New member feeling right at home..

[alexandraCA]

My name is Alexandra, I'm 31 y.o., and live in Los Angeles. Began treatment for IBS-D at the age of 14 and after years of tests, diets, colonoscopies and meds little progress has ever been made. Two months ago a biopsy found MC and after ages of putting this all into the brain/gut axis basket (I have Panic Disorder and OCD) it is bizarre to attribute some actual physical component to this all. But it hasn't made it FEEL better. Recently I've been taking Imodium and Questran (emergency gallbladder removal at 20, no known reason) along with probiotics (great dairy, soy and gluten free one). GI Dr has added Pepto Bismol and while I am now moving up to 6 tabs a day it isn't doing much. I have had dairy sensitivity since abt 14 and just had allergy tests done that revealed a few environmental issues (who isn't allergic to dust mites?). I am looking into EnteroLab for alternate opinion on the gluten and soy.

As a photographer I turn down most event work (weddings, b mitzvahs, etc) because I have days where my stomach is a nightmare and I fear not being able to capture the moment. Today I had to cancel a job because the new meds are not working and want to give them time to find someone else. Those moments are difficult and depressing. Pain and anxiety are a dangerous combo and I work diligently to fight the fear. But some days the limitations are very real and disappointing. Anyone else relate?

[Gloria]

Welcome Alexandra!!

I'm so sorry to read that you have been struggling with intestinal problems for a long time. Be assured that you have reached the right place and we know what you are going through.

Those of us with MC suspect that many others have it, but have been misdiagnosed as having IBS, as happened with you. The problem is that the medical community considers it to be an "old woman's disease." This is most likely because younger people like you don't typically have colonoscopies or biopsies. You finally have the correct diagnosis and will be able to treat your MC properly.

I also didn't have any success with Pepto Bismol - in fact, it made my MC worse. Dr. Fine, who is the GI who originally recommended Pepto Bismo as a treatment for MC, no longer recommends it. Instead, as you've discovered at Enterolab, he recommends a gluten-free diet.

Most of us here follow a gluten-free diet to control our MC. In addition, many of us - myself included- take Entocort, a corticosteroid to control our symptoms while we fine-tune our diets to reduce the inflammation in our gut.

Many here can also relate to feelings of depression and discouragement. You are not alone in having these feelings. Having MC can be very depressing, especially when your symptoms are ruling your life.

I'm sure you'll be reading the posts here. I know that they were very helpful to me when I joined a couple of years ago. Please don't hesitate to ask us any questions that you may have. Chances are, someone has experienced what you are going through. We are here to help you get your life back. And you will get your life back!

Gloria

[barbaranoela]

Alexandra ---

Yup we all can relate as to what U are going thru-----some worse than others--U couldnt have found a better place for info---support and friendship-
As we are all different U will hear many stories from our *family*---cus that is what we have become---
Sooooooo grab a
--pull up a chair and read away and watch for megga answers to your questions--including diet---different meds.--what works for one and not the other~~~
Things do get better!!!!


Barbara

[tex]

Hi Alexandra,

Welcome to our internet family. As Barbara says, we are a family, because we have found that no one truly understands how we feel, and what we are going through, unless they have the disease themselves.

Do we relate? You betcha! I am self-employed, also, (small business), and when my symptoms started, my business was expanding rapidly, and my products were just beginning to be sold in other states. I figured that within a couple of years, I would have a good coverage of most of the eastern half of the U. S., and I would have "officially" made it to the "big time". Unfortunately, my GI doc was no help at all, and I wasn't even aware of any support board back then, (I didn't even know what I had), so it didn't take me long to discover that not only would my symptoms not allow me to put in the necessary long hours of work, on some days, they wouldn't even let me think straight, and since I didn't have anyone else who could make those critical day-to-day decisions for me, I was forced to downsize, and pretty much shelve my ambitions.

I'm hoping that now that you know what you are dealing with, you will be able to fine-tune your treatment plan, so that if things go well, within a few months or so, you will no longer find it necessary to turn down any jobs, because of concerns about a flareup of symptoms at a "bad" time, (as if any time is good for a flare).

