Newly DX - much needed advice

Discussions on the details of treatment programs using either diet, medications, or a combination of the two, can take place here.

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tex
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Post by tex »

Hi Barb,

Yes, several members have tried more than one brand of mesalamine, and some have had success with other brands, when Asacol failed to help. In order to be intolerant to mesalamine itself, one has to be sensitive to salicylates in general, because the inflammation that results from the reaction is due to the production of leukotrienes, and that response is generally attributed to NSAIDs. IOW, I don't see how you could take ibuprofen without triggering symptoms, if you were sensitive to salicylic acid. Generally, anyone who can tolerate NSAIDs, should be able to tolerate mesalamine, (without triggering the production of leukotrienes).

At least, that's my opinion, FWIW.

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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Post by Barb1 »

I know I am not suppose to use NSAIDs, but that was the only thing I could take to get relief and it did trigger D, but I needed the pain relief. I told my Dr. Tylenol doesn't work for me, he suggested asprin, and if that doesn't work either and he said to call him. Maybe he would prescribe something then.

Tex, thanks for the information it gives me a better understanding of what is happening.

Looking back now the Asacol has made me very tired along with all those other symptoms.

What does everone take for pain relief?

Thanks,
Barb
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis
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Post by tex »

Oops! :oops: I must have been half asleep when I wrote that last post, because NSAIDS, (and mesalamine), don't trigger the production of prostaglandins. Mesalamine, has been shown, (in a laboratory setting), to suppress both prostaglandins and leukotrienes, but for someone sensitive to salicylic acid, mesalamine apparently promotes the production of leukotrienes, instead. NSAIDs also promote the production of leukotrienes for anyone who is sensitive to salicylic acid. Sorry for the mistake.

I used Tylenol, but if I took it on an empty stomach, or waited until the pain was already severe, it wouldn't work for me. Therefore, I always took a couple of maximum strength tablets or capsules, with a meal, or at least with a snack, and I took it before the pain became intense. Usually, I would need to take a couple more, 4 to 6 hours later, and that would be all I would need. I sometimes had migraines with my reactions, and when I could feel one coming on, if I took the Tylenol in time, it usually resolved the problem. If I didn't take it in time, then I would usually have to continue to take more, at 4 to 6 hours intervals, but I never exceeded the 24-hour limit stated on the label, (and never drank any alcohol), because acetaminophen can do nasty stuff to our kidneys, if we abuse it.

One time, because I was out working, and didn't have any safe food handy, I took Tylenol on an empty stomach, and sure enough, it didn't work. I had read somewhere that malic acid can help to activate it, so when I got back to the house, I drank a can of apple juice, (apples contain malic acid), and sure enough, in about 10 minutes, the Tylenol began to provide relief. I have no idea if that will work for everyone, but it worked for me.

Some people use narcotic-based painkillers, and I believe there are one or two additional non-narcotic alternatives, but I've never tried them, and I can't even recall their names, at the moment. Hopefully, someone familiar with them will see your post and respond.

You're most welcome,
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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Post by Barb1 »

I have a couple of questions, if MC is in your colon why doesn't some food digest, you would think it would have before it gets there. If your symptoms/problems are in the colon why do you get cramps and D not to long after you eat certain foods? I never felt sick, I can tell you the day D started and never quit, you would think if you had food intolerances it would have come on slowly.

I feel like I am going backswords, going from eating healthy, fresh fruits and vegetables, cooking from scratch and eating whole grain. How do you get your nutrition if you can't eat the right type of food, I take supplements but it doesn't replace eating your colorful vegetables and fruits. What about juicing fruits and vegetables, raw or cooked?

Tex, do you believe Encort is better than all the other meds? What if your lab report states "not a significant amount of inflammation"? If there is not much inflammation why all the trouble!?

Thanks,
Barb
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis
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Post by tex »

Your thinking is right on target, because all digestion occurs in the stomach and the small intestine. All the colon does is to recycle water and electrolytes. It absorbs nothing else.

