Mom was diagnosed with MC several years ago. She is currently on Welchol (2 30 minutes before each meal) which does not seem to be helping her at all. She still has constant D and stomach pain and still runs to the bathroom after every meal. She was given a prescription for Entocort that I am currently having filled.
Mom suffers from dementia (she has good days and bad days) and insomnia. Therefore, her caregiver was reluctant to have the Entocort filled because the Dr. said side effects could be insomnia and delirium. She lives about 10 hours from me and is currently staying here so I can try and get to the bottom of this. Her weight has dropped down to around 80 pounds (lost 8 in the last month) from constant D. Today, I gave her 2 immodium with lunch and started her on a GF,DF diet after coming across this forum. She is not too happy about the GF, DF Diet because she loves her bread and peanut butter! I did buy her some GF bread today though.
Current meds she is on:
Lisinopril for Blood pressure (1 12.5 mg tablet)
Gabapentin for Trigeminal neuralgia (2 100 mg, it was 6 but is in remission for now)
Aricept for memory (10 mg at night)
Non prescription meds: (today only gave her the Homo vitamin)
Coconut Oil, Caltrate, Ginko, Multi-vitamin, and a Homocysteine Factor vitamin for a genetic Vitamin B absorption genetic problem. Melatonin at night to help her sleep.
We have been around and about with doctors to no avail. I have switched doctors and also taken her to specialists -- mostly because of her dementia issues and the fact that they all seemed to want to drug her. Like I said, it is not full blown but she has her moments.
I am thinking of stopping the Welchol all together because it has not helped. I am nervous about the Endocort side effects if what the Dr. says is correct. However, her insides have to be so inflamed I know she needs something to calm it down.
Any comments/advice is appreciated!!!
Thanks,
Karen
Researching info for my 82 year old mom who has MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Karen,
Welcome to the forum. My mother has dementia/alzheimers and sounds like she is in a similar state as yours. My Mom does not have MC but it is tough to keep her weight up.
Short term you might want to consider discontinue the caltrate, ginko and multi vitamin By short term say for a period of 4 weeks or so. Generally we don't handle supplements well when we have D frequently.
I was a Entocort user. (Age 50 at the time.) 4.5 months on Entocort. It works but I found it to be a strong drug and I had memory confusion. A lot of people don't have side effects. Another problem with Entocort is that the person needs to be GF in order to get off of it. Entocort doesn't heal MC, it helps manage the symptoms until inflammation dies down and the person is in remission. Entocort without 100% compliance with GF means high risk of relapse two weeks after last pill. This is frequently not mentioned by Docs. How old is your mother? Sounds morbid but life expectancy? If she is say 86 plus you might consider keeping her on Entocort but take her down to a very low dose as a maintenance dose. Note that Entocort gets less effective with long term usage, i.e. 5 or 6 years it will become less effective.....takes a bigger dose to achieve same results.
Conservative measures to try first would be pepto bismol treatment. Typically recommended is 8 tabs per day for 6 or 8 weeks. Risk is tinitis at this dose.
Since your Mother is so small perhaps try 4 tabs per day. You could maybe go to 5 or 6 tabs per day and not get tinitis but at 80 pounds 4 should be plenty enough.
You could try some other versions of the Welchol. Also please note it could take 3-4 weeks on Welchol combined with GF and DF to take effect. There is a recent thread on the Welchol type drugs and it appears they take some time to kick in plus the users are GF and DF.
Pepto, Welchol, Entocort......all will take some time. Entocort took about 3 weeks to kick in for me.
Food is really key. THink unprocessed, gentle foods. Protein at every meal.
My Mom is celiac but does not have MC. Mom eats a lot of GF almond butter sandwiches. Almond butter is safer for us than peanut butter. Peanut butter is a legume (related to soy.)
For breakfast think eggs, GF pancakes etc. Dinner protein, rice or potatos, and way overcooked veggie like squash or carrots. We find the coconut oil really helps with Mom's brain function.
This is a good thread to read. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173
Tex's book is worth it....see upper right hand corner.