I totally agree with Gloria about the treatment recommendations. Most GI docs don't understand why Dr. Fine's original Pepto Bismol treatment works, and they neglect to tell the patient that the Pepto must be taken in tandem with a strict diet that cuts out all gluten, dairy products, and possibly other items, (such as soy). Consequently, a few days after the 8-week treatment program ends, many/most patients will relapse, and they will be back where they started. However, if you are not allergic to large doses of Pepto-Bismol, and you are careful about your diet, the combination of Pepto plus diet will bring remission in about 80% of cases, (or better). Pepto-Bismol cannot be safely taken at that large dosage rate, (the recommended rate is 8 tabs per day, for 8 weeks, I believe), for longer than 8 weeks, because of the risk of a toxic buildup of bismuth in the body. Quite a few members here found that they could not tolerate the Pepto treatment, (they had neurological symptoms).

If you want to take a med, we have found, (as Gloria mentioned), that the most effective "safe" medication for treating MC is Entocort EC. Entocort EC plus "the diet", will allow a patient to achieve remission much faster than by means of the diet alone, and after the intestines have healed sufficiently, the Entocort can be tapered down, and eventually stopped completely, and remission can be maintained by diet alone. Some members with the most severe sensitivities, find that it can take a long time before they are able to completely eliminate the Entocort, though. Often, they maintain on one tab a day, or one tab every other day, for example, while they finish fine-tuning their diet.

The active ingredient in Entocort EC is budesonide, which is a corticosteroid, of course, but it is encapsulated, so that it does not become activated until it reaches the lower third of the small intestine, and the colon. Therefore, unlike the other corticosteroids, which are about 80 to 90% absorbed, only about 10 to 15% of the budesonide in Entocort is absorbed by the bloodstream, and because of that, the side effects that normally accompany the corticosteroids, are drastically reduced, and much less likely to be a problem, with Entocort EC. IOW, if the Pepto treatment doesn't work, or you decide to end it prematurely, Encotort can help you to get your life back much sooner, if you would rather not wait for the diet to take effect, by itself.

The tests at Enterolab are extremely accurate, and I have never heard of anyone who wasn't satisfied with their test result accuracy. If someone adopts the GF diet, for example, a few weeks to a couple of months later, the blood tests will not detect any gluten antibodies, even in the case of fully-developed celiac disease, (and the blood tests will almost never detect gluten antibodies in someone who does not have fully-developed celiac disease, even while they are still ingesting gluten). The stool tests at Enterolab, on the other hand, can still reliably detect gluten antibodies at least a year after the GF diet is adopted, and in some cases, they can still detect them up to two years after gluten is removed from the diet. IOW, the stool tests are several orders of magnitude more sensitive, (and much more reliable), than the blood tests, for detecting food sensitivities. That should be pretty obvious, actually, since the antibodies are produced in the intestines, in the first place, and by the time they show up in the bloodstream, in quantities sufficient to trigger a positive test, a lot of damage has already been accrued in the intestines.

We are all different, and so we all have to sort of fine-tune our own treatment program, but whatever treatment program you decide to follow, we will certainly try to help in any way we can. We learn from each other here, concerning what works and what doesn't work, so we are all students of MC, and to some extent, we are all teachers. The bottom line is, as Gloria pointed out, you definitely can get your life back.

Incidentally, Panic Disorder, OCD, anxiety, and depression, are surprisingly common among people with MC. We don't all have those issues, but quite a few of us have some of them.

Again, welcome aboard. Please don't hesitate to ask any questions that come to mind, and please keep us posted on your progress, since we all learn from each other experiences.

Tex (Wayne)

[alexandraCA]

Thank you to all of you for the warm welcome. I am fortunate to have compassionate people in my life but very few truly understand.

Tex, my jaw literally dropped when I read what you said about Pepto Bismol as an 8-week treatment. My GI's plan with the Pepto is INDEFINITE at up to 8 a day. And she has not brought diet into this once. This is a relatively new GI I'm seeing and I have been underwhelmed but at the same time optimistic since she was the one who discovered this. I've had so many procedures over the years and the results were always vague, and I don't know if there were any biopsies for MC.

