Hi All,
I'm new here--was diagnosed with Lymphocytic Colitis at the end of April, after a year-long battle with a hellish case of C. Diff (that I got after an emergency C-section and was exacerbated by antibiotics for mastitis).
My doctor put me on Asacol (3 pills, 2x/day), and told me it can take 6 weeks to start working. I've been on it nearly 6 weeks though, and it doesn't seem to be making much of a difference; I actually feel like i felt a bit better before the Asacol. We tried a week of a prednisone suppositories, but that didn't make much of a difference either. I'm wondering: if anyone had experiences with Asacol taking a long time to kick in? I told him I'd stay on it 8 weeks, and we'd check back in. Has anyone else been left with MC after C Diff on here?
I'm already dairy-free (and have been for the past year during the C Diff), but am contemplating going Gluten-Free too. I'm just a bit overwhelmed by that massive of a dietary change--especially since my gastro had me on a low-residue diet for the last few months, which is basically bread, bread, and more bread.
Any input/advice welcome!
Erika
How long for Asacol to kick in?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Erika,
Welcome aboard. Wow! You really did have a tough time with C. diff. It seems to be getting more difficult to control, as time goes on. A number of our members have had C. diff at one time or another, but I'm not aware that anyone here can pinpoint it as the initial cause of their MC, (though I may well be overlooking someone). However, C. diff, is definitely a well-known trigger for MC, as are many other items, including, (but not limited to), stopping smoking, NSAIDs, proton pump inhibitors, (and a few other meds), viruses, and other causes of enteritis, e. coli, (and other bacterial infections), and probably even antibiotics.
I've never taken Asacol, but hopefully others here who have, will offer their experiences. I believe that it can longer to work, for some people. Some of our members have found that they cannot tolerate Asacol, and/or it makes them feel worse, rather than better. We've speculated that the fact the Asacol contains lactose, as an ingredient, might possibly cause problems for some individuals, since most of us are usually lactose intolerant, while reacting, (due to enteritis interfering with the production of the lactase enzyme, in the small intestine), and many of us are casein intolerant, (lactose can contain casein). Why the manufacturers of many meds, choose to add inactive ingredients that cause reactions in patients who could benefit from their products, is something that never ceases to amaze me, but it is a somewhat common practice, especially in meds to treat IBDs.
Also, the fifth post in this previous thread contains a quote from an earlier post, explaining how the encapsulation of the various 5-ASA meds work. This probably explains why Asacol does not work for everyone, (IOW, because of a possible pH problem in the intestines):
http://www.perskyfarms.com/phpBB2/viewt ... t=eudragit
Hmmmmmm. A diet heavy on bread, could be problematic with MC. Many of us are very gluten sensitive, even though we are not celiacs, (IOW, we would not test positive to a celiac blood test, and we don't necessarily present with significant villous atrophy). Even so, we seem to be just as sensitive to gluten as celiacs, (or maybe even more so, in some cases). If you are gluten sensitive, there may not be a med available, that would allow you to achieve remission, while remaining on a diet that consists mostly of bread and other wheat-based foods. Some meds can mask the effects of small to moderate amounts of gluten, for some individuals, but we are all different, and we respond differently to various meds and trigger foods.
The only lab in this country that offers a test that will detect the type of gluten sensitivity that we have, is Enterolab, in Dallas. They offer stool tests, which are very sensitive, and very accurate, for detecting certain food intolerances, including gluten, casein, (cow's milk), soy, eggs, yeast, and a few other tests. Most GI docs in this country, however, are not up to speed on MC, and don't recognize the validity of stool testing, (nor do they even believe that diet can be used to control the symptoms of MC).
I hope you can gain some insight here, that will allow you to work out a treatment plan that will bring you to remission, and allow you to remain in remission, so that you can get your life back.
Again, welcome to our internet family. We consider ourselves a family, because no one truly understands MC, unless they have it.
Tex
Welcome aboard. Wow! You really did have a tough time with C. diff. It seems to be getting more difficult to control, as time goes on. A number of our members have had C. diff at one time or another, but I'm not aware that anyone here can pinpoint it as the initial cause of their MC, (though I may well be overlooking someone). However, C. diff, is definitely a well-known trigger for MC, as are many other items, including, (but not limited to), stopping smoking, NSAIDs, proton pump inhibitors, (and a few other meds), viruses, and other causes of enteritis, e. coli, (and other bacterial infections), and probably even antibiotics.
