HI Deanna. To answer your question about why I limit my diet so much is that even with the Entocort, you can still react. The reaction might not be as dramatic, but I can still get the cramping and bloat. I am actually in a flare right now after eating in a restaurant two days ago. D is back. I will up the dose to 9mg. again until it's under control and then taper back down to 6mg. By taking out "aggravate-ers", I feel I can be more successful getting off the drug because I am not eating things to irritate the intestine. I might be slightly different because I am IgA deficient - one of the symptoms is GI problems. I have had digestive issues for 15 years before the CC actually hit me with the D this past December ( dx in Feb.). It sounds like you are just so use to having D, that you have a higher tolerance to having it. I just couldn't do my job if it continued the way it was. Like I said, we all have to make our own decisions that best suits us.
Good luck
Leah
Good news - bad news
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Deanna,
I have LC, so his explanation about those with CC having more difficulty tapering off Entocort doesn't lend any insight to my situation. I think the best explanation for me is that I have double DQ1 genes, which predispose to multiple sensitivities and I probably have mast cell issues. Both of those combined have left me with a pretty restricted diet.
I'm not able to eliminate any more foods in order to achieve remission due to my low weight and limited calories. I've done that many times hoping that I've finally found all of my intolerances, only to deteriorate and have to eliminate more. I'm resigned to the idea that I'll be on Entocort/Imodium the rest of my life with the same diet I'm eating now. It could be worse - I could be eating the pureed foods that the residents in nursing homes have to eat and wearing a diaper. My life looks pretty good compared to theirs.
I hope you can get your symptoms to subside soon so that you can get your life back. It's a living nightmare when MC takes over your life. My best to you.
Gloria
I have LC, so his explanation about those with CC having more difficulty tapering off Entocort doesn't lend any insight to my situation. I think the best explanation for me is that I have double DQ1 genes, which predispose to multiple sensitivities and I probably have mast cell issues. Both of those combined have left me with a pretty restricted diet.
I'm not able to eliminate any more foods in order to achieve remission due to my low weight and limited calories. I've done that many times hoping that I've finally found all of my intolerances, only to deteriorate and have to eliminate more. I'm resigned to the idea that I'll be on Entocort/Imodium the rest of my life with the same diet I'm eating now. It could be worse - I could be eating the pureed foods that the residents in nursing homes have to eat and wearing a diaper. My life looks pretty good compared to theirs.
If you're avoiding Entocort so that you don't end up where I am, your concern has some validity. However, there are others on the board who have successfully used Entocort and have been able to get off of it. The problem is that we don't know which route our MC will take. Entocort is likely not the cause of my being unable to achieve remission. My genetic makeup and taking a double dose of antibiotics (which I believe brought on my MC) are the more likely explanations. Ginny's testing revealed that she has little or no beneficial bacteria. My beneficial bacteria amount has never been tested, but it wouldn't surprise me if I have a low amount of it also. I can think of two others on the board who have also struggled to achieve remission, but neither of them took Entocort for more than a few weeks. I don't think any of us have an explanation for why remission has been so elusive. We've used the same strategies that everyone else has and then some, but we're still struggling.You're right that feedback with Imodium is a lot faster than it would be with Entocort. One reason I'm avoiding it so far is that I'm trying to avoid ending up where you (and others on this forum) are.
I hope you can get your symptoms to subside soon so that you can get your life back. It's a living nightmare when MC takes over your life. My best to you.
Gloria
You never know what you can do until you have to do it.
Deanna, a lot has been said and very good advice. It takes a lot of patience to deal with this disease and fortunately, there is a wealth of information on this website. I myself would opt for the Entocort. I never had to take more than two and mostly one a day for a year and half and then for some unknown reason, I had a drastic decline. FWIW, I weigh 98-100#'s and am 5'5" and have to take 3 Entocort a day plus 2 Imodium to have control with a very limited diet. But remember, Gloria and I and some others are at the extreme end of finding permanent relief. Most people here resolved their issues with diet changes and the help of some meds, and then move on with their life with a modified diet.
You asked a question about lomotil. I found it made me woozy most of the time, but it is suppose to be stronger than Imodium. I think it helped my stress more than anything.
Please know that we all do UNDERSTAND, but when you are new at this, you can become so self absorbed with the plight of this disease. Hang in there, you will get better.
Love, Ginny
You asked a question about lomotil. I found it made me woozy most of the time, but it is suppose to be stronger than Imodium. I think it helped my stress more than anything.
