Hi all,
This forum has been a life-saver for me as I have been completely overwhelmed by a flare-up of my MC (lymphoctic) for three months, and have reached a point close to despair. I can have 15 or so bowel movements a day . . . the typical battery-acid, one-after-the-other D symptoms, and a tummy that sounds like a broken washing-machine. Without doubt, stress plays a major role in my symptoms.
Brief history: diagnosed many years ago with Addison's disease (auto-immune failure of adrenals, treated by oral corticosteroids), then Celiacs three years ago, and when that didn't get any better going GF (actually got worse, if anything), MC. I have never completely normalized, but, after a year of terrible suffering, got generally better, what might be called a year or more's remission with occasional bad weeks . . . until this summer.
I have only ever been told by my consultant to take pepto-bismol (no guidance on how much, or for how long); after much suffering, this seemed to work, with only occasional "top ups" needed (no mention at all of Entocort or other alternatives as specified on this forum). He says there is no other treatment available.
I used to think that I had "mild" MC as per diagnosis . . . I now realize this is rubbish. This summer has been terrible. I have, on and off, been taking up to 12 or more pepto bismols and 7 imodiums a day at times to little avail.
So, since reading this forum, I have, from yesterday, given up dairy (milk) while sticking to no more than 8 peptos a day, until I feel I can reduce them. I am also, reluctantly after years of brain-washing and personal habits, cutting down on fiber--eating apples without skin etc and eating white rice rather than brown etc (I normally eat a LOT of fiber, and a LOT of grain).
It might be working! I do feel better much today (no diarrhea, only a little gurgling) and more hopeful, but I wonder about yoghurt and butter (my consultant says that is okay, but is it? Should I chuck all my yoghurt away?)
My main question is this: is there any problem in taking pepto-bismol for longer than 8 weeks? It doesn't seem to be hurting me, and, since I have gone more-or-less dairy free and low fiber, it might be helping?
Can the efficacy of pepto-bismol wear off . . . I ask this because, in the past, it has been a go-to medication for those days when I have bad symptoms and a little seems to have gone a long way for me--I don't want to lose its support?
What if I taper my pepto-bismol down if I get better and take it occasionally as needed?
What about imodium? Is there a problem in taking this long-term?
My consultant has offered to give me another colonoscopy if things don't get better, but I am reluctant . . . what good would it do? Can it cause damage? I do have a lingering fear of another condition such as ulcerative colitis or Crohns, but, from reading this forum, my symptoms are 100% MC (watery diarrhea).
Thanks for being there . . . this forum has offered me real comfort.
Newbie questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Welcome to the forum.
I cannot give you definitive information on pepto and immodium so I leave that to people who are more familiar with medications. I can tell you that eliminating dairy means eliminating everything with even a trace of casein, the primary protein in dairy products. This would include yogurt and butter as well as all cheeses and any product or supplement that contained any ingredient derived from dairy. There are many. For me getting better was so much more important than eating any single product that although I used to make homemade yogurt every week, and I do miss it, I don't miss it enough to risk spending my life in the bathroom. Same goes for butter. I used to use pastured butter but no more. You will find that life can go on quite satisfactorily without dairy products even if you find this hard to believe at the moment.
Many people here find that they also have to eliminate soy from their diet. Soy also is included in many products so label reading becomes essential. The safest way to eat when you are trying to avoid gluten, dairy and soy is to stick to single ingredient foods rather than processed foods with long ingredient lists.
Fruits are problematic for many people, especially raw fruit. The high fructose content as well as the fiber is what causes the trouble. Peeled and well-cooked is the general rule for all fruits and vegetables The peeling and cooking makes the fiber more digestible but the fructose content of fruit would still be there causing problems and often there are some vegetable that still can't be eaten.
Another possibly problematic food is eggs and many here have to eliminate them both in their whole form or as an ingredient added to foods.
Figuring out what is causing problems for you takes time and healing or even a significant reduction in symptoms is not always immediate. You have to be diligent and relentless. It may sound like a daunting task but the rewards are great. You are certainly on the right track.
I too was faced with the decision to pursue another colonoscopy or simply try the diet. I went with trying the diet and it has been very successful. I could not see how a colonoscopy would provide me with any information that would change what I planned to do since dietary change seemed to be the only real option. I have not regretted that decision.
