I'm an overwhelmed newbie.

[Becky]

I sure would appreciate it if anyone could point me to the ABC's of MC. There's so much information here, I don't know where to start with the basics. I'm so appreciative of all I've read so far. You're a wonderful group.
Me briefly...I'm 40 yrs. old and have had chronic "D" for years, was told IBS... finally got a colonoscopy and thankfully, the doc. biopsied to find MC. That was in August. I've take 2 Entocort a day until Nov. and now I'm on one. My main complaint is that I'm so tired. I've been upping the exercise for general better health, but I'm so fatigued. I'd like to blame it on my kindergartners (I'm a teacher) but I know it's MC related. So, I'd be thankful for a starting point to figure this all out.
Thank you,
Becky

[annie oakley]

Welcome to our family....There are people here better suited to tell you the abc's of this awful stuff we have. I my self was diagnosed in 2001 with MC. I at first was overwhelmed but this group of wonderful understanding people helped me and still continue to help me thru life's life problems, better than blood family sometimes.
I took Asacol for two years and have been off any meds for nearly 3 yrs. I flare from time to time but for the most part watch what I eat. So there is hope, and here there's a wealth of experience and information on this desease, sometimes I think we all collectivly know more than some of the dotors, Except for Polly. There no dumb question and not much grosses us out. Again Welcome!!
Hugs Oma

[tex]

Hi Becky,

You're right - there is a heck of a lot of information here. We were originally hoping that newbies would read the "Welcome" forum topics, and the "Information" forum topics, (and maybe the FAQs forum), in order to get started. However, as you point out, that's a lot of reading.

Based on what you've written about yourself, in your post here, I'll try to summarize my impressions about where you are in your history, (with MC), and some opinions about what you might want to try. Bear in mind that I am not a doctor, I'm just one of many MC students here, who have been there, done that, and found remission, so I am only offering my opinion, based on the experiences of myself, and others.

Incidentally, the reason why Oma excepted Polly, in her post, is because Polly is a doctor, and since she has LC, she speaks fluent MC, (unlike most doctors). Unfortunately, she recently had surgery, and she has taken on so many projects this year, that she doesn't get a chance to post very often any more, but we were very fortunate that she was willing to share so much of her valuable time to help us set up this board, originally. Hopefully, she will find some time to post more often, at some point in the future, because her insight is extremely valuable, (especially since she has so many food intolerances, and maintains her remission by diet alone).

The most severe cases of MC, (those who are unable to achieve remission by means of the currently recommended treatments endorsed by most GI docs), seem to end up seeking help at this board, so we have learned to compare notes, in order to figure out what works, and what doesn't. In fact that's why almost all of us are here in the first place - we couldn't find relief at our doctors' offices.

Traditionally, if a doctor tells you that you have IBS, it's doctorspeak for, "I don't have the foggiest idea what's really wrong with you". LOL. If you have had chronic D for years, you have probably accrued a lot of damage to your colon, and possibly your small intestine. I don't recall you mentioning whether or not you are having normal BMs now, or whether you still have D. Whether you are still having D or not, the constant fatigue, and the feeling when you get out of bed, that you have been hit by a truck, are definitely symptoms of MC, and a clear indication that your MC is still very active. It took years for the damage to develop, your gut cannot heal in just a few short weeks. Healing often takes a year or longer, in severe cases, where the damage has been accruing for years.

I can't help but wonder why your doctor had you taking only two Entocort capsules per day, and has already reduced your dosage to a maintenance dose of one, when you are not yet in remission. The normal dosage rate for Entocort is three per day, and the most reliable treatment regimem seems to be to continue the treatment for at least approximately three months past the point at which a patient begins having normal BMs. However, twice that amount, (up to six per day), can be safely taken in cases where the normal dosage rate does not result in remission from symptoms. Statistically, the double dose increases the odds of achieving remission, from the 50 to 60% range, to the 75 to 80 % range.

