Hi everyone,
I am a 40 year old woman, and was diagnosed with Lymphocitic Colitis two weeks ago. I had bad diarrhea since December, but luckily not really any pain. After numerous tests (blood and stool - ugh!), and two antibiotic rounds, my doc finally gave me a colonoscopy.
He prescribed Uceris, and told me I have to take it EVERY day for the rest of my life! I'm not very happy about taking a steroid daily. I have decided to try a gluten free diet, and take Uceris every other day. I've been a vegetarian for over 20 years, and thought it would be tough but I'm actually finding a lot of great foods to eat.
Does anyone have experience with diet working without the drugs? The Uceris cleared my symptoms after just 3-4 days, but when I don't take it for over a day they return. It's only been two weeks, but I would really love to think I don't have to take Uceris for life!
Thanks,
CD
Newly diagnosed - on Uceris
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Christa,
Welcome to the board. I'm kind of surprised that your GI doc would tell you to use Uceris (budesonide) for the rest of your life, since most doctors are rather apprehensive about prescribing budesonide for longer than a few months or so. The side effect risks are not nearly as bad as they are with most of the other types of corticosteroids, but it will still carry certain risks if taken on a long-term basis. Some people are able to lower the dosage significantly after they are in remission for a while, and this limits the risk of problems due to side effects. Without any diet changes, however, it's usually not possible to lower the dosage by more than about a third, and this dosage level will still significant carry side effect risks with long-term usage.
Many of us here are in remission by diet changes alone. It takes time for the diet changes to promote enough healing for the symptoms to stop, so some members use budesonide early on, to help control the diarrhea while the diet is healing the gut.
Diet changes are the only way to stop the development of the inflammation that causes LC. If you can stop the inflammation from being produced, then you will not need the corticosteroid. Please don't expect your GI doc to understand this, though, because most doctors still insist that diet has nothing to do with this disease. Any long-term member of this board can tell you how ridiculous that claim is. That's like claiming that breathing polluted air has nothing to do with asthma, lung disease or lung cancer. The trick is to figure out which foods are causing the inflammation, and cut them completely out of our diet, even trace amounts. For most of us the main problems are gluten and dairy, and many of us also have to avoid soy and eggs. Some have other food sensitivities.
We have many members who were vegetarians for longer than you have been, but unfortunately when their MC developed, they became sensitive to soy, so they were forced to add meat to their diet in order to get enough safe protein in their diet. A lot of protein is required in order to help heal the damage that MC causes in our intestines. If it turns out that you are fortunate enough that you are not sensitive to soy, then you should be able to continue to follow a vegetarian lifestyle and still control your LC by diet changes alone.
One of the problems that will make this more difficult, however, is the fact that until our gut heals, it is hypersensitive, and fiber causes major inflammation because of it's abrasiveness on the delicate walls of the intestines. IOW, we have to minimize fiber in our diet, and any vegetables must be peeled and overcooked, to minimize fiber and make them more easily digestible. Except for bananas, most of us also have to avoid virtually all fruits until after we are in remission, because of the fiber, the sugar alcohols, and relatively high fructose content. Some members can tolerate small amounts of certain well-cooked, peeled fruits while they are still healing, but in general, not eating any fruits at all (except for bananas) helps to shorten the time it takes to achieve remission, for most of us.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. I'm kind of surprised that your GI doc would tell you to use Uceris (budesonide) for the rest of your life, since most doctors are rather apprehensive about prescribing budesonide for longer than a few months or so. The side effect risks are not nearly as bad as they are with most of the other types of corticosteroids, but it will still carry certain risks if taken on a long-term basis. Some people are able to lower the dosage significantly after they are in remission for a while, and this limits the risk of problems due to side effects. Without any diet changes, however, it's usually not possible to lower the dosage by more than about a third, and this dosage level will still significant carry side effect risks with long-term usage.
Many of us here are in remission by diet changes alone. It takes time for the diet changes to promote enough healing for the symptoms to stop, so some members use budesonide early on, to help control the diarrhea while the diet is healing the gut.
