My MC Story and Struggles

[frank]

Hello to all, and a heart filled thanks for accepting me into this forum.

My name is Frank, and it's been a lonely, uphill journey to try and understand and treat my MC. I am so happy to have found this site...WHAT A VALUABLE RESOURCE!!! A true testament to everybody's dedication

I need some advice and guidance so that I can begin healing in a quick and efficient manner. I will try and briefly describe my experience (w/o focusing on the many negative experiences I've endured...I believe positivity is the only way to take steps forward:

I am a 37 year old male, and have been experiencing chronic diarrhea since November 2014. This began sporadically, so I ignored it believing it was a virus of sorts. When my gastroenterologist performed a colonoscopy and throat scope, the biopsy result confirmed MC (although he didn't confirm which type, and stated they are closely related, and one is just a precursor to the other), adn acid reflux. I requested blood work (mainly for vitamin levels, primarily B12 as a researched that it is necessary for digestive absorption), he complied and also scheduled a CT-Scan (upcoming). What I know thus far from the blood analysis is that the ANA (anti nuclear antibodies) are positive, which suggests an auto immune disorder. In the meantime, I was advised not to alter my diet, and was prescribed Cholestyramine to bulk up the stool. Steriods would be prescribed next if this doesn't work.

I am satisfied to finally know exactly what is wrong with me, and am eager to begin healing. I am puzzled by this diagnosis, only because I adhere to a very healthy lifestyle (aside from extraordinary high stress levels over the last several years - especially these last two years). But, my diet has been gluten reduced over the last couple of years (and relatively dairy free) - both by choice. I consumed an organic diet, with high focus on raw fruits, vegetables, nuts/seeds, and honey. I abstained from alcohol, and was excising everyday for several months. To this point, I was finally feeling healthy and strong!!

Prior to this period, I had high consumption of gluten throughout my life, but never had any issues (same with dairy). Further, my biopsy's mentioned above did not show signs of celiac disease. I have been very healthy throughout my life (from a DI standpoint, and have always been very regular). Bio physically, I have always prided myself on my strength, stamina and endurance. The only change worthy of mention is an accident about 10 years ago to my hand that requires multiple surgeries and reconstruction. The healing was not perfect, and since then, I've been battling chronic muscular and joint pain on a regular basis. I began experiencing back pain 5 years ago, and it has progressed tot he point where the flare up prevented me from walking this past summer, and the overall healing took weeks to heal. I guess this connect the ANA result to the muscle and joint pain, and to the MC? I have a tender spot on the bottom right side on my tailbone (debilitating to the slightest touch), and eczema on my belly button (recent). I've suggested a correlation for all these symptoms to my health care professionals, but they disagree. All tests (xrays, etc) are normal.

I recognize that food is integral with my diarrhea, so I began researching for any and all info that could help. Nothing worked. I read the SCD book, and hoped it would be the cure. I've been on the beginner diet for several weeks (homemade yoghurt, dry curd cottage cheese, gelatin, chicken and soup, eggs. It has been helping as I've reduced my BM from 12 to two or three a day. I've slowly been re-introducing vegetables: squash, carrots, string beans, with consistent results. However, despite reducing my symptoms, they still exist. I still have internal gas explosions (especially throughout the night, dry mouth and acid - bad breath, and still do not have a normal BM.

Albeit, my symptoms have improved, and the book does say that 3-4 weeks are needed for improvements to begin, but I still don't feel right. I am very weak, always hungry (have lost 20 lbs), when am am up to exercising, my stomach swooshes with liquid (and uncomfortable and painful feeling). I am unable to stay up late. My BM have some form, but are not bulky, adn mucous still appears regularly. I tired a Vit B complex liquid (no sugars - just glycerin and stevia - WOW......what a BAD reaction!!! worst diarrhea to date!!!.

MC info is vague and limited. Diet structure is a puzzle to me. Learning about SCD, Paleo, Foodmap, etc, is complicated, daunting. In Canada we have medical labs callled Gamma-Dyna, adn they offer food allergy blood tests ($400), but I'm not sure how they compare to the ones described in this forum? As a Canadian, can I access this lab you mention? Is the Cholestramine an effective treatment? How do I begin a proper diet? Will I ever have a normal BM again? Will I ever have a normal life again? I have a young family, and the MC has taken reins of my professional and personal life. What advice can you offer? What should I ask my specialist upon my next appointment?

