Hi everyone,
I am a newbie. I was diagnosed yesterday, May 10th with CC. Not what I wanted to hear. Guess I was a train wreck waiting to happen. I take Celebrex for over 20 years, levoxyl for well over 20 years for hypothyroidism, and Premarin for 34 years for HRT. Well, the train finally wrecked. I have been having the big D since mid Feb. finally had my colonoscopy Wednesday with results yesterday. Had to wait because I had fluid around my heart. Where did that come from! Anyway, the nurse told me all I need to watch is fat and to be caffeine free. After reading the post here, that just doesn't sound right. I need help. I am on 6 mg of Budesonide three times a day. I so like my sweets and a glass of wine now an then. Do I give up everything?
I am so glad I found this forum.
Jane
Diagnosed yesterday with cc
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jane and 
You have come to the right place! There are many seasoned individuals that will help you to restore your health!
First thing you should do is give up gluten, and dairy. Depending on how severe your symptoms are you may need to also stop consuming soy and eggs. Diet plays an important part in healing, and you can't heal if you are eating foods that won't allow it to happen.
As for the question about fat and caffeine....most (not all) people on this forum can drink coffee, if they could before their diagnosis. But, good fats are important for good health.
I was told after my colonscopy that I should go on a high fiber diet! That is totally opposite to what the truth is.
We have to stay away from fiber and sugars for while....that means fruits, too!
Tex's book (shown above on the upper right side of the site) will help you in this complicated journey.
Please ask any questions, as we have many knowledgeable people on this forum to help you get your health and life back!
You have come to the right place! There are many seasoned individuals that will help you to restore your health!
First thing you should do is give up gluten, and dairy. Depending on how severe your symptoms are you may need to also stop consuming soy and eggs. Diet plays an important part in healing, and you can't heal if you are eating foods that won't allow it to happen.
As for the question about fat and caffeine....most (not all) people on this forum can drink coffee, if they could before their diagnosis. But, good fats are important for good health.
I was told after my colonscopy that I should go on a high fiber diet! That is totally opposite to what the truth is.
We have to stay away from fiber and sugars for while....that means fruits, too!
Tex's book (shown above on the upper right side of the site) will help you in this complicated journey.
Please ask any questions, as we have many knowledgeable people on this forum to help you get your health and life back!
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
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Jskaggs
- Little Blue Penguin
- Posts: 43
- Joined: Fri May 10, 2013 3:53 pm
- Location: Signal Mountain, TN
Thank you Linda for your kind words.
I just feel overwhelmed. My D started a week after having surgery on my thumb after I broke it. The first episode was massive, I thought I had the flu. I hope it straightens up soon. We are going to Jamica early June and I want to be able to enjoy myself without spending the whole time in the bathroom. I think I have a lot to learn.
Jane
I just feel overwhelmed. My D started a week after having surgery on my thumb after I broke it. The first episode was massive, I thought I had the flu. I hope it straightens up soon. We are going to Jamica early June and I want to be able to enjoy myself without spending the whole time in the bathroom. I think I have a lot to learn.
Jane
Jane,
I thought I had food poisoning when my D started last August.... after days of going constantly, especially after I ate, I saw my doctor. He did every test known, and yet it persisted. Finally the colonoscopy show LC at the end of October of last year.
I didn't find this forum until February, and it has helped me so much!
I also wanted to let you know that stress can bring on flare-ups as your healing, and after you reach remission. So, we have to be careful to keep stress at a minimum, and have ways to cope, like yoga, when life gets tough.
I hope you get things under control, and have a wonderful trip! One day at a time!
:)
I thought I had food poisoning when my D started last August.... after days of going constantly, especially after I ate, I saw my doctor. He did every test known, and yet it persisted. Finally the colonoscopy show LC at the end of October of last year.
I didn't find this forum until February, and it has helped me so much!
I also wanted to let you know that stress can bring on flare-ups as your healing, and after you reach remission. So, we have to be careful to keep stress at a minimum, and have ways to cope, like yoga, when life gets tough.
I hope you get things under control, and have a wonderful trip! One day at a time!
:)
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
Hi Jane, welcome to our forum. It has been a lifesaver for me. I agree with Linda, advising to give up gluten and dairy to start. It made a huge difference for me. It IS life changing, because you have to change your whole diet and read every label. There is hidden gluten in so many packaged foods. And your whole "eating life" will change. I ate simple foods at the start, plain chicken, homemade chicken soup, soft vegetables, fish, bananas, avocados. Some are able to tolerate rice really well, so that might be an option. When you feel some better, you can add in things to see how you do. Sweets are not too good for us, even too much fruit can cause problems. But I now enjoy an occasional cup of coffee and glass of wine.
It took a couple weeks for the D to stop after stopping gluten and dairy. I did not take budesonide, wanted to try drug-free. But we all are different.
