This is kind of long and rambly .. I am just learning about this disease, have been reading this message board .. but there is a lot of info to get through yet ..
After about a month with diarrhea, my Mom (78) was diagnosted with LC (biopsy from Colonoscopy). She was put on Endocort. She was on 9 mg, then had many issues, and they took her down to 3 .. then they took her off totally. She had incredible bloating, no appetite, weakness, tired. So, she was on for 3.5 weeks . and has now been off for several days.
I believe her diarrhea had stopped for awhile .. but now it is back, she isn't eating at all, is basically wasting away.
They told her that they think the cause of the LC was her arthritis medication (don't know what it is) . and they have taken her off that.
She is also on meds for type II diabetes, although I think she has greatly reduced or stopped.
SHe is on med for heart palpitations.
SHe is on med for high blood pressure, although I think they took her off that too, or at least reduced it.
She is going back to her doctor tomorrow -- apparently there is another drug that they might try.
I have been trying to talk to her about the nutritional connection . but for right now, we need to get her stabilized . she has to eat something. She did spend some time reading this board, but now feels too sick . and her doctor told her not to read it ( ???not sure why).
I may be able to get her to go and see a nutritionist at this company (I have taken several classes from them) Nutritional Weight and Wellness .. they focus on healing the gut, and eating real food .. but, after reading this board, not sure what they could do . it seems like everyone has to find their own unique way to handle this....
At this point, we do not know of any food sensitivities . haven't done any of the tests, etc. discussed on this board.
My Dad just picked up some Ensure (sp?) and some yogurt, but I don't think she has eaten anything.
?how to get some food in her -- she doesn't feel like eating ... and many of you mention rice and potatoes .. but these just turn to sugar which increases inflammation, and isn't good for a diabetic ..
?what do you think the other drug might be, what are the best options for folks that can't tolerate Endocort?
Thanks
Karen
My Mom recently diagnosed - looking for help with next steps
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Karen wrote:She did spend some time reading this board, but now feels too sick . and her doctor told her not to read it ( ???not sure why).
Hi Karen,
Welcome to the board. Most GI specialists are very self conscious and insecure about this disease, because the don't understand how to treat it. That's why they recommend against seeking help elsewhere -- it hurts their ego when patients are able to control their symptoms by staying away from medical advice. That's very common with this disease, however -- we have to take charge of our own health if we are to control LC, because the doctors simply don't know how to treat it.
My tag line also explains why so many doctors don't like internet discussion boards -- they just don't "get it".
Basically, the cause of the inflammation is food sensitivities that are triggered when the genes that predispose to microscopic colitis are triggered. The meds can sometimes help to suppress the symptoms, but as long as we continue to eat the foods that cause the inflammation, the inflammation continues to be regenerated, and the damage to the intestines continues to accrue. The worst offender is gluten, and dairy products run a close second, (despite the fact that most doctors will argue that diet has nothing to do with this disease. That's like arguing that breathing polluted air has nothing to do with asthma, black lung disease, COPD, lung cancer, etc.
Probably better than 95% of the members of this board are sensitive to gluten, and most of us (roughly 85%) are also sensitive to casein (the primary protein in all dairy products). At least half of us are also sensitive to soy, and all it's relatives in the legume family. Some have many food sensitivities, and some have only a few, but we are either sensitive to certain of those foods, or our inflammation is due to some medication that we're taking, or both.
Usually, if medications are causing the inflammation, by avoiding gluten, (100% -- just cutting down won't help), dairy and soy, our other symptoms for which the medications were prescribed, (such as RA chronic fatigue, asthma, skin rashes, (including psoriasis), will either greatly diminish, or disappear completely. The old saying about "we are what we eat" definitely applies to this disease, because if we eat the wrong foods we are sick as a dog, and if we avoid all those problem foods, we are healthy. It's as simple as that, but strangely, many doctors are unable to understand such a simple concept. Conventional medical training does not cover the fact that diet determines health. Unfortunately, most nutritionists are not very helpful, either, because most of them know virtually nothing about treating this disease.