I'm going to look further into the Pepto studies. I tend to visit doctors with notepad in hand but with the PB I only did very basic research, incl. a line the Mayo Clinic mentioned about it as treatment. At four a day for about four weeks with zero improvement I find it incredibly frustrating. 17 years of living with this uncertainty, you'd think I'd be more patient but I tend find that if a treatment is not of benefit then we need to move on. I saw my GI last week and she wants to see me in a month to see how I am doing on 6 a day. I think I am going to look for a new GI in the time being. Do people on this board ever recommend doctors?

Again, thank you for the kind words and support. Entero is my next step. I'll be calling them tomorrow.

a.

[faithberry]

Hi Alexandra,

Just wondering if you have ever explored the link between OCD/Panic disorder and histamine levels (not sure if it's high or low). There may not be a connection for everyone, but I've seen it mentioned online. Histamine is an issue for me and I've had a few near panic attacks over the years.

[tex]

Alexandra,

As I mentioned, Dr. Kenneth Fine is the GI doc/researcher who originally developed the Pepto treatment, over 10 years ago. He has MC, himself. Here is his original treatment outline, which describes his research using Pepto, and the treatment plan he developed:

http://www.finerhealth.com/Educational_ ... litis/FAQ/

Here is his revised position on that treatment. He published this revised statement at least 3 or 4 years ago, (the last update to the web page was in 2006, I believe, though the revision was probably posted earlier than that).

How should Microscopic Colitis be treated?
I have studied the use of Pepto Bismol (Procter and Gamble) for the last 6 years and have achieved good results and learned a lot about the syndrome from these studies. However, although Pepto Bismol will relieve diarrhea in 90% and resolve the colitis on biopsies in about 80%, 20-30% experience relapses after they stop the medicine, and 10% do not respond initially. It has now become clear from extensive further research over the last 3-4 years that these relapses, and in the less common instances when there is no intitial response, have been shown by my new sensitive stool testing to be caused by coexisting immunologic sensitivity to gluten in the diet, that is to a protein found in wheat, barley, rye, and oats. Although not the cause of the colitis, per se, the reaction to gluten by the immune system can perpetuate or reactivate the colonic inflammation. Because of this chance of relapse, and because Pepto Bismol is still a drug with at least the potential (albeit rare chance) for side effects or reactions to the dyes, etc., I recommend testing for gluten sensitivity and a gluten-free diet as the first line of treatment for microscopic colitis. This appraoch has brought more relief to the sufferers of colitis than any other form of treatment to date. It must be stressed that because the reaction to gluten by microscopic colitis patients is usually not fully developed celiac disease, blood tests for antibodies to gliadin and tissue transglutaminase (the diagnositc tests for gluten sensitivity) are routinely negative. This is why and how I discovered that these antibodies must be looked for at the anatomic site of their production: inside the intestine, which for a diagnostic test, is in the stool. These tests are now available from EnteroLab for this purpose. This is discussed further below.

That quote comes from this page:

http://www.finerhealth.com/Educational_ ... c_Colitis/

Do people on this board ever recommend doctors?

Yes, but unfortunately, precious few of us have been fortunate enough to find doctors who actually understand the disease, and it's treatment, well enough to be truly beneficial. The best that most of us have been able to hope for, is to locate a GI doc who is open-minded enough to actually listen to what we are saying, and who is willing to learn along with us, how best to treat the disease. Only a few of us have succeeded in that goal. Many of us have found that most of the GI docs we encounter, aren't willing to devote the time and energy necessary to learn about the disease, so they prescribe a drug or two, and when no improvement is seen, they feel embarrassed/insulted, and they seem to blame the patient.