Brandy
Welcome to the forum. My mother has dementia/alzheimers and sounds like she is in a similar state as yours. My Mom does not have MC but it is tough to keep her weight up.
Short term you might want to consider discontinue the caltrate, ginko and multi vitamin By short term say for a period of 4 weeks or so. Generally we don't handle supplements well when we have D frequently.
I was a Entocort user. (Age 50 at the time.) 4.5 months on Entocort. It works but I found it to be a strong drug and I had memory confusion. A lot of people don't have side effects. Another problem with Entocort is that the person needs to be GF in order to get off of it. Entocort doesn't heal MC, it helps manage the symptoms until inflammation dies down and the person is in remission. Entocort without 100% compliance with GF means high risk of relapse two weeks after last pill. This is frequently not mentioned by Docs. How old is your mother? Sounds morbid but life expectancy? If she is say 86 plus you might consider keeping her on Entocort but take her down to a very low dose as a maintenance dose. Note that Entocort gets less effective with long term usage, i.e. 5 or 6 years it will become less effective.....takes a bigger dose to achieve same results.
Conservative measures to try first would be pepto bismol treatment. Typically recommended is 8 tabs per day for 6 or 8 weeks. Risk is tinitis at this dose.
Since your Mother is so small perhaps try 4 tabs per day. You could maybe go to 5 or 6 tabs per day and not get tinitis but at 80 pounds 4 should be plenty enough.
You could try some other versions of the Welchol. Also please note it could take 3-4 weeks on Welchol combined with GF and DF to take effect. There is a recent thread on the Welchol type drugs and it appears they take some time to kick in plus the users are GF and DF.
Pepto, Welchol, Entocort......all will take some time. Entocort took about 3 weeks to kick in for me.
Food is really key. THink unprocessed, gentle foods. Protein at every meal.
My Mom is celiac but does not have MC. Mom eats a lot of GF almond butter sandwiches. Almond butter is safer for us than peanut butter. Peanut butter is a legume (related to soy.)
For breakfast think eggs, GF pancakes etc. Dinner protein, rice or potatos, and way overcooked veggie like squash or carrots. We find the coconut oil really helps with Mom's brain function.
This is a good thread to read. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173
Tex's book is worth it....see upper right hand corner.
Brandy
Brandy
Thanks for all the information. Mom is 82 tomorrow. I gave her the 2 immodium with lunch and so far she hasn't had an episode. Do you recommend pepto bismal over immodium? I did give her some pepto bismal yesterday but did not see as quick a change as with the immodium. I worry about all these medications with her being so thin.
The coconut oil she has are the capsules. Is that what you give your mom? What is her dosage?
What about Ensure? She has been drinking that daily. I know it seems to have some soy and milk protein concentrate in it.
She is more likely to listen to me than a doctor!
Karen
Thanks for all the information. Mom is 82 tomorrow. I gave her the 2 immodium with lunch and so far she hasn't had an episode. Do you recommend pepto bismal over immodium? I did give her some pepto bismal yesterday but did not see as quick a change as with the immodium. I worry about all these medications with her being so thin.
The coconut oil she has are the capsules. Is that what you give your mom? What is her dosage?
What about Ensure? She has been drinking that daily. I know it seems to have some soy and milk protein concentrate in it.
She is more likely to listen to me than a doctor!
Karen
Hi Karen,
We give Mom coconut oil in her hot tea. This was about the only way I could get her to take it. She has about 3 cups of tea per day and we put about a generous teaspoon in her tea. This seems to be working pretty well. The extra virgin coconut oil is flavorless and is the best choice for tea. I wasn't aware it was available in capsule form. The jarred version may be cheaper than capsules but I've never checked pricing.