I went on a trip a couple of months after my diagnosis, after my D stopped and I started feeling better. It is somewhat difficult but not impossible to eat out. Ordering plain grilled chicken or fish and soft veggies worked for me. I also packed safe foods along with pepto and immodium just in case.
If you're like many of us, there is a "mourning period" at the start. But I can say that after three months, I have adjusted and actually enjoy my new diet. I feel great, have lots of energy, and most importantly, no D.
I hope you feel better soon!
Jean
It took a couple weeks for the D to stop after stopping gluten and dairy. I did not take budesonide, wanted to try drug-free. But we all are different.
I went on a trip a couple of months after my diagnosis, after my D stopped and I started feeling better. It is somewhat difficult but not impossible to eat out. Ordering plain grilled chicken or fish and soft veggies worked for me. I also packed safe foods along with pepto and immodium just in case.
If you're like many of us, there is a "mourning period" at the start. But I can say that after three months, I have adjusted and actually enjoy my new diet. I feel great, have lots of energy, and most importantly, no D.
I hope you feel better soon!
Jean
"The only way to keep your health is to eat what you don't want, drink what you don't like, and do what you'd rather not." Mark Twain
Hi Jane,
Welcome to our internet family. You've already received some great insight into dealing with this disease, so I won't add anything there, except to say that as Linda pointed out, most of us can continue to drink coffee (unless it caused us to have to run to the bathroom even before we developed this disease). It's the creamers that people put into their coffee that are usually the problem. Most such products, contain casein (the primary protein in milk), and/or soy, even though many of them claim to be dairy-free, and most of us here react to casein and soy.
Wine and distilled alcohol products are safe for most of us (in moderation, of course), but beware of certain wine coolers and other mixed beverages that are blended back with barley malt or other sources of gluten. There are gluten-free beers available (such as Redbridge or Omission) but virtually all of the mainstream brands of beer contain gluten.
Some of us have problems with sulfites, and this can be a problem with wine. For those individuals who have problems with sulfites, sometimes they can find a low-sulfite wine that works for them. If sulfites didn't bother you prior to the development of CC though, then they probably won't be a problem now.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. You've already received some great insight into dealing with this disease, so I won't add anything there, except to say that as Linda pointed out, most of us can continue to drink coffee (unless it caused us to have to run to the bathroom even before we developed this disease). It's the creamers that people put into their coffee that are usually the problem. Most such products, contain casein (the primary protein in milk), and/or soy, even though many of them claim to be dairy-free, and most of us here react to casein and soy.
Wine and distilled alcohol products are safe for most of us (in moderation, of course), but beware of certain wine coolers and other mixed beverages that are blended back with barley malt or other sources of gluten. There are gluten-free beers available (such as Redbridge or Omission) but virtually all of the mainstream brands of beer contain gluten.
Some of us have problems with sulfites, and this can be a problem with wine. For those individuals who have problems with sulfites, sometimes they can find a low-sulfite wine that works for them. If sulfites didn't bother you prior to the development of CC though, then they probably won't be a problem now.
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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Jskaggs
- Little Blue Penguin
- Posts: 43
- Joined: Fri May 10, 2013 3:53 pm
- Location: Signal Mountain, TN
Oh my gosh, how can I thank you all for being so kind. Yes, I think there will certainly be some major mourning! As for stress-- yep that's me. I lost my brother and sister two years ago within six months of each other. Now, I am responsible for my Mother who has congestive heart failure, end stage renal failure, lukemia, and broke both of her feet! But i am doing my best to stay sane, with a loving husband and fantastic children and grandchildren, I know everything will be okay.
Enough of my pity party. Thanks again, all of you.
Jane
Enough of my pity party. Thanks again, all of you.
Jane
Wow, Jane, you have has a rough stretch. Many of us have found that stress plays a huge role in the onset and management of MC, myself included. Tex's book will elaborate on the stress connection, so I recommend that you buy it. Then, find ways to manage the stress, such as yoga, meditation, walking, or other exercise. On top of managing diet, that might seem daunting, but if you just take a step at a time, things will improve. This disease forces us to learn patience, and, believe me, that was not my strong suit before LC.
Two years ago, when I was sickest, I was very dubious that I would get my life back. Now, I feel mostly very normal and in charge of things. I'm very grateful to have had the help of folks here.
Two years ago, when I was sickest, I was very dubious that I would get my life back. Now, I feel mostly very normal and in charge of things. I'm very grateful to have had the help of folks here.
Suze
Hello Jane from another Jane!
I have very little to add except to tell you that I started another message yesterday that somehow got aborted. What I wanted to say is that so many of us are overwhelmed with the amount of information we have to learn to get control of this disease that it feels like an insurmountable load at times.
I am here to say that if you stick with this group, you will get your life back as we support each other through the sharing of our own experiences. Together we all get better.