I believe the primary problem is the "official" position of the medical community, on the disease itself. IMO, it's incorrectly described, and even incorrectly named, and the "official" treatment is convoluted, at best, (it's aimed at treating the symptoms, rather than the cause). Most GI docs are not comfortable in deviating very far away from what they learned about the disease in med school, and what they learned is obsolete, and mostly incorrect, and since the disease is still considered to be rare, (though it is not), they don't feel the need to spend any significant amount of time trying to update their knowledgebase on the disease, (and precious little "official" updated research data are available, anyway). Most GI docs consider themselves to be "experts", (which is not surprising, since they have the documentation to support that claim), so they feel very uncomfortable when a patient tries to tell them how the disease should be treated. In the case of MC, however, it turns out that the roles are often reversed, and the patients are the experts.

We have two or three members, who have tried a selection of some of the most highly-recommend GI docs in the country, from some of the most prestigious medical institutions. Unfortunately, as far as I'm aware, none of them has ever reported any significant benefits from those consultations/treatments, at least, not in the long run. You have to bear in mind, though, that I'm talking about members with the most severe cases, and the most sensitivities. They almost always come back to a combination of diet and Entocort, in order to control their symptoms.

Enterolab testing is a great first step, on the path to remission, since it removes all doubt about whether or not certain foods may be causing inflammation and/or reactions.

Tex

P. S. Incidentally, my comment above, about MC being incorrectly described, and inappropriately named, is based on the fact that the term "colitis", refers to the colon, (only), and implies that the disease is limited to the colon. That is obviously incorrect, since most of us have experienced symptoms in other parts of the GI tract, that are clearly connected with the disease, such as mouth sores, gastritis, small intestinal inflammation of the same type as is found in the colon, (IOW, lymphocytic infiltration of the mucosa). The fact is, like Crohn's disase, MC can affect any portion of the entire GI tract, from mouth to anus. Most GI docs aren't even aware of that.

[alexandraCA]

I thank you all for the great insight you've offered. For 16.5 years I was well read on all things related to the ambigious IBS and over the years saw various doctors (living in Los Angeles there are a a great variety and I have seen "the best" at noted University hospitals to chic Beverly Hills practitioners to small, no frills offices and none have varied much in their approach). I began with a pediatric GI at 14 and in the time since have seen approximately half a dozen GI docs. While I have had periods of improvement and then what I always referred to as "flare ups" there has never been any rhyme or reason in it. And everything has always been treated with band aids.

I will look into the histamine level issue and anxiety/OCD. In my experience I have always seen a very strong genetic component at play. I have an allergist I really like and I will ask him. When he recently did a 64 panel skin test and it didn't show any food issues he was the first to say that a sensitivity was possible and it didn't show in this test. I appreciated that given the fact I know for certain I can't tolerate dairy and lactose pills do nothing to help it.

I just spoke to EnteroLab and they were wonderful. I inquired if they had doctors they recommended (I figured any GI using them was worth consideration) and I was given several names in Beverly Hills and West L.A. which are all minutes from me. I'll see if my insurance covers them and go from there.

Again, thank you for your support and wealth of knowledge. Knowledge is bliss. Have a wonderful day, a.

[tex]

That was a great idea, asking them for referrals. I'll bet that will pay dividends, especially in your area, since a lot of the best docs supposedly move out there, to take advantage of the higher income opportunities.

Good luck with your selection, and please keep us posted on your progress.

Tex

P. S. Many of us have found that the difference between IBS and MC, is simply a few biopsy samples.

[RUBYREDDOG]

Alexandra, I also live in the L.A. area. I wish I could recommend a good GI doc. but I have not found one yet. Actually, I have only seen one and he did my initial biopsy to discover that I had LC. After that, he prescribed Prednisone, which he said would cure me within two weeks. I believed him at the time, after all, he was board certified. But it was not to be. Those of us on this board know that there is no "cure " for this disease. Only remission is possible.

After that episode, he basically said that I would have to live with it and that it would probably go away after a while. Not wanting to accept that, I decided to take matters into my own hand and that is when I found this board. My Enterolab results, diet and now Entocort have helped me a great deal. I have started to reduce my dosage to 6 mg/day and am doing well at that level, so far.

So read all you can and good luck with your journey.

Hotrod