Approximately How Often Do You Have MC Reactions?

Polls relevant to Microscopic Colitis, and related issues, can be posted here, to allow for the collection of data that might help to shed some light on this disease, and it's treatment options.

Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

About how often do you have reactions that are probably caused by MC?

Very often
37
42%
Several times a month
21
24%
Once or twice a month
11
12%
Once every few months
12
13%
Once or twice a year
4
4%
Once every few years
4
4%
 
Total votes: 89

Lucy
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Post by Lucy »

Have a new theory, Wayne:

I've never had a problem with lettuce or veggies in general throughout this whole illness, but now, I'm wondering if perhaps the steaks at that restaurant where we ate during the evacuation at their Fort Worth location aren't ok after all, and if it's not just the fact that I eat an inordinate amount of fiber when I eat there -- big dinner salad, and big sweet potato with the steak. Eat almost all of it hen we're NOT going straight home, knowing that it'll go to waste if I don't eat most of it, and I generally get to the point that I can't eat another bite! There's no other time when I'm full to the brim on salad like this. Do you suppose it's the roughage passing through in that large a quantity at one time, that's the problem with my functionally unpracticed healed/ing colon that makes me think I've actually gotten ahold of some contamination. It doesn't feel to good when that bigger-than-I'm-used-to, harder stool passes through, that's for sure, particularly when it makes that last right hand turn toward the rectum. That's what I feel and assume it's pressing against the diverticulum that's somewhere over there.

Same feeling occurs when I eat too many vegetables a couple of meals or days in a row -- can feel the pressure of too large a volume passing through.

When I feel best is when I spread out the amounts of fiber evenly, and in small portions eaten at both lunch and the evening meal. I need to be better at being sure to get soluble fiber to balance out the insoluble fiber -- think that works best for me.

Now, I'm trying to remember if perhaps I didn't stop off at the diner right after that dental cleaning nearby, and load up on veggies? Hmm! This amount usually doesn't make me feel too full the next day down in the gut, unless I've perhaps had a big veggie stir-fry the day before -- make any sense?

Bottom line, the fiber just seems to be very effective when it moves evenly through the colon instead of concentrated into big clumps.

Anyway, for today's experiment, went to the local restaurant here, and was impressed with the young man's smarts when I talked to him about what I could eat.

Mom and I went vegetarian at this meal by just having the big dinner salad (smallest they have), and the big sweet potato. Ate all of both, so now the experiment is to see if I feel the same WITHOUT getting the steak I usually eat with it. Problem with that is that the steak would've added to the volume even though it's a small one.

Also, I usually drink way too much fountain coke cause they just keep filling up this huge glass over and over again. This time, just drank water, and not even a whole big glass of it.

Anyway, the idea was to see if there's anything about the two high fiber veggies -- big dinner salad, and big sweet potato, that MIGHT cause me to put out a little brown liquid next stool time. That's why I made sure to eat every bit of it.

Will let you know what my next stool is like. Just what you need to know, right? Hahaha!
By the way, Wayne, how's your colostomy working?

Yours, Luce
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tex
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Post by tex »

Hi Luce,

I'm beginning to get the impression that you feel that the poll refers only to reactions caused by gluten. I say that because you seem to be desperately searching for a way to blame your reactions on something besides gluten, but that's really beside the point, as far as this poll is concerned, because the poll asked for information about "reactions that are probably caused by MC", not necessarily just by gluten. As you know, gluten is only one of many food items that can cause an MC reaction.

I believe that most of us agree that for many of us, sensitivity to fiber, is a characteristic of MC, and therefore, we consider reactions to fiber, to be symptomatic of MC. IOW, if it were not for the presence of MC, we would not be having problems with fiber.

Yes, I believe that your digestive problems in the instances that you cited may very well be related to the ingestion of fiber. Some of the problems may also be due to eating too much in one session, since that can also cause gastric distress.

The descriptions you give of the pain, or sensations of pressure that you experience at certain times, in your colon, are highly suggestive of constipation, especially since they are present a day or two before the BM that eliminates them. Everyone's bowel habits are different, and constipation can be difficult to define, especially for someone who is having regular BMs.

If you are passing very dry, compacted, stools, preceeded by abdominal distress, that would seem to meet the definition of constipation. On the other hand, fiber should reduce the tendency toward constipation, not increase it, so you seem to be the victim of a paradox. Perhaps the discomfort that you are feeling is just the irritation that fiber causes for many of us, whether or not it causes a "complete" reaction.

Of course, constipation is also an alternate form of MC reaction, but surely that's not what is happening in your case, since you don't present any of the other symptoms of a reation on a regular basis.

