Hi,
I was diagnosed with IBS about a year ago. My symptoms then were annoying, but tolerable.
Recently I have been experiencing an increase in symptoms. The most annoying being that I am experiencing watery D, which is not something I typically deal with. It has followed a pattern similar to this:
wake up in the morning with watery D. I go multiple times that day. sometimes it continues through the night and into the next day. (a couple times I have had to get up in the middle of the night to go to the bathroom. Not multiple trips, but even just going once gives me reason to worry since it's not something I've experienced before.) I usually take imodium when this happens. Then I seem to be ok for a week or so then the cycle starts all over again.
I'm worried that I may have microscopic colitis. I don't have blood when i go to the bathroom, haven't experienced a loss of weight or energy (but its only been going on for about a month) I don't have insurance to go and be evalulated. All these symptoms COULD be a flare up of my "IBS" but I'm just not sure.
Since I'm unable to go to the doctor, I was wondering what suggestions you have that I could try to resolve this? (Dietary changes, supplements, over the counter meds.) I have read that some people have good luck with pepto. Is this true? Has anyone been able to successfully manage or treat their MC with this? I'm so worried. Any suggestions or info would be much appreciated. I apologize for the lengthy post.
Help, no insurance
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
MAC. I'm so sorry for all your troubles. You have found the best place in the world for help and support.I'm pretty certain that some hospitals have to take anyone who comes into the emergency room. I hope you live in or near a big city.
Are there any free clinics?
Try going gluten free and see if that helps at all. Most, but not all of us, are intolerant of it.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
In addition to the information on this site here is a gluten primer.
http://www.webmd.com/diet/slideshow-gluten-free-diet
http://www.webmd.com/diet/slideshow-gluten-free-diet
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
I may have to resort going to the ER soon. However, there isn't much point since the tests used to diagnose these types of things cannot be performed in the ER, ya know?
I'm familar with the GF diet. Over the summer, I tried it for a couple of weeks just to see if it'd help my IBS since some people find relief. (I did not notice any difference. I was very careful, bought new cookware, only cooked whole foods, etc)
I cut out dairy a few weeks ago and thought I may have figured that out. However, despite my lack of dairy I woke up today with awful D and have already gone multiple times this morning.
I just wish I knew if this is just my IBS acting up or something else. I am worrying myself with all the "what if i have this" thoughts. Can anyone tell me about their symptoms and how their story of getting diagnosed? As well as the treatments/diets you're on and whether or not they help?
I thought the IBS diagnosis was bad now I'm so upset at the thought I could have something worse!
I'm familar with the GF diet. Over the summer, I tried it for a couple of weeks just to see if it'd help my IBS since some people find relief. (I did not notice any difference. I was very careful, bought new cookware, only cooked whole foods, etc)
I cut out dairy a few weeks ago and thought I may have figured that out. However, despite my lack of dairy I woke up today with awful D and have already gone multiple times this morning.
I just wish I knew if this is just my IBS acting up or something else. I am worrying myself with all the "what if i have this" thoughts. Can anyone tell me about their symptoms and how their story of getting diagnosed? As well as the treatments/diets you're on and whether or not they help?
I thought the IBS diagnosis was bad now I'm so upset at the thought I could have something worse!
Hi,
Welcome to our internet family. Of course, as you are well aware, a colonoscopy with biopsies is necessary for diagnosing MC, and you're right - the ER personnel will treat dehydration and severe electrolyte deficiencies, but they are not going to diagnose MC. As Joan mentioned, the free clinics in your area are certainly worth checking out, but since they are normally short-handed and underfunded, I suspect that they are probably especially overloaded in the current economy, and particularly, this time of year.
