Gloria,
Thank you so much for your detailed account of your MC "journey". You're a true inspiration and help me accept what I'm going through.
Love,
Kari
Weaning Off Entocort
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
who or what is Norman?
ok, i admit I'm new and getting into the swing of all these acronyms is sometimes a challenge, but who or what is Norman or Normands? I THINK I know what you mean but I have to ask.
also, if it's what I think it is, then is there an alternate name for "D"?
Clare
also, if it's what I think it is, then is there an alternate name for "D"?
Clare
Hi Clare,
These old posts should answer your questions.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=845
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=647
Tex
These old posts should answer your questions.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=845
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=647
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.
ACRONYM INDEX
Tex,
thanks for clarifying "Norman" for me in that post. I am still laughing about the poop descriptions - TOO FUNNY
yeah, we all need a Mona Lisa once in awhile to make our day!
when I saw the movie "the Bucket List" with Jack Nicholson, one of the funniest lines was him giving someone advice starting with: "Never trust a fart". My friend said he didn't get that line and, of course, I totally got it!
Clare
thanks for clarifying "Norman" for me in that post. I am still laughing about the poop descriptions - TOO FUNNY
yeah, we all need a Mona Lisa once in awhile to make our day!when I saw the movie "the Bucket List" with Jack Nicholson, one of the funniest lines was him giving someone advice starting with: "Never trust a fart". My friend said he didn't get that line and, of course, I totally got it!
Clare
Yep, this disease can be a hard teacher, but it definitely teaches us both patience and respect.Clare wrote:My friend said he didn't get that line and, of course, I totally got it!
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.
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Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
-
Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Dear Gloria;
I am so glad you posted the link to your Weaning off Entocort thread for catzrule today, because I have just spent this evening reading your thread it in it's entirety, and I previously didn't even know it existed. My goodness.... what a journey you have been on. Having had to do my own investigation for food culprits this summer (a micro version of yours) I know some level of the frustration and despair you have felt, and it almost ripped my heart out to read your posts.
Thank you. Your tenacity and determination is truly inspiring, and humbling. For once I am at a loss for words. I wish for you continued healing and hopefully, remission. If any one should have it, you must.
Linda
I am so glad you posted the link to your Weaning off Entocort thread for catzrule today, because I have just spent this evening reading your thread it in it's entirety, and I previously didn't even know it existed. My goodness.... what a journey you have been on. Having had to do my own investigation for food culprits this summer (a micro version of yours) I know some level of the frustration and despair you have felt, and it almost ripped my heart out to read your posts.
Thank you. Your tenacity and determination is truly inspiring, and humbling. For once I am at a loss for words. I wish for you continued healing and hopefully, remission. If any one should have it, you must.
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Three and a half months have passed since my last post in December. I continued to have normal BMs just once per day. I reduced to 6 mg. Entocort per day December 1 because I was beginning to strain to have a BM. On February 4, I reduced to 3 mg. per day, again because of straining. Norman continued to visit once per day.
I have given up amaranth because I seemed to have some problems with it, and I also notice some deterioration in Norman when I eat nut butters, so I've given them up for the most part. The only one I'm eating is Barney Almond nut butter because it is very smooth, like peanut butter.
On February 25, I reduced to one Entocort every other day. The first couple of times I didn't take any Entocort, I had a slight deterioration in Norman: pieces instead of one solid, or a rough-edged Norman, not a smooth one. I went back to one Entocort per day for four days, then decided to stay with my plan of reducing it on March 5. For the past few days, I've had perfect Normans each day, whether or not I've taken Entocort the prior day. I suspect that my gut has a little adjustment period where it needs to get used to a reduction in the amount of steroid.
I had begun testing new foods according to the LEAP program at the same time I was reducing Entocort, but it was confusing whether the change in my BMs were due to the reduction in Entocort or to the new foods. I've decided to not try any new foods during this phase-out period so that I can correctly attribute any deterioration to reducing Entocort.
My diet remains simple: meats: turkey, pork, lamb; vegetables: asparagus, cauliflower, Brussel sprouts, grains/seeds: corn flour and cereal, quinoa flour, rice, arrowroot, coconut milk, and homemade almond milk, all used to make muffins, bread or puddings, and Barney almond nut butter. My weight is 98 lbs.