I'll say this much, just as an irrelevant observation: before my surgery, my BMs were very low volume, generally rather dry in composition. This was not surprising, though, because I ingested virtually no fiber, due to the fact that fiber tended to make me sick. Now, since my surgery, I can handle fiber, (at least I can eat all the apples, bananas, green beans, spinach, broccoli, turnip greens, etc., that I want, without any problems), and my BMs are much greater in volume, (naturally), with a slightly higher moisture content, (of course, a section of my sigmoid colon has been removed, and the distal remnant disconnected, which might slightly reduce the water extraction function of my colon, but I would think that this effect would be minimal).

IOW, maybe the influence of diverticulosis, (for those of us who have it, which is probably most of us over 50), is playing a greater role in our digetive system problems than we realize, especially as far as our ability to tolerate fiber is concerned.

My colostomy is working fine.

Wayne
:cowboy:

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.
Lucy
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Post by Lucy »

Wayne,

I've heard that the incidence of diverticulosis is around 50 percent in those over 50, which, in a way, seems fairly low, doesn't it? Perhaps I just hang around with the wrong crowd. Ha!

Today, had no ill effects from all that insoluble fiber that I ate yesterday, so maybe the meat the other times was just too much on top of all the other stuff. Stools were perfect..go figure!

Anyway, so long as I don't have diarrhea, and other symptoms, I'll just know, from now on, not to eat everything on my plate, just because it's there, and if I do, I deserve the consequences! Ha!

Know what I could do next time? Could run this experiment the other way around by just eating the meat part of that meal, and not eating the salad and sweet potato til maybe the next day after the steak had had a chance to produce symptoms, if indeed it would by itself. That way, I'd know for sure about that meat, one way or the other. If it's ok as well, then next time, will just eat smaller proportions of everything, and should be fine.

At any rate, now, I'll be on a GLUTTEN-Free diet!! Hahaha!

Yours, Luce
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Post by newchrist@verizon.net »

I wanted to contact shirley (starfire) to ask her about asacol. I am on this 800 mg 4 times a day. Still have 4 to 5 blow outs. Don't think this med is working. I am on my 9th day of blow out. Is there a way to see who has used this drug and has it help them? Sorry if I am in the wrong place. I have collageous colitis. Thanks
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tex
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Post by tex »

Hi,

Welcome to the board. Actually, these polls are archived mostly for information purposes. If you'll look at the dates of these posts, they were made over 4 years ago. If you'll post on the discussion boards, here

http://www.perskyfarms.com/phpBB2/viewforum.php?f=2

or here,

http://www.perskyfarms.com/phpBB2/viewforum.php?f=27

for example, a lot more members will see your posts, and respond.

To answer your question, though, the consensus of our experiences, among the members of this board, has shown that the 5-ASA medications, (IOW, those based on mesalamine, which include Asacol, Lialda, Colazal, Rowasa, etc.), are not very effective for treating CC. They do fairly well as a maintenance medication, after remission has been reached, but it takes a very long time for them to bring remission, if they work at all. Many of us are intolerant of Asacol, for example, because it contains lactose, and most of us are not only lactose intolerant, but also casein intolerant, (casein is the primary protein in milk, whereas lactose is the primary sugar in milk). Those who are intolerant to it, will have more diarrhea, rather than less. Also, a small percentage of patients who use it, develop chronic pancreatitis, which is a serious condition. Most GI docs are not aware of that risk, since it is not well publicized.

The most effective, safe medication for treating CC, is Entocort EC, but many GI docs are afraid to prescribe it, because they believe that it carries the same side-effect risk as the other corticosteroids. It does not, because it is encapsulated, so that it only becomes activated when it reaches the lower third of the small intestine, and the colon. Therefore only about 10 to 15 % of it is absorbed into the bloodstream, making it a much, much safer drug to take, than Prednisone, for example, even though it is just as effective as Prednisone, for all practical purposes.

After you make a few more posts, the system will allow you to see the e-mail addresses, and Personal Message, (PM), addresses of other members, so that you will be able to contact them off the board. However, unless it involves a very personal matter, it is always best to ask questions on the board, because that way, everyone can offer a solution, if they have one, or advice, if they have an opinion, and every one can benefit from the responses. We're all in this together, you know - we're all trying to find the best solutions for treating this disease, by sharing our experiences, and comparing results, and this approach works very well. We have a far better success rate for helping to bring remission to this disease, than the GI docs do, and there is more up-to-date, and effective information on treating MC, here in our database, than anywhere else in the world. Several of our members are doctors, (who have the disease), and a number of them are nurses. We all learn together, the best ways to deal with the disease.

Shirley recently lost her husband, and so she is currently dealing with personal issues, and not posting very often at the moment. If you will post your questions in one of the two forums that I mentioned above, I believe that you will find that most of the members here, know more about treating this disease, and learning to live with it, than 99.9 % of the doctors in this country.