FWIW, I never had a diagnosis, either, due to my GI doc's failure to take biopsies during the colonoscopy exam. I had uncontrollable, watery D, with occasional "accidents", (an accident is a bowel movement that is beyond your control, and occurs before you can get to a bathroom). Back in those days, I wasn't aware of any medications for treating it, anyway, and since I didn't know what I had, in the first place, it was a moot point. I thought I was a celiac, so I cut out all traces of gluten, and started keeping a detailed food/reaction journal. To make a long story short, after a year and a half on the GF diet, with only limited improvement, I cut out all dairy, soy, corn, sugar, (except for the sugar that was naturally in foods), all fruits, all veggies, (except for potatoes, squash, and occasional broccoli and green beans). The only grain I ate was rice. I basically lived on pork, chicken, potatoes, rice, and the few veggies mentioned above, (veggies must always be very well cooked - overcooked, actually). I drank water, unsweetened tea, and an occasional Virgil's Root Beer - virtually all other drinks contain high-fructose corn syrup, or artificial sweeteners. Many/most of us react to artificial sweeteners, and even certain natural sweeteners, such as the sugar alcohols, (sorbitol, mannitol, etc. - sorbitol is found in many/most fruits). The fructose and sorbitol in fruits, are problematic for many of us, but it is the fiber in them, (especially in the peel), that causes the most problems for us. Be sure to avoid the peel on vegetables, also, since they are especially high in fiber. Even the fiber in brown rice is a problem for some of us, so if you eat rice, eat white rice. The only difference between white rice and brown rice, is that the hull on brown rice is removed, in order to create white rice. It is true that most of the nutrients are also in the hull, but white rice is usually "enriched", in order to replace those lost nutrients.
In less than two weeks after severely restricting my diet, I was in remission, (of course, I had already been on the GF diet for a year and a half, at that point. It takes a long time for the gut to heal from gluten damage, (virtually none of the GI docs realize how long it takes), so after almost two years on that diet, I found that I could begin to slowly reintroduce some of the foods that I had been avoiding, and now, I am able to eat most foods again, without problems, except for the ones listed under my avatar, (IOW, gluten sources, including oats).
Without a diagnosis, the diet is obviously your only treatment option, but that's OK, because it's the safest treatment, anyway. Many of us here are in remission, by diet alone. Drugs such as Entocort EC can help to bring remission faster that the diet alone, but the diet is the safest, most reliable way, to allow the gut to heal. The medications help to suppress the symptoms, but they will not completely heal the gut, the way the diet will. Of course, the catch is, for the diet to work, you have to eliminate all food intolerances, and all foods that tend to irritate the gut, (because the gut is hypersensitive, until the inflammation can be suppressed sufficiently for it to heal).
Avoid all sources of fiber, especially insoluble fiber - (docs recommend fiber for IBS, but it is most definitely contraindicated for MC), and avoid certain medications, such as NSAIDs, PPIs, SSRIs, etc., which have all been documented to not only trigger MC flares, but they can also cause the disease, in the first place.
Be sure you're drinking plenty of fluids, but they need to contain electrolytes, or you can quickly become depleted, if you are experiencing secretory diarrhea, (D). Secretory D is unique to the IBDs, and when it occurs, the colon is secreting water into the lumen, (the inside of the intestine), rather than removing water, the way that it is supposed to do, and that is why the BMs, (Bowel Movements), can be so frequent, and so voluminous. Pay particular attention to potassium intake, because it is almost always a problem with severe D. If you are able to eat bananas, they are a good source of potassium. If they bother you, you may have to try a potassium supplement. Also, your B vitamins can become depleted, because of the malabsorption problem that MC often causes. It's a good idea to take a sublingual form of B-12, with added foliac acid. Folic acid is necessary for the proper utilization of B-12, and the sublingual lozenges are designed to dissolve under the tongue, and go directly into the blood stream, thus bypassing the malabsorption problem in the small intestine. The body can store enough B-12 to last for a long time, but without sufficient B-12, you can develop anemia, and taking too much of it is not harmful.
Yes, you can get your life back, without a diagnosis, and without any meds, but it takes some patience, because it takes a while for the gut to heal, and it takes much longer for some of us to respond to the diet, than it does the more fortunate ones. Some see benefits from the diet, in a matter of weeks, some take months, and some of us take a year or more. We are all different in the way we react, and the way we heal. MC is a very complex disease - much more complex than most GI docs realize.