Please know that we all do UNDERSTAND, but when you are new at this, you can become so self absorbed with the plight of this disease. Hang in there, you will get better.
Love, Ginny
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
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Deanna in CO
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- Location: Colorado
Ginny and Gloria,
Thank you so much for your sound counsel. Ginny, you are so right about how self-absorbed we can become. I am fighting that tendency with all my might, but you know how difficult it can be. Even just trying to make the decision to take Entocort or not seems overwhelming, and I second-guess just about everything I put in my mouth - ugh!
Anyway, I appreciate your help. Dh and I are considering now how we can manage the endoscopy and MRT that Dr. Lewey says I need.
Thanks again for the help,
Deanna
Thank you so much for your sound counsel. Ginny, you are so right about how self-absorbed we can become. I am fighting that tendency with all my might, but you know how difficult it can be. Even just trying to make the decision to take Entocort or not seems overwhelming, and I second-guess just about everything I put in my mouth - ugh!
Anyway, I appreciate your help. Dh and I are considering now how we can manage the endoscopy and MRT that Dr. Lewey says I need.
Thanks again for the help,
Deanna
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Gabes-Apg
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- Location: Hunter Valley NSW Australia
Deanna
The second guessing and over thinking comes about because we know there is no one guaranteed way to solve the MC issue.... that is frustrating and totally unfair! we have a right to be a bit cheesed off some days.
i wrote something over 12 months ago about the matrix of MC in our lives, we are all different, our triggers, our symptoms, what works, what doesnt, the influence of other medical conditions and symptoms.
we have to make decisions that work for us as individual that suit our budgets, our family duties, our work duties, our lifestyle, you have to decide the best solution that will work for you...
there is not right way or wrong way, there is your way.
trust yourself and hang in there for a few lessons along the way, what is your way will reveal itself and it will get better
The second guessing and over thinking comes about because we know there is no one guaranteed way to solve the MC issue.... that is frustrating and totally unfair! we have a right to be a bit cheesed off some days.
i wrote something over 12 months ago about the matrix of MC in our lives, we are all different, our triggers, our symptoms, what works, what doesnt, the influence of other medical conditions and symptoms.
we have to make decisions that work for us as individual that suit our budgets, our family duties, our work duties, our lifestyle, you have to decide the best solution that will work for you...
there is not right way or wrong way, there is your way.
trust yourself and hang in there for a few lessons along the way, what is your way will reveal itself and it will get better
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Deanna,
You've already received so much good advice that I don't have much to add.... other than to say that when I read your post my thought was that you are making progress. You are starting to have good days in between the bad days. Now look for the bad days to get further apart-- that's what progress is. This condition does not lend itself to improving quickly. It's a gradual 'chipping away'. Often 2 steps forward and one back sometimes.
I also took Entocort starting in Sept. 2011 and titrating off in January 2012. I really didn't need to be on it that long but I was resistant to getting off. It made all the difference in me getting back to my life and the daily demands. I detested how self-absorbed I was. Now I'm well enough and have enough energy to be really ticked off about some things at work.
The only thing Entocort hid was a sensitivity to eggs. I could tolerate scrambled eggs when on Entocort, but I can't now. That was it. It didn't mask anything else.
So I can see that you are making gains, but you are not yet where you want to be. Those are two different things. Be encouraged.
Carol
You've already received so much good advice that I don't have much to add.... other than to say that when I read your post my thought was that you are making progress. You are starting to have good days in between the bad days. Now look for the bad days to get further apart-- that's what progress is. This condition does not lend itself to improving quickly. It's a gradual 'chipping away'. Often 2 steps forward and one back sometimes.
I also took Entocort starting in Sept. 2011 and titrating off in January 2012. I really didn't need to be on it that long but I was resistant to getting off. It made all the difference in me getting back to my life and the daily demands. I detested how self-absorbed I was. Now I'm well enough and have enough energy to be really ticked off about some things at work.
The only thing Entocort hid was a sensitivity to eggs. I could tolerate scrambled eggs when on Entocort, but I can't now. That was it. It didn't mask anything else.
So I can see that you are making gains, but you are not yet where you want to be. Those are two different things. Be encouraged.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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Deanna in CO
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- Location: Colorado
Gabes and Carol - and everybody,
THANK YOU so very much for all the support! I can't tell you how much it means to me. I don't feel as alone as some on this forum, because my best friend is a nutritionist and has been a tremendous help - but even she doesn't know MC and while she is supportive, she's often stumped as to what to do next.