Again, welcome aboard and please feel free to ask anything. It takes a lot of dedication and attention to detail, but your mother can get her life back if she is willing to adjust her diet as needed. It takes a while for the diet to work, because the inflammation in the gut heals slowly, but dedication and perseverance pays off. And the main point is that the diet works even when no medications are helpful, and there are no risks involved with changing the diet. Obviously, taking medications is full of risks, because there is no such thing as a drug without any side effects.
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.
Thanks for your response, I am sure I will have many more questions . or maybe even Mom will get on and speak for herself. For the short term, am wondering if people have advice for:
1. How to reduce her bloating, pain and discomfort .. (she is also very fatigued)
2. What foods might entice her? She is so bloated and uncomfortable that she just doesn't feel like eating. The diarrhea had disappeared for a couple of days, was back yesterday, and has not occurred today. She is literally shrinking before our eyes ..
All she has eaten today is an Ensure liquid drink .. ??? any opinions on if this is a good or bad idea?
Thanks
Karen
1. How to reduce her bloating, pain and discomfort .. (she is also very fatigued)
2. What foods might entice her? She is so bloated and uncomfortable that she just doesn't feel like eating. The diarrhea had disappeared for a couple of days, was back yesterday, and has not occurred today. She is literally shrinking before our eyes ..
All she has eaten today is an Ensure liquid drink .. ??? any opinions on if this is a good or bad idea?
Thanks
Karen
HI Karen, if the Ensure is dairy based I'd be wary of it. Milk/dairy based products will probably only aggravate the diarrhea, gas and bloating. I don't have diabetes but when I was as ill as your Mom I found chicken broth and roasted chicken to be about the best thing for me. It didn't aggravate anything and the protein is necessary for healing. Sometimes I could add cooked carrots to it and maybe a little seasoning of some kind and make it into a soup. Occasionally I could eat some deli turkey too, but broth and homemade soup (gluten free of course) were really what helped me stay afloat.
I can appreciate what you said about her wasting away. The day that was my first of a huge flare that prompted my diagnosis, I was finishing a 5k running program (I have run 5ks before). Once hit with LC I lost 2-3 pounds a week while laying around until I had lost 24 pounds total, most of it muscle. I am 54 years old. At your Mom's age this would be devastating. Entocort is what got me back to functioning, eating enough calories and back to work. Its really too bad she had to stop taking it because from what I hear and read, it is the best choice for getting the immune system to back off, so the inflammation decreases. I also had to have anti-nausea meds and sometimes still do, as well as Immodium.
You will find so much good information re: LC and MC on this site-- practical information from people who are living with the condition and many who have it in remission. I hope this big flare she's in gets arrested soon.
And not to give you more to worry about Karen, but if your family is prone to autoimmune conditions you may also want to go gluten free as well. It would be much easier to do that now than after you are this sick and forced to.
take care,
Carol
I can appreciate what you said about her wasting away. The day that was my first of a huge flare that prompted my diagnosis, I was finishing a 5k running program (I have run 5ks before). Once hit with LC I lost 2-3 pounds a week while laying around until I had lost 24 pounds total, most of it muscle. I am 54 years old. At your Mom's age this would be devastating. Entocort is what got me back to functioning, eating enough calories and back to work. Its really too bad she had to stop taking it because from what I hear and read, it is the best choice for getting the immune system to back off, so the inflammation decreases. I also had to have anti-nausea meds and sometimes still do, as well as Immodium.
You will find so much good information re: LC and MC on this site-- practical information from people who are living with the condition and many who have it in remission. I hope this big flare she's in gets arrested soon.
And not to give you more to worry about Karen, but if your family is prone to autoimmune conditions you may also want to go gluten free as well. It would be much easier to do that now than after you are this sick and forced to.
take care,
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
Thank you Carol .. yes, we seem to have an autoimmune thing going on .. I will definitely look at the gluten free diet .. and am going to suggest that Mom get tested .. it sounds like Enterolab is the way to go ???does anyone know if it is covered by Medicare???