FWIW, IMO, there is no such thing as IBS. IBS is simply a default diagnosis that a doctor gives a patient, when he or she can't find anything else wrong with a patient. When a doctor diagnoses a patient with IBS, he or she is really saying, "I don't have the foggiest idea what is wrong with you". Virtually all cases of "IBS", are either undiagnosed gluten sensitivity, or undiagnosed MC, or both.
Please feel free to ask any questions, and again, welcome aboard.
Tex (Wayne)
Welcome to our internet family. Of course, as you are well aware, a colonoscopy with biopsies is necessary for diagnosing MC, and you're right - the ER personnel will treat dehydration and severe electrolyte deficiencies, but they are not going to diagnose MC. As Joan mentioned, the free clinics in your area are certainly worth checking out, but since they are normally short-handed and underfunded, I suspect that they are probably especially overloaded in the current economy, and particularly, this time of year.
FWIW, I never had a diagnosis, either, due to my GI doc's failure to take biopsies during the colonoscopy exam. I had uncontrollable, watery D, with occasional "accidents", (an accident is a bowel movement that is beyond your control, and occurs before you can get to a bathroom). Back in those days, I wasn't aware of any medications for treating it, anyway, and since I didn't know what I had, in the first place, it was a moot point. I thought I was a celiac, so I cut out all traces of gluten, and started keeping a detailed food/reaction journal. To make a long story short, after a year and a half on the GF diet, with only limited improvement, I cut out all dairy, soy, corn, sugar, (except for the sugar that was naturally in foods), all fruits, all veggies, (except for potatoes, squash, and occasional broccoli and green beans). The only grain I ate was rice. I basically lived on pork, chicken, potatoes, rice, and the few veggies mentioned above, (veggies must always be very well cooked - overcooked, actually). I drank water, unsweetened tea, and an occasional Virgil's Root Beer - virtually all other drinks contain high-fructose corn syrup, or artificial sweeteners. Many/most of us react to artificial sweeteners, and even certain natural sweeteners, such as the sugar alcohols, (sorbitol, mannitol, etc. - sorbitol is found in many/most fruits). The fructose and sorbitol in fruits, are problematic for many of us, but it is the fiber in them, (especially in the peel), that causes the most problems for us. Be sure to avoid the peel on vegetables, also, since they are especially high in fiber. Even the fiber in brown rice is a problem for some of us, so if you eat rice, eat white rice. The only difference between white rice and brown rice, is that the hull on brown rice is removed, in order to create white rice. It is true that most of the nutrients are also in the hull, but white rice is usually "enriched", in order to replace those lost nutrients.
In less than two weeks after severely restricting my diet, I was in remission, (of course, I had already been on the GF diet for a year and a half, at that point. It takes a long time for the gut to heal from gluten damage, (virtually none of the GI docs realize how long it takes), so after almost two years on that diet, I found that I could begin to slowly reintroduce some of the foods that I had been avoiding, and now, I am able to eat most foods again, without problems, except for the ones listed under my avatar, (IOW, gluten sources, including oats).
Without a diagnosis, the diet is obviously your only treatment option, but that's OK, because it's the safest treatment, anyway. Many of us here are in remission, by diet alone. Drugs such as Entocort EC can help to bring remission faster that the diet alone, but the diet is the safest, most reliable way, to allow the gut to heal. The medications help to suppress the symptoms, but they will not completely heal the gut, the way the diet will. Of course, the catch is, for the diet to work, you have to eliminate all food intolerances, and all foods that tend to irritate the gut, (because the gut is hypersensitive, until the inflammation can be suppressed sufficiently for it to heal).
Avoid all sources of fiber, especially insoluble fiber - (docs recommend fiber for IBS, but it is most definitely contraindicated for MC), and avoid certain medications, such as NSAIDs, PPIs, SSRIs, etc., which have all been documented to not only trigger MC flares, but they can also cause the disease, in the first place.