I've never taken Asacol, but hopefully others here who have, will offer their experiences. I believe that it can longer to work, for some people. Some of our members have found that they cannot tolerate Asacol, and/or it makes them feel worse, rather than better. We've speculated that the fact the Asacol contains lactose, as an ingredient, might possibly cause problems for some individuals, since most of us are usually lactose intolerant, while reacting, (due to enteritis interfering with the production of the lactase enzyme, in the small intestine), and many of us are casein intolerant, (lactose can contain casein). Why the manufacturers of many meds, choose to add inactive ingredients that cause reactions in patients who could benefit from their products, is something that never ceases to amaze me, but it is a somewhat common practice, especially in meds to treat IBDs.
Also, the fifth post in this previous thread contains a quote from an earlier post, explaining how the encapsulation of the various 5-ASA meds work. This probably explains why Asacol does not work for everyone, (IOW, because of a possible pH problem in the intestines):
http://www.perskyfarms.com/phpBB2/viewt ... t=eudragit
Hmmmmmm. A diet heavy on bread, could be problematic with MC. Many of us are very gluten sensitive, even though we are not celiacs, (IOW, we would not test positive to a celiac blood test, and we don't necessarily present with significant villous atrophy). Even so, we seem to be just as sensitive to gluten as celiacs, (or maybe even more so, in some cases). If you are gluten sensitive, there may not be a med available, that would allow you to achieve remission, while remaining on a diet that consists mostly of bread and other wheat-based foods. Some meds can mask the effects of small to moderate amounts of gluten, for some individuals, but we are all different, and we respond differently to various meds and trigger foods.
The only lab in this country that offers a test that will detect the type of gluten sensitivity that we have, is Enterolab, in Dallas. They offer stool tests, which are very sensitive, and very accurate, for detecting certain food intolerances, including gluten, casein, (cow's milk), soy, eggs, yeast, and a few other tests. Most GI docs in this country, however, are not up to speed on MC, and don't recognize the validity of stool testing, (nor do they even believe that diet can be used to control the symptoms of MC).
I hope you can gain some insight here, that will allow you to work out a treatment plan that will bring you to remission, and allow you to remain in remission, so that you can get your life back.
Again, welcome to our internet family. We consider ourselves a family, because no one truly understands MC, unless they have it.
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 take some time and reply to your post. I am only on this board occasionaly but I was diagnosed with LC 2 years ago. I took Asacol for 1 1/2 years. It did stop the cramping I had and slightly reduce the D but it never went away. It wasn't until I completely cut out wheat that my stomach went completely back to normal. I know it seems rough. I have been really fortunate thtahere in California there are all kinds of gluten free choices if you go to the health food stores. I am only 29 and work in an office so I choose foods that are convient. I have actually found frozen dinners that are gluten free. I have found that I can eat spelt bread even though it has gluten in it. That is my only relief because I love bread and pasta. I enjoy the rice pasta I have found also.
I was never diagnosed as a Celiac. My Doctor told me it isn't possible. When I told him that no wheat and my D is gone he said then keep doing that and that I didn't have to take the Asacol anymore.
It is at least worth a try. Try it for 2 or 3 weeks at least. If you don't see any improvement you can always go back. It can't hurt right?
I was never diagnosed as a Celiac. My Doctor told me it isn't possible. When I told him that no wheat and my D is gone he said then keep doing that and that I didn't have to take the Asacol anymore.
It is at least worth a try. Try it for 2 or 3 weeks at least. If you don't see any improvement you can always go back. It can't hurt right?
-
annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
Howdy, When I took Asacol, it took about 30 days to start working, but it did work. I didn't have any ill effects from it except for a minimal amount of hair loss that stopped after I quit taking asacol and went into remission. And it really only thinned but is better now.
Love Oma
Love Oma
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
I just started taking Asacol 2 weeks ago after being diagnosed with Lymphocytic Colitis. I also went from a mostly gluten free diet to an entirely gluten free diet. My diarrhea is down from 15-30 times a day (and night) to between 3-5 times. I still feel weak, bloated, and crampy, but the combination of diet and drugs has seemed to cut out 2/3 of my emergency bolts to the bathroom. I still have one cup of coffee in the morning and I'm wondering if I have to kick that too; it is my last refuge of my previous way of life and I'll be sad to see it go.
to the newbies and hi Jen.I was diagnosed with LC in June and had success by going GF. I rejected the drug choices (Entocort or Lialda) my doc gave me after I found this fantastic site.