I'm visiting my daughter in Utah on April 5 for a week, so I will probably reduce Entocort when I return, if all continues to go well. This reduction time still seems different from other times. My gut seems calmer and I don't have any major changes in my BMs. I am
, but also keep reminding myself that I've been down this road before. It will be at least 2 more months before I know if I'm successful.
Gloria
I have given up amaranth because I seemed to have some problems with it, and I also notice some deterioration in Norman when I eat nut butters, so I've given them up for the most part. The only one I'm eating is Barney Almond nut butter because it is very smooth, like peanut butter.
On February 25, I reduced to one Entocort every other day. The first couple of times I didn't take any Entocort, I had a slight deterioration in Norman: pieces instead of one solid, or a rough-edged Norman, not a smooth one. I went back to one Entocort per day for four days, then decided to stay with my plan of reducing it on March 5. For the past few days, I've had perfect Normans each day, whether or not I've taken Entocort the prior day. I suspect that my gut has a little adjustment period where it needs to get used to a reduction in the amount of steroid.
I had begun testing new foods according to the LEAP program at the same time I was reducing Entocort, but it was confusing whether the change in my BMs were due to the reduction in Entocort or to the new foods. I've decided to not try any new foods during this phase-out period so that I can correctly attribute any deterioration to reducing Entocort.
My diet remains simple: meats: turkey, pork, lamb; vegetables: asparagus, cauliflower, Brussel sprouts, grains/seeds: corn flour and cereal, quinoa flour, rice, arrowroot, coconut milk, and homemade almond milk, all used to make muffins, bread or puddings, and Barney almond nut butter. My weight is 98 lbs.
I'm visiting my daughter in Utah on April 5 for a week, so I will probably reduce Entocort when I return, if all continues to go well. This reduction time still seems different from other times. My gut seems calmer and I don't have any major changes in my BMs. I am
, but also keep reminding myself that I've been down this road before. It will be at least 2 more months before I know if I'm successful.Gloria
You never know what you can do until you have to do it.
Now that's good news Gloria. You have been so steadfast in keeping your diet and trying to reduce Entocort. Hoping thing's are moving in the right direction for you.Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
An intermediate update:
On March 12, I reduced my Entocort dosage to 3 mg. every three days and continued that dosage for 1 month. I have been completely off of Entocort since April 12, or nearly 3 weeks.
I started seeing some deterioration within 4 days, having gas and needing to go two, sometimes three times per day. I think the amount of residue Entocort left in my system is very small, if any. I took 1/2 Imodium one day, and a week later, took the other 1/2 Imodium. I have had D once.
Then I had an Aha! moment. I was surprised that I had a perfect Norman the day after eating at our favorite Mexican restaurant. As I compared that meal with my regular meals, I noticed that I hadn't had any ghee that day. That information, coupled with the bad reaction to the garlic-butter sauce I had in a restaurant in Utah, made me very suspicious of ghee. I began eliminating it from my diet, and I began to see Normans again.
I am very sad about giving up ghee. I love butter and ghee is even better than butter. I make my own ghee, and it's possible that I made a bad batch, ie., there's some trace casein in it. I will probably test it in the future by purchasing some, but right now it seems probable that it was causing me problems. I had to quickly find a replacement for it because Passover has come and gone, and that is the only time margarine is available without soy. I don't think I can eat Earth Balance because it has pea protein, and I tested highly reactive to peas on the MRT test. I found some Mother's Margarine made for Passover, and purchased what I hope is a year's supply. I need to test olive oil and I probably can use coconut oil, too.
I've continued to have Normans, no gas or urgency for the past several days. I'm not testing any foods right now and am eating the same diet I have since September. I'm that I have finally found my last intolerance. It's taken me nearly 4 years. Thank Heaven for the U.S.A. pharmaceutical company that invented Entocort. I would have been miserable for the past 4 years without it. Others here shouldn't be discouraged. The MRT test helped immensely, and I would recommend it to anyone who cannot achieve remission within several months. I've still had to do additional detective work, but the test helped eliminate foods I never suspected.
I have over a month to go before I'll be home free, but I'm feeling pretty confident. I've always felt that if remission is elusive, it's because we haven't found all of our food intolerances. We need to keep eliminating, as unpleasant as it may be.