Jean
I cannot give you definitive information on pepto and immodium so I leave that to people who are more familiar with medications. I can tell you that eliminating dairy means eliminating everything with even a trace of casein, the primary protein in dairy products. This would include yogurt and butter as well as all cheeses and any product or supplement that contained any ingredient derived from dairy. There are many. For me getting better was so much more important than eating any single product that although I used to make homemade yogurt every week, and I do miss it, I don't miss it enough to risk spending my life in the bathroom. Same goes for butter. I used to use pastured butter but no more. You will find that life can go on quite satisfactorily without dairy products even if you find this hard to believe at the moment.
Many people here find that they also have to eliminate soy from their diet. Soy also is included in many products so label reading becomes essential. The safest way to eat when you are trying to avoid gluten, dairy and soy is to stick to single ingredient foods rather than processed foods with long ingredient lists.
Fruits are problematic for many people, especially raw fruit. The high fructose content as well as the fiber is what causes the trouble. Peeled and well-cooked is the general rule for all fruits and vegetables The peeling and cooking makes the fiber more digestible but the fructose content of fruit would still be there causing problems and often there are some vegetable that still can't be eaten.
Another possibly problematic food is eggs and many here have to eliminate them both in their whole form or as an ingredient added to foods.
Figuring out what is causing problems for you takes time and healing or even a significant reduction in symptoms is not always immediate. You have to be diligent and relentless. It may sound like a daunting task but the rewards are great. You are certainly on the right track.
I too was faced with the decision to pursue another colonoscopy or simply try the diet. I went with trying the diet and it has been very successful. I could not see how a colonoscopy would provide me with any information that would change what I planned to do since dietary change seemed to be the only real option. I have not regretted that decision.
Jean
Welcome! You have found the right place to get on the road to feeling well again.
I agree with all of Jean's comments. You have to watch every single thing you eat, and the simpler your diet, the better. Everyone's food tolerances are a bit different. Gluten, dairy, soy and eggs are the most common. I found I turned a corner when I gave up all grains as well. Until you begin healing, fiber is not your friend, and sugar also can cause problems.
A diary listing what you eat each day along with BM's and how you feel each day helps a lot, especially when you are trying to figure out what foods cause problems.
Read as much as you can here. There is so much to learn! Hope you start feeling better soon.
Jean
I agree with all of Jean's comments. You have to watch every single thing you eat, and the simpler your diet, the better. Everyone's food tolerances are a bit different. Gluten, dairy, soy and eggs are the most common. I found I turned a corner when I gave up all grains as well. Until you begin healing, fiber is not your friend, and sugar also can cause problems.
A diary listing what you eat each day along with BM's and how you feel each day helps a lot, especially when you are trying to figure out what foods cause problems.
Read as much as you can here. There is so much to learn! Hope you start feeling better soon.
Jean
"The only way to keep your health is to eat what you don't want, drink what you don't like, and do what you'd rather not." Mark Twain
Jean
I think I may have to give up grains. What do you eat for breakfast? All the meat is going to send my cholesterol through the roof and my doc will want to put me back on a statin drug. 
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Pebbledash,
I did not do the pepto routine. But, I agree with Jean....you probably have to take out soy, all dairy, all gluten (it's hidden everywhere), & eggs to start with. Fruits and veggies that are raw, and most fiber sources have to go, too. Do you know what your safe foods were when you were in remission?
There is a lab that helps define exactly what you are reacting to (they test 11 common foods, as well as gluten soy, dairy & eggs) called Enterolab. Their tests helped me cut out foods I thought were safe, like rice and chicken, but were not!
Joan,
Can you eat almond flour? You can bake muffins, make waffles or pancakes with any nut flour, if you tolerate nuts.
I did not do the pepto routine. But, I agree with Jean....you probably have to take out soy, all dairy, all gluten (it's hidden everywhere), & eggs to start with. Fruits and veggies that are raw, and most fiber sources have to go, too. Do you know what your safe foods were when you were in remission?
There is a lab that helps define exactly what you are reacting to (they test 11 common foods, as well as gluten soy, dairy & eggs) called Enterolab. Their tests helped me cut out foods I thought were safe, like rice and chicken, but were not!
Joan,
Can you eat almond flour? You can bake muffins, make waffles or pancakes with any nut flour, if you tolerate nuts.
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
Hi Pebbledash,
Welcome to our internet family. I agree with the suggestions made by both Jeans and Linda, especially concerning dairy products. Battery acid D is a uniquely typical response to dairy products for anyone who has a casein sensitivity.