I found out from EnteroLab on Friday that I also have a soy sensitivity which may explain my relapse.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Balkie,
Welcome to the board. It takes more time for some of us to respond to the diet, than it does for others, but persistence pays off. As Joan mentioned, many of us find that we have to cut certain other foods out of our diets, (at least until our gut has sufficient time to heal). For example, a high percentage of us are casein intolerant, and until our gut has a chance to heal, virtually all of us are lactose intolerant, so removing dairy from our diets usually helps. Soy is probably the third most common intolerance.
Concerning the coffee, most doctors recommend that MC patients should avoid caffeine, but as a group, we have found that it usually makes very little, (if any), difference, (unless of course, you are using dairy in your coffee, and you are dairy intolerant). IOW, coffee causes some people in the general population to need to promptly visit the bathroom after downing that morning cup, and if you are one of those people, you will still have that effect. For those who do not get that sort of stimulation from coffee, however, drinking it with MC shouldn't change that pattern. Most sugar substitutes tend to cause D, however, especially sorbitol and aspertame.
It sounds as though you are already making good progress.
Again, welcome to our online family.
Tex
Welcome to the board. It takes more time for some of us to respond to the diet, than it does for others, but persistence pays off. As Joan mentioned, many of us find that we have to cut certain other foods out of our diets, (at least until our gut has sufficient time to heal). For example, a high percentage of us are casein intolerant, and until our gut has a chance to heal, virtually all of us are lactose intolerant, so removing dairy from our diets usually helps. Soy is probably the third most common intolerance.
Concerning the coffee, most doctors recommend that MC patients should avoid caffeine, but as a group, we have found that it usually makes very little, (if any), difference, (unless of course, you are using dairy in your coffee, and you are dairy intolerant). IOW, coffee causes some people in the general population to need to promptly visit the bathroom after downing that morning cup, and if you are one of those people, you will still have that effect. For those who do not get that sort of stimulation from coffee, however, drinking it with MC shouldn't change that pattern. Most sugar substitutes tend to cause D, however, especially sorbitol and aspertame.
It sounds as though you are already making good progress.
Again, welcome to our online family.
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 just got my test results on soy back on Friday but I would guess so. 
I just found out here, check your vitamins for soy. DH had given me some of his in a plain pill bottle so I didn't have the ingredients list until I checked the real container.
I haven't changed my profile to add soy because it kicked me off the bbs the last time I made changes.
Check out www.enterolab.com as well as Dr. Fine's other sites. Don't listen to your doc if he/she poo poos (pun intended) it. Believe Tex and Polly and the other PP.
I just found out here, check your vitamins for soy. DH had given me some of his in a plain pill bottle so I didn't have the ingredients list until I checked the real container.I haven't changed my profile to add soy because it kicked me off the bbs the last time I made changes.
Check out www.enterolab.com as well as Dr. Fine's other sites. Don't listen to your doc if he/she poo poos (pun intended) it. Believe Tex and Polly and the other PP.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Everyone and newbies!
I took Asacol for 8 weeks after my initial diagnosis and saw no improvement so stopped it. Also tried Pepto Bismol, which I could not tolerate - even a single dose made me violently ill with nausea, vomiting, etc. My GI doc then suggested prednisone, which I did not want to take. Then hallelujah, I found this website and learned about the gluten connection.
I am controlled by diet alone; it took me almost 9 months of diet to see my first formed BM, probably becuase I turned out to have many intolerances in addition to gluten, and it took me a long time to figure them all out. But I did notice improvement during the 9 mos. with regard to frequency, urgency, bloating, etc.
Balkie, I read somewhere that 50% of those intolerant of gluten are also soy-sensitive.
For anyone overwhelmed about making huge dietary changes, it may be easier to go directly to the caveman diet - see Cordain's book on the "Paleo Diet". That way you don't have to read labels or learn about grain/ dairy/legume substitutions. This diet eliminates all grains and dairy. It may be the quickest way to achieve remission - then you can go ahead and add in things like alternative grains, beans, etc. one at a time to tease out your intolerances. It also may be the diet most compatible with those "hunter-gatherer" genes we seem to have.
Good luck and keep us posted.
Love,
Polly
newbies!I took Asacol for 8 weeks after my initial diagnosis and saw no improvement so stopped it. Also tried Pepto Bismol, which I could not tolerate - even a single dose made me violently ill with nausea, vomiting, etc. My GI doc then suggested prednisone, which I did not want to take. Then hallelujah, I found this website and learned about the gluten connection.
I am controlled by diet alone; it took me almost 9 months of diet to see my first formed BM, probably becuase I turned out to have many intolerances in addition to gluten, and it took me a long time to figure them all out. But I did notice improvement during the 9 mos. with regard to frequency, urgency, bloating, etc.