I hope I've made my message both brief and clear. I know I've asked alot of questions, and I'm sorry for that. I just need help navigating through the beginning stages of this disease. Thanks for listening, and understanding.

Yours in hope and perseverance,
Frank

[tex]

Hi Frank,

Welcome to our Internet family. I need to get to bed, so I'll have to cut this shorter than usual.

To begin with, MC can (and often does) affect any organ in the body, so you are correct, and your doctors are confused.

The main problem with the SCD is that most of us are sensitive to the casein in all dairy products, so the yogurt is probably causing a lot of your gas and diarrhea. If you remove the dairy from the SCD, that basically leaves the paleo diet. The paleo diet is a good place to start, but we can't eat all paleo foods (especially early on, because we have to limit fiber due to the fact that fiber is very irritating to a hyperinflamed gut).

Anyone in the world can order tests from EnteroLab, and we have found that their stool tests are the only tests in the world that can accurately and reliably detect food sensitivities. None of the others even come close.

My impression of MC is that it ignores healthy living and preys on people whose shoulders have been weighed down by more than their fair share of stress. IOW, IMO stress trumps virtually everything else when it comes to triggering MC, unfortunately.

You seem very motivated, and I can tell you from experience that if you are motivated, and willing to do what is necessary, you can definitely get your life back. It won't be identical to our old life, because we have to change our lifestyle somewhat to accommodate the new reality, but it will be just as enjoyable and fulfilling. It will be the new norm, and many of us feel that we are much better off now than than we were before the disease entered our life, but I realize that doesn't make much sense to someone just beginning the journey back to health. You'll see what I mean when you get your life back.

Again, welcome aboard, and please feel free to ask anything. No one truly understands this disease unless they actually have it. We'll try to help in any way we can, because we can feel your pain.

Tex

[nerdhume]

Welcome to the group, Frank.
Your journey is similar to most of us here. I agree with Tex, the yogurt is probably the problem, most of us can't tolerate dairy.
The enterolab test shortened my journey to find all my intolerances. I remember wondering why eating canned soup made me worse, until I found out soy was my biggest problem and also discovered it is in virtually all processed food.
As Tex said you seem very motivated and I am sure you will get your life back, be patient, it will take time.

[frank]

thanks for your kind words and positive energy. I do believe I will conquer this, and am appreciative of your help as I try and navigate the initial stormy waters. Here are some follow up questions: what is the general cost of an entern (sp) lab food intolerance test?, what do the acronymns preceding stress in your reply mean?, do you have any experience or knowledge about the cholestr. drug prescribed to me? Is the damage to my villi permanent or repairable?

I've kept this short for now, as these are the most important questions at this time. Thanks once again for your support and willingness to share your expertise.

Oh, one other question, vitamin B12 (or a b-complex), Ellaine G. highlights the need for this to help food absorption in her 'Breaking Vicious Cycle' book. What info can you provide?

Wishing you all a joyous day,
Frank

[tex]

Sorry for the confusion. "IOW" means "in other words", and "IMO" means "in my opinion". You can see a post that includes and describes a list of abbreviations commonly used on this site here:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=845

Most members order a combination of the A1 and C1 Test Panels, because the combination provides the most useful tests for our money. You can see a description of that combination at the link below. The cost of the combination of both panels is $539 in U.S. dollars. However, if funds are tight, some members order only the A1 Panel (at $269 in USD), which tests for antibodies to the 4 main food sensitivities, namely gluten, dairy, soy, and egg. If they are unable to achieve remission by avoiding the foods that test positive, then they may order the C1 Panel (at $369 in USD), which tests for 11 other antigenic foods known to be a problem for some MC patients. Ordering the combination saves $99.

https://www.enterolab.com/StaticPages/T ... #PanelB2C2

To save time, I'll just quote what the book (Microscopic Colitis) says about bile acid sequestrants (such as cholestyramine), from pages 43–44:

Bile acid sequestrants
Medications in this category are known as hypolipidemic agents, because they restrict the reabsorption of bile acids. They were originally developed for the purpose of lowering cholesterol levels, but they are often prescribed for patients with diarrhea, especially following gallbladder surgery, to tie up bile salts that might otherwise cause diarrhea. These medications, including cholestyramine, colestipol, and colesevelam, tend to cause constipation, and for this reason, some doctors prescribe their use by patients with MC.