As long as you do not have limited liver or kidney function, and your liver and kidneys are performing normally, you should have no problem eliminating excess bismuth subsalicylate from your body. There is no reason to suspect that the long-term use of bismuth subsalicylate will lead to either liver or kidney damage — however, if either liver function or kidney function should become impaired, for any reason, bismuth subsalicylate can build up to toxic levels within a matter of weeks.
In general, it's prudent to take no more than is needed (but that rule applies to any and all medications), but as long as you are alert and aware of liver/kidney limitations, you should be fine.
Based on the experiences of many, many users of Imodium, it seems to be safe and continues to be effective for most people, even on a long-term (occasional use) basis.
Your GI consultant is clearly out of his league when it comes to understanding and treating MC/LC. He is clearly knowledge-challenged, particularly concerning treatment options that are available for the disease. If you want to try Entocort EC, you will need to locate a more knowledgeable specialist who is willing to prescribe it. There is a possibility that your PCP would write a prescription for you, based on your diagnosis, but it's unusual to find a GP who is knowledgeable enough about Entocort EC to feel comfortable in writing a prescription, when the patient's GI specialist has failed to do so previously.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. I agree with the suggestions made by both Jeans and Linda, especially concerning dairy products. Battery acid D is a uniquely typical response to dairy products for anyone who has a casein sensitivity.
As long as you do not have limited liver or kidney function, and your liver and kidneys are performing normally, you should have no problem eliminating excess bismuth subsalicylate from your body. There is no reason to suspect that the long-term use of bismuth subsalicylate will lead to either liver or kidney damage — however, if either liver function or kidney function should become impaired, for any reason, bismuth subsalicylate can build up to toxic levels within a matter of weeks.
In general, it's prudent to take no more than is needed (but that rule applies to any and all medications), but as long as you are alert and aware of liver/kidney limitations, you should be fine.
Based on the experiences of many, many users of Imodium, it seems to be safe and continues to be effective for most people, even on a long-term (occasional use) basis.
Your GI consultant is clearly out of his league when it comes to understanding and treating MC/LC. He is clearly knowledge-challenged, particularly concerning treatment options that are available for the disease. If you want to try Entocort EC, you will need to locate a more knowledgeable specialist who is willing to prescribe it. There is a possibility that your PCP would write a prescription for you, based on your diagnosis, but it's unusual to find a GP who is knowledgeable enough about Entocort EC to feel comfortable in writing a prescription, when the patient's GI specialist has failed to do so previously.
Again, welcome aboard, and please feel free to ask anything.
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.
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Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
Thanks so much to you all for your swift replies, which I am still taking in . . . so I might have more questions in due course!
For the most part, they confirm what I have already read on the forum, as well as my own intuitions.
One thing: one of my ears started ringing yesterday, just for a very few seconds, on two occasions, not unlike the kind of ringing that can occur normally; however, I think I will try to taper down the use of pepto-bismol over the next few days if my body lets me--I have been using it for two or so months now.
For the most part, they confirm what I have already read on the forum, as well as my own intuitions.
One thing: one of my ears started ringing yesterday, just for a very few seconds, on two occasions, not unlike the kind of ringing that can occur normally; however, I think I will try to taper down the use of pepto-bismol over the next few days if my body lets me--I have been using it for two or so months now.
Yes, tinnitus is a definite risk associated with bismuth subsalicylate. Be careful, because sometimes the symptom is reversible, and sometimes it is not.
Tex
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.
-
Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
Hi Pebbledash,
I would take a careful look at the grains you are consuming. I have a celiac gene and extreme gluten intolerance, and I'm finding fewer and fewer grains that agree with me. I learned through celiac cross-reactivity testing that I was sensitive to sesame seeds, buckwheat and amaranth. I also seem to react to several brands of corn chips, namely the non-organic ones made with GMO corn. Finally, I thought sorghum was my friend, but I think I got a cross-contaminated batch of Bob's Red Mill Sorghum, and it caused me and my hubby gluten symptoms. I also enjoy Food for Life snickerdoodle cookies as a treat...but I notice a little stomach ache every time I eat one. I seem OK with rice and GF oats, but I try to eat them sparingly. Tapioca seems OK too, although it's not a grain.
I agree with the others that cutting dairy and soy are most important at this stage.
