What We Have Learned About MC

[Polly]

You have been diagnosed with Lymphocytic or Collagenous Colitis, aka Microscopic Colitis (MC), which is considered to be a rare form of Inflammatory Bowel Disease (IBD). The symptoms may include explosive diarrhea 10-20 (or more) times a day, fatigue, joint pain, stomach pain or discomfort , gas, and bloating among others. MC is thought to be an autoimmune disease and therefore we are more susceptible to other autoimmune diseases.

We have found there is not a lot known about this disease and wanted to share what we have learned either from each other or from Dr. Kenneth Fine, a board-certified gastoenterologist researching this disease. You may visit his website at www.finerhealth.com. We do not claim to have any medical background, and we are not making any specific recommendations for treament. We are simply sharing treatments (most of them prescribed by our own physicians) that we have found have worked for us. What works for one may not work for another.

We have found that this disease is rare enough that many doctors may not know how to treat it. It is often misdiagnosed as Irritable Bowel Syndrome (IBS) and can only be diagnosed by examining biopsies taken during sigmoidoscopy/colonoscopy under the microscope. Also, much of the newest MC research is unpublished at this time, which means that most physicians do not have access to it. It is very important to find a Gastrointestinal Specialist and Primary Care Physician who have open minds, a positive attitude, and will work with you.

Dr. Fine has attributed a sensitivity to gluten to be a factor in many suffering from MC. Gluten is a protein found in wheat, rye, barley, and oats. The gluten sensitivity that goes with MC is usually not full-blown celiac disease but is in an earlier or milder stage. Because of this, the standard blood tests /endoscopy done to diagnose celiac disease will often be negative, even in the face of significant gluten sensitivity. Dr. Fine has developed a stool test that will identify the gluten sensitivity that goes along with MC. He has published an article on MC and how it relates to celiac disease in the American Journal of Gastroenterology in August of 2000: http://www.journals.elsevierhealth.com.

Many of us have found great relief, if not complete remission of MC symptoms, by eliminating gluten from our diets. Eliminating gluten from the diet can be a challenge, especially since it is “hidden” in so many processed foods. For example, soy sauce is usually made from wheat, malt flavoring is often made from barley, “modified food starch” likely contains wheat. Gluten may be found in medications, vitamins, and artificial dyes/colorings/preservatives. This website has support and information for those interested in trying the gluten-free diet. Another good resource is www.celiac.com.

Some who are gluten-sensitive find that they may also be intolerant of other foods, most commonly dairy, soy, yeast, eggs, etc. In these cases, it may be necessary to eliminate other foods in addition to gluten in order to treat the MC.

Listed below are the medications prescribed to different MC sufferers on this site that we have found work, as well as the “no-nos” we have found. We have compiled this list from the members of the support group as well as Dr. Fine’s website. Please discuss this with your doctor to find the best treatment for you.

NO-NOS:

NSAIDS (non-steroidal anti-inflammatory drugs), Aspirin, Ibuprofen, Naproxen …

FIBER (particularly INSOLUBLE fiber) often seems to cause more gas and bloating. It has been known to help Irritable Bowel Syndrome (IBS), but many find it does not help with MC; it may actually make it worse.

ANTIBIOTICS are often necessary but can make the MC worse. ( Some have noticed that Cipro actually seems to help the MC ). Also, while on antibiotics, it may help to replace the “good bacteria” in the gut, with a probiotic (lactobacillus GG).

HRT (hormone replacement therapy) HRT - By all means you should take it if your doc prescribes it. The "no-no" refers mainly to taking it for menopausal symptoms only. We are not sure of the relationship between MC and HRT (whether it has been proven or is just suspected because MC is so common in post-menopausal women who have taken HRT).

LANSOPRAZOLE - Proton pump inhibitors, especially lansoprazole (Prevacid), have been documented to cause MC
.

TREATMENTS TO HEAL THE GUT:

Listed in order of least (or no) side effects first.

Gluten Free diet - Some may be dairy-intolerant, too, and may need to eliminate lactose (milk sugar) or casein (milk protein) or both. Other food intolerances may include soy, yeast, eggs, other grains, etc.

Probiotic - Lactobacillus GG (like Culturelle) helps boost the good bacteria in the gut. It can be ordered on-line at http://www.culturelle.com./ (Culturelle is a brand name). Although many have had good results with probiotics, some have felt worse when taking them.

Pepto Bismol (along with GF diet), 8 tablets a day for 8 weeks (treatment published by Dr. Fine).
note: Pepto Bismol contains Bismuth Subsalicylate and should not be taken long-term. Check here for a list of serious and non-serious side effects:
http://www.drugs.com/MMX/Bismuth_Subsalicylate.html
If you wish to attempt this treatment you must stop after the 8 weeks.

Asacol/Colazal - anti-inflammatory drugs (The casings may pass in the stool and resemble the whole pill; this is normal).

Entocort - (Budesonide) - a steroid that acts locally in the gut and therefore has fewer side effects than prednisone (a drug with generalized and considerable side effects). Some here report excellent results with Entocort.

Lotronex - back on the market with careful prescribing restrictions; traditionally prescribed for diarrhea-predominant IBS; however, some here were prescribed it and found it helpful

Prednisone – steroid and immunosuppressant

Imuran - immuno-suppressant drug (not often prescribed)


SYMPTOMATIC RELIEF:

Tylenol (acetaminophin) pain reliever

Ultram- moderate to severe joint pain (by prescription)

Lomotil (by prescription) and Immodium (over-the-counter)- antidiarrheals

Levsin (Hyoscyamine)- anti-spasmotic, usually prescribed for IBS.

Questran (cholestyramine) - used primarily to lower cholesterol and for gallbladder obstruction. The most common side effect is constipation, and some with MC have found relief with it.