One of the problems with this group of medications is that while they may be somewhat effective at reducing, or even stopping diarrhea, they sometimes cause an increase in bloating and pain, that tends to limit their appeal. Some doctors may possibly prescribe bile acid sequestrants for the treatment of MC because they mistakenly believe that MC and IBS are similar, or possibly the same disease, and therefore they assume that an IBS treatment should be effective for MC. Others prescribe such drugs because they are simply looking for a way to control the diarrhea, without regard for the need to suppress the inflammation that’s causing the symptoms. As the old saying goes, “Anything is fair in love and war”, and perhaps that should be extended to include the treatment of MC as well. Because bile acid malabsorption, along with fat malabsorption, seems to be a somewhat common problem for most patients who have microscopic colitis, treatment with a bile acid sequestrant sometimes brings at least some measure of relief from diarrhea, even though this amounts to treating a symptom, rather than treating the cause of the inflammation.

Your villi will slowly heal after the inflammatory foods are removed from your diet. Kids heal very quickly (usually in less than a year), but it typically takes adults 3–5 years to heal, and as we get older, or if we have damage that has existed for many years, it can take longer to heal, and we may never heal completely. But we will certainly heal well enough for normal digestion.

Yes, many of us eventually develop a B-12 deficiency, because B-12 is absorbed in the terminal ileum, and the terminal ileum is typically the area with a maximum amount of inflammation associated with MC. This causes B-12 and fatty acids (bile salts and other fats) to not be absorbed correctly. Unused bile acids are typically reabsorbed in the terminal ileum and recycled by the body, but with an IBD, they are not absorbed properly and they are dumped into the colon, which can cause irritation and diarrhea, thus the reason why some GI docs prescribe bile-acid sequestrants.

But about the B-12, since ordinary B-12 vitamins (in the form of cyanocobalamin) are not absorbed properly in the terminal ileum, we absorb it much better if we use the activate form of B-12, (methylcobalamin). Methylcobalamin is available in the form of sublingual lozenges, designed to dissolve under the tongue, where they are absorbed and go straight into the blood stream (thus bypassing the malabsorption issue in the gut). Sublingual B-12 is at least as effective as the injectable form, and its much easier to use than going to a doctor for injections. Since adequate amounts of folate (B-9) are necessary in order for the body to properly utilize B-12, sublingual lozenges are available that contain 1,000 mcg of methylcobalamin and 400 mcg of folate (which is a good balance). If you have a deficiency, you may need to use more than 1 per day.

And remember that most of us are deficient in vitamin D (IBDs deplete vitamin D, and Entocort also depletes vitamin D), so it definitely helps to take a good vitamin D supplement to correct the deficiency that can compromise the functionality of our immune system.

Thanks, and I hope that your day is going well, too.

Tex

[Gabes-Apg]

Frank
welcome to the group - apologies that you had to find us

Is the Cholestramine an effective treatment?

I used this for a few months, it does help to remove water from the motions (ie reduce the D), but it doesnt treat the root cause of the inflammation and cause of D.
Long term this is not a good option. cholestramine is harsh on your teeth and enamel. It also changes the chemistry of the digestion process will affect nutrient absorption.

How do I begin a proper diet?

As you read through some of the posts, there is no specific diet plan that is guaranteed to work for every MC'er. the key to success is figuring the eating plan that works best for you....
well cooked, bland, low fibre type meals work well. Gluten Free GF and Dairy Free DF is definite starting point. Soups, stews, type thing. Avoid fibre, salad, raw fruit for a while. many can not tolerate onions or peppers at first.
Home made bone broth is a fantastic foundation for gut healing, nutrient filled eating plan. Use this to make soup and stews etc.

Will I ever have a normal BM again?

Once people remove major triggers and minimise other triggers as much as possible, normal pooping returns!

Will I ever have a normal life again?
I have a young family, and the MC has taken reins of my professional and personal life. What advice can you offer?

Read the success stories area, - What people have done, what they have achieved, and how long it took are in these posts.
this will give you an idea of what is needed. you can get your life back!!

I wont lie, it is not easy and quick. It will take time, effort, patience, tenacity to stick with strict eating plans and lifestyle changes....
there is a bit of mental and emotional transition as you work through these changes and accept that MC is for life.

What should I ask my specialist upon my next appointment?

Not many GI specialists understand MC. not many medical practitioners will acknowledge that diet management is key to success.
some doctors can be a bit threatened/uncomfortable about people using the advice of an internet forum. For now, if it is was me, I would just listen to what the specialist says. Come home and embrace the diet changes.
For many here, we do 'informed self care' - dont dis-regard specialists/medical practitioners we need them, and some can be supportive of diet management of IBD's etc. the best success comes from listening to your body, reading and researching and making informed choices that best suit you.

Hope this helps!
good luck for your MC healing journey!

[tex]

Not many GI specialists understand MC. not many medical practitioners will acknowledge that diet management is key to success.
some doctors can be a bit threatened/uncomfortable about people using the advice of an internet forum. For now, if it is was me, I would just listen to what the specialist says. Come home and embrace the diet changes.
For many here, we do 'informed self care' - dont dis-regard specialists/medical practitioners we need them, and some can be supportive of diet management of IBD's etc. the best success comes from listening to your body, reading and researching and making informed choices that best suit you.

Excellent, excellent advice.

Tex

[frank]

This is excellent and encouraging advice. Confirms alot of my own practices and beliefs, which is reassuring. I will continue on my basic diet for now, as I am improving slightly, and will wait to hear back from all my test results before moving to the next step. I have been learning so much so quickly, but listening to each of you, I realize there is a long journey ahead of me. However, it is said one bite at a time is the only way to eat an elephant.....Thanks to all for your warm welcome and support, I hope the help you have extended to me will shower health and happiness upon you .

I forgot to mention in earlier post how beneficial yoga has been for me. Not sure if you've given it a try, but it has offered a therapy unlike any other for mind, body and spirit. I have no yoga experience, and am teaching myself. Great DE-stressor, FYI.

Talk soon, goodnight,
Frank

[Gabes-Apg]

Frank
that is great that you are doing yoga. the mindfullness approach has helped many here adjust to life with MC!

for while it will be 2 steps forward, 1 step back... there will be hiccups, learnings, small setbacks along the way
dont get discouraged... its about progress.... not perfection....

you may not notice improvement each day, but if you reflect back over the period of a few weeks, you will see slight improvements

[Leah]

Welcome Frank! You have gotten great advice so far and if you would like more info, you can order Tex's book on Microscopic Colitis by clicking on the picture of it on this page.

It sounds like you are determined to figure this out, so I am sure you will have success. My original "healing diet" consisted of all cooked proteins, broth, eggs ( although some of us can't have eggs), Cooked veggies like squash, carrots, and green beans. White rice and it's products ( like rice cakes). Avocados, sweet potato, and olives. GF Chex cereal with unsweetened almond milk, and small servings canned peaches or applesauce when I wanted something sweet. I also was able to eat corn tortillas and corn chips as long as canola oil wasn't used. I stick to olive oil, safflower, or coconut oil. I was also able to eat almonds and cashews. NO Gluten, soy, dairy, tomato products, peppers, spicy, potatoes ( which I later added in after 6 months), caffeine, alcohol, or too many processed foods.

Of course, everyone is slightly different and I hope you are able to do the Enterolab testing to make things easier, but I wasn't able to. I am here to tell you that you CAN get your life back. I am a personal trainer and was also living a healthy lifestyle when this hit. Our genes are partially to blame. Anyway, I am over there years post MC diagnosis and I have been able to add many foods back into my diet over time. Raw vegetables and salad , a little fruit, chocolate, baked GF goodies, potatoes and french fries, alcohol, decaf coffee ( with coconut milk). I can even eat Mexican food out as long as I say "no cheese" and Thai noodle dishes have become one of my favorites ( no soy sauce). Most of the time, I have perfectly formed, no toilet paper needed bms :) There are days where I get sloppy with my food or I pick up a bug and have to revert back to my first "safe foods" for a day or two, but nothing long term. So, YES, YOU CAN GET YOUR LIFE BACK! Patience and diligence nows pays off down the road big time.

Good luck! Leah

[Polly]

Hello Frank and

You have already received some great advice about using diet as the primary treatment for MC, and I wholeheartedly agree!

I just wanted to provide some updated info related to your question about the cholestyramine you are using as a bile acid sequestrant. There have been some recent, interesting studies done on BAD (bile acid diarrhea) - mostly in England because they have a diagnostic test for bile acids that we do not have here. BAD is caused by an excess of bile acids in the colon. Normally, the bile acids that are released and utilized for digestive purposes are absorbed in the terminal ileum (last part of the small intestine) and never make it into the colon. However, in the case of BAD, excess bile acids are produced which do travel into the colon.

One study showed that over 40% of those with MC (and 30% of those with IBS-D (irritable bowel syndrome with diarrhea) had bile acid diarrhea. It was more common in cases of LC (60%) compared to CC (27%). In fact, it is possible that BAD may often play a pathophysiologic role in MC. In England they estimate the prevalence of BAD to be 1% - that's a huge number of people.

Excess bile acids are extremely corrosive to the colon. It is thought that, over time, they may eventually cause colon cancer. If nothing else, they cause inflammation of the colonic mucosa and greatly speed up colonic motility - both of which lead to diarrhea. The sequestrants, like cholestyramine, bind these bile acids and prevent them from getting into the colon. So these meds ARE treating an actual problem.....a problem that may actually be part and parcel of many MC cases or at least be making MC worse. Sequestrants can help to reduce the colonic inflammation/dysmotility due to any excess bile acids.....they don't "suppress the inflammation" - they help to prevent the inflammation due to excess bile acids. Of course, dietary changes are still necessary to address the part of the inflammation caused by MC. Both are important.

Cholestyramine can be harmful to teeth, as Gabes said, because the powder contains a lot of sugar. Fortunately, there are newer sequestrants - two that come in a tablet form - Cholestid and Welchol (colesevelam). The latter (the newer one) is said to have fewer side effects than the earlier ones and does not affect the absorption of other drugs/vitamins like the older meds.

I suspect that BAD is more of a problem for MCers than previously thought. I am wondering if it was a factor for those members here who had such recalcitrant cases and couldn't reach remission despite months/years of careful diet. ????


Here is one article:
http://www.medicine.virginia.edu/clinic ... Oct_12.pdf

Good luck on your path to health! In my opinion, it is certainly worth trying the cholestyramine to see if you are one who is helped by it.

Polly

[Erica P-G]

HI Frank,

I am very new to this site also. I have been reading my eyes tired lately, and I have begun a Low Histamine diet for a little while to see if this may help me. I have LC diagnosed April 2012 and I haven't completely healed yet, but am working on it ;-) I also noticed once I followed a Budesonide treatment that Allegra has been my remission med since. I noticed it was helping me with my recent stopping of it, boy did I start it back up quickly...this is what led me to look into the Low Histamine diet.

If you find that once you get settled and food choices work for you that is great! If not you may try an antihistamine to see if it calms the inflammation any better, this may be a sign of High Histamine that is treatable too ;-)

I hope to see results pretty soon, you never know what will help :-)

Hope you have noticeable healing soon.
Cheers
Erica

[dfpowell]

Polly,

Thanks for the information, it is nice to hear from you.

[jessica329]

Hi Frank,

In the early stages I kept a food journal. I recorded what I ate and how I felt throughout the day. I was able to identify a reaction to gluten and dairy. Since eliminating the two I have been able to live without medication and flare-free (for the most part). I lucked out and found a wonderful, supportive and highly knowledgable GI. However, I still do my own research and reach out to the forum.