Please be aware that this disease is very difficult to control, and remission typically takes a while, though some of us are luckier than others. CC is a true inflammatory bowel disease, and it typically takes a year or more for the intestines to heal, after treatment is started, though remission of symptoms often comes much sooner than that, typically, in 1 to 6 months, though some cases take much longer. CC cannot be cured, but the symptoms can definitely be controlled, either by diet changes, or by medications, (or a combination of the two), so that you can definitely get your life back, if you use the best treatment choice, for your particular lifestyle. We are all different, and there is no one-size-fits-all treatment. We all fine-tune our treatment to best fit our own personal situation.

Best of luck with your treatment, and again, welcome to the board.

Tex (Wayne)
:cowboy:

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.
Sunbmctcher
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Location: Harleysville, Pennsylvania

Comments about question and the forum, too.

Post by Sunbmctcher »

Hello,
So pleased to meet you and learn about this. I'm brand new, in fact still awaiting the biopsy results. Most everything else ruled out and the gastroenterologist believes this is the problem, pending the biopsy results. Biopsy taken Wed. :smile:

It's a bit overwhelming but finding this forum is so, so helpful!. I initially went to the bathroom through the night, maybe 3-7 times, then 2-3 more after breakfast. That went on for two months and now I have some episodes during the daytime and evening also. Sometimes it's "explosive" and I've wondered if I will become housebound. I've had the overt symptoms for nearly 3 mos. but I've had overwhelming fatigue for two years. I also have joint pain. I am guessing both may be connected. I have Type I Diabetes, so the autoimmune thing is not new for me. I believe this affects my diabetes.

Have much reading of the various forums to catch up on. I'm a rather reticent person and the concept of even discussing bowel movements with others is not a natural thing. It's actually wonderful to see you folks authentically relaying your experiences. Thank you so much!

Best regards,
Peggy
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tex
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Post by tex »

Hi Peggy,

Welcome to our internet family. Your symptoms sound like what most of us have gone through, so the odds are pretty high that your GI doc is correct to suspect that you have MC.

This is a very unique group, and because of the nature of the disease, we sometimes discuss things here that we wouldn't think of mentioning to our own family. You will find that no one really understands this disease, unless they have it, but we can come here, and be sure that everyone understands how we feel.

Please let us know how the biopsy turns out.

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)
:cowboy:

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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PaigeP
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Post by PaigeP »

Entocort keeps my flare ups under control for the most up, but I agree with Maggie that if I generally stick to a "clean" diet and away from the junky stuff, I'm better off.
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DJ
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Post by DJ »

If I don't eat carefully, I would have diarrhea many times daily. With Enticort and complete avoidance of wheat, dairy, soy, and nuts, I do quite well. My stamina has not returned.
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healthydesire
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Post by healthydesire »

I'm down to having diarrhea once a day unless I eat something I shouldn't. I suppose I'd consider that still "often"
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coryhub
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Post by coryhub »

Despite how well I am feeling I voted several times a month but want to say my reactions are no longer severe. I haven't missed work this year. My worst symptom of being "glutened" is the headache. I did have one severe reaction this month and it was my own doing. A friend put a bowl of cheese popcorn out while we were watching Downton Abbey and I couldn't resist. I was cramped up on the toilet that night and don't want to even see cheese popcorn again!
To end on a good note, this year I have added small amounts of foods back to my diet that I never could tolerate before.
Tex, thx for this poll, it's good to see I am not alone on this planet with this disease.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
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Post by brandy »

After 24 months I am remission. My reactions if I am inadvertently gluttened is severe hand joint pain.
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Post by Renaudsl »

Has anyone with MC experienced severe pain under right rib age and also in the same area of your back? I have been suffering for 3 days now after eating gluten. This is a new area of pain never felt before with a MC flare.
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Post by Renaudsl »

I mostly only flare when I have eaten gluten. Other times I have small flares but are not sure what has caused them.
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tex
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Post by tex »

Hi,

Welcome to the discussion board. I had aches and pains in many locations when I was still reacting, but pain just under the rib cage, that can be felt in back also, especially if it is located just to the right of center, can be due to gallbladder problems. Typically, if the pain is due to a gallbladder problem, it will appear (or become much worse) soon after eating (especially if the meal contains a significant amount of fat), and it will last for roughly 4–6 hours and then diminish.

Another possibility is costochonditis, which is inflammation of the cartilage that connects the ribs to the breastbone.

Both conditions are somewhat common with MC, because MC is caused by inflammation of the intestines, and both of those conditions are also inflammation issues.

Virtually all of us here are sensitive to gluten and dairy products, and we have to avoid them (even trace amounts) in order to control our MC symptoms. Many of us also have other food sensitivities that we have to avoid.

Again, welcome aboard, and please feel free to ask anything.

Tex
:cowboy:

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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