than the rice. Mentally I have compared your diet to Polly's and I would say that sugar is the major difference but like I said I am no expert here. Sorry this is happening to you. I feel confident that you will figure it out! I have always admired your ability to keep a detailed food diary.
Pat
I certainly am no expert on this as I struggle probably more than most but I have always wondered about your sugar consumption, fruit and otherwise. I would be more suspicious of those than the rice. Mentally I have compared your diet to Polly's and I would say that sugar is the major difference but like I said I am no expert here. Sorry this is happening to you. I feel confident that you will figure it out! I have always admired your ability to keep a detailed food diary.
Pat
I'm probably not giving this enough time, but I guess it's because I don't want to. I feel like I've sacrificed enough and I sure don't want to feel guilty about eating fruit.
I didn't eat any rice, chocolate or fruit yesterday and I had a very slight improvement today. Not enough of an improvement to justify radically changing my diet (again).
I've decided that I'm going to resume taking Entocort at the reduced dosage I was on. Hopefully I can continue to maintain on one pill every three days. If not, I'll go back to one pill every other day. That's not a big dosage and my remaining 60 pills will last me 120 days, or 4 more months.
Who knows - maybe in 4 months my gut will be totally healed and I can try again.
Thank you for your suggestions and concern. I'm sure this won't be my last post in this thread.
Gloria
I didn't eat any rice, chocolate or fruit yesterday and I had a very slight improvement today. Not enough of an improvement to justify radically changing my diet (again).
I've decided that I'm going to resume taking Entocort at the reduced dosage I was on. Hopefully I can continue to maintain on one pill every three days. If not, I'll go back to one pill every other day. That's not a big dosage and my remaining 60 pills will last me 120 days, or 4 more months.
Who knows - maybe in 4 months my gut will be totally healed and I can try again.
Thank you for your suggestions and concern. I'm sure this won't be my last post in this thread.
Gloria
You never know what you can do until you have to do it.
- artteacher
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.
Gloria,
I apologize if I haven't read thoroughly enough - I skimmed; but is the cod liver oil pill you take a new thing to you? or are they just slightly different ingredients than before?
I ask because I can take cod liver oil, but I can't tolerate the cod liver oil capsules, or anything else in that soft gel like capsule. Just one of them a day gives me D. It took a while to figure that one out. I think it's due to the sulfites in gelatin - and those capsules are a really concentrated gelatin. (just guessing, though)
Maybe you should try a day or two with out cod liver oil capsules?
Marsha
I apologize if I haven't read thoroughly enough - I skimmed; but is the cod liver oil pill you take a new thing to you? or are they just slightly different ingredients than before?
I ask because I can take cod liver oil, but I can't tolerate the cod liver oil capsules, or anything else in that soft gel like capsule. Just one of them a day gives me D. It took a while to figure that one out. I think it's due to the sulfites in gelatin - and those capsules are a really concentrated gelatin. (just guessing, though)
Maybe you should try a day or two with out cod liver oil capsules?
Marsha
Hi Marsha,
I'd been taking this particular brand for several months without any problems. I stopped taking it as soon as I started having the problem, but the problem persisted. I resumed taking Entocort every other day last week and am almost back to having Normans. I'm still not taking the fish oil capsules, however. I need to call the company and ask about the ingredients first.
Your point about the sulfites in the gelatin is well-taken. That's the only capsule in my vitamin regimen. The other capsule that I used to take was vitamin E. I stopped taking that once I realized it had soy in it.
Gloria
I'd been taking this particular brand for several months without any problems. I stopped taking it as soon as I started having the problem, but the problem persisted. I resumed taking Entocort every other day last week and am almost back to having Normans. I'm still not taking the fish oil capsules, however. I need to call the company and ask about the ingredients first.
Your point about the sulfites in the gelatin is well-taken. That's the only capsule in my vitamin regimen. The other capsule that I used to take was vitamin E. I stopped taking that once I realized it had soy in it.
Gloria
You never know what you can do until you have to do it.
Things have gone steadily downhill since I first reported problems. Yesterday and the day before I had D 4 times each day, in spite of taking 1 Entocort pill every other day. I even had an accident yesterday. I'm pretty much right back where I was when I was Dx'd, despite making all the dietary changes. It really baffles and frustrates me.
I increased my Entocort to 2 pills per day yesterday. I was mistaken about how many are left - I only have 29 pills, so I'll need to get a prescription renewal from my GI. I'm a little embarrassed because the last time he saw me, I told him I was in remission due to my diet. I just hope that he doesn't want to do another colonoscopy.
Naturally I've been looking over my diet and there are a few things that stand out. One is that I made some soup using Pacific chicken broth. My food diary shows that problems began after eating it the first time. Since I didn't attribute my problems to it the first time, I finished the carton a couple of days ago. I've been having D since then. Also, I began adding the calcium powder to my homemade rice milk on April 11. Each pair of capsules has 45% of the minimum daily requirement of magnesium, a laxative. I've probably been getting 1.5-2 times the daily requirement of magnesium. I've recently eaten a tomato-olive bruschetta with "safe" ingredients, but I seem to have a reaction to it. I guess if I want a spread on my crackers, I'll be using sunflower butter.
I am not certain anymore that I can control my MC exclusively by diet. I've eliminated sooo many foods, but the list doesn't seem to end. Just when I think I've found all of my intolerances/irritants and am enjoying remission, I suspect another one. I need to remind those new to the board that I'm a genetic double DQ1 and have many more intolerances than the average MCer. I still believe that controlling this disease by diet is the way to go, but the task for me is beginning to seem insurmountable.
Gloria
I increased my Entocort to 2 pills per day yesterday. I was mistaken about how many are left - I only have 29 pills, so I'll need to get a prescription renewal from my GI. I'm a little embarrassed because the last time he saw me, I told him I was in remission due to my diet. I just hope that he doesn't want to do another colonoscopy.
Naturally I've been looking over my diet and there are a few things that stand out. One is that I made some soup using Pacific chicken broth. My food diary shows that problems began after eating it the first time. Since I didn't attribute my problems to it the first time, I finished the carton a couple of days ago. I've been having D since then. Also, I began adding the calcium powder to my homemade rice milk on April 11. Each pair of capsules has 45% of the minimum daily requirement of magnesium, a laxative. I've probably been getting 1.5-2 times the daily requirement of magnesium. I've recently eaten a tomato-olive bruschetta with "safe" ingredients, but I seem to have a reaction to it. I guess if I want a spread on my crackers, I'll be using sunflower butter.
I am not certain anymore that I can control my MC exclusively by diet. I've eliminated sooo many foods, but the list doesn't seem to end. Just when I think I've found all of my intolerances/irritants and am enjoying remission, I suspect another one. I need to remind those new to the board that I'm a genetic double DQ1 and have many more intolerances than the average MCer. I still believe that controlling this disease by diet is the way to go, but the task for me is beginning to seem insurmountable.
Gloria
You never know what you can do until you have to do it.