Gloria
On March 12, I reduced my Entocort dosage to 3 mg. every three days and continued that dosage for 1 month. I have been completely off of Entocort since April 12, or nearly 3 weeks.
I started seeing some deterioration within 4 days, having gas and needing to go two, sometimes three times per day. I think the amount of residue Entocort left in my system is very small, if any. I took 1/2 Imodium one day, and a week later, took the other 1/2 Imodium. I have had D once.
Then I had an Aha! moment. I was surprised that I had a perfect Norman the day after eating at our favorite Mexican restaurant. As I compared that meal with my regular meals, I noticed that I hadn't had any ghee that day. That information, coupled with the bad reaction to the garlic-butter sauce I had in a restaurant in Utah, made me very suspicious of ghee. I began eliminating it from my diet, and I began to see Normans again.
I am very sad about giving up ghee. I love butter and ghee is even better than butter. I make my own ghee, and it's possible that I made a bad batch, ie., there's some trace casein in it. I will probably test it in the future by purchasing some, but right now it seems probable that it was causing me problems. I had to quickly find a replacement for it because Passover has come and gone, and that is the only time margarine is available without soy. I don't think I can eat Earth Balance because it has pea protein, and I tested highly reactive to peas on the MRT test. I found some Mother's Margarine made for Passover, and purchased what I hope is a year's supply. I need to test olive oil and I probably can use coconut oil, too.
I've continued to have Normans, no gas or urgency for the past several days. I'm not testing any foods right now and am eating the same diet I have since September. I'm
that I have finally found my last intolerance. It's taken me nearly 4 years. Thank Heaven for the U.S.A. pharmaceutical company that invented Entocort. I would have been miserable for the past 4 years without it. Others here shouldn't be discouraged. The MRT test helped immensely, and I would recommend it to anyone who cannot achieve remission within several months. I've still had to do additional detective work, but the test helped eliminate foods I never suspected.I have over a month to go before I'll be home free, but I'm feeling pretty confident. I've always felt that if remission is elusive, it's because we haven't found all of our food intolerances. We need to keep eliminating, as unpleasant as it may be.
Gloria
You never know what you can do until you have to do it.
IMO, that defines the key to controlling this disease. That says it all.Gloria wrote:I've always felt that if remission is elusive, it's because we haven't found all of our food intolerances. We need to keep eliminating, as unpleasant as it may be.
It's truly impressive that you've reached this point in your treatment program. Congratulations!
I hope you have clear sailing from here on.
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.
Dear Gloria
So far so good! Congrats.
I had a slight flare in the last few days and put it back in control with immodium on one day and upping entocort back to 1 a day for the last three days. I will go back to one every other day (hopefully) if BM tomorrow is firm. I know I will have to do more work on my diet, but it is great to read your progress and to know I can go to USA or Oz (Gabes and Joe thanks for your update) for guidance on more food intolerences down the line.
Best wishes, ant
So far so good! Congrats.
I had a slight flare in the last few days and put it back in control with immodium on one day and upping entocort back to 1 a day for the last three days. I will go back to one every other day (hopefully) if BM tomorrow is firm. I know I will have to do more work on my diet, but it is great to read your progress and to know I can go to USA or Oz (Gabes and Joe thanks for your update) for guidance on more food intolerences down the line.
Best wishes, ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Gloria,
Just read this update and needless to say I'm thrilled for you. Thought I'd let you know that I've tested soy free EB several times, and cannot detect any reaction so far. I also tested high for peas, and have worried about the pea protein listed, but it doesn't seem to bother me. Perhaps now that I'm eliminating beef, it'll show up as my next problem food
.
that you make it through the 8 weeks. Can't imagine that anything will go wrong for you at this point in time, but I'll hold off on congratulating you till you're home safe .
Love,
Kari
Just read this update and needless to say I'm thrilled for you. Thought I'd let you know that I've tested soy free EB several times, and cannot detect any reaction so far. I also tested high for peas, and have worried about the pea protein listed, but it doesn't seem to bother me. Perhaps now that I'm eliminating beef, it'll show up as my next problem food
. that you make it through the 8 weeks. Can't imagine that anything will go wrong for you at this point in time, but I'll hold off on congratulating you till you're home safe .Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein