It all started on a trip with my husband in Hawaii we had just watched some movie that had a bathroom scene so it was our joke for the trip.
I was finally diagnosed this September with CC. I had pushed for the colonoscopy which was good because the MD's originally did not think that it was necessary. Now that I have had a diagnosis I have been trying to process all the information. I have 2 little girls and a freezer full of meals that at this time we are not eating. I have been to a ND and have added some supplemental drinks as I had lost a bit of weight plus Iron as my ferritin was low. I already was taking Omegas, Probiotics, a greens drink, Stress B, and Vit. D. She also has me trying the elimination diet which is SOOO HARD! One of my MD's had prescribed a antibiotic for 4 weeks. My Gastro who had her RN call and give me the diagnosis on the phone, a prescription for Entocort, and an appointment 6 weeks out seemed a bit put off about the antibiotic and the fact that I had not started the Entocort. This was all discussed at our 6 week appointment. At this same appointment she told me how imperative it was I start Entocort because the people that have not only got worse and that we needed to know what worked. She said my biopsy was severe. I asked about diet and she said I could get tested for allergies and that my panels for celiac were negative. (I have been tested for allergies) I asked about if people are successful and she shrugged and said the disease is chronic and life long. I also have a small hiatel hernia and we tried to discuss that a bit but I left that appointment feeling pretty freaked out and depressed. I am also worried about the Entocort as my mom has Hashimoto's and my antibodies are a bit off. The MD said that doesn't matter.
I have been going to the restroom mostly once a day sometimes 2 and it can range from super soft to not that bad but not good. I swear my eyesight is affected and I feel weaker (probably from the weightloss), I get pretty nauseas sometimes too. I thought maybe that was a good sign I did not go more often but I guess I should be careful if my diagnosis is severe. Needless to say fear worked and I started 3 mg of Entocort. I should probably mention I am not a big fan of any medications and this made me feel like a failure. I have read all the posts and think I have been enlightened and I don't know what I want from posting except maybe some hope.
Another New One
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Thumbs,
Welcome to the board. I'm not sure what kind of response you're looking for either, but here goes:
First off, all of your symptoms (including the nausea, the malabsorption problem, and the vision issues) are almost surely connected with your CC. The disease can (and often does) affect any part of the digestive system, and it can also affect many organs outside the digestive system. Most doctors are unaware of this, but iritis is commonly connected with the disease. Also, a poll among the members here, for example, shows that we are approximately 7 times as likely to develop thyroid problems as someone in the general population. For at least a third of us (or more), nausea is a common symptom.
Antibiotics are generally contraindicated with CC, unless they are necessary to prevent a serious health risk, because antibiotics (especially certain types) are known triggers for CC. The safest antibiotics for us are Ciprofloxacin (and the other fluoroquinolones) and azithromycin (Z-pak).
Most supplemental drinks (if you're referring to drinks such as Boost, Encore, Assure, etc.) are loaded with casein and/or lactose and often soy. All but a few of us are sensitive to gluten, most of us are sensitive to casein (the primary protein in all dairy products), and over half of us are sensitive to soy and most other legumes. Some of us have other food sensitivities as well.
Maybe this is what you are looking for:
Despite the fact that your GI doc is correct when she says that this disease is forever (there is no known cure), that doesn't mean that we have to suffer forever. It's possible to get our life back, and most of us here have been able to do just that. Many of us here have controlled our symptoms (and we continue to control our disease) by diet changes alone. It's not easy (until we have enough experience that it becomes second nature to us), but for most of us, if we scrupulously avoid all our food sensitivities (100%), we can remain symptom-free, indefinitely. For those of us who can't track down all our food sensitivities, or those who are sensitive to just about all foods, a careful diet plus a small maintenance dose of Entocort will usually bring remission. Long-term use of Entocort has been shown to be generally safe, especially when the dosage is low. Long-term use of any other corticosteroid is definitely not safe, at any dosage rate.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. I'm not sure what kind of response you're looking for either, but here goes:
First off, all of your symptoms (including the nausea, the malabsorption problem, and the vision issues) are almost surely connected with your CC. The disease can (and often does) affect any part of the digestive system, and it can also affect many organs outside the digestive system. Most doctors are unaware of this, but iritis is commonly connected with the disease. Also, a poll among the members here, for example, shows that we are approximately 7 times as likely to develop thyroid problems as someone in the general population. For at least a third of us (or more), nausea is a common symptom.
Antibiotics are generally contraindicated with CC, unless they are necessary to prevent a serious health risk, because antibiotics (especially certain types) are known triggers for CC. The safest antibiotics for us are Ciprofloxacin (and the other fluoroquinolones) and azithromycin (Z-pak).
Most supplemental drinks (if you're referring to drinks such as Boost, Encore, Assure, etc.) are loaded with casein and/or lactose and often soy. All but a few of us are sensitive to gluten, most of us are sensitive to casein (the primary protein in all dairy products), and over half of us are sensitive to soy and most other legumes. Some of us have other food sensitivities as well.
Maybe this is what you are looking for:
Despite the fact that your GI doc is correct when she says that this disease is forever (there is no known cure), that doesn't mean that we have to suffer forever. It's possible to get our life back, and most of us here have been able to do just that. Many of us here have controlled our symptoms (and we continue to control our disease) by diet changes alone. It's not easy (until we have enough experience that it becomes second nature to us), but for most of us, if we scrupulously avoid all our food sensitivities (100%), we can remain symptom-free, indefinitely. For those of us who can't track down all our food sensitivities, or those who are sensitive to just about all foods, a careful diet plus a small maintenance dose of Entocort will usually bring remission. Long-term use of Entocort has been shown to be generally safe, especially when the dosage is low. Long-term use of any other corticosteroid is definitely not safe, at any dosage rate.
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.
Hi Thumbs and welcome. There is hope.
Since you have read "all the posts", you probably are aware that going one or two times a day is considered remission for some of us! I don't know why your MD thinks this is a severe case, but you may be able to take care of this with diet.
In your reading on this forum, you also must realize that gluten is probably your enemy and could be the cause of your brain fog. If you only do one thing with your diet, it should be to take gluten out! Most of us has more intolerances than just gluten, but it's a good place to start.
I also have CC and also am IgA and Partially IgG deficient ( anti-bodies). It's probably why we got this damn disease. I went on 9mg. of Entocort within a month of Dx.( but I had WD 5-6 x a day), but was able to slowly wean off over about a six month period of time. I'm doing pretty well and have been able to add many things back into my diet in small quantities, but I eliminated ALOT OF FOODS while on Entocort so I could get the most healing. I am still GF, DF, and mostly SF. Raw fruits are still iffy.
So, I guess what I am trying to say is that you must address your diet because when you do get off the drug, your symptoms will likely return if you don't get rid of the inflammatory foods.
I hope you find relief soon. If you have any questions, feel free to ask.
Leah
Since you have read "all the posts", you probably are aware that going one or two times a day is considered remission for some of us! I don't know why your MD thinks this is a severe case, but you may be able to take care of this with diet.
In your reading on this forum, you also must realize that gluten is probably your enemy and could be the cause of your brain fog. If you only do one thing with your diet, it should be to take gluten out! Most of us has more intolerances than just gluten, but it's a good place to start.
I also have CC and also am IgA and Partially IgG deficient ( anti-bodies). It's probably why we got this damn disease. I went on 9mg. of Entocort within a month of Dx.( but I had WD 5-6 x a day), but was able to slowly wean off over about a six month period of time. I'm doing pretty well and have been able to add many things back into my diet in small quantities, but I eliminated ALOT OF FOODS while on Entocort so I could get the most healing. I am still GF, DF, and mostly SF. Raw fruits are still iffy.
So, I guess what I am trying to say is that you must address your diet because when you do get off the drug, your symptoms will likely return if you don't get rid of the inflammatory foods.
I hope you find relief soon. If you have any questions, feel free to ask.
Leah
Welcome thumbs..........this is the correct place and bravo that you have read all the posts already. I've never been able to get through all of them yet..... 
When I got my dx of CC I was averaging 10 to 20 times a day and nite. Total misery..........going gluten free cut me down to 4 to 6 times a day and then I went on entocort. I had immediate results(which I don't think is that typical by the sounds of the rest of this group) so I was one of the lucky ones. I'm on my wean down now and have been taking 6mg a day now for 3 weeks and doing ok.........not as great as I was on 9mg but doing ok. Maybe every third or fourth day I have some softer bm. I can atest going gluten free is NOT hard at all. I really don't miss the gluten and I serve my grandkids gluten free every chance I get and they don't mind it. Chin up and settle in........it's going to be a long ride but yet a smoother ride now that you found these folks.