The problem is that MC is improperly described. Actually, it is found not only in the colon, but almost always in the small intestine, as well, and often in the stomach, (in the form of gastritis). The markers of MC can virtually always be found in the terminal ileum, and quite often even in the duodenum, so that's why digestion is a major problem with MC. If only the colon were involved, malabsorption of nutrients would be impossible, (only electrolytes would be affected). Also, if only the colon were affected, it would be impossible to have a reaction 10 minutes after starting a meal, because it takes over half a day, at least, for food to reach the colon. The diarrhea is triggered in the small intestine, not in the colon, (though it is certainly continued in the colon).

The reason why the food-sensitivities come on suddenly, is because the same genes that predispose to MC, also predispose to gluten-sensitivity, and so when MC is triggered, food-sensitivities are also triggered for most of us, at the same time. Dr. Fine is the researcher who found that genetic connection.

We have all been brainwashed by the government's food pyramid - there is nothing healthy about whole grains. They are simply less unhealthy than processed grains. The healthiest diet ever eaten by humans was the paleo diet that we evolved on, and that contained absolutely no grains, until roughly 10 to 20 thousand years ago. For hundreds of thousands of years, we ate no grains, and no dairy products, and no legumes, and paleo people were much bigger, stronger, and more robust than we are today. The decline in human stature began with the evolution of agriculture, during the neolithic period. Also, it does little good to eat healthy food, if it goes straight to the toilet. The best plan is to do whatever is necessary to get to remission, and then worry about improving the nutrition level of your diet, after you are able to absorb those nutrients.
Barb wrote:Tex, do you believe Encort is better than all the other meds? What if your lab report states "not a significant amount of inflammation"? If there is not much inflammation why all the trouble!?
If you are going to use a med, yes, my first choice would be Entocort, because it's the most effective, relatively safe option that we have. There are no drugs specifically labeled for MC, so Entocoert is the best that we can do, (unless we happen to be sensitive to it).

GI specialists and pathologists don't understand MC, and they mistakenly believe that a low lymphocyte count means a low level of inflammation, and they typically mistakenly tell those patients that they have a "mild" case. The fact of the matter is, lymphocyte count has nothing to do with the severity of clinical symptoms, and some members with the lowest indicated rates of inflammation, have the most severe symptoms, and vice versa. If you need a medical research reference on that, I can retrieve one and cite it for you, if you would like to read it for yourself.

By the same token, most GI docs mistakenly assume that a celiac with a low Marsh score has a "mild" case, but again, research proves that the degree of villus damage in the small intestine has absolutely nothing to do with the severity of clinical symptoms of the patient.

You're most welcome,
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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Post by sarkin »

Barb,

You'll get your nutrition back on track, once you get the symptoms stabilized. I am now eating a nice variety of vegetables, but first things first - let's kick your active MC to the curb. If we're not absorbing anything, why take the risk that fiber/grains/health-foods are actually making things worse instead of better? (I know, because I tried this myself!)

Also - many supplements have ingredients that may cause us to react, especially when we are really in the thick of the MC crisis. Since we're not absorbing them anyway, it's really OK to take a few weeks off, and then carefully add back the most important ones first, making sure they agree with us.

I'm eating in the way Tex described - no dairy, no legumes, and no grains, and it's really working for me. I believe I can probably eat some rice and some corn, and maybe other grains... but I don't. It's a very radical change, but the results have convinced me.

I used Pepto Bismol, and was very fortunate that it worked for me, so did not need to pursue further options such as Entocort. Unfortunately, not everyone can tolerate it - which is a terrible shame, as it is readily available and affordable. No one medication option works for everyone, but Entocort is statistically both reliable and well tolerated by a majority.

Hope you're feeling better, and keep asking the good questions,

Sara
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Post by Stanz »

tex wrote:Your thinking is right on target, because all digestion occurs in the stomach and the small intestine. All the colon does is to recycle water and electrolytes. It absorbs nothing else.

The problem is that MC is improperly described. Actually, it is found not only in the colon, but almost always in the small intestine, as well, and often in the stomach, (in the form of gastritis). The markers of MC can virtually always be found in the terminal ileum, and quite often even in the duodenum, so that's why digestion is a major problem with MC. If only the colon were involved, malabsorption of nutrients would be impossible, (only electrolytes would be affected). Also, if only the colon were affected, it would be impossible to have a reaction 10 minutes after starting a meal, because it takes over half a day, at least, for food to reach the colon. The diarrhea is triggered in the small intestine, not in the colon, (though it is certainly continued in the colon).