I think everyone on this forum has used both pepto and immodium at some point in time. I expect almost all of the women keep pepto and/or immodium in their purses. Pepto is a regimen for healing, i.e. moving into remission. Immodium will create solid stool but won't heal you if that makes sense. Generally folks on the board use immodium for travel but I know that we have had some seniors that will take 1/2 or 1 immodium daily as a maintenance thing. It sounds like your mother has suffered the last 3 years. It might not be a bad thing to keep her on immodium for awhile so she can absorb more nutrition. The negative to long term use of immodium is that it can make memory issues worse. http://www.peoplespharmacy.com/2015/02/ ... gic-drugs/
Pepto is pretty benign. It has been used for stomach issues since ancient/Egyptian times.
Some other food hints. Eliminate all juices and fruits. Bananas and avacados are generally ok. Eliminate all raw foods. Diet should be mostly protein and rice/potato or sweet potato. If you are working cook chicken and other proteins in big lots so you can freeze and reheat. Homemade chicken broth and/or homemade chicken soup with GF noodles is good if you have the time. Narrow food regimen is best early on. Frequent meals are best for those needing calories.
I'm hoping Tex can chime in a little more on pepto and immodium.
Brandy
We give Mom coconut oil in her hot tea. This was about the only way I could get her to take it. She has about 3 cups of tea per day and we put about a generous teaspoon in her tea. This seems to be working pretty well. The extra virgin coconut oil is flavorless and is the best choice for tea. I wasn't aware it was available in capsule form. The jarred version may be cheaper than capsules but I've never checked pricing.
I think everyone on this forum has used both pepto and immodium at some point in time. I expect almost all of the women keep pepto and/or immodium in their purses. Pepto is a regimen for healing, i.e. moving into remission. Immodium will create solid stool but won't heal you if that makes sense. Generally folks on the board use immodium for travel but I know that we have had some seniors that will take 1/2 or 1 immodium daily as a maintenance thing. It sounds like your mother has suffered the last 3 years. It might not be a bad thing to keep her on immodium for awhile so she can absorb more nutrition. The negative to long term use of immodium is that it can make memory issues worse. http://www.peoplespharmacy.com/2015/02/ ... gic-drugs/
Pepto is pretty benign. It has been used for stomach issues since ancient/Egyptian times.
Some other food hints. Eliminate all juices and fruits. Bananas and avacados are generally ok. Eliminate all raw foods. Diet should be mostly protein and rice/potato or sweet potato. If you are working cook chicken and other proteins in big lots so you can freeze and reheat. Homemade chicken broth and/or homemade chicken soup with GF noodles is good if you have the time. Narrow food regimen is best early on. Frequent meals are best for those needing calories.
I'm hoping Tex can chime in a little more on pepto and immodium.
Brandy
Generally the forum does not recommend boost or ensure although I know we have members that have taken it/are taking it. If you have no choice but to give boost or ensure make sure the version is GF, DF and Soy Free. The problem with both boost and ensure is they are loaded with chemicals. MCers do best with foods that don't have ingredient lists like chicken, turkey, potato and/or rice.
But.....80 pounds is seriously low. Sometimes you have to do what you can do.
But.....80 pounds is seriously low. Sometimes you have to do what you can do.
Hi Karen,
Welcome to our Internet family. Brandy has offered some very good information, so I will just touch on a couple of topics to add to what she posted. Regarding Imodium and Pepto-Bismol for treating MC, as Brandy mentioned, Imodium is useful for slowing down intestinal motility so that food does not go through the GI tract so quickly. Basically it does not treat MC, but it postpones bowel movements, and often reduces the urgency, to make life a bit easier.
The Pepto-Bismol treatment, by contrast, has been shown in trials to be approximately 85 % effective at bringing remission from MC, on the average. The average time to remission was approximately 2 weeks in the trials. I agree with Brandy that based on your mother's current weight, 4 tablets (or the liquid equivalent) should be sufficient.
But in order to maintain remission after the Pepto treatment is ended, the patient must carefully follow a GF diet from the start, and continue to avoid gluten indefinitely, in order to remain in remission. Also, any other foods that cause the production of antibodies must be avoided. Most of us are also sensitive to casein, the primary protein in all dairy products, so we have to avoid all dairy products, and many or us are also sensitive to soy.