Your counsel and encouragement is invaluable. Carol, thank you for pointing out the progress - baby steps can be so hard to see. You are right that there is improvement, even if it is painfully slow, and even if during the bad days we get afraid the good ones won't come back. Gabes, I love your ponderings - I will look up that old message. It helps to get outside the nitty-gritty everyday management of the disease and see the bigger picture sometimes.
Thank you all again,
Deanna
THANK YOU so very much for all the support! I can't tell you how much it means to me. I don't feel as alone as some on this forum, because my best friend is a nutritionist and has been a tremendous help - but even she doesn't know MC and while she is supportive, she's often stumped as to what to do next.
Your counsel and encouragement is invaluable. Carol, thank you for pointing out the progress - baby steps can be so hard to see. You are right that there is improvement, even if it is painfully slow, and even if during the bad days we get afraid the good ones won't come back. Gabes, I love your ponderings - I will look up that old message. It helps to get outside the nitty-gritty everyday management of the disease and see the bigger picture sometimes.
Thank you all again,
Deanna
Deanna,
To answer your question about the coconut milk - I've had some of the soup I made with it 2 days in a row with no discernable ill effects, so for me it's a "go".
Your point about having developed a "tolerance" for D. resonates very strongly with me, since I also had relentless and worsening D. for 10 years before finding out about the diet angle. I think because of that, I've been able to duke it out with diet alone, saying no thanks to steroids. I also seem to react very strongly to any meds/supplements, so I'm not even taking vitamins, and am a bit fearful of anything that comes in pill form.
One reason "remission" seems somewhat elusive for me is the cumulative damage gluten and dairy did to my system over my lifetime. I have double celiac genes, so there is no doubt in my mind that "repairing" the damage done will take time. To tell you the truth, I'm absolutely flabbergasted and delighted that I can occasionally have a close to normal BM. It took me between 5 and 6 months on the diet to have that "delightful" experience, and I will never forget the sense of achievement I experienced (and still do every time it happens :)). 10 years is a long time to go without a single "Norman" visit.
Anyhow, just wanted to let you know that I'm gradually feeling stronger and healthier and certain that healing is taking place. It feels like I'm fighting a winning battle!!! No matter which way you choose to go, and which tools you pick to help you along, I'm sure the same will happen for you.
Love,
Kari
To answer your question about the coconut milk - I've had some of the soup I made with it 2 days in a row with no discernable ill effects, so for me it's a "go".
Your point about having developed a "tolerance" for D. resonates very strongly with me, since I also had relentless and worsening D. for 10 years before finding out about the diet angle. I think because of that, I've been able to duke it out with diet alone, saying no thanks to steroids. I also seem to react very strongly to any meds/supplements, so I'm not even taking vitamins, and am a bit fearful of anything that comes in pill form.
One reason "remission" seems somewhat elusive for me is the cumulative damage gluten and dairy did to my system over my lifetime. I have double celiac genes, so there is no doubt in my mind that "repairing" the damage done will take time. To tell you the truth, I'm absolutely flabbergasted and delighted that I can occasionally have a close to normal BM. It took me between 5 and 6 months on the diet to have that "delightful" experience, and I will never forget the sense of achievement I experienced (and still do every time it happens :)). 10 years is a long time to go without a single "Norman" visit.
Anyhow, just wanted to let you know that I'm gradually feeling stronger and healthier and certain that healing is taking place. It feels like I'm fighting a winning battle!!! No matter which way you choose to go, and which tools you pick to help you along, I'm sure the same will happen for you.
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
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Deanna in CO
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- Location: Colorado
Oh, Kari, I so appreciate your encouragement! It so nice to know I'm not the only one in this position! I haven't come up with the finances yet for the genetic testing, but Dr. Lewey strongly recommended it since my previous GI did not test my IgA when he did my blood test for celiac, and did not do an upper endoscopy with a duodenal biopsy. (Dr. Lewey also recommended I have that done, though I'm not sure what they'll find since Kaiser is going to require it be done by one of their docs, who probably won't even recognize healing celiac disease if it's staring them in the face.)
I agree, 10 years is a long time to go. I am so anxious to have that happen to me! Five or 6 months on the diet? Well, I'm getting there, then. :-). Good days (like today) I am able to hope and even believe I might get there eventually (bad days I don't believe I'm ever going to get better at all).
Thank you!
Deanna
I agree, 10 years is a long time to go. I am so anxious to have that happen to me! Five or 6 months on the diet? Well, I'm getting there, then. :-). Good days (like today) I am able to hope and even believe I might get there eventually (bad days I don't believe I'm ever going to get better at all).
Thank you!
Deanna