MC can be controlled, but it cannot be cured. IOW, once MC is triggered, it will always be a threat, unless a continuous treatment program is followed, in order to preempt it. There are a few rare individuals who achieve spontaneous remission, but for most of us, we have to continue our treatment for the rest of our lives. Some of us follow a rigid diet, which excludes our trigger foods, (100%), and some of us take a maintenance dose of a med which works for us, (and one which is acceptable to us, for long-term use, based on a consideration of the risks of possible side effects), and some of us use a combination of both methods. Asacol works for some, and others use various other meds, but Entocort is probably the most popular, (safest, and most effective), med available for MC, (and other IBDs, for that matter).

Most of us with MC are gluten sensitive. For the GF diet to work, one has to follow a diet that is absolutely 100% gluten free. Tiny amounts can cause just as much damage to our guts as large amounts, for all practical purposes. If you want to try the diet, there is a lot of information about it in the "Diet" forums. If you want to use Entocort, my opinion is that you will need to boost the dosage up to a normal level, until all your symptoms are gone, before even thinking about reducing the dosage rate to a maintenance dose, (which you are on now).

Here's why: Entocort, (and the other corticosteroids), work by reducing inflammation. The constant fatigue, and the severe body aches and pains, are clear signs that inflammation is running rampant in your body. Actually, the fatigue, the body aches and pains, joint pains, etc., are the result of the leaky gut syndrome, but the LGS is linked with the inflammation in the GI tract, so if the inflammation in the gut is properly addressed, the LGS will subside, also. Entocort is designed to activate only after it enters the ileum, (the lower third of the small intestine), and the colon, so it is ideally suited for treating MC, without causing the severe systemic effects that come with the use of conventional corticosteroids, such as Prednisone, and it's related family of meds.

IOW, basically, you need to size up your current situation, (is D still a symptom, or are you only bothered by fatigue, and body aches and pains), and decide which type of treatment program you prefer to follow, (diet, meds, or a combination). The reason why some people choose a combination, is because it will usually bring remission faster than either diet or meds alone, and it will allow one to occasionally slip up on a diet, without serious adverse effects. Also, for some individuals, with unusually severe cases, a combination may be the only way for them to achieve remission.

Please feel free to ask any questions that come to mind. If we can't answer them, we can probably figure out where to find the answers. Also, if I haven't addressed the issues that you are interested in, or if I've confused you by not explaining myself correctly, please tell me so, and point me in the right direction, and I'll try to do better.

This board is here for your benefit, and we all remember the hopeless feelings we had, when we were so sick ourselves, and couldn't seem to get better, so we're anxious to help, in any way we can.

Tex

[Becky]

I was hoping to hear from you. I've learned a lot from your other posts I've read. I think I will call the doc tomorrow and ask to up the Entocort. I went down to 2 because I got plugged!
As I've looked for info. at the library, I'm finding lots on Ulcerative C. but not so much on MC. Are they completely different? Or can I read about UC and apply to my situation too?
Thanks again,
Becky

[tex]

Hmmmmmmmm. This could be a tricky situation. Many of us, as you may know, have alternating D and C, rather than D alone. To be honest, I have no idea what the long-term implications might be for a patient taking Entocort, if an increased dosage rate is used over an extended time, while C is a problem. That might be a good question to ask your doctor.

There is much more literature and documented research on UC, simply because it has been known about and "understood" much longer than MC has. MC is a relative late-comer on the medical scene. It was described for the first time during the mid 1980s, and was initially classified as a rare disease, and as a result, it has not been in the medical text books very long, so a lot of GI docs have been slow to pick up on it.

Somewhere, in an old post, I outlined the differences between Crohn's, UC, and MC, but when I did a quick search this morning, I didn't find it, (or else I didn't recognize it, anyway). Basically, UC is a disease of the distal colon, (only). IOW, it primarily affects the sigmoid colon, and the rectum. It is more severe than MC, of course, because it causes visually obvious, (during a colonoscopy, or sigmoidoscopy), lesions in the epithelium of the colon. That is to say, it causes bleeding ulcers that penetrate into the surface layer of the mucosa of the colon, that are easily seen during the examination.

Crohn's disease can effect the entire GI tract, (from mouth to anus), again with bleeding ulcers, that can be seen by the unaided eye, during an endoscopy exam. The lesions from Crohn's disease penetrate deeper than UC lesions, and affect the sub-epithelial layers of the mucosa, in fact, they sometimes result in perforation of the intestine.

