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Ren
medicines
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
medicines
what is everyone on and does it work for you? i am on reglin andsulfasalazine and several others.. dont seem to work on some weeks ugg.. i was at work alone(which usually never happens) well of course i had a close relationship to the restroom..i am getting sick of this disease.. thanks for letting me vent its been a long day
Ren
Ren
Hi Ren,
Sorry to hear your frustration, and we all have been there.
I remember having to actually quit my job, and then it seemed that I was a prisoner in my own home .
So afraid to go anywhere, in fear of having an accident.
As far as meds, I take Entocort EC and I also eliminated, gluten, all dairy from my diet.
I was one of the lucky ones to have the Entocort kick in within 12 days of starting it.
The initial dose is 3-3mgs in the morning.
I have 1 BM a day and it is formed.
I'm not familiar with what you are taking so hopefully, another member will be along that has experience with the meds you are on.
Things will get better. Just keep asking questions.
We're pulling for you.
Dee~~~
Sorry to hear your frustration, and we all have been there.
I remember having to actually quit my job, and then it seemed that I was a prisoner in my own home .
So afraid to go anywhere, in fear of having an accident.
As far as meds, I take Entocort EC and I also eliminated, gluten, all dairy from my diet.
I was one of the lucky ones to have the Entocort kick in within 12 days of starting it.
The initial dose is 3-3mgs in the morning.
I have 1 BM a day and it is formed.
I'm not familiar with what you are taking so hopefully, another member will be along that has experience with the meds you are on.
Things will get better. Just keep asking questions.
We're pulling for you.
Dee~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
I am not on any medicines. The only one I ever took for my LC was Welchol. I am "controlling" this disease with diet only. I am not eating gluten, casein (dairy), and soy and a lot of fruits and veggies. I hope that will all change soon when I reach remission. I am praying for no more intolerances.
I learned about the diet option right here on this forum. I was backwards. I found Enterolab first and went searching the www to see if it was legit. After finding the other, now defunct site, I found Tex and the PP. The greatest find I ever made.
I think we all have gone through what you are going through. Hang in here and read and ask questions. I'm pretty certain you will find more help and support here than from your doctor.
I learned about the diet option right here on this forum. I was backwards. I found Enterolab first and went searching the www to see if it was legit. After finding the other, now defunct site, I found Tex and the PP. The greatest find I ever made.
I think we all have gone through what you are going through. Hang in here and read and ask questions. I'm pretty certain you will find more help and support here than from your doctor.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
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barbaranoela
- Emperor Penguin
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hi Ren----been in your shoes as most of us have--
Knew every bathroom---and always had my friend DEPENDS on me---a little security--
The only thing that worked for me was Colazal ---and I was maintained on that for about 3 years--OH and I did have to go on Pred. for a bit cus I was like living on the bowl!!!
Yup--know how U feel---people dont understand how destroying this disease is--
Hang in---vent anytime---we are each others *shoulders*
Barbara
Knew every bathroom---and always had my friend DEPENDS on me---a little security--
The only thing that worked for me was Colazal ---and I was maintained on that for about 3 years--OH and I did have to go on Pred. for a bit cus I was like living on the bowl!!!
Yup--know how U feel---people dont understand how destroying this disease is--
Hang in---vent anytime---we are each others *shoulders*
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Hi Ren 
,
I am taking Entocort, 1x/day. It took 3-4 weeks for the 3x/day regimen to work. Shortly after I found this site, I went gluten-free. Then I had the Enterolab testing, http://www.enterolab.com and found I was also intolerant to soy, casein (dairy), eggs and yeast.
Most of us find that we need to be gluten-free in order to alleviate our symptoms. In addition, many of us also have to eliminate dairy. Soy is also a common problem. I would suggest that you maintain a food diary which not only lists all food that you eat, but also your elimination times and types. Hopefully, you will begin to see a pattern between what you eat and when you have problems.
Some here use diet alone, some use medications alone and others use a combination of both. We are here to help you - we've been where you are and we know how frustrating this disease is. Don't be embarrassed to ask questions.
Gloria
,I am taking Entocort, 1x/day. It took 3-4 weeks for the 3x/day regimen to work. Shortly after I found this site, I went gluten-free. Then I had the Enterolab testing, http://www.enterolab.com and found I was also intolerant to soy, casein (dairy), eggs and yeast.