Be sure you're drinking plenty of fluids, but they need to contain electrolytes, or you can quickly become depleted, if you are experiencing secretory diarrhea, (D). Secretory D is unique to the IBDs, and when it occurs, the colon is secreting water into the lumen, (the inside of the intestine), rather than removing water, the way that it is supposed to do, and that is why the BMs, (Bowel Movements), can be so frequent, and so voluminous. Pay particular attention to potassium intake, because it is almost always a problem with severe D. If you are able to eat bananas, they are a good source of potassium. If they bother you, you may have to try a potassium supplement. Also, your B vitamins can become depleted, because of the malabsorption problem that MC often causes. It's a good idea to take a sublingual form of B-12, with added foliac acid. Folic acid is necessary for the proper utilization of B-12, and the sublingual lozenges are designed to dissolve under the tongue, and go directly into the blood stream, thus bypassing the malabsorption problem in the small intestine. The body can store enough B-12 to last for a long time, but without sufficient B-12, you can develop anemia, and taking too much of it is not harmful.
Yes, you can get your life back, without a diagnosis, and without any meds, but it takes some patience, because it takes a while for the gut to heal, and it takes much longer for some of us to respond to the diet, than it does the more fortunate ones. Some see benefits from the diet, in a matter of weeks, some take months, and some of us take a year or more. We are all different in the way we react, and the way we heal. MC is a very complex disease - much more complex than most GI docs realize.
FWIW, IMO, there is no such thing as IBS. IBS is simply a default diagnosis that a doctor gives a patient, when he or she can't find anything else wrong with a patient. When a doctor diagnoses a patient with IBS, he or she is really saying, "I don't have the foggiest idea what is wrong with you". Virtually all cases of "IBS", are either undiagnosed gluten sensitivity, or undiagnosed MC, or both.
Please feel free to ask any questions, and again, welcome aboard.
Tex (Wayne)
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.
Welcome!
I think you may need to have a colonoscopy and other tests, just to rule out a possible cancer. That's why you need to find a way to see a specialist -- GI, in other words. They won't know a thing about gf, etc. diets for treatment, but you really need to know for sure that it's M.C. that you have.
There are many other things that you could have that are causing this, even if you did have a good response to removal of the foods people like me tend to be sensitive to.
Please figure out a way to do this, even if you have to negotiate some sort of payment plan through whoever does your testing. Also, what about your community's public hospitals? Might want to discuss this with a social worker.
Best wishes to you.
Luce
I think you may need to have a colonoscopy and other tests, just to rule out a possible cancer. That's why you need to find a way to see a specialist -- GI, in other words. They won't know a thing about gf, etc. diets for treatment, but you really need to know for sure that it's M.C. that you have.
There are many other things that you could have that are causing this, even if you did have a good response to removal of the foods people like me tend to be sensitive to.
Please figure out a way to do this, even if you have to negotiate some sort of payment plan through whoever does your testing. Also, what about your community's public hospitals? Might want to discuss this with a social worker.
Best wishes to you.
Luce
Thanks for your help, everyone.
I know seeing a doctor and getting the proper tests is important..if I don't see any improvement within a few weeks, I will begin to look into my options in terms of hospitals. It really is just difficult for me. I'm a college student who is struggling financially the way it is. I'm also already in debt due to the students loans I must take out just to go to school.
As annoyed as I am with all of this beginning to happen, I'm glad it's happening over my holiday break from school. I'm worried that it won't be resolved by the beginning of Jan, and if that is the case I don't know how I will make it through school!! :(
I know seeing a doctor and getting the proper tests is important..if I don't see any improvement within a few weeks, I will begin to look into my options in terms of hospitals. It really is just difficult for me. I'm a college student who is struggling financially the way it is. I'm also already in debt due to the students loans I must take out just to go to school.
As annoyed as I am with all of this beginning to happen, I'm glad it's happening over my holiday break from school. I'm worried that it won't be resolved by the beginning of Jan, and if that is the case I don't know how I will make it through school!! :(
I'm someone who has been able to control my MC just with diet. I had the financial resources to get tested at Enterolab for food sensitivities, but you can always start by going gluten and dairy free, the two most common sensitivities that often go together. Also, some medications are often associated with MC. They are the NSAID's like aspirin and ibuprofin and the proton pump inhibitors for acid reflux, so if you are taking them you might want to stop or try alternatives.