Diet changes are the only way to stop the development of the inflammation that causes LC. If you can stop the inflammation from being produced, then you will not need the corticosteroid. Please don't expect your GI doc to understand this, though, because most doctors still insist that diet has nothing to do with this disease. Any long-term member of this board can tell you how ridiculous that claim is. That's like claiming that breathing polluted air has nothing to do with asthma, lung disease or lung cancer. The trick is to figure out which foods are causing the inflammation, and cut them completely out of our diet, even trace amounts. For most of us the main problems are gluten and dairy, and many of us also have to avoid soy and eggs. Some have other food sensitivities.
We have many members who were vegetarians for longer than you have been, but unfortunately when their MC developed, they became sensitive to soy, so they were forced to add meat to their diet in order to get enough safe protein in their diet. A lot of protein is required in order to help heal the damage that MC causes in our intestines. If it turns out that you are fortunate enough that you are not sensitive to soy, then you should be able to continue to follow a vegetarian lifestyle and still control your LC by diet changes alone.
One of the problems that will make this more difficult, however, is the fact that until our gut heals, it is hypersensitive, and fiber causes major inflammation because of it's abrasiveness on the delicate walls of the intestines. IOW, we have to minimize fiber in our diet, and any vegetables must be peeled and overcooked, to minimize fiber and make them more easily digestible. Except for bananas, most of us also have to avoid virtually all fruits until after we are in remission, because of the fiber, the sugar alcohols, and relatively high fructose content. Some members can tolerate small amounts of certain well-cooked, peeled fruits while they are still healing, but in general, not eating any fruits at all (except for bananas) helps to shorten the time it takes to achieve remission, for most of us.
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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itschrista
- Posts: 4
- Joined: Thu Apr 11, 2013 11:33 am
Tex,
Thank you so much for the reply and the warm welcome! I already avoid dairy, so that one is easy. I did think it was strange that my doc said I had to take the meds forever, but I also know that it's a new drug and maybe he was just trying to get me into remission before we revisit. He did say I didn't have to change my diet because I don't have celiac, but I have done enough reading to know that I may have sensitivities to foods that don't translate I to cd.
I will cross my fingers on the soy and focus on getting protein from lentils, nuts, and beans (though of course the fiber is an issue!). Then I will add soy back in at some point. If I end up having to eat meat, I guess you have to do what you have to do to be healthy.
It's nice to know there are others around who have this same disease and to have the knowledge and support!
Christa
Thank you so much for the reply and the warm welcome! I already avoid dairy, so that one is easy. I did think it was strange that my doc said I had to take the meds forever, but I also know that it's a new drug and maybe he was just trying to get me into remission before we revisit. He did say I didn't have to change my diet because I don't have celiac, but I have done enough reading to know that I may have sensitivities to foods that don't translate I to cd.
I will cross my fingers on the soy and focus on getting protein from lentils, nuts, and beans (though of course the fiber is an issue!). Then I will add soy back in at some point. If I end up having to eat meat, I guess you have to do what you have to do to be healthy.
It's nice to know there are others around who have this same disease and to have the knowledge and support!
Christa
Crista,
Nut butters are much easier to digest than the nuts themselves, while we're still healing. Many members find that they react to nuts, but they can handle most of the nut butters just fine. Some members even make their own nut butter in a food processor. Nut butters make great snacks on rice cakes or Rice Snaps or other GF crackers.
You're correct, the blood tests used to screen for celiac disease will only show a positive result if the patient has fully-developed celiac disease. Many celiacs suffer for years before their intestinal damage finally reaches the point where the test results will turn positive. And for the type of gluten sensitivity that most of us here have (non-celiac gluten sensitivity), those tests will never show a positive result, because we don't have a celiac gene.
Good luck with your diet, and keep us posted on your progress.
Tex
Nut butters are much easier to digest than the nuts themselves, while we're still healing. Many members find that they react to nuts, but they can handle most of the nut butters just fine. Some members even make their own nut butter in a food processor. Nut butters make great snacks on rice cakes or Rice Snaps or other GF crackers.
You're correct, the blood tests used to screen for celiac disease will only show a positive result if the patient has fully-developed celiac disease. Many celiacs suffer for years before their intestinal damage finally reaches the point where the test results will turn positive. And for the type of gluten sensitivity that most of us here have (non-celiac gluten sensitivity), those tests will never show a positive result, because we don't have a celiac gene.
Good luck with your diet, and keep us posted on your progress.