It is possible for MC to be observed by the unaided eye of the examining doctor, during a colonoscopy, as slightly reddish splotches in the colon, (actually, more like random darker pink areas, on the normal pink background color of the interior of the colon). However, if the doctor has not been trained to look for it, he won't notice it, since it is such a subtle difference in the appearance of the mucosa. During my colonoscopy, I could clearly see those slightly "reddened" areas, but my GI doc explained them away as possibly areas of prior infections, and didn't even bother to take biopsy samples. (This was back in the year 2000.) At the time, of course, I didn't realize what I was seeing, either, until I later read Dr. Fine's description of the phenomenon.

Anyway, the point is, in order to confirm the presence of MC, biopsy samples must be examined under a microscope to detect the presence of either an elevated lyphocyte count between the cells of the epithelia, or layers of thickened collagen deposits, below the epithelia. The first condition is commonly known as lymphocytic colitis, and the second condition is known as collagenous colitis, of course. Many patients have both markers, and are simply diagnosed as having microscopic colitis. In fact, it is now known that that both LC and CC often segue from one form to the other. In the long run, at least 50 % of patients initially diagnosed with CC, for example, are later found to have LC. (I can cite references on this, if you would like more information about it.)

Like Crohn's, MC can affect the entire GI tract, but most commonly is restricted to the colon and lower part of the small intestine. The primary difference between MC and UC, (and Crohn's, for that matter), is that there are no lesions in the epithelia, with MC, and therefore, never any bleeding. Whereas surgical intervention is frequently necessary with both Crohn's and UC, it is never necessary with MC. However, it is known, (and documented), that diversion of the fecal stream from the colon, (IOW, an ileostomy), will "cure" MC, and it has been further demonstrated that a reversal of the procedure will reactivate MC, thus proving that some toxic agent in the fecal stream, is causing the MC when it reaches the lumen, (the interior), of the colon.

Here is an old topic from last year, that might be of interest:

http://www.perskyfarms.com/phpBB2/viewt ... epithelial

Thank you for the kind words, and you are most welcome,
Tex

P S Are you restricting your diet in any way, or is Entocort the extent of your treatment at this point. The reason I ask is because I am one who has alternating C and D, if my MC is activated. I had to eliminate diary products, (in addition to gluten), while my gut was healing, (or at least I thought I had to). Today, if I eat dairy products, the usual result is C, not D, but not serious enough to be a significant problem.

[tex]

One thing I forgot to mention - two of the known side effects of Entocort are fatigue and muscle weakness, (something like 5 % of users have those problems). Are your fatigue symptoms worse since you've been taking Entocort? Have they been less noticeable since you reduced the dosage to 3 mg per day? Of course it's possible that if it causes those side effects in a patient, the amount of the effect may not necessarily be dependent on the dose, IOW, a small amount might possibly cause just as much effect as a full dose, but that doesn't seem likely.

If you think that Entocort might be the problem, and your doctor agrees, you might want to consider trying mesalamine, (Asacol, Pentasa, or Rowasa). This class of meds acts as sort of a topical coating for the intestinal lining, (somewhat like Pepto-Bismol, but without the bismuth), which can help to reduce inflammation, and they don't have some of the side effect risks common to the corticosteroids, (of course they have side effects of their own, though).

You mentioned researching UC, for tips on treating MC, and in a way, that's not too far off base. Actually, even though the diseases are quite different, Crohn's, UC, and MC are all Inflammatory Bowel Diseases, (IBDs), and basically the same meds are used to treat all of them, (with varying degrees of success). There has also been some research done which shows that diet can be an alternative way to treat UC and Crohn's, just as it works for many people with MC.

Tex

[harvest_table]

Hi Becky,

Welcome to the Potty People.......

My experience with MC and hanging out with this group for three years tells me we haven't come up with an ABC of MC, yet.......working on that.

I was interested to know after your DX your GI put you on Entocort right off the bat. This seems to be a good medication for some of us.

Was this the first med he put you on?

Thanks for posting.