You mention that you are a student, so should have access to the Student Health Services. I don't know what services they provide at your school, but at the schools I'm familiar with, including a Community College, you can see a doctor for either acute or chronic conditions. Perhaps there might be some financial help available for a diagnostic test like a colonoscopy. It's worth checking out.
Rosie
You mention that you are a student, so should have access to the Student Health Services. I don't know what services they provide at your school, but at the schools I'm familiar with, including a Community College, you can see a doctor for either acute or chronic conditions. Perhaps there might be some financial help available for a diagnostic test like a colonoscopy. It's worth checking out.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Dear Mac,
I understand your financial situation and know it is difficult making choices right now. If you aren't getting better you really need to see a Dr. and determine what is going on.
I also have to agree with Tex that there isn't a creature known as IBS. It's just a catch all diagnosis. I also agree that you should take as much fiber out of your diet as possible, at least temporarily. My GI told me to increase fiber to stop the D, but it just made it worse.
Since you cannot afford the tests and prescription drugs right now, please change your diet and take the immodium to help you as your gut starts to heal. The other thing that has helped several of us is a food/BM diary. It might help you see what might be setting you off. When I was at my worst, I could not eat any veggies unless they were cooked to mush. Most raw fruit was off limits for me. I did well on applesauce and canned peaches.
Good luck as you work through this. We are here for you.
Jan
I understand your financial situation and know it is difficult making choices right now. If you aren't getting better you really need to see a Dr. and determine what is going on.
I also have to agree with Tex that there isn't a creature known as IBS. It's just a catch all diagnosis. I also agree that you should take as much fiber out of your diet as possible, at least temporarily. My GI told me to increase fiber to stop the D, but it just made it worse.
Since you cannot afford the tests and prescription drugs right now, please change your diet and take the immodium to help you as your gut starts to heal. The other thing that has helped several of us is a food/BM diary. It might help you see what might be setting you off. When I was at my worst, I could not eat any veggies unless they were cooked to mush. Most raw fruit was off limits for me. I did well on applesauce and canned peaches.
Good luck as you work through this. We are here for you.
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
I'm not suggesting it's cancer.
http://coloncancer.about.com/od/screeni ... nsured.htm
http://coloncancer.about.com/od/screeni ... nsured.htm
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
wow, everyone is so helpful. Thanks!
I'm going to continue with the pepto for at least a couple of weeks. I'm also going to look into dietary changes. This is going to be hard since I am vegetarian. Eliminating soy and cutting back on my vegetables is going to be the hard part!
I'm hoping the pepto will resolve this. If not, I'll look into further testing.
I'm going to continue with the pepto for at least a couple of weeks. I'm also going to look into dietary changes. This is going to be hard since I am vegetarian. Eliminating soy and cutting back on my vegetables is going to be the hard part!
I'm hoping the pepto will resolve this. If not, I'll look into further testing.
Hi Mac,
Welcome! Due to multiple conditions, I have to stick to a low protein, low fat, low sugar, vegan diet and as you've probably read on this forum, some types of fibers can be a real issue for people with MC too. That doesn't leave much. Check out some of the veggie recipes in the paleo diet section. The main thing right now is that for now, make sure you peel fruits and veggies to get rid of the tough fibers and cook them well. Also, when it comes to rice, some of us have trouble with brown rice, but not white rice. For me, the one dish that is most soothing is well cooked carrots with a bit of ginger or cinnamon if I want a little spice. While trying to figure out triggers, keep the recipes simple. If you add spices - 1 at a time is best in case a certain spice is a trigger. Don't overdose on spices either. While ginger has been used to soothe the stomach, in excess, it can be irritating.
Karen
Welcome! Due to multiple conditions, I have to stick to a low protein, low fat, low sugar, vegan diet and as you've probably read on this forum, some types of fibers can be a real issue for people with MC too. That doesn't leave much. Check out some of the veggie recipes in the paleo diet section. The main thing right now is that for now, make sure you peel fruits and veggies to get rid of the tough fibers and cook them well. Also, when it comes to rice, some of us have trouble with brown rice, but not white rice. For me, the one dish that is most soothing is well cooked carrots with a bit of ginger or cinnamon if I want a little spice. While trying to figure out triggers, keep the recipes simple. If you add spices - 1 at a time is best in case a certain spice is a trigger. Don't overdose on spices either. While ginger has been used to soothe the stomach, in excess, it can be irritating.
