Flare-up
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Adele13348
- Little Blue Penguin
- Posts: 42
- Joined: Thu Oct 30, 2014 11:29 pm
- Location: Pensacola Florida
Flare-up
Hi! I am new to this forum and have found it most informative. I'm having a problem now that I'm hoping you can help me with. I'm experiencing a major flare-up - the worst I've had so far. I have quit eating entirely and am subsisting on herbal tea. I am now on Day 5. Yesterday, I felt better than I had in sometime, had zero bathroom trips and decided to eat some boiled rice and a small piece of grilled chicken breast. Yes, you guessed it. I'm back to square one today. I guess my question is, how can I get well. I have been on Entecort but it has not helped. I am trying coconut oil and it seems to be helping. I guess I'm not sure when to try solid food again. I feel like I'm undoing all the good I've done when I try and wind up having diarrhea again. My GI dr. has pretty much said there is nothing more she can do for me (nice, huh?) Any help/thoughts would be appreciated.
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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Hi Adele,
Welcome to our Internet family. Yes, most GI Specialists know very little about successfully treating MC, unfortunately. And to add insult to injury, the doctors of New York state and Maryland have successfully lobbied their respective legislatures to pass laws making it illegal for the residents of their states to order any tests themselves, just to make sure that patients won't be able to help themselves. Nice indeed.
Anne is certainly correct, we have to eat, not only to help heal our digestive system, but just to survive, in the long run. But some of us are sensitive to chicken, so I suggest that you try turkey (or duck, goose, quail, pheasant, etc). Maybe try sweet potatoes if rice seems to be a problem. Once you find a food or 2 that you can safely tolerate, then you can slowly develop some other menu choices around them.
The surest way to determine your main food sensitivities is by means of the stool tests offered by EnteroLab in Dallas, TX, but since you are a resident of NY, the only practical way to obtain a test kit is to have an out-of-state friend, relative, or member of this board order the test kit for you and then forward it to you or hand it to you in person if you happen to live reasonably close to each other (across the state line). And of course the sample would have to be returned to the lab the same way (by the individual who ordered it for you).
Make sure that you are avoiding all traces of gluten, dairy, and soy (including soy oil and soy lecithin). Even check the labels on toothpaste, mouthwash, cosmetics, shampoos, conditioners, skin moisturizers, etc. Don't lick envelopes or stamps, or chew gum (they often contain gluten).
The early stages of recovery are the toughest. It gets easier as we begin to make progress.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Yes, most GI Specialists know very little about successfully treating MC, unfortunately. And to add insult to injury, the doctors of New York state and Maryland have successfully lobbied their respective legislatures to pass laws making it illegal for the residents of their states to order any tests themselves, just to make sure that patients won't be able to help themselves. Nice indeed.
Anne is certainly correct, we have to eat, not only to help heal our digestive system, but just to survive, in the long run. But some of us are sensitive to chicken, so I suggest that you try turkey (or duck, goose, quail, pheasant, etc). Maybe try sweet potatoes if rice seems to be a problem. Once you find a food or 2 that you can safely tolerate, then you can slowly develop some other menu choices around them.
The surest way to determine your main food sensitivities is by means of the stool tests offered by EnteroLab in Dallas, TX, but since you are a resident of NY, the only practical way to obtain a test kit is to have an out-of-state friend, relative, or member of this board order the test kit for you and then forward it to you or hand it to you in person if you happen to live reasonably close to each other (across the state line). And of course the sample would have to be returned to the lab the same way (by the individual who ordered it for you).
Make sure that you are avoiding all traces of gluten, dairy, and soy (including soy oil and soy lecithin). Even check the labels on toothpaste, mouthwash, cosmetics, shampoos, conditioners, skin moisturizers, etc. Don't lick envelopes or stamps, or chew gum (they often contain gluten).
The early stages of recovery are the toughest. It gets easier as we begin to make progress.
Again, welcome aboard, and please feel free to ask anything.