Joanna

[Becky]

Tex, you should get an honorary doctorate!
I've complained about tiredness the last couple of years. Had my thyroid tested, told I was depressed, told I should get more exercise, etc. with the MC diagnosis I feel a little more validated, albeit overwhelmed.
Couple of questions. I've been cruising around the site for over an hour.
I have not lost weight (without trying) I'm 155 now after REALLY watching my diet and exercising. I clicked on a link about celiac disease and an overweight person. It explained how malaborption can make your body think you're starving and store all the fat it can. Can you have MC and CD? Should I ask to be tested for that as well because the symptoms are so similar. I want to go GF NOW! but it said to wait for testing first because changing your diet first could invalidate the findings.
By the way, I called the doc. I'm back to 3 Entocort starting tomorrow but he said for 2 weeks, then to call and give him an update. I'll keep in mind the other meds. you suggested if I don't get more peppy!
Thanks so much!
Becky

[tex]

Becky,

If you have been overly tired for a couple of years, has your doctor considered that you might have chronic fatigue syndrome? Of course, MC causes many of the same symptoms that are listed as diagnostic criteria for CFS, but you might have had it before the MC came along. Usually, the first significant symptom of MC, is diarrhea. With MC, the tiredness, aches and pains, and various other symptoms, typically follow the D, (they don't precede it).

One of the known triggers for MC is gluten sensitivity. Yes, it's possible to have MC and CD at the same time. We have had several members with that combination. It's also possible to have what we call "celiac lite", where one is highly gluten sensitive, but fails to meet the criteria of celiac disease, as diagnosed by the classic blood tests, and small intestinal biopsy. IOW, the results of the classic celiac blood tests might be negative, and there might not be any villous atrophy detected by the biopsies, but you can still be very gluten sensitive. Some authorities consider this condition to be latent celiac disease, (IOW, a preliminary stage, where the disease is not yet fully developed). The only lab tests that will reliably detect gluten sensitivity before full blown celiac disease develops, are based on stool tests for antibodies, and there is currently only one lab in the U. S. that is certified for doing this - Enterolab, in Dallas. Of course, you can always do what many of us have done - just stop eating gluten, and if your symptoms disappear, that's prima facie evidence that you are indeed gluten sensitive.

To answer your question, though - yes, if I were in your shoes I would request to be tested for celiac sprue, since a postiive test result would answer a lot of questions. As you mentioned, yes, in order to use the classic blood tests, you have be be eating gluten for at least four to six months prior to the test, because the test is not very sensitive, and is prone to false negative results. The stool test is much more sensitive, and can still reliably detect antibodies up to a year after gluten is withdrawn from the diet, but many GI docs are either unaware of it, or don't trust it, because it's a relatively new technique. Most insurance policies won't pay for it, either, though some will, if the test is requested by a doctor.

A fairly high percentage of us have hypothyroidism, (though at least one member has hyperthyroidism). It seems to be a common "satellite" disease that tends to follow MC around. Also, a lot of doctors use old-fashioned, (and obsolete), methods for determining thyroid status. The American Association of Clinical Endocrinologists issued new guidelines for thyroid testing, about five years ago, but many labs and doctors are still using the old "normal ranges" for TSH, and as a result, there are many, many undiagnosed cases of hypothyroidism in this country today, due to misinterpretation of test results.

Do you happen to know the test results for your thyroid test, or do you have a copy of the results? The most important numbers are the TSH, (Thyroid Stimulating Hormone), free T3, (free thyroid hormone in storage), and free T4, (free thyroid hormone available for uptake). For example, a TSH value over 2.0 is suspect, and a value over 3.0 is almost surely a sigh of hypothyroidism, especially if your free T4 is around 0.75 or less.

Good luck with the increased dose of Entocort.

Tex

[harvest_table]

Tex, you should get an honorary doctorate!
Becky

Ditto that...

Becky, what type of diet are you eating these days?