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.
Welcome Crista.
As you probably have already guessed, tex is our expert and has written a book ( that is pictured in the upper right hand corner of this page). You might want to buy a copy. it explains so much and is just a great resource.
I was put on Budesonide also when I was dx ( actually I asked for it after reading this forum). it worked wonders for me as it has for you, but one of the things it also does is "hide" your food sensitivities to a certain degree. I didn't realize I was reacting to soy until I had weaned down to one pill ( 3 mg) a day. Because of this, you may continue to eat things that are slowing down your healing and not even know it. I did 9mg. for a month. 6mg for two months. and 3 mg. for two more months. The last month was weaning slowly off.
As Tex said, the fiber is a real issue when trying to heal. I took out all raw fruits and veggies right away along with gluten and dairy ( salad too). Beans and legumes were out also. The fiber to our inflamed intestines is like rubbing sand paper on an open wound. Believe me, I know this all seems counterintuitive. I am a personal trainer/nutritionist and was eating tons of produce and beans when this all started. What helped me with all this change is to remember that although I will probably have to be GF and DF all my life, the other "irritants" can be tested back in after some healing has taken place. I was off the drug completely in six months and have been able to add raw veggies, beans and legumes back in. Fruits are still hard on me, but I can do small amounts.
I do have to say though that meat and eggs were/are very important to my diet, so I just don't have a good answer for the vegetarian in you except that hopefully you are not sensitive to soy and it's relatives ( legumes) :)
Good luck. Ask anything and keep us posted
Leah
As you probably have already guessed, tex is our expert and has written a book ( that is pictured in the upper right hand corner of this page). You might want to buy a copy. it explains so much and is just a great resource.
I was put on Budesonide also when I was dx ( actually I asked for it after reading this forum). it worked wonders for me as it has for you, but one of the things it also does is "hide" your food sensitivities to a certain degree. I didn't realize I was reacting to soy until I had weaned down to one pill ( 3 mg) a day. Because of this, you may continue to eat things that are slowing down your healing and not even know it. I did 9mg. for a month. 6mg for two months. and 3 mg. for two more months. The last month was weaning slowly off.
As Tex said, the fiber is a real issue when trying to heal. I took out all raw fruits and veggies right away along with gluten and dairy ( salad too). Beans and legumes were out also. The fiber to our inflamed intestines is like rubbing sand paper on an open wound. Believe me, I know this all seems counterintuitive. I am a personal trainer/nutritionist and was eating tons of produce and beans when this all started. What helped me with all this change is to remember that although I will probably have to be GF and DF all my life, the other "irritants" can be tested back in after some healing has taken place. I was off the drug completely in six months and have been able to add raw veggies, beans and legumes back in. Fruits are still hard on me, but I can do small amounts.
I do have to say though that meat and eggs were/are very important to my diet, so I just don't have a good answer for the vegetarian in you except that hopefully you are not sensitive to soy and it's relatives ( legumes) :)
Good luck. Ask anything and keep us posted
Leah
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itschrista
- Posts: 4
- Joined: Thu Apr 11, 2013 11:33 am
If coffee caused you to have to make a quick trip to the bathroom before your MC symptoms began (as is the case for many people in the general population), then it will probably continue to do so now. On the other hand, based on the accumulated experiences of the members of this board, if coffee didn't affect your bathroom routine previously, then it probably won't be a problem for you now.
The jury is still out on stevia, but it appears that it is probably generally safe for us. Most of us cannot tolerate any of the artificial sweeteners, and many of us have to limit our intake of natural sugars. Since stevia is a natural sweetener, there's a good chance that it shouldn't cause any problems for most of us (in limited amounts, at least — surely the small amount used in coffee shouldn't be a problem for most of us).
Enjoy.
Tex
The jury is still out on stevia, but it appears that it is probably generally safe for us. Most of us cannot tolerate any of the artificial sweeteners, and many of us have to limit our intake of natural sugars. Since stevia is a natural sweetener, there's a good chance that it shouldn't cause any problems for most of us (in limited amounts, at least — surely the small amount used in coffee shouldn't be a problem for most of us).
Enjoy.
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.
-
itschrista
- Posts: 4
- Joined: Thu Apr 11, 2013 11:33 am