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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Adele,
Lots of people here eat chicken and rice as their safe foods, but they are not safe foods for all of us. I cannot eat either one of them. I found that ground lamb was a safe food for me along with kale chips (chopped up kale leaves mixed with olive oil or coconut oil and cooked in the oven). Before I joined this forum 2.5 years ago I had decided to only have water. Everything else was problematic, but of course no one can live that way for any extended period of time, so I then added the ground lamb and then extended things out to include the kale chips. Life got better. I also did the Enterolab testing and that was very helpful. If you are interested in doing that I would be happy to help you. I live in Vermont and have helped 2 New Yorkers get their testing done, so let me know if you are interested. My diet now includes many more foods than just ground lamb and kale chips. There is a solution for you. It just will take time patience and discipline to find it.
Jean
Lots of people here eat chicken and rice as their safe foods, but they are not safe foods for all of us. I cannot eat either one of them. I found that ground lamb was a safe food for me along with kale chips (chopped up kale leaves mixed with olive oil or coconut oil and cooked in the oven). Before I joined this forum 2.5 years ago I had decided to only have water. Everything else was problematic, but of course no one can live that way for any extended period of time, so I then added the ground lamb and then extended things out to include the kale chips. Life got better. I also did the Enterolab testing and that was very helpful. If you are interested in doing that I would be happy to help you. I live in Vermont and have helped 2 New Yorkers get their testing done, so let me know if you are interested. My diet now includes many more foods than just ground lamb and kale chips. There is a solution for you. It just will take time patience and discipline to find it.
Jean
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Adele13348
- Little Blue Penguin
- Posts: 42
- Joined: Thu Oct 30, 2014 11:29 pm
- Location: Pensacola Florida
Thanks so much all of you. One of the best things about this forum is that it's given me hope. JFR, I may take you up on your offer. I asked my primary dr (a personal friend) if he would order the test for me so I'll wait and see what he says. I also asked him for a referral to a dietitian (sp?) to help me set up a rotation diet. Is that a good idea? I can't seem to figure out how I could do that on my own. Again, thanks.
Depending on how many food sensitivities we have, many of us eat such a restricted diet while we are recovering that rotation is not practical. Safe foods do not have to be rotated, and foods that trigger the production of antibodies (even at a weak level) will probably still cause inflammation. The biggest problem is that it's virtually impossible to find a dietitian who understands MC. Diets designed for other IBDs typically won't work for MC, and most dietitians have never heard of the disease. As a result, most members who have tried to work with a dietitian have been disappointed, and felt that they wasted their money. We can help you to custom tailor your diet.
If your doctor orders the tests it's much more likely that your insurance company may be willing to pay for the tests.
You're very welcome,
Tex
If your doctor orders the tests it's much more likely that your insurance company may be willing to pay for the tests.
You're very welcome,
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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Adele13348
- Little Blue Penguin
- Posts: 42
- Joined: Thu Oct 30, 2014 11:29 pm
- Location: Pensacola Florida
The penguins simply represent certain stages of numbers of messages posted. If I recall correctly, the first one shows up at about 50 posts.
Tex
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.
Jean, I make take you up on the Enterolab testing when the time comes. My daughter lives on the border of NY/CT, so that's another option.
It's been about 6 weeks since I found this forum. I am now beginning to understand that I can't rush healing. I, like many MC folks, had a LOT of resistance to the idea that healing would take time. I thought I could achieve remission quickly with diet, wean off the Entecort, and in a few months take the Enterolab testing to find out, for sure, what my food culprits are. Thank you all for being so patient with us newbies and being willing to tell us, over and over, that remission WILL TAKE TIME! So true.
Still eating just a few safe meats (thanks for the tip about ground lamb, Jean - works fine). Chicken seems to be a culprit for me but turkey is fine. And sweet potatoes, winter squash, and carrots. Coconut products seems fine.
I challenged with almond butter last week - yea! This week it's eggs. For 2 days, I had just one hard boiled egg yolk and today I had a whole egg. We shall see. Would make life easier, for sure.
Anyways, thanks again to you all. So patient, so kind, so willing to share....
It's been about 6 weeks since I found this forum. I am now beginning to understand that I can't rush healing. I, like many MC folks, had a LOT of resistance to the idea that healing would take time. I thought I could achieve remission quickly with diet, wean off the Entecort, and in a few months take the Enterolab testing to find out, for sure, what my food culprits are. Thank you all for being so patient with us newbies and being willing to tell us, over and over, that remission WILL TAKE TIME! So true.
Still eating just a few safe meats (thanks for the tip about ground lamb, Jean - works fine). Chicken seems to be a culprit for me but turkey is fine. And sweet potatoes, winter squash, and carrots. Coconut products seems fine.
