Is this true? 38 months give or take, run its course?

Meggie1129 · Post by **Meggie1129** » Sat Sep 26, 2015 7:14 pm

I am a new diagnosis of CC. In a few of the medical journals I read, it said that while quality of life is rough, MC is relatively benign and seems to run its course in a majority of people in a mean average of 38 months, with about 1/4 of people still experiencing occasional diarrhea. Does this seem to be the case for people, that eventually the flares just kind of peter out? How often do people tend to experience flares, and for how long? Thanks!

Marcia K · Post by **Marcia K** » Sat Sep 26, 2015 7:36 pm

Hi, Meggie. I don't know if I'm the norm, but my D (with LC) stopped at the end of the eight weeks of Pepto Bismol. The only flares I have had since then are when I got glutened.

Post by **tex** » Sat Sep 26, 2015 8:34 pm

Hi Meggie,

IMO those claims are little more than cruel BS, based on faulty research, done many years ago. Here is my opinion of that claim, quoted from pages 35–37 of the book Microscopic Colitis:

Approximately 20 years after microscopic colitis was first described, some researchers suggested that it might be unnecessary to use medications to treat the disease, based on conclusions reached in studies that showed that the disease normally follows a benign course, and that symptoms often resolve, even without treatment, after a few years. Anyone who does a search of the literature will find many sources that repeat that claim, insisting that microscopic colitis is self-limiting, and the symptoms will resolve, with or without any medical intervention, after a period of several years, implying that the disease will go into long-term remission with or without treatment.

It appears that this mistaken belief is so ubiquitous in the literature, that for a time, at least, a majority of gastroenterologists were misled into accepting it as truth. Apparently, some still believe it to be true. The source of this misconception can usually be traced to one or both of two followup studies that showed that most cases of MC resolved with or without treatment, within an average period of slightly over three years. In one study of a group of patients with collagenous colitis, (published in 1997), it was concluded that 63 % of the group had “lasting resolution of symptoms after a mean 3.5 year follow-up”.1

In another study of a group of patients with lymphocytic colitis, (published in 1998), the data showed that diarrhea was no longer a symptom for fully 93 % of the group, and examination of biopsy samples showed that their intestinal epithelial cells had returned to normal, in 82 % of cases, by the end of a period of an average of 38 months after the initial onset of the disease.2

Note that in the research study published in 1998, the researchers did their followup examinations with a sigmoidoscope, rather than with a colonoscope, and they justified that procedure by claiming that with lymphocytic colitis, the intraepithelial lymphocyte count does not vary between the different segments of the colon, implying that biopsy samples taken from the rectum and sigmoid colon by using a sigmoidoscope can be considered to be accurately representative of the entire colon. As mentioned in the previous chapter, that claim has been disputed by subsequent research studies, that showed that at least 10 % of cases are typically missed when a sigmoidoscope is used.3

In addition, while the researchers did not clearly define the selection criteria used to pick the subjects in their study, a close examination of the article suggests that they may possibly have used some form of selection bias. It appears that they may have preferentially selected subjects who experienced sudden onset of symptoms, thereby excluding subjects who had been dealing with diarrhea issues for years. Experience shows that sudden onset of diarrhea is often associated with drug-induced microscopic colitis, that we know can often be resolved simply by discontinuing use of the drug that caused the inflammation. By being so selective, they ended up with only 27 patients on which to base their study, so it’s not surprising that they were able to reach such an unrealistic conclusion. The other research study that was cited, involving patients with collagenous colitis, only looked at 31 cases, so again, this raises the question of possible selection bias or some other form of creative data manipulation, that might have played a critical role in leading to conclusions so divergent from the real life experiences of the vast majority of patients living with MC.

And here are the 3 references noted in that quote:

1. Goff, J. S., Barnett, J. L., Pelke, T., & Appelman, H. D. (1997). Collagenous colitis: Histopathology and clinical course. American Journal of Gastroenterology, 92(1), 57–60. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/8995938

2. Mullhaupt, B., Güller, U., Anabitarte, M., Güller, R., & Fried, M. (1998). Lymphocytic colitis: Clinical presentation and long term course. Gut, 43(5), 629–633. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/article ... p00629.pdf

3. Nielsen, O. H., Vainer, B., & Schaffalitzky de Muckadell, O. B. (2004). Microscopic colitis: a missed diagnosis? Lancet, 364(1), 2055–2057. Retrieved from http://www.med.upenn.edu/gastro/documen ... olitis.pdf

Many of us here have had MC for many years now, and I can assure you that if we slip up on our diet, we will pay the price in the bathroom. I've had the disease for over 15 years now, and others here have had it for even longer.