The reason why the food-sensitivities come on suddenly, is because the same genes that predispose to MC, also predispose to gluten-sensitivity, and so when MC is triggered, food-sensitivities are also triggered for most of us, at the same time. Dr. Fine is the researcher who found that genetic connection.

We have all been brainwashed by the government's food pyramid - there is nothing healthy about whole grains. They are simply less unhealthy than processed grains. The healthiest diet ever eaten by humans was the paleo diet that we evolved on, and that contained absolutely no grains, until roughly 10 to 20 thousand years ago. For hundreds of thousands of years, we ate no grains, and no dairy products, and no legumes, and paleo people were much bigger, stronger, and more robust than we are today. The decline in human stature began with the evolution of agriculture, during the neolithic period. Also, it does little good to eat healthy food, if it goes straight to the toilet. The best plan is to do whatever is necessary to get to remission, and then worry about improving the nutrition level of your diet, after you are able to absorb those nutrients.

GI specialists and pathologists don't understand MC, and they mistakenly believe that a low lymphocyte count means a low level of inflammation, and they typically mistakenly tell those patients that they have a "mild" case. The fact of the matter is, lymphocyte count has nothing to do with the severity of clinical symptoms, and some members with the lowest indicated rates of inflammation, have the most severe symptoms, and vice versa. If you need a medical research reference on that, I can retrieve one and cite it for you, if you would like to read it for yourself.

By the same token, most GI docs mistakenly assume that a celiac with a low Marsh score has a "mild" case, but again, research proves that the degree of villus damage in the small intestine has absolutely nothing to do with the severity of clinical symptoms of the patient.

You're most welcome,
Tex
Dr. Fine talks about this here: http://www.celiac.com/articles/759/1/Ea ... Page1.html I seriously still don't understand how food can go from stomach to small intestine in 10 minutes, but it apparently has for me many times when I've eaten gluten accidentally. I can only surmise that the villi are flattened in those w/MC as well as those with Celiac and if so, why isn't MC considered Celiac Disease?

I hadn't really connected "Ileitus" to this before now, but I was dx w/Ileitus 6 mos. after my hysterectomy for endometriosis at age 26 and continued to have bowel obstruction problems until I had a total blockage when I was 32. The surgeon found a "leather shoelace thick" piece of scar tissue that had completely cut off a loop of my intestine - which he "gingerly" severed and hoped for the best.

I've met so many people since my dx w/MC who have since found that they were GS and ALSO had had "Endometriosis", and this includes 3 of 5 sisters and a brother with all the same symptoms who ultimately died of colon cancer. My mother died from stomach cancer, my paternal GF from Intestinal blockage. I know that there are lots of men here who have had intestinal adhesions, so I wonder if I EVER had "endometriosis", or if it was gluten all along.

I'm a caterer, for the newbies here, so I am met with food requests on a daily basis and I can tell you that there is literally not a new job that I do where I am not told that someone I am feeding is gluten intolerant. On average with a crew of 30, I have 5 people who are GF and it has been as high as 1 in 3. Just this last Th/Fr I worked with clients from MN, one had been DX with celiac, at what I guess would be late 40's, another has a wife who is Swedish, as I am, and has IBS and I hope she will come on here, I gave her husband the link. It's just so frustrating that so many people go so long w/o any REAL help from their PCP's, their GI's.

Should we start a poll about Endometriosis, Tex?
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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Post by tex »

Connie wrote:Should we start a poll about Endometriosis, Tex?
I'm game. I assume we'll ignore non-endometrial adhesions, such as all those that were found during my last surgery, (because I would have never been aware of them, if it hadn't been for the surgery.

Tex
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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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Post by Stanz »

tex wrote:
Connie wrote:Should we start a poll about Endometriosis, Tex?
I'm game. I assume we'll ignore non-endometrial adhesions, such as all those that were found during my last surgery, (because I would have never been aware of them, if it hadn't been for the surgery.