About 13 years ago, when I was first trying to find a way to eliminate my symptoms, I was also a heavy user of products such as Boost, Ensure, etc., but after I realized that food sensitivities were the source of the inflammation in my intestines, I had to stop using all of those products, because all of them (at least all that I considered at the time) were loaded with casein derivatives, and soy. They are great for energy, but anyone who has MC simply cannot tolerate them because of the inflammatory ingredients.
If your mother likes smoothies, you can make a high-calorie smoothie by using canned coconut milk (so that it is pure, and loaded with calories), along with maybe a frozen banana and maybe some frozen blueberries or some other berries, in a food processor. Most of the pure canned coconut milk that I have seen is a product of Thailand, and it can often be found in supermarkets in ethnic food sections.
If your mother is taking the Welchol as a treatment for MC, then you might be correct that she would be better off without it. However, if it is prescribed for other purposes, Welchol is probably the antidepressant/antianxiety medication least likely to cause an MC reaction.
Regarding Entocort (budesonide), while it is true that it can cause insomnia in some patients, I'm not aware of anyone among the members here who has reported delirium issues. While it is true that delirium is listed as a side effect for budesonide, that listing falls under rare side effects. The odds of a rare side effect occurring are very slim. On the other hand, weight gain is a common side effect of budesonide.
Again, welcome aboard, and please feel free to ask anything. I hope that some of this is helpful.
Tex
Welcome to our Internet family. Brandy has offered some very good information, so I will just touch on a couple of topics to add to what she posted. Regarding Imodium and Pepto-Bismol for treating MC, as Brandy mentioned, Imodium is useful for slowing down intestinal motility so that food does not go through the GI tract so quickly. Basically it does not treat MC, but it postpones bowel movements, and often reduces the urgency, to make life a bit easier.
The Pepto-Bismol treatment, by contrast, has been shown in trials to be approximately 85 % effective at bringing remission from MC, on the average. The average time to remission was approximately 2 weeks in the trials. I agree with Brandy that based on your mother's current weight, 4 tablets (or the liquid equivalent) should be sufficient.
But in order to maintain remission after the Pepto treatment is ended, the patient must carefully follow a GF diet from the start, and continue to avoid gluten indefinitely, in order to remain in remission. Also, any other foods that cause the production of antibodies must be avoided. Most of us are also sensitive to casein, the primary protein in all dairy products, so we have to avoid all dairy products, and many or us are also sensitive to soy.
About 13 years ago, when I was first trying to find a way to eliminate my symptoms, I was also a heavy user of products such as Boost, Ensure, etc., but after I realized that food sensitivities were the source of the inflammation in my intestines, I had to stop using all of those products, because all of them (at least all that I considered at the time) were loaded with casein derivatives, and soy. They are great for energy, but anyone who has MC simply cannot tolerate them because of the inflammatory ingredients.
If your mother likes smoothies, you can make a high-calorie smoothie by using canned coconut milk (so that it is pure, and loaded with calories), along with maybe a frozen banana and maybe some frozen blueberries or some other berries, in a food processor. Most of the pure canned coconut milk that I have seen is a product of Thailand, and it can often be found in supermarkets in ethnic food sections.
If your mother is taking the Welchol as a treatment for MC, then you might be correct that she would be better off without it. However, if it is prescribed for other purposes, Welchol is probably the antidepressant/antianxiety medication least likely to cause an MC reaction.
Regarding Entocort (budesonide), while it is true that it can cause insomnia in some patients, I'm not aware of anyone among the members here who has reported delirium issues. While it is true that delirium is listed as a side effect for budesonide, that listing falls under rare side effects. The odds of a rare side effect occurring are very slim. On the other hand, weight gain is a common side effect of budesonide.
Again, welcome aboard, and please feel free to ask anything. I hope that some of this is helpful.