Balkie, I read somewhere that 50% of those intolerant of gluten are also soy-sensitive.
For anyone overwhelmed about making huge dietary changes, it may be easier to go directly to the caveman diet - see Cordain's book on the "Paleo Diet". That way you don't have to read labels or learn about grain/ dairy/legume substitutions. This diet eliminates all grains and dairy. It may be the quickest way to achieve remission - then you can go ahead and add in things like alternative grains, beans, etc. one at a time to tease out your intolerances. It also may be the diet most compatible with those "hunter-gatherer" genes we seem to have.
Good luck and keep us posted.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Erika,
I have been on asacol for about 8 weeks now. I dont see much difference. My GI upped my dose but I am not sure it will make a difference.
I think it may have helped with the cramping, but since the cramping and nausea are not as prevalent as the diarrhea it is hard to know if it is the asacol or just the normal cycle.
I am going to stay on asacol another month or so, I have no side effects so for me it is worth trying.
I have been on asacol for about 8 weeks now. I dont see much difference. My GI upped my dose but I am not sure it will make a difference.
I think it may have helped with the cramping, but since the cramping and nausea are not as prevalent as the diarrhea it is hard to know if it is the asacol or just the normal cycle.
I am going to stay on asacol another month or so, I have no side effects so for me it is worth trying.
Welcome Balkie and Erika 
!
I've never taken Asacol - I took Entocort to relieve my symptoms while I determined my food intolerances. The soy in my little vitamin E capsule was enough to give me a problem, even while I was taking Entocort. I tested positive for casien(dairy), but I seem to be able to eat (so far) a very tiny amount of cheese sprinkled on food. We are all different and you might find you have more a higher intolerance for some foods than others. It's better to avoid all of your suspected intolerances while you are still healing.
If you suspect you are intolerant to soy, be aware that it is used as an additive in many, many foods. Some examples are tuna packed in water (the water is actually soy-based broth), chocolate (as soy lethicin), soups, and the list goes on. Be sure to look at the comprehensive lists of food additives here:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
Good luck on your path to remission. Don't hesitate to ask questions. We are here to help you in any way we can.
Gloria
!I've never taken Asacol - I took Entocort to relieve my symptoms while I determined my food intolerances. The soy in my little vitamin E capsule was enough to give me a problem, even while I was taking Entocort. I tested positive for casien(dairy), but I seem to be able to eat (so far) a very tiny amount of cheese sprinkled on food. We are all different and you might find you have more a higher intolerance for some foods than others. It's better to avoid all of your suspected intolerances while you are still healing.
If you suspect you are intolerant to soy, be aware that it is used as an additive in many, many foods. Some examples are tuna packed in water (the water is actually soy-based broth), chocolate (as soy lethicin), soups, and the list goes on. Be sure to look at the comprehensive lists of food additives here:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
Good luck on your path to remission. Don't hesitate to ask questions. We are here to help you in any way we can.
Gloria
You never know what you can do until you have to do it.
Hi Rika99
I have been taking asacole for 3-4 months. The dosage started at 3000mg a day 2 tabs 3 times daily...It has helped with the gnawing in my gut.
It didnt take that long for it to stop my gut aching though...about couple of weeks...
I have even missed some doses to see if there was a difference and i found that my achy gut came back.. So i reckon it is helping...However i am having some side effects with it...Rash on my body some headaches and dizzy at times...I discussed this with tex and he said im possibly allergic to it. Im going to give this another month now that my gi doc has reduced my dose to 2000mg day from the 27/9/08.
Its possible your doc has not put you on a strong enough dose to start. My doc said he would start with a high dose then slowly reduce it...I think you should have a chat with your doc... good luck!!!
I have been taking asacole for 3-4 months. The dosage started at 3000mg a day 2 tabs 3 times daily...It has helped with the gnawing in my gut.
It didnt take that long for it to stop my gut aching though...about couple of weeks...
I have even missed some doses to see if there was a difference and i found that my achy gut came back.. So i reckon it is helping...However i am having some side effects with it...Rash on my body some headaches and dizzy at times...I discussed this with tex and he said im possibly allergic to it. Im going to give this another month now that my gi doc has reduced my dose to 2000mg day from the 27/9/08.
Its possible your doc has not put you on a strong enough dose to start. My doc said he would start with a high dose then slowly reduce it...I think you should have a chat with your doc... good luck!!!
Angy ;)