Most of us find that we need to be gluten-free in order to alleviate our symptoms. In addition, many of us also have to eliminate dairy. Soy is also a common problem. I would suggest that you maintain a food diary which not only lists all food that you eat, but also your elimination times and types. Hopefully, you will begin to see a pattern between what you eat and when you have problems.
Some here use diet alone, some use medications alone and others use a combination of both. We are here to help you - we've been where you are and we know how frustrating this disease is. Don't be embarrassed to ask questions.
Gloria
You never know what you can do until you have to do it.
diary list
Angy,
Before my gut had plenty of time to heal, peanut butter, (or peanuts), gave me a bellyache, too - usually no D, just a bellyache. Almond butter did the same thing. Now, though, it doesn't bother me to eat either one.
Tex
Before my gut had plenty of time to heal, peanut butter, (or peanuts), gave me a bellyache, too - usually no D, just a bellyache. Almond butter did the same thing. Now, though, it doesn't bother me to eat either one.
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 eliminated all the foods listed to the left under the bluebonnet picture, and that took care of all of it. I was prescribed a bottle of Colazol, but didn't like the idea of taking something that might lead to more headaches which this type of medication may do.
(Prior to going gluten free, my migraines were almost constant anyway. Now that I'm off the gluten, I don't have headaches unless I mess up the timing of my hormone patch, eat something with msg or too much with nitrites/nitrates in it, get my sleep any more messed up that it already is as a 24 hr caregiver for my mom -- common triggers like that for people with migraines, anyway. Now, the migraines are extremely rare for which I'm thrilled!)
People like us not only have more permeable guts, we also have more permeable blood-brain barriers, thus the effects of gluten immune reaction chemicals, and food additives which "excite" the brain, etc. Our brains are closely related to our guts due to the way our bodies develop after the fertilized egg is implanted in our mother's wombs.
More than you wanted to know, I'm sure! Ha!
Yours, luce
(Prior to going gluten free, my migraines were almost constant anyway. Now that I'm off the gluten, I don't have headaches unless I mess up the timing of my hormone patch, eat something with msg or too much with nitrites/nitrates in it, get my sleep any more messed up that it already is as a 24 hr caregiver for my mom -- common triggers like that for people with migraines, anyway. Now, the migraines are extremely rare for which I'm thrilled!)
People like us not only have more permeable guts, we also have more permeable blood-brain barriers, thus the effects of gluten immune reaction chemicals, and food additives which "excite" the brain, etc. Our brains are closely related to our guts due to the way our bodies develop after the fertilized egg is implanted in our mother's wombs.
More than you wanted to know, I'm sure! Ha!
Yours, luce
Ren,
To add to what has already been said in this thread, statistically, all but a very few of us are gluten-sensitive, and as we continue to eat gluten, our gut accrues a lot of damage, over time. After we remove all gluten from out diet, it typically takes at least several months for the symptoms to stop, because our gut has to at least partially heal, before the symptoms will go away. It takes some of us longer, for example, it took me about a year and a half. Until our gut has a chance to heal, we will have D, and other symptoms, no matter what we eat. If we continue to eat the wrong foods, though, the D can go on virtually forever, because the gut never has a chance to heal.
Immodium is an opiate-based med, and therefore it works by slowing the motility, (the peristaltic pumping action), of the gut. Overuse can, in some cases, lead to impaction, (which is probably what your GI doc was referring to), but typically, impaction is only a problem for someone who continues to take it, when it's not really needed, IOW, when virtually all bowel movement ceases. It's not recommended to take Immodium every day, for long periods of time, but when taken as needed, most people seem to get very good results from it, without undue risk. It's very helpful on those days when we absolutely must get out in public, and we want to reduce the risk of having an "accident". Immodium does not correct the cause of the D, (the inflammation), it merely has a tranquilizing effect on the intestines. In order to "permanently" stop the D, we have to control the inflammation, either by diet, or by a med that will help to control the inflammation, or by a combination of diet and a med, as Gloria suggested.
Sulfasalazine is not a very effective treatment for MC, for most of us, and the Reglin that you are taking is for gastric reflux - it won't help to control the MC. How long have you been taking the sulfasalazine? If you've been taking it for several months, and you haven't seen any improvement in your symptoms, then it's probably time to ask your doc for a prescription for Entocort, (if you don't want to control your symptoms by diet alone). We have found that Entocort has a much better track record for stopping the inflammation that characterizes MC, especially in combination with the GF diet, for the most severe cases, that are unresponsive to other treatment methods.