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 Karen,
Tex is a better writer than I am. Since I've been on the board which is 2011 I don't think anyone has had delirium side effects. I had what I would call brain fog on Entocort and I would consider that rare, i.e. I had it on Entocort but others really don't seem to. Insomnia comes up once in awhile amongst users but seems to be pretty rare. A more common side effect that comes up is stomach spasms/cramping but that generally goes away after a week or so of usage.
Another thought.....since your mother is so low in weight she would probably respond to a lower dosage of Entocort. Usual starting dose of Entocort is 3 pills and then dose tapers down. Since your mother is so low in weight I'm wondering if a starting dose of 2 pills then down to 1 pill if she responds and/or has side effects. If a 160 pound person gets 3 pills this seems way too much for an 80 pound woman. I would run this by your pharmacist or physician.i.e. it is possible you could start her on two pills then if she responds move her down to 1 pill pretty quickly like in a week or two if she responds.
Here is the Astra Zeneca Entocort spec sheet which lists their side effects. http://www1.astrazeneca-us.com/pi/entocortec.pdf
Entocort has been used for awhile to treat MC. We've had a lot of members use Entocort. Most users respond to it. Most don't get side effects. I believe we hear more about side effects on the forum because we are on the internet. People with side effects are more likely to complain. People without side effects don't post.
I keep coming back to the 80 pound weight which seems extremely low. We tend to be naturalistic on the board and a lot of folks are in remission from diet alone but to be at 80 pounds with WD seems risky. Worst case you could try her on the meds and pull her off of it with a small taper if you need to get her off of it.
Brandy
Tex is a better writer than I am. Since I've been on the board which is 2011 I don't think anyone has had delirium side effects. I had what I would call brain fog on Entocort and I would consider that rare, i.e. I had it on Entocort but others really don't seem to. Insomnia comes up once in awhile amongst users but seems to be pretty rare. A more common side effect that comes up is stomach spasms/cramping but that generally goes away after a week or so of usage.
Another thought.....since your mother is so low in weight she would probably respond to a lower dosage of Entocort. Usual starting dose of Entocort is 3 pills and then dose tapers down. Since your mother is so low in weight I'm wondering if a starting dose of 2 pills then down to 1 pill if she responds and/or has side effects. If a 160 pound person gets 3 pills this seems way too much for an 80 pound woman. I would run this by your pharmacist or physician.i.e. it is possible you could start her on two pills then if she responds move her down to 1 pill pretty quickly like in a week or two if she responds.
Here is the Astra Zeneca Entocort spec sheet which lists their side effects. http://www1.astrazeneca-us.com/pi/entocortec.pdf
Entocort has been used for awhile to treat MC. We've had a lot of members use Entocort. Most users respond to it. Most don't get side effects. I believe we hear more about side effects on the forum because we are on the internet. People with side effects are more likely to complain. People without side effects don't post.
I keep coming back to the 80 pound weight which seems extremely low. We tend to be naturalistic on the board and a lot of folks are in remission from diet alone but to be at 80 pounds with WD seems risky. Worst case you could try her on the meds and pull her off of it with a small taper if you need to get her off of it.
Brandy
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hi there,
Nothing much new to add, just wanted to say hi, and agree with the advice given above...
I would avoid things like the ensure and stick with non dairy, non gluten and non soy meals
Highly recommend home made, well cooked Soups and stews, they are low inflammation, easy to digest. Cook big batch and freeze in meal portions. Good serves of animal protein is more helpful.
If you can make these using a base of home made bone broth, it will packed full of gut healing nutrients. Better than any commerical product.
The other key area is Vit D3, have her levels been checked?. Good levels of Vit D3 are essential...
Nothing much new to add, just wanted to say hi, and agree with the advice given above...
I would avoid things like the ensure and stick with non dairy, non gluten and non soy meals
Highly recommend home made, well cooked Soups and stews, they are low inflammation, easy to digest. Cook big batch and freeze in meal portions. Good serves of animal protein is more helpful.
If you can make these using a base of home made bone broth, it will packed full of gut healing nutrients. Better than any commerical product.
The other key area is Vit D3, have her levels been checked?. Good levels of Vit D3 are essential...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks so much for all this information. I have ordered the book and am anxious for it to arrive.