I challenged with almond butter last week - yea! This week it's eggs. For 2 days, I had just one hard boiled egg yolk and today I had a whole egg. We shall see. Would make life easier, for sure.
Anyways, thanks again to you all. So patient, so kind, so willing to share....
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Adele13348
- Little Blue Penguin
- Posts: 42
- Joined: Thu Oct 30, 2014 11:29 pm
- Location: Pensacola Florida
Adele,
If you have not been taking Entocort longer than a month or so, it's usually better to do the tests sooner rather than later (so that you can get your healing underway). But if you've been taking Entocort longer than roughly 2 or 3 months, it may be beginning to suppress your immune system (antibody production) enough so that you might receive false negative results on some of your tests. It's difficult to say where the cut-off point might be, because it depends on our antibody levels to begin with. The longer we have been reacting, the higher our antibody levels will be, and the longer we can still get reliable EnteroLab test results even though we have been taking Entocort.
And by the same token, after we have been taking Entocort long enough to suppress our immune system, it takes a while (months) to get its effects out of our system, so that our antibody levels will have reached a sufficient level where they will trigger a reliable positive test result. The ability of Entocort to mask symptoms will usually fade away within a couple of weeks or less (so that symptoms may return), but it typically takes at least 6 or 8 weeks (or more) for our immune system to begin working normally again, after discontinuing a treatment regimen with Entocort, so that we can count on receiving reliable test results.
Tex
If you have not been taking Entocort longer than a month or so, it's usually better to do the tests sooner rather than later (so that you can get your healing underway). But if you've been taking Entocort longer than roughly 2 or 3 months, it may be beginning to suppress your immune system (antibody production) enough so that you might receive false negative results on some of your tests. It's difficult to say where the cut-off point might be, because it depends on our antibody levels to begin with. The longer we have been reacting, the higher our antibody levels will be, and the longer we can still get reliable EnteroLab test results even though we have been taking Entocort.
And by the same token, after we have been taking Entocort long enough to suppress our immune system, it takes a while (months) to get its effects out of our system, so that our antibody levels will have reached a sufficient level where they will trigger a reliable positive test result. The ability of Entocort to mask symptoms will usually fade away within a couple of weeks or less (so that symptoms may return), but it typically takes at least 6 or 8 weeks (or more) for our immune system to begin working normally again, after discontinuing a treatment regimen with Entocort, so that we can count on receiving reliable test results.
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 Adele:
So sorry to hear you are having such a rough time. As others have said already, you have to eat. Your best bet, until you can get some Enteolab testing done, is to try eating foods which you rarely or never consume on a routine basis. They are less likely to cause gut reactions. Of course consume only cooked foods for now.
Hope this helps!
Dr.Ann
So sorry to hear you are having such a rough time. As others have said already, you have to eat. Your best bet, until you can get some Enteolab testing done, is to try eating foods which you rarely or never consume on a routine basis. They are less likely to cause gut reactions. Of course consume only cooked foods for now.
Hope this helps!
Dr.Ann
Hi Adele:
Welcome to the forum. I hope you are able to find some safe foods for you soon, but please eat. Beef, chicken, turkey, sweet potatoes and a few vegetables like well cooked green beans and squash worked best for me when I was at my worst. Try to eat small amounts more frequently. How long have you been on Entocort?
Lisa
Welcome to the forum. I hope you are able to find some safe foods for you soon, but please eat. Beef, chicken, turkey, sweet potatoes and a few vegetables like well cooked green beans and squash worked best for me when I was at my worst. Try to eat small amounts more frequently. How long have you been on Entocort?
Lisa
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Adele13348
- Little Blue Penguin
- Posts: 42
- Joined: Thu Oct 30, 2014 11:29 pm
- Location: Pensacola Florida
I had a very successful day for a change. I have found I can tolerate baked potato and being able to eat that has made life worth living again! It's definitely a safe food. Am working on the ground lamb. Had a small reaction this afternoon but nothing compared to what it was. I almost have myself weened from the Entecort...2 more days, I think. Tex I was on the Entocort just about 3 months so I'll guess I'll wait awhile. My dr was too quick to get me into see the dietician. I have an appt for WEdnesday. I'll let you know how that turns out.
Thanks again for all your help.
Thanks again for all your help.