I would take a careful look at the grains you are consuming. I have a celiac gene and extreme gluten intolerance, and I'm finding fewer and fewer grains that agree with me. I learned through celiac cross-reactivity testing that I was sensitive to sesame seeds, buckwheat and amaranth. I also seem to react to several brands of corn chips, namely the non-organic ones made with GMO corn. Finally, I thought sorghum was my friend, but I think I got a cross-contaminated batch of Bob's Red Mill Sorghum, and it caused me and my hubby gluten symptoms. I also enjoy Food for Life snickerdoodle cookies as a treat...but I notice a little stomach ache every time I eat one. I seem OK with rice and GF oats, but I try to eat them sparingly. Tapioca seems OK too, although it's not a grain.
I agree with the others that cutting dairy and soy are most important at this stage.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Pepto doesn't impose any known withdrawal risks (certainly nothing on the same scale as corticosteroids), so it can be safely discontinued in any fashion desired. That said, our body usually does better when it isn't faced with any sudden stressful events, and abruptly changing any oral inputs (such as sudden diet changes, supplements, or sudden medication changes) can lead to chemically-driven physical stress, especially when our body is already stressed by inflammation. Therefore, IMO, while it isn't essential, making all such changes gradually is probably beneficial, in the sense that it is less likely to upset the apple cart when the applecart is already unstable.Pebbledash wrote:One question: if the new diet (low fiber, little to no dairy) relieves my symptoms, do I cut out the pepto-bismol completely, or is it advisable to taper it off, say to move to half the dose (eg from 8 to 4 tablets to 2) over a few days?
That's just my opinion, and as far as I'm aware, it has never been verified by medical research.
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.
-
Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
Yes, as I work through a new diet, my plan is to lower the number of cereals. I have stopped brown rice and now, for the first time in years, only eat white. Most mornings I have oats for breakfast, but I will proceed with caution. Incidentally, at the start of the summer (when my flare-up started) I discovered Bob's Red Mill GF muesli, and was delighted; but now I wonder about all those grains/seeds.Zizzle wrote:Hi Pebbledash,
I would take a careful look at the grains you are consuming. I have a celiac gene and extreme gluten intolerance, and I'm finding fewer and fewer grains that agree with me. I learned through celiac cross-reactivity testing that I was sensitive to sesame seeds, buckwheat and amaranth. I also seem to react to several brands of corn chips, namely the non-organic ones made with GMO corn. Finally, I thought sorghum was my friend, but I think I got a cross-contaminated batch of Bob's Red Mill Sorghum, and it caused me and my hubby gluten symptoms. I also enjoy Food for Life snickerdoodle cookies as a treat...but I notice a little stomach ache every time I eat one. I seem OK with rice and GF oats, but I try to eat them sparingly. Tapioca seems OK too, although it's not a grain.
I agree with the others that cutting dairy and soy are most important at this stage.
Talking again of fiber, I ate an apple yesterday for the first time without the skin, and, looking at the left-over peel, I was shocked at how thick and tough it looked, like old leather (plus wax)--I am pretty sure my tummy doesn't appreciate it.
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Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
Oats are a relatively high risk food. Not only are a lot of oat products cross-contaminated with wheat gluten, but many of us here (myself included) react to oats that are certified to be pure. IOW, we react to the avenin in oats. Avenin is the storage protein in oats that is the equivalent of gluten in wheat.Pebbledash wrote:Most mornings I have oats for breakfast, but I will proceed with caution.
Oats are also a high-fiber food.
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.
-
Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
This isn't easy. I have had a day of feeling much better--my tummy seemed to be relatively at peace (albeit supported by pepto-bismol), only two BMs, mainly firm--followed by the return of cramps and watery diarrhea again today.
Some further questions, if someone could be so kind:
1. How long can one reasonably respect for the digestive tract to heal? Does it take months, normally? (I have been having this relapse for about two to three months so far--is that normal?)
2. I have had some stool and blood test results back. I presume that "increased eosinophils" is associated with MC, and that C reactive protein outside the normal range merely indicates the obvious inflammation?
Thank you
Some further questions, if someone could be so kind:
1. How long can one reasonably respect for the digestive tract to heal? Does it take months, normally? (I have been having this relapse for about two to three months so far--is that normal?)
2. I have had some stool and blood test results back. I presume that "increased eosinophils" is associated with MC, and that C reactive protein outside the normal range merely indicates the obvious inflammation?
Thank you