She was taking the Welchol solely for the MC. I stopped it yesterday. I picked up the Entocort this morning and I like the suggestion of starting her on a lower dose. Her Dr. prescribed the 3 a day for 60 days. I only picked up half of the prescription though because of the cost! I will see how she does today. So far she has had 2 BM with WD. This is way down than before. I will keep her on the pepto bismal and immodium as she had no BM's after lunch yesterday until this morning.
She did have some canned peaches this morning so I am wondering if that affected her stomach? I thought I had read somewhere that peaches and applesauce were ok?
Again, thanks to all for the support. I will have to find out about the Vitamin D levels!
She was taking the Welchol solely for the MC. I stopped it yesterday. I picked up the Entocort this morning and I like the suggestion of starting her on a lower dose. Her Dr. prescribed the 3 a day for 60 days. I only picked up half of the prescription though because of the cost! I will see how she does today. So far she has had 2 BM with WD. This is way down than before. I will keep her on the pepto bismal and immodium as she had no BM's after lunch yesterday until this morning.
She did have some canned peaches this morning so I am wondering if that affected her stomach? I thought I had read somewhere that peaches and applesauce were ok?
Again, thanks to all for the support. I will have to find out about the Vitamin D levels!
Hi,
Most fruits are full of sugar that our guts tend to reject in the early stages. Pears may be ok in small portions, and a banana maybe.
Like Gabes suggested Home made bone broth (turning it into a soup or stew is ideal). I use Cornish Hen (cooked and meat set aside in the fridge) and then I crockpot the bones for at least 6 hours. I use all the broth minus the bones and add Gluten free noodles to it and cook the noodles, then I add over cooked carrot and celery (steamed) and season it with sea salt (pepper may be too harsh on the gut right now too). I portion this huge soup into freezer containers and I eat it every day for lunch (very good indeed).
Bland is the key to getting MC under control (as depressing as it sounds) but it is so worth the results once given the gut some time to heal.
Cheers
Erica
Most fruits are full of sugar that our guts tend to reject in the early stages. Pears may be ok in small portions, and a banana maybe.
Like Gabes suggested Home made bone broth (turning it into a soup or stew is ideal). I use Cornish Hen (cooked and meat set aside in the fridge) and then I crockpot the bones for at least 6 hours. I use all the broth minus the bones and add Gluten free noodles to it and cook the noodles, then I add over cooked carrot and celery (steamed) and season it with sea salt (pepper may be too harsh on the gut right now too). I portion this huge soup into freezer containers and I eat it every day for lunch (very good indeed).
Bland is the key to getting MC under control (as depressing as it sounds) but it is so worth the results once given the gut some time to heal.
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Hi,
Regarding bone broth.
Yesterday I discovered that my butcher had marrow bones (is that the correct word for it in English?) and ox tales, so I bought regular bones, ox tales and marrow bones and put them in a big saucepan. Add water so it just covers the bones, no salt or pepper, just water.
I let it simmer (not cook violently) for 24 hours, set it to cool and put it into small boxes.
When I take out a box from the freezer, I cook the vegetables at a side, put in salt and pepper and maybe som herbs, and finally add the bone broth.
I heat it on the oven, not in a microwave after I read somewhere that microwave heating depletes nutrients in our food (I don't know if that's correct, but I like to be on the safe side).
Lilia
Regarding bone broth.
Yesterday I discovered that my butcher had marrow bones (is that the correct word for it in English?) and ox tales, so I bought regular bones, ox tales and marrow bones and put them in a big saucepan. Add water so it just covers the bones, no salt or pepper, just water.
I let it simmer (not cook violently) for 24 hours, set it to cool and put it into small boxes.
When I take out a box from the freezer, I cook the vegetables at a side, put in salt and pepper and maybe som herbs, and finally add the bone broth.
I heat it on the oven, not in a microwave after I read somewhere that microwave heating depletes nutrients in our food (I don't know if that's correct, but I like to be on the safe side).
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013