Love,
Joanna

[Becky]

Hi Joanna,
Thanks for your replies as well.
My doc. didn't advise any diet changes to see if the entocort works on it's own. At my next appt. I want to talk about going glutten free.
I try to eat healthy aside from MC. Not much fats or processed foods. I do a lot of gardening and canning, etc. I try to keep my calories between 1300-1500 and fiber around 25 a day. Lots of fruits and veggies, chicken, fish and whole grain breads and pastas. Lots of water and I switched from milk to soy and from coffee to tea.
By the way the only meds. I tried before Entocort were over the counter, pepto etc.
Thanks,
Becky

[m]

Becky,
Welcome to the group. Sorry you have to be here in the first place but at least you're among friends. :)
One thing that you should keep in mind, what works for one person may not work for another. An what works for a while, may not keep working. I'm not trying to make you depressed, I'm just pointing out that you should do what feels right for YOU.
After I was diagnosed with LC five years ago, it took some time for me to work out what made me feel best. I tried standard medication at the beginning but it made me feel worse. I finally turned to gluten and dairy free diet and that seemed to help a great deal. It was hard at first giving up bread and cheese but it got easier, especially when people gave me specific product recommendations here. I still have LC but I believe I'm mostly in remission with occasional flare ups. I can live with that. Keep asking questions and working at a plan. It will work out.
m

[MaggieRedwings]

Morning Becky,

Sorry for being remiss in not welcoming you sooner but had a big event to put together last week and was exhausted afterwards and just back on the board. Welcome to the Potty People.

There is a wealth of knowledge here - ditto on the Doctorate to Tex - and the more you stay with us the more knowlege there is. Have been with the original group for going on 8 years now - can you believe that Alice, Polly and Barbara.

I currently am on entocort and thank the Lord for it since I have really had a mixed road for a long, long time. I am GF and have multiple intolerances but Entocort has given me my life back. Just cut back to one per day starting yesterday and within the next month will wean off and see what happens.

Again welcome and glad you are here with us.

Maggie

[Mars]

Becky!

Glad to see you found the BEST board on the net (kind of partial in my opinion, but hey!) :)

There is so much information on this board that you will become overwhelmed very quickly. I am glad that there are those here that can and will give you an immediate answer instead of you fumbling through the threads. We have a wealth of information stored here and it is worth reading in your spare time.

One of the things we have found among us is that we are all different, react to meds differently and also food. A combination of them also will give us different results. Yes, it is frustrating but we muddle through it and help whenever and wherever we can. I truely hope that you find a quick remedy to the symptoms and then continue to control them by whatever works for YOU!

Again, welcome to our group of funny, caring and loving people. We are here to help and welcome you with open arms to help you achieve a comfortable, controlled lifestyle!

Mars

[Polly]

Hello Becky and

According to Tex, I speak "fluent MC" - LOL! But as you can see, so does everyone else here. Especially Tex, who has already covered all of the major MC issues. I have little to add other than some personal experience.

One of the major symptoms I had before my MC diagnosis was fatigue. It was so bad that I could fall into bed at 8 PM, sleep 12 hours, and wake up exhausted. I am also an exerciser, like you, and somehow I continued with it throughout my early experience with MC (I am a runner so had to always carry lots of Kleenex with me and run on a trail in the woods in case I had to poop). Once I began to get my MC under control with diet, I noticed improvement in lots of symptoms fairly quickly - increased sense of well-being, less urgency/frequency of diarrhea (D). However, it took almost 9 mos. for the D to stop. And a full 2-3 years to get my energy back. Yep, the fatigue was the last symptom to disappear. It happened gradually - it just kept getting better and better but took a long time.

One caution.......most GI docs do not have the kind of knowledge about MC that we have accumulated here, so don't be surprised if you know a lot more than your doc or if (s)he disagrees with what you want to do in your treatment plan. Most don't know beans about the relationship of MC to gluten and other food sensitivities. And the blood test for CD (celiac) is usually negative in those of us with MC, despite the fact that we can be EXTREMElY sensitive to gluten. The only accurate tests for our type of gluten sensitivity are done in Dr. Ken Fine's lab in TX - he uses STOOL samples to find the antibodies to gluten and other foods. Check out www.finerhealth.com if interested. Many of us have had testing by Dr. Fine. In fact, if not for his tests, I would still be sick, I think.

Please keep us posted on your progress. And keep asking those questions.

Love,

Polly