Karen
Sorry, I forgot about the Pepto, in my previous post. Yes, the Pepto treatment will bring remission for most MC patients, provided that they are not allergic to it. Dr. Fine, (the founder of Enterolab), developed the Pepto treatment about 15 years ago. He no longer recommends it, because, a fair number of people cannot handle it, without developing neurological symptoms. As long as you do not react adversely, though, it is a safe treatment.
The proper way to use it, is to take 8 or 9 tablets, (or the liquid equivalent), per day, for 8 weeks. At that point, you should be in remission. It's not a good idea to take it for longer than 8 weeks, though, because of the risk of a toxic buildup of bismuth in the body, due to the high dosage rate. Here's the important, part, though: If the GF diet is not carefully followed during those 8 weeks, then a few weeks, (or less), after the Pepto treatment is ended, you will very likely relapse, and be right back where you started. A few lucky individuals are able to remain in remission without following the diet, but to date, we haven't encountered anyone who is that lucky. If the GF diet is faithfully followed, though, in combination with the Pepto treatment described here, there is a very good chance that you will thereafter be able to remain in remission, by means of the diet alone.
The bad news is that it is virtually impossible to get enough protein, on a vegan diet, without eating soy or other legumes, such as beans. Most of those who are soy intolerant, seem to also be intolerant to most other legumes, so you can see the problem. The is a 50-50 chance that you are not soy/legume intolerant, since about half of us are soy intolerant. I believe that a soy sensitivity test at Enterolab costs $99, but that test will remove all doubt.
If you're not soy/legume sensitive, then a vegan diet should be doable, so long as you limit the fiber, as several of us have suggested.
Tex
The proper way to use it, is to take 8 or 9 tablets, (or the liquid equivalent), per day, for 8 weeks. At that point, you should be in remission. It's not a good idea to take it for longer than 8 weeks, though, because of the risk of a toxic buildup of bismuth in the body, due to the high dosage rate. Here's the important, part, though: If the GF diet is not carefully followed during those 8 weeks, then a few weeks, (or less), after the Pepto treatment is ended, you will very likely relapse, and be right back where you started. A few lucky individuals are able to remain in remission without following the diet, but to date, we haven't encountered anyone who is that lucky. If the GF diet is faithfully followed, though, in combination with the Pepto treatment described here, there is a very good chance that you will thereafter be able to remain in remission, by means of the diet alone.
The bad news is that it is virtually impossible to get enough protein, on a vegan diet, without eating soy or other legumes, such as beans. Most of those who are soy intolerant, seem to also be intolerant to most other legumes, so you can see the problem. The is a 50-50 chance that you are not soy/legume intolerant, since about half of us are soy intolerant. I believe that a soy sensitivity test at Enterolab costs $99, but that test will remove all doubt.
If you're not soy/legume sensitive, then a vegan diet should be doable, so long as you limit the fiber, as several of us have suggested.
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.
Dear Mac
So sorry you are having to deal with all this, but be sure to know we will stay with you on your road to remission, however you get there. Tex has already given you the answer on Pepto. My GI told me to do just that (9 per day for two months). It worked about 80% of the time (I was not on any sort of diet then). When I started to reduce the dose the D came back with a vengeance. One other thing about Pepto, as you probably know, the stools will be black - but that is normal when you are taking it.
All the best, Ant
So sorry you are having to deal with all this, but be sure to know we will stay with you on your road to remission, however you get there. Tex has already given you the answer on Pepto. My GI told me to do just that (9 per day for two months). It worked about 80% of the time (I was not on any sort of diet then). When I started to reduce the dose the D came back with a vengeance. One other thing about Pepto, as you probably know, the stools will be black - but that is normal when you are taking it.All the best, Ant