Hello all. I am so thankful to find this group. I was diagnosed with collagenous colitis in February 2020. I have been on budesonide (9 mg per day) since mid February. My GI doctor of course told me to eat anything I want except dairy. When I found you all, I eliminated gluten, eggs, sugar, & most veggies. Eating turkey, chicken, canned green beans & beets, sweet potatoes & some white potatoes, home made applesauce.
Still having watery D most days, 3-6 times a day. My question is, how long will it take for the D to stop? I have had it daily since January 2. Budesonide has cut down the frequency significantly, but still there. My GI prescribed Colestid to "firm things up". Not helping much. Any info/encouragement will be so appreciated.
Struggling newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jeannie,
Welcome to the group. Your diet looks good (unless you're sensitive to chicken), so you should be getting better soon. A few of us take much longer to recover than others (6 months to a year), but most reach remission sooner than that. The budesonide doesn't appear to be working. Are you taking any other medications (that might be causing the continued diarrhea)? NSAIDs, PPIs and antidepressants are especially bad about triggering MC.
I doubt that the Colestid is helping any. If you want to take a bile acd sequestrant, the only one that seems to work for us is the Sandoz brand of cholestyramine. It works in cases where bile acid malabsorption (BAM) is the cause of the diarrhea. But you would have to experiment with the dose to find one that works best for you. It would probably be better to try that later, when you're not taking budesonide.
Many of us use Imodium when we're reacting if we need a little extra "insurance" for a few hours so that we can safely run errands. It's safe to take up to 8 tablets per day, but don't take any more than you need for good control, because it can cause constipation if you overdose.
You may just need more time. Some of us require more healing than others.
I hope this helps, and again, welcome aboard.
Tex
Welcome to the group. Your diet looks good (unless you're sensitive to chicken), so you should be getting better soon. A few of us take much longer to recover than others (6 months to a year), but most reach remission sooner than that. The budesonide doesn't appear to be working. Are you taking any other medications (that might be causing the continued diarrhea)? NSAIDs, PPIs and antidepressants are especially bad about triggering MC.
I doubt that the Colestid is helping any. If you want to take a bile acd sequestrant, the only one that seems to work for us is the Sandoz brand of cholestyramine. It works in cases where bile acid malabsorption (BAM) is the cause of the diarrhea. But you would have to experiment with the dose to find one that works best for you. It would probably be better to try that later, when you're not taking budesonide.
Many of us use Imodium when we're reacting if we need a little extra "insurance" for a few hours so that we can safely run errands. It's safe to take up to 8 tablets per day, but don't take any more than you need for good control, because it can cause constipation if you overdose.
You may just need more time. Some of us require more healing than others.
I hope this helps, and again, welcome aboard.
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 Tex. Thank you so much for your quick response! In answer to your question about other meds, I took 40 mg omeprazole daily for 5 years. I weaned myself off of that recently so that was probably a huge contributor to my D. It will probably take some time for none of that in my system to take effect, right? Other than that no daily meds. I do use Immodium if i need to when I go out, but it does cause gassy spurty D the next day or the day after. So I use it only when needed.
I ordered your book yesterday and I am sure it will answer alot of my questions. I will ask you a couple more for now though. How do I determine which foods are "safe" when I have daily watery D no matter what I eat? I eliminated eggs this past week, but it hasn't made a difference. How long to I wait before I re-introduce them? Also would it be better for me to eat beef rather than chicken? I have eaten it in the past with no immediate problems. If i am sensitive to a food, will I react immediately or within a few hours, or would it be days?
So sorry for all the questions. I feel like I am out here alone and like my life is over. This is the only place I have found some answers. And you know what I am going through.
Take care and thank you again.
Jeannie
I ordered your book yesterday and I am sure it will answer alot of my questions. I will ask you a couple more for now though. How do I determine which foods are "safe" when I have daily watery D no matter what I eat? I eliminated eggs this past week, but it hasn't made a difference. How long to I wait before I re-introduce them? Also would it be better for me to eat beef rather than chicken? I have eaten it in the past with no immediate problems. If i am sensitive to a food, will I react immediately or within a few hours, or would it be days?
So sorry for all the questions. I feel like I am out here alone and like my life is over. This is the only place I have found some answers. And you know what I am going through.
Take care and thank you again.
Jeannie
Jeannie,
I'm not sure how long the influence of omeprazole lasts, but you are probably correct about it's influence in causing your reactions. It's residual effects should be virtually nil after a couple of weeks, though.
Keeping a journal of everything you put into your mouth and how you feel/react as time passes will usually provide clues about problematic items, but that works better for some of us than others. The only reliable and accurate way to determine food sensitivities is by ordering stool tests from EnteroLab. But even this will will not work for the few of us who have selective IgA deficiency. About 1 in 500 people in the general population have selective IgA deficiency. That probability increases to 1 in 300 for people who are gluten sensitive, which of course includes us. If you should have selective IgA deficiency, the Enterolab tests might still work, depending on the extent of the deficiency. As the capability of producing Immunoglobulin A goes down, the risk of those tests producing a false negative result goes up. The other consideration is that long-term use of budesonide (or any other immune system suppressant) will also cause the tests to produce false negative results (because it will also eventually suppress IgA production). Our experience shows that budesonide begins to suppress the immune system after about 6 months, and after about a year of treatment, the EnteroLab tests will probably show mostly false negative results.
They should still work for you at this point, so if you are interested in the tests, most of us find Panels A1 and C1 to be the most useful.
https://www.enterolab.com/StaticPages/T ... #PanelA1C1
You can use the results to help you pinpoint any remaining problems in your diet. Or you can simply avoid chicken for a while to see if that makes a difference. More than a few of us react to chicken, but turkey and lamb seem to be safe for everyone. A number of us react to beef, but as far as I know, beef rarely causes diarrhea. My symptoms, for example, are slight bloating, a headache, and upper back pain. But the symptoms are aggravating enough that I still avoid beef.
The reason why the EnteroLab tests give so much faster results for most people is because if we remove and later add foods back into our diet (while we're still reacting), we may be reacting to them and not realize it because we are also reacting to something else. In other words, usually, we cannot reach remission until we have removed every (major) food problem from our diet (at the same time). One reaction may mask another, so adding a food back into our diet is risky, unless we have proof that it is safe for us.
That said, you should be getting close to recovery, unless we're overlooking something. Chicken, for example poses a two-faceted risk. Some of us react to chicken itself, and some of us react to high-histamine foods. Chicken quickly becomes a high-histamine food if it's not frozen (at zero degrees F, or below). Chicken that's been stored in the refrigerator for 2 days causes serious bloating and digestive discomfort for me. After 3 days of storage in the refrigerator, it will cause me to have diarrhea, if I eat it.
All alone in the world is exactly how I felt when My GI doc told me that there was nothing more that he could do for me. That's when I realized that it was time to start doing my own research.
Tex
I'm not sure how long the influence of omeprazole lasts, but you are probably correct about it's influence in causing your reactions. It's residual effects should be virtually nil after a couple of weeks, though.
Keeping a journal of everything you put into your mouth and how you feel/react as time passes will usually provide clues about problematic items, but that works better for some of us than others. The only reliable and accurate way to determine food sensitivities is by ordering stool tests from EnteroLab. But even this will will not work for the few of us who have selective IgA deficiency. About 1 in 500 people in the general population have selective IgA deficiency. That probability increases to 1 in 300 for people who are gluten sensitive, which of course includes us. If you should have selective IgA deficiency, the Enterolab tests might still work, depending on the extent of the deficiency. As the capability of producing Immunoglobulin A goes down, the risk of those tests producing a false negative result goes up. The other consideration is that long-term use of budesonide (or any other immune system suppressant) will also cause the tests to produce false negative results (because it will also eventually suppress IgA production). Our experience shows that budesonide begins to suppress the immune system after about 6 months, and after about a year of treatment, the EnteroLab tests will probably show mostly false negative results.
They should still work for you at this point, so if you are interested in the tests, most of us find Panels A1 and C1 to be the most useful.
https://www.enterolab.com/StaticPages/T ... #PanelA1C1
You can use the results to help you pinpoint any remaining problems in your diet. Or you can simply avoid chicken for a while to see if that makes a difference. More than a few of us react to chicken, but turkey and lamb seem to be safe for everyone. A number of us react to beef, but as far as I know, beef rarely causes diarrhea. My symptoms, for example, are slight bloating, a headache, and upper back pain. But the symptoms are aggravating enough that I still avoid beef.
The reason why the EnteroLab tests give so much faster results for most people is because if we remove and later add foods back into our diet (while we're still reacting), we may be reacting to them and not realize it because we are also reacting to something else. In other words, usually, we cannot reach remission until we have removed every (major) food problem from our diet (at the same time). One reaction may mask another, so adding a food back into our diet is risky, unless we have proof that it is safe for us.
That said, you should be getting close to recovery, unless we're overlooking something. Chicken, for example poses a two-faceted risk. Some of us react to chicken itself, and some of us react to high-histamine foods. Chicken quickly becomes a high-histamine food if it's not frozen (at zero degrees F, or below). Chicken that's been stored in the refrigerator for 2 days causes serious bloating and digestive discomfort for me. After 3 days of storage in the refrigerator, it will cause me to have diarrhea, if I eat it.
All alone in the world is exactly how I felt when My GI doc told me that there was nothing more that he could do for me. That's when I realized that it was time to start doing my own research.
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.
Tex-
I began keeping a food journal last week & I will check out the Entrolab tests. Depends on cost - budesonide is quite expensive and my drug plan does not cover it. Sounds like the tests would be very helpful though.
Again - I cannot thank you enough. Looking forward to getting your book.
Jeannie
I began keeping a food journal last week & I will check out the Entrolab tests. Depends on cost - budesonide is quite expensive and my drug plan does not cover it. Sounds like the tests would be very helpful though.
Again - I cannot thank you enough. Looking forward to getting your book.
Jeannie
I couldn't do canned green beans and chicken. I eat lamb turkey and venison not common meats. Now that I've been in remission I can occasionally eat beef and chicken. And also frozen green beans cooked to mush. I also eat under ripe bananas along with a lot of cooked veggies and bone broth. I don't very my diet too much keeps me out of the bathroom!! I have some desserts that I make along with paleo muffins.
Janie
Jeannie- Hi and welcome to the forum. When reacting I had eliminated gluten, dairy, sugar, fiber, and caffeine. After a couple of months I was better but noticed I still had plenty of gurgling and discomfort. I decided to be sure I was removing any foods that may have soy in them. Sure enough that was the culprit! After that I found I am also better off avoiding all legumes ( beans, peanuts, and d-alpha tocopherols which are soy based). Soy is pretty sneaky. In remission, gluten and soy still remain my two main intolerant foods. It might worth a look. Also, the natural sugars in your homemade applesauce could be too much right now (and I hope I’m wrong because it’s so tasty!)
Best wishes,
Carol
Best wishes,
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