Tex
To add to what has already been said in this thread, statistically, all but a very few of us are gluten-sensitive, and as we continue to eat gluten, our gut accrues a lot of damage, over time. After we remove all gluten from out diet, it typically takes at least several months for the symptoms to stop, because our gut has to at least partially heal, before the symptoms will go away. It takes some of us longer, for example, it took me about a year and a half. Until our gut has a chance to heal, we will have D, and other symptoms, no matter what we eat. If we continue to eat the wrong foods, though, the D can go on virtually forever, because the gut never has a chance to heal.
Immodium is an opiate-based med, and therefore it works by slowing the motility, (the peristaltic pumping action), of the gut. Overuse can, in some cases, lead to impaction, (which is probably what your GI doc was referring to), but typically, impaction is only a problem for someone who continues to take it, when it's not really needed, IOW, when virtually all bowel movement ceases. It's not recommended to take Immodium every day, for long periods of time, but when taken as needed, most people seem to get very good results from it, without undue risk. It's very helpful on those days when we absolutely must get out in public, and we want to reduce the risk of having an "accident". Immodium does not correct the cause of the D, (the inflammation), it merely has a tranquilizing effect on the intestines. In order to "permanently" stop the D, we have to control the inflammation, either by diet, or by a med that will help to control the inflammation, or by a combination of diet and a med, as Gloria suggested.
Sulfasalazine is not a very effective treatment for MC, for most of us, and the Reglin that you are taking is for gastric reflux - it won't help to control the MC. How long have you been taking the sulfasalazine? If you've been taking it for several months, and you haven't seen any improvement in your symptoms, then it's probably time to ask your doc for a prescription for Entocort, (if you don't want to control your symptoms by diet alone). We have found that Entocort has a much better track record for stopping the inflammation that characterizes MC, especially in combination with the GF diet, for the most severe cases, that are unresponsive to other treatment methods.
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, Tex for the Imodium info. I have been taking that instead of Pepto but not that frequently. At a party Sat. night, I ate some Chinese noodles in a piece of candy by mistake and had no problem, I imagine thanks to the Imodium.
A gal I know with Celiac Disease said she couldn't go for four days after she took it but I don't seem to have that problem.
A gal I know with Celiac Disease said she couldn't go for four days after she took it but I don't seem to have that problem.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
i have been on sulfasalzine for several months most the time it works but it is those days where it doesnt... I am on entocort it works so far been on it for 2 weeks now..the reglin is for my gastroparisis. i have been tested many times for gluten sensitivity so far i dont have it...with my stomach not workin i have acid build up which when it does empty i feel it in my bowels.the worst of it is the aches and pains from it
Ren,
If you were tested for gluten sensitivity by means of the classic celiac blood tests, please be aware that those test results will always be negative for us. Those tests only work if you have fully-developed celiac disease. Most of us are just as gluten-sensitive as most celiacs, but we always get a negative test result when using the blood tests.
The only accurate test for gluten sensitivity, for someone who doesn't have celiac disease, is the stool tests offered by Enterolab, in Dallas, TX. They are virtually 100% reliable for us, because they are so much more sensitive than the blood tests, and almost never give false results. IMO, the blood tests are obsolete technology, and should be replaced by the stool tests, because the blood tests are notorious for false negatives.
Gastroparesis, in addition to MC, can make life pretty unpleasant at times, I agree. Either one is bad enough, by itself.
Tex
If you were tested for gluten sensitivity by means of the classic celiac blood tests, please be aware that those test results will always be negative for us. Those tests only work if you have fully-developed celiac disease. Most of us are just as gluten-sensitive as most celiacs, but we always get a negative test result when using the blood tests.
The only accurate test for gluten sensitivity, for someone who doesn't have celiac disease, is the stool tests offered by Enterolab, in Dallas, TX. They are virtually 100% reliable for us, because they are so much more sensitive than the blood tests, and almost never give false results. IMO, the blood tests are obsolete technology, and should be replaced by the stool tests, because the blood tests are notorious for false negatives.
Gastroparesis, in addition to MC, can make life pretty unpleasant at times, I agree. Either one is bad enough, by itself.
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.