I am a virtually symptom free Sjogren's Syndrome gal .. with some fibromyalgia thrown in .. had acid reflux, lots of gas and stomach discomfort .. aches and pains ..
Then, a couple of years ago, I took a series of nutrition classes from a company here in Minneapolis ... Nutritional Weight and Wellness .. they are all about real foods, cutting out/down the refined carbs (cereal, bread, potatoes, etc.) sugar, .. a mix of a healthy fat, healthy carb, healthy protein at all meals and snacks .. anyway .. I feel much better when I eat this way, and basically never have heartburn anymore .. aches and pains virtually gone (only if I slip up, and eat too much sugar).
So, I will try to find or make some healthy chicken soup for her .. and will see about getting her tested ..
Thank you so much
Karen
I am a virtually symptom free Sjogren's Syndrome gal .. with some fibromyalgia thrown in .. had acid reflux, lots of gas and stomach discomfort .. aches and pains ..
Then, a couple of years ago, I took a series of nutrition classes from a company here in Minneapolis ... Nutritional Weight and Wellness .. they are all about real foods, cutting out/down the refined carbs (cereal, bread, potatoes, etc.) sugar, .. a mix of a healthy fat, healthy carb, healthy protein at all meals and snacks .. anyway .. I feel much better when I eat this way, and basically never have heartburn anymore .. aches and pains virtually gone (only if I slip up, and eat too much sugar).
So, I will try to find or make some healthy chicken soup for her .. and will see about getting her tested ..
Thank you so much
Karen
Karen,
I agree with Carol. Early on, I tried to boost my energy with products such as Ensure, Boost, Encore, etc., but after it dawned on me what was causing my problems, I started reading labels, and I promptly dropped all those products. All of them have an ingredient list as long as your arm, and as Carol pointed out, they contain many ingredients that would cause most of us to react.
On my worst days (and there were many of them), I lived on homemade chicken soup, sometimes with a little rice added. Beware of canned and dry soups -- virtually all of them contain gluten and/or dairy ingredients. There are a few safe soups that can be found in health food stores, but it's much cheaper, and much safer to make your own. A lot of commercial gluten-free products are cross contaminated, and won't pass muster, under close scrutiny.
The bloating comes from gluten and undigested dairy products, fermenting in her intestines. Eliminating those foods will eliminate the bloating. Bloating is a classic symptom of celiac disease and microscopic colitis, and in both cases, its caused by gluten and dairy products, and for some of us, soy can be just as bad, or worse.
In place of milk, she should try almond milk. I use Silk brand Almond Milk. If she likes cereal for breakfast, (or a snack), General Mills makes several types of Chex cereal that is gluten-free, such as Corn chex, Rice Chex, and Honey Nut Chex (my favorite). As Carol pointed out, though, protein is much better for us than carbs, because a lot of protein is required to heal the damage caused by this disease, so meat, poultry, and fish should be a major part of the recovery diet.
Tex
P. S. I would be surprised if medicare would cover the cost of the EnteroLab tests. I recently ordered a couple more of their tests, (a few months ago), and I never even asked if they might be covered by medicare.
I agree with Carol. Early on, I tried to boost my energy with products such as Ensure, Boost, Encore, etc., but after it dawned on me what was causing my problems, I started reading labels, and I promptly dropped all those products. All of them have an ingredient list as long as your arm, and as Carol pointed out, they contain many ingredients that would cause most of us to react.
On my worst days (and there were many of them), I lived on homemade chicken soup, sometimes with a little rice added. Beware of canned and dry soups -- virtually all of them contain gluten and/or dairy ingredients. There are a few safe soups that can be found in health food stores, but it's much cheaper, and much safer to make your own. A lot of commercial gluten-free products are cross contaminated, and won't pass muster, under close scrutiny.
The bloating comes from gluten and undigested dairy products, fermenting in her intestines. Eliminating those foods will eliminate the bloating. Bloating is a classic symptom of celiac disease and microscopic colitis, and in both cases, its caused by gluten and dairy products, and for some of us, soy can be just as bad, or worse.