When I got my dx of CC I was averaging 10 to 20 times a day and nite. Total misery..........going gluten free cut me down to 4 to 6 times a day and then I went on entocort. I had immediate results(which I don't think is that typical by the sounds of the rest of this group) so I was one of the lucky ones. I'm on my wean down now and have been taking 6mg a day now for 3 weeks and doing ok.........not as great as I was on 9mg but doing ok. Maybe every third or fourth day I have some softer bm. I can atest going gluten free is NOT hard at all. I really don't miss the gluten and I serve my grandkids gluten free every chance I get and they don't mind it. Chin up and settle in........it's going to be a long ride but yet a smoother ride now that you found these folks.
Cathy
Thank you for responding to my vague post. My protein drink is inflamx it states it is formulated to be allergen free. I know reading your posts that things are sneaky though. Thank you for the information on the antibiotics I wasn't aware. I am still working on the elimination but decided at the beginning gluten needs to go no matter what so I have not tried to reintroduce that at all, we'll I ate oatmeal which was not good so I guess I did a little there. Do you guys focus on just bowel responses or do you focus on other symptoms when you reintroduced foods?
Thank you for helping so many people it really is hard to talk to my friends and family they just think I'm obsessed.
Thank you for helping so many people it really is hard to talk to my friends and family they just think I'm obsessed.
I checked out the inflamx. It has a lot of ingredients (which is worrisome, because the longer the ingredient list, the more likely it is that something in it will cause us to have a reaction), but the product does indeed appear to be allergen-free by conventional standards. The fly in the ointment is that about half of us react to legumes (such as guar gum), and many of us are sensitive to xanthan gum, also. That doesn't mean that you are sensitive to them, however. On the other hand, we have found that some of those ingredients (such as L-glutamine, for example) are indeed helpful for some of us. Most of us stay out of trouble better if we source those ingredients separately, though, so that we avoid all the ingredients that are not so helpful.
We try to stay alert to all symptoms when judging a food or ingredient. For example, when I was recovering, beef would not cause me to have D, but it would cause a slight amount of bloating, followed by pain in my upper back, which always progressed to a headache a few hours after I ate any beef. IOW, some foods have unique reaction patterns, and some foods affect different people differently.
Of course, oats are often cross-contaminated with wheat gluten, but not all of us are sensitive to pure oats. Unfortunately many of us are, including me. For me, oats causes D approximately 3 hours after I eat it, but no other noticeable symptoms. Wheat gluten, on the other hand, causes me to have gas, bloating, D, nausea, cramps, severe joint pain, muscle pain, back pain, migraines, brain fog, and gluten ataxia.
Most of us have the same problem with family and friends — they just don't understand, and/or they don't believe that we are really sick. Because of that, we consider ourselves sort of an internet family here, because we all understand what everyone else is going through, and we all have the same or very similar experiences, symptoms, etc.
Thank you for the kind words,
Tex
We try to stay alert to all symptoms when judging a food or ingredient. For example, when I was recovering, beef would not cause me to have D, but it would cause a slight amount of bloating, followed by pain in my upper back, which always progressed to a headache a few hours after I ate any beef. IOW, some foods have unique reaction patterns, and some foods affect different people differently.
Of course, oats are often cross-contaminated with wheat gluten, but not all of us are sensitive to pure oats. Unfortunately many of us are, including me. For me, oats causes D approximately 3 hours after I eat it, but no other noticeable symptoms. Wheat gluten, on the other hand, causes me to have gas, bloating, D, nausea, cramps, severe joint pain, muscle pain, back pain, migraines, brain fog, and gluten ataxia.
Most of us have the same problem with family and friends — they just don't understand, and/or they don't believe that we are really sick. Because of that, we consider ourselves sort of an internet family here, because we all understand what everyone else is going through, and we all have the same or very similar experiences, symptoms, etc.
Thank you for the kind words,
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.
Just wanted to say "Welcome".
I have a hiatel hernia as well but doctor didn't discuss it with me at all. Probably why I have heartburn some times. I hear that Entocort works pretty well for most. My doctor has me on the Pepto regimen and that is what's working 100% for me. But unfortunately, I can't take it for much longer. I was having WD 4-6 times per day, then went GF and DF and it went down to 1 to 3 times a day unless I ate some raw veggies, then that would make things worse. So mild case for me I guess. I do sometimes still get a little nauseous but I think it's due to overindulgence of food at this point. Before, I did have lots of nausea, gas, bloating and abdominal pains.
Good luck with the Entocort and the diet changes. I'm surprised too that you doctor would consider you a severe case.