Sounds to me that loss upon loss has been heaped on you and in spite of the rest of life coming in upon you, your body is telling you that you MUST take time to grieve because it (your body) can't take any more without a pause. Be gentle with yourself and do not feel guilty for taking time out to solve your puzzle. I have a 92 year-old mother who is a handful and I have managed to get paid help for her and/or friends willing to take some of my daughter-duties on. Today, we are taking her out to dinner--I am not cooking--and I do not know what there will be for me to eat, but it really doesn't matter if I don't eat anything--she has my undivided for a few hours today.
Happy Mother's Day!
Jane
I have very little to add except to tell you that I started another message yesterday that somehow got aborted. What I wanted to say is that so many of us are overwhelmed with the amount of information we have to learn to get control of this disease that it feels like an insurmountable load at times.
I am here to say that if you stick with this group, you will get your life back as we support each other through the sharing of our own experiences. Together we all get better.
Sounds to me that loss upon loss has been heaped on you and in spite of the rest of life coming in upon you, your body is telling you that you MUST take time to grieve because it (your body) can't take any more without a pause. Be gentle with yourself and do not feel guilty for taking time out to solve your puzzle. I have a 92 year-old mother who is a handful and I have managed to get paid help for her and/or friends willing to take some of my daughter-duties on. Today, we are taking her out to dinner--I am not cooking--and I do not know what there will be for me to eat, but it really doesn't matter if I don't eat anything--she has my undivided for a few hours today.
Happy Mother's Day!
Jane
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Welcome Jane.
We all throw ourselves pity parties now and again. what better place to do it!
I also have CC and was dx one and 1/2 years ago. I decided to go on budesonide ( 9mg to start) AND CHANGE THE DIET drastically at the same time. The drug helps with the symptoms, but masks the food reactions. if we continue to eat inflammatory foods, then we will relapse when we start tapering off the drug.
The basic info is this: The four biggest inflammatory foods are gluten, dairy, soy, and eggs. Some of us are only intolerant to one, but most of us have more then one. I took out gluten and dairy right away. then I found that when I was down to 3 mg. a day, I was reacting to soy also.
in addition to those foods, there are "irritants" that don't actually bring on an inflammatory response, but are so rough on an already inflamed intestine, that they can prevent healing. Those foods would be RAW fruits, salad, and veggies. Acid foods ( tomato, citrus, maybe coffee) and fiber ( beans, legumes). Later, when you have done some healing, you can test these foods back in.
The thing is that we are all different. I can't drink coffee or tea, but many can. I had to give up wine, but can drink hard alcohol. I eat rice and corn products, others can't. Some can't add beans back in, but i could. Some can get fruit back in, but i still have issues. There is no one size fits all here. If you can afford it, taking the food intolerance testing at Enterolab helps tremendously. I had to do it the elimination way though.
If all of this doesn't get you back to good health, then you might have to look at some of the other drugs you are taking. Sometimes just stopping a drug brings on remission.
I hope you ar able to enjoy your vacation. bring immodium and take it every day if you need to. Try to stick to meat and rice as much as you can . The jerk chicken is amazing! :)
good luck and ask anything and as often as you like
leah
We all throw ourselves pity parties now and again. what better place to do it!
I also have CC and was dx one and 1/2 years ago. I decided to go on budesonide ( 9mg to start) AND CHANGE THE DIET drastically at the same time. The drug helps with the symptoms, but masks the food reactions. if we continue to eat inflammatory foods, then we will relapse when we start tapering off the drug.
The basic info is this: The four biggest inflammatory foods are gluten, dairy, soy, and eggs. Some of us are only intolerant to one, but most of us have more then one. I took out gluten and dairy right away. then I found that when I was down to 3 mg. a day, I was reacting to soy also.
in addition to those foods, there are "irritants" that don't actually bring on an inflammatory response, but are so rough on an already inflamed intestine, that they can prevent healing. Those foods would be RAW fruits, salad, and veggies. Acid foods ( tomato, citrus, maybe coffee) and fiber ( beans, legumes). Later, when you have done some healing, you can test these foods back in.
The thing is that we are all different. I can't drink coffee or tea, but many can. I had to give up wine, but can drink hard alcohol. I eat rice and corn products, others can't. Some can't add beans back in, but i could. Some can get fruit back in, but i still have issues. There is no one size fits all here. If you can afford it, taking the food intolerance testing at Enterolab helps tremendously. I had to do it the elimination way though.
If all of this doesn't get you back to good health, then you might have to look at some of the other drugs you are taking. Sometimes just stopping a drug brings on remission.
I hope you ar able to enjoy your vacation. bring immodium and take it every day if you need to. Try to stick to meat and rice as much as you can . The jerk chicken is amazing! :)
good luck and ask anything and as often as you like
leah