In place of milk, she should try almond milk. I use Silk brand Almond Milk. If she likes cereal for breakfast, (or a snack), General Mills makes several types of Chex cereal that is gluten-free, such as Corn chex, Rice Chex, and Honey Nut Chex (my favorite). As Carol pointed out, though, protein is much better for us than carbs, because a lot of protein is required to heal the damage caused by this disease, so meat, poultry, and fish should be a major part of the recovery diet.
Tex
P. S. I would be surprised if medicare would cover the cost of the EnteroLab tests. I recently ordered a couple more of their tests, (a few months ago), and I never even asked if they might be covered by medicare.
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 karen. I feel so sorry for your Mom and it must be very hard for you also. Tex is an expert, so his advise is solid. Getting rid of all dairy and wheat is the first step to healing. And Carol is exactly right with the chicken soup with carrots advise. It's a great place to start. I hope she starts feeling better soon.
Leah
Leah
Thank you for checking in .. we are in a strange place. It turns out that the bloating/gas/discomfort is something a little different. She went in to her regular doctor on Monday cause she was so big and uncomfortable. They thought it was an 'air bubble'. Smaller than a beach ball, but probably bigger than a basketball. They did a CT scan. Then, folks went back in on Tuesday a.m. .. and discovered that it isn't an air bubble, it was fluid. So, they went back in yesterday p.m. and she had 6.5 liters of fluid taken out of her stomach (amounted to 12 lbs).
She was so much more comfortable, said she could breathe, and actually felt like eating. I haven't checked in today to see how the food went down. After all, there is still the newly discovered colitis issue. I did an organic chicken in my crock pot, got instant organic white rice from trader joe's, and some frozen carrots, as well as some chicken broth in case she wanted more of a soup. thanks so much for the suggestion.
Now, they are evaluating that fluid to see what is going on .. will be a couple of days.
They said that it didn't have anything to do with the colitis or the Endocort ... but it seems strange that it is all happening at the same time.
Needless to say, we are all extremely worried, and have no idea what is the 'real' problem here.
Karen
She was so much more comfortable, said she could breathe, and actually felt like eating. I haven't checked in today to see how the food went down. After all, there is still the newly discovered colitis issue. I did an organic chicken in my crock pot, got instant organic white rice from trader joe's, and some frozen carrots, as well as some chicken broth in case she wanted more of a soup. thanks so much for the suggestion.
Now, they are evaluating that fluid to see what is going on .. will be a couple of days.
They said that it didn't have anything to do with the colitis or the Endocort ... but it seems strange that it is all happening at the same time.
Needless to say, we are all extremely worried, and have no idea what is the 'real' problem here.
Karen
You are probably right -- they are probably wrong. MC can sometimes cause gastroparesis (delayed stomach emptying), similar to diabetes. It can happen when the stomach is inflamed in the same way as the intestines. It happened to me, and several other members here, when MC was active. Most GI docs don't even realize that the stomach can be involved with MC, but the disease can affect any part of the digestive system, from mouth to anus.Karen wrote:They said that it didn't have anything to do with the colitis or the Endocort ... but it seems strange that it is all happening at the same time.
On the other hand, if she happens to have diabetes, then the gastroparesis is probably connected with the diabetes. Usually, gastroparesis will cause nausea.
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.
I wanted to thank you all for helping me to understand my Mom's recently diagnosed LC.
Unfortunately, the fluid was not at all related. She has been diagnosed with ovarian cancer. Luckily, the diarrhea has been taking a break .. as she needs to eat, gain weight, and starts chemo this week.
Again, thanks for your willingness to help ..
Karen
Unfortunately, the fluid was not at all related. She has been diagnosed with ovarian cancer. Luckily, the diarrhea has been taking a break .. as she needs to eat, gain weight, and starts chemo this week.
Again, thanks for your willingness to help ..
Karen
Incidentally, this is a good reminder for women: don't always assume a growing belly and bloating is just a side-effect of MC or something you ate. I've seen several women come into my OB/GYN practice for annual exams feeling fine, or with minor complaints of bloating or weight gain, who ended up with an ovarian cancer diagnosis.