Terri
I have a hiatel hernia as well but doctor didn't discuss it with me at all. Probably why I have heartburn some times. I hear that Entocort works pretty well for most. My doctor has me on the Pepto regimen and that is what's working 100% for me. But unfortunately, I can't take it for much longer. I was having WD 4-6 times per day, then went GF and DF and it went down to 1 to 3 times a day unless I ate some raw veggies, then that would make things worse. So mild case for me I guess. I do sometimes still get a little nauseous but I think it's due to overindulgence of food at this point. Before, I did have lots of nausea, gas, bloating and abdominal pains.
Good luck with the Entocort and the diet changes. I'm surprised too that you doctor would consider you a severe case.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Hi thumbs. I pay attention to all symptoms when I am testing foods. Gas, pain, and bloating are pretty common ones. The other things like headaches, joint pain, and brain fog have luckily not been part of my reactions.
Definitely go gluten free and try to notice all symptoms when you try a food ( on it's own). You have to be a detective with this disease, but once you get some answers, you will feel so much better.
Leah
Definitely go gluten free and try to notice all symptoms when you try a food ( on it's own). You have to be a detective with this disease, but once you get some answers, you will feel so much better.
Leah
You guys are a blessing. It is great to have information and support!!
The MD said that my CC was stated severe based on my biopsy results and that I had lost 12 pounds in about a month in the beginning. It started a month before my birthday but my birthday weekend I had spent a few days in bed with pretty severe symptoms and fever. I don't know if I was actually sick plus the CC or? But I had gone out to Thai Food and that night I was in bed for the next 3 days. I seem to be holding much better now on the weight and have not felt that sick again. (knock on wood). That was the day I made a GI appointment because I just knew that wasn't normal.
I will look into getting the supplements separate(L Glutamine/Turmeric?), since it does look like it has a pretty big list. The legume thing is interesting as I had a bowel of Annie's Lentil Soup towards the beginning of my elimination time as it had none of the main triggers and that was a very long day for my tummy.
Everything I have read said I will need to change my diet to maintain a "normal" state long term. I think that will be worth it to not feel bad and have as healthy life as possible. I think I was actually pretty healthy before - so I should be able to do it. Most of you can drink right?.. I have not introduced that yet and I think I miss my Latte's and Wine the most right now.
I will keep up on my charting for my foods an symptoms. I like that many of you seem to have found a place where you feel healthy again so I will use that as my motivation. I actually would have considered myself pretty healthy prior to diagnosis (besides my latte's and wine) so I should be able to take control once I get over the why me stage.
Thanks again. Glad to have a place to go.
The MD said that my CC was stated severe based on my biopsy results and that I had lost 12 pounds in about a month in the beginning. It started a month before my birthday but my birthday weekend I had spent a few days in bed with pretty severe symptoms and fever. I don't know if I was actually sick plus the CC or? But I had gone out to Thai Food and that night I was in bed for the next 3 days. I seem to be holding much better now on the weight and have not felt that sick again. (knock on wood). That was the day I made a GI appointment because I just knew that wasn't normal.
I will look into getting the supplements separate(L Glutamine/Turmeric?), since it does look like it has a pretty big list. The legume thing is interesting as I had a bowel of Annie's Lentil Soup towards the beginning of my elimination time as it had none of the main triggers and that was a very long day for my tummy.
Everything I have read said I will need to change my diet to maintain a "normal" state long term. I think that will be worth it to not feel bad and have as healthy life as possible. I think I was actually pretty healthy before - so I should be able to do it. Most of you can drink right?.. I have not introduced that yet and I think I miss my Latte's and Wine the most right now.
I will keep up on my charting for my foods an symptoms. I like that many of you seem to have found a place where you feel healthy again so I will use that as my motivation. I actually would have considered myself pretty healthy prior to diagnosis (besides my latte's and wine) so I should be able to take control once I get over the why me stage.
Thanks again. Glad to have a place to go.
Thumbs,
Contrary to the official medical position on coffee for people who have MC, most of us here find that if coffee did not make us run to the bathroom before we developed MC, then it typically does not cause D after we have MC. The problem with lattes is the milk. Roughly 85% of us are sensitive to the casein in milk.
Most alcoholic drinks are safe (as far as gluten and other food sensitivities are concerned), except for certain blended drinks that have gluten or some other allergen added back after the distillation process. Therefore, gin, whiskey, vodka, wine, champagne, etc. are usually safe. Some of us have problems with sulfites, and in that case wine can be a problem. Some wines are worse than others, in that in addition to the sulfites that occur naturally as a by product of the fermentation process, they contain added sulfites that are used as preservatives. Some wines are classified as "low sulfite", and they help to minimize the problem for someone who is sensitive to sulfites. A typical reaction due to sulfite sensitivity is a headache.
It is very common for GI specialists to mistakenly label cases where the laboratory markers of the disease (lymphocyte counts or collagen band thicnkess) are especially high, as "severe" cases. And conversely, they tend to label cases where lymphocyte counts are minimal (but still within the diagnostic range), or collagen band thicnkess is only slightly increased, as "mild" cases.
Please be aware that the degree of intensity of laboratory markers of the disease have no correlation with the severity of symptoms. That's also true for celiac disease (that the laboratory markers have no correlation with clinical symptoms). If you need medical research references on that, I'll look them up in my book and post them below. The bottom line is that when a GI specialist informs a patient that her or his case is either "severe" or "mild", that doesn't mean a thing, as far as the clinical symptoms are concerned. Some so-called "severe" cases are only a minor inconvenience, with few symptoms, and some so-called "mild" cases are debilitating, with severe symptoms.
Here are those references:
http://www.ncbi.nlm.nih.gov/pubmed/3600036
http://www.ncbi.nlm.nih.gov/pubmed/16982222
Tex
Contrary to the official medical position on coffee for people who have MC, most of us here find that if coffee did not make us run to the bathroom before we developed MC, then it typically does not cause D after we have MC. The problem with lattes is the milk. Roughly 85% of us are sensitive to the casein in milk.
Most alcoholic drinks are safe (as far as gluten and other food sensitivities are concerned), except for certain blended drinks that have gluten or some other allergen added back after the distillation process. Therefore, gin, whiskey, vodka, wine, champagne, etc. are usually safe. Some of us have problems with sulfites, and in that case wine can be a problem. Some wines are worse than others, in that in addition to the sulfites that occur naturally as a by product of the fermentation process, they contain added sulfites that are used as preservatives. Some wines are classified as "low sulfite", and they help to minimize the problem for someone who is sensitive to sulfites. A typical reaction due to sulfite sensitivity is a headache.
It is very common for GI specialists to mistakenly label cases where the laboratory markers of the disease (lymphocyte counts or collagen band thicnkess) are especially high, as "severe" cases. And conversely, they tend to label cases where lymphocyte counts are minimal (but still within the diagnostic range), or collagen band thicnkess is only slightly increased, as "mild" cases.
Please be aware that the degree of intensity of laboratory markers of the disease have no correlation with the severity of symptoms. That's also true for celiac disease (that the laboratory markers have no correlation with clinical symptoms). If you need medical research references on that, I'll look them up in my book and post them below. The bottom line is that when a GI specialist informs a patient that her or his case is either "severe" or "mild", that doesn't mean a thing, as far as the clinical symptoms are concerned. Some so-called "severe" cases are only a minor inconvenience, with few symptoms, and some so-called "mild" cases are debilitating, with severe symptoms.
Here are those references:
http://www.ncbi.nlm.nih.gov/pubmed/3600036
http://www.ncbi.nlm.nih.gov/pubmed/16982222
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 Thumbs,
Welcome from Hong Kong. Just wanted to add that I believe beer can be a problem (since it is made with wheat and/or barley and is fermented rather than distilled). My substitute for beer when wanting a similar drink is cider.
Best wishes, ant
Welcome from Hong Kong. Just wanted to add that I believe beer can be a problem (since it is made with wheat and/or barley and is fermented rather than distilled). My substitute for beer when wanting a similar drink is cider.
Best wishes, ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Hi Ant,
Thanks for pointing that out. I intended to mention it in my post, but apparently I got sidetracked, and had an attack of CRS.
Tex
Thanks for pointing that out. I intended to mention it in my post, but apparently I got sidetracked, and had an attack of CRS.
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 Thumbs. When it comes beverages, it seems we are all different. I can't handle coffee AT ALL. nor can I do black tea. I tried tea for the first time in 10 months this weekend and dumped it out half way through because my gut hurt instantly.
As for alcohol, I found that red wine is the worst. White is ok in small quantities, but will still bring on D if I drink more then 2 glasses. Vodka seems to be best if it's not mixed with lots of fruit juice/sugar/acid.
Sounds like you are doing all the right things.
Leah
As for alcohol, I found that red wine is the worst. White is ok in small quantities, but will still bring on D if I drink more then 2 glasses. Vodka seems to be best if it's not mixed with lots of fruit juice/sugar/acid.
Sounds like you are doing all the right things.
Leah