Tex
So, what EXACTLY is a non-endometrial adhesion anyway, Tex? Did your surgeon actually analyze the scar tissue from your last surgery? I doubt that he did and I doubt that my "adhesion" was EVER checked out, he snipped it, the kinked end was ready to burst, he made "assumptions" he literally prayed that it wouldn't and sewed me up.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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Post by tex »

Well, my intestines were stuck together, (growing together, in numerous places). I don't believe there was any extraneous growth, only adhesions. Here's an excerpt from a post that I wrote last year, after that surgery:
The most troubling part, though, is the description of all the work that went into freeing my small intestine from all the adhesions. They barely got inside, when they noted this:
Immediately upon entering the subfascial plane, small bowel was encountered, which was densely adherent to the undersurface of the linea alba. The bowel was quite friable, and simple traction on the intestine resulted in a full-thickness tear of an isolated segment of the ileum which was repaired transversely using an inner row of continuous3-0 chromic catgut and an outer row of interrupted Lembert stitches of 3-0 silk.
It got worse:
Some 2-1/2 to 3 hours was then consumed carefully mobilizing the entire length of small intestine from the ligament of Treitz down to the ileocecal vlve. Several small, superficial, serosal tears were made with traction on this patient's friable intestines, and these were repaired using interrupted sutures of 3-0 silk.
The ligament of Treitz is located just below the stomach, (IOW, it attaches the duodenum to the diaphram), and the ileocecal valve, of course, is located between the small intestine and the colon, and it prevents the contents of the colon, (including colonic bacteria), from backing up into the ileum. The serosa is the outer layer of the intestine. IOW, separating my small intestine from all the adhesions, resulted in a number of tears, that required a bunch of tedious repair work. (I'm amazed that I didn't have any leaks).
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11238

Apparently they kept ripping my intestine, while trying to pull it apart, (trying to separate it from adhesions). :roll: It must be pretty rotten. :lol:

Tex
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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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Post by Stanz »

Ah, doctorspeak, I have no idea what all that means and didn't understand it much better right after your surgery. Did any of this make sense to you then? I have a hard time picturing it other than that stuff was stuck together and delicate and swollen and I'm just grateful that they fixed you, as you are truly a treasure.

I wish I had the medical records from my surgery at 32, can only imagine that my intestines may be as knotted up as yours were last year. They've had almost 30 more years of gluten reaction, considering that, I'm doing pretty good.

Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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Post by Barb1 »

Wow guys/gals, and I am having a pity party. I should be ashamed of myself with what some of you went through, the surgeries and EVERYTHING ELSE. I'll keep that in mind when I get depressed and it should snap me out of it!

I appreciate all of you, that we can come here and ask, talk, complain, vent and your here to listen, give advise and be there for support, it has been very helpful. THANK YOU SO MUCH!



Barb :)
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Post by tex »

Barb,

Trust me - that surgery was a walk in the park compared with dealing with MC - I slept through the whole thing. :lol: When my MC was active, I rarely got any decent sleep.

Thanks for the kind words - we have all needed support at one time or another, so it feels good to be able to help others.

Tex
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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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Post by Barb1 »

I can't take Asacol or Apriso because of the side effects and my dr. said there was nothing else...well there is a newer drug, Enocort, different formula and asked if I wanted to try it, but you can only be on it for 3 months. Is that true just 3 months? I've read were some of you taper off of it, why? What are the side effects you've had? Any information on Enocort that you have experienced would be greatly appreciated. I want to learn more about it before I fill the rx.

What if you have osteopina?

Someone gave me Papaya Enzyme chewable tablets for the digestive system, ever tried something like that?

Thank you,
Barb
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Post by Gloria »

Hi Barb,

Several of us on the board have been on various dosages of Entocort for several years. I am one of them and I have osteoporosis. The osteoporosis is probably more likely the result of gluten damage than it is from Entocort, though I'm sure Entocort plays a part. Three months isn't nearly enough time to determine your food intolerances so that diet can manage you MC without drugs.

I haven't had any noticible side effects from using Entocort. To the contrary, the pain in my finger joints clears up while I'm on it.

The biggest reason that I've wanted to taper off Entocort is because I will be going on Medicare next year, and I'm concerned about the cost of the medication. At the moment, I'm wondering if my decision to go off of it last April was a mistake. I was doing great, Normans once a day, on one pill every few days. Now, on three pills a day again, I don't usually see Norman at all. The main difference Entocort has made in my symptoms this time around is to give me slightly more than 15 seconds to get to the bathroom.

It's been the experience of board members that each time we go off Entocort and then go back on it, Entocort becomes less effective at controlling our symptoms.

Gloria
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