Still another document for consideration

Polly · Post by **Polly** » Tue May 31, 2005 6:44 am

Hi Friends,

I want to post another document, which you may recall seeing. It was originally developed by Sally, Peg, Gaea, and me for use on Sally's old board. Last I looked, Andy has kept it on his board. It was developed to share our experience with MC with newbies. It is a little long, but I would appreciate your reading it and commenting. Do you think this could be in FAQ format? Or perhaps the diet stuff could go to the diet room and the medication info to the medication room? Whaddya think?

You have been diagnosed with Lymphocytic or Collagenous Colitis, aka Microscopic Colitis (MC), which is considered to be an 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. 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. Also, much of the newest MC research is unpublished at this time, which means that most physicians do not have access to it.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.medicinedirect.com/medline/r ... litis+fine.

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 .

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 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 actually makes 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. 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.

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).

Pepto Bismol (along with GF diet), 8 tablets a day for 8 weeks (treatment published by Dr. Fine).
note: Pepto 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.

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

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

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

Thanks for your help!

Polly

Peggy · Post by **Peggy** » Tue May 31, 2005 7:03 am

Polly - I added a note to the Pepto treatment.

Arlene · Post by **Arlene** » Tue May 31, 2005 7:19 am

That way the newbies will find it for sure. I think it's a great idea that you brought it over here.

Much love
Arlene

Carrie · Post by **Carrie** » Tue May 31, 2005 12:51 pm

Hi Polly. Just a few suggestions (mostly "cosmetic" except for the Fiber comments):

1. paragraph 1, 1st sentence: add the word rare "...which is considered a rare form of Inflammatory..."
2. paragraph 2, 1st sentence: add Dr. Fine's first name "...or from Dr. Kenneth Fine..."
3. paragraph 3: maybe add this after the 1st sentence "MC is sometimes [often???] misdiagnosed as Irritible Bowel Syndrome (IBS). Biopsies obtained by sigmoidoscopy or colonoscopy generally are necessary to diagnose LC or CC."
4. NO'NOs: Fiber...This is just my opinion, but I think that SOLUBLE fiber does help (numerous sources are also gluten free). It's the INSOLUBLE fiber that causes most problems.

Thanks for all your efforts on this, Polly. I know how difficult it is to write something that is comprehensive without being too long!

Love, Carrie

mle_ii · Post by **mle_ii** » Tue May 31, 2005 12:56 pm

And I'm not so sure about the probiotics. I could have been something else I suppose, but the day after taking probiotics I felt like crap.

annie oakley · Post by **annie oakley** » Tue May 31, 2005 1:13 pm

I think you are awsome doing all this And I like the article. Love Oma

Mars · Post by **Mars** » Tue May 31, 2005 2:01 pm

Great job! Is the intent for it to go in the Welcome forum or the Q & A? I like the paragraph form.

I remember reading this (or one like it) on the "other" board when I first joined. It was comforting to know that the symptoms I had were "normal" for thise disease. I also like the list of most common treatments for MC and things that are known to cause problems.

Too bad we aren't "NORMAL/COMMON"

Once again...GOOD JOB!

Marsha · Post by **Marsha** » Tue May 31, 2005 2:04 pm

Just a couple comments, maybe useful, maybe not:

1. Include Questran to the list?

2. Some can't take PB pills (they cause more D), but the liquid is tolerated. This might be due to the type of sugar in the pills.

3. Probiotics make me much worse, Culturelle, and a variety of others that I've tried.

I really like this thesis because it mentions diet and medications that may help while a person is experimenting with diet, or without the diet.

ronipow · Post by **ronipow** » Tue May 31, 2005 2:56 pm

I think Dr. Fine is no longer recommending the PB treatment because so
many resume D after the treatment and I think he's reconsidered the "Curelle" probiotic because it contains dairy.

Just a note, you may feel worse after taking a probiotic because of the elimination of the bad bacteria dying off. I know I read that some where, just not sure where.

Roni

Umber · Post by **Umber** » Tue May 31, 2005 7:29 pm

I think it awesome that your adding this to our site, after all who wrote it?!

I know this was very helpful information for me. I don't think I would take anything away from it. As we know so well, what works for one may not do diddly squat for another.

I loved Cuturelle, I only stopped taking it due to the expense. I still take it when I have to go on antibiotics.

Also the addition of new info is good! Its always a good idea to re-visit this information on occasion!

Good job Polly! I would hate to see all that good information that has been gathered be lost.

Hugs,

Lori

Babci · Post by **Babci** » Tue May 31, 2005 8:32 pm

Hi Polly

As usual, wonderful job. Really appreciate all your hard work!!!!

I like how you just list the Rx w/no bias. Also like the cited references so people can check out for themselves. Just 1 thing though. When I did a board certification search on Dr. Fine, I just found Internal Medicine & not Gastroenterology. Did I miss something? Love & light, Rita

Polly · Post by **Polly** » Fri Jun 03, 2005 7:56 pm

Hi All!

OK, I just moved this document over to the newbie room and then incorporated all of your comments. Please review it there and make sure that I have captured your suggestions accurately. Babci - on Dr. Fine's website, it states that he received his board certification in Internal Medicine in 1989 and in Gastroenterology in 1993.

The point about the "form" of PB is a good one. Does anyone remember exactly which forms were the best.......between liquid, caplet, and chewable? I know we discussed this in detail in the past. Peg - can you track it down on the old board if no one remembers for sure? Thanks.

Please give me your comments once again! And thanks for your input so far.

Polly

Marsha · Post by **Marsha** » Fri Jun 03, 2005 8:27 pm

Hi Polly, A little late, but . . do you want to include references to other doctors who have contributed, or are doing research that has helped MCers? One whose name I've heard a couple times is Dr. Fasano (wasn't it Carrie who consulted him? and his name just came up again in reference to food labeling). Just a thought.

harvest_table · Post by **harvest_table** » Fri Jun 03, 2005 10:45 pm

Polly,

The board is really shaping up- and LOOKING GOOD. Thanks for all your hard work. I hope you are keeping up with your studies too. Love, Joanna

Polly · Post by **Polly** » Sat Jun 04, 2005 5:06 am

Marsha,

I think I am the one who has been in touch with Dr. Fasano. And Carrie was very interested in his research, too. I promised to meet with him and find out more about his research and upcoming clinical trials. I haven't done so yet because of my busy schedule but hope to arrange a meeting with him in the next few weeks. Will keep you posted.

Joanna,

School is over now until the fall semester. I miss it!

Love,

Polly

MICROSCOPIC COLITIS SUPPORT

Still another document for consideration

Still another document for consideration

Pepto

You could place it in both