How long do most flares last? Indefinitely, unless the proper diet changes are made.

Tex

Tor · Post by **Tor** » Sun Sep 27, 2015 4:57 am

I had CC for 20 years with a misdiagnosis of IBS. In 1997 my medical records mentions 4-5 BM's with D. By 2013 this had increased to 8-10. All this time the D was a permanent fixture in my life, slowly getting worse year by year. I would recommend against trying to wait it out ...

Marcia K · Post by **Marcia K** » Sun Sep 27, 2015 6:34 am

I should say, too that it was the dietary changes that prevented the D from returning. After doing research online I immediately stopped gluten. As I gained more insight from this forum, Tex's book and testing through EnteroLab I eliminated dairy, soy and many other foods from my diet. I've been fortunate and haven't had to take any antibiotics which can cause a flare for many of us.

JLH · Post by **JLH** » Sun Sep 27, 2015 10:51 am

Over seven years of MC for me.

sonja · Post by **sonja** » Sun Sep 27, 2015 12:36 pm

Hi Meggie,

I have LC since 5 years now and its only under control because of my strict diet (gluten, soy and dairy free and some other things, like some E-numbers).
Success!

Sonja

DebE13 · Post by **DebE13** » Sun Sep 27, 2015 3:05 pm

Eight years of MC for me. Diet has helped tremendously but D is still my norm- if that makes sense.

nick · Post by **nick** » Mon Sep 28, 2015 5:08 am

Oh! That is interesting...I have just posted on this subject. My doc said 18 months...38 months is a long time to wait but if the doctors are right it would be nearer the mark...in my case at least...and if my forthcoming experiment proves successful

patc73 · Post by **patc73** » Tue Sep 29, 2015 9:35 am

MC is a forever condition that can be controlled by STRICT diet, but that seems to recur whenever your system finds something new to react to. It changes and each individual is different. Yesterday, I received the new Family Circle October edition, which has an article about ulcerative colitis. I was celebrating that colitis was receiving national recognition, until the last paragraphs of the article. The patient insisted that she achieved "full remission" with steroids and is now back to normal. (??!!??) Also troubling is a current TV commercial that's been airing lately for Humira, showing a patient "in remission" eating an ice cream cone. We only wish!!

mcardle3 · Post by **mcardle3** » Tue Sep 29, 2015 10:27 am

Marcia K wrote:Hi, Meggie. I don't know if I'm the norm, but my D (with LC) stopped at the end of the eight weeks of Pepto Bismol. The only flares I have had since then are when I got glutened.

So Marcia, you cut the gluten and took how much Pepto. My doc has me doing the same, and taking 3 tabs of Pepto 3 x daily. Does that sound about right?

What benefits have you noticed from what you have been doing?

I love the term, got glutened :)

nick · Post by **nick** » Tue Oct 06, 2015 4:23 am

Hi...here is my experience...so far. It seems as though it may agree with that which you have read in the medical journals.

My Microscopic Lymphocytic Colitis was diagnosed by colonoscopy/biopsy Dec 2011.

I suffered 40 months of symptoms which flared and subsided for no apparent reason. I tried various elimination diets without success.

I followed 29 months of strict GF diet including 6 months after the symptoms stopped. I was never sure whether my flare-ups were caused by accidental ingestion of microscopic amounts of gluten...or not.

After 6 months symptom-free I have started eating gluten again. I have eaten 1 bread roll (120g) each lunchtime for 6 days.

I have experienced no ill-effects at all. None!

My plan is to return to a gluten-free diet but I now know that I do not need to worry about ingestion of small quantities of gluten.

My reason for returning to the GF diet is because there may be some chance that my original symptoms were caused by a gradual build-up of damage caused by gluten. I have also found that the GF diet suits me very well. My homemade bread is excellent and I would never go back to regular pastry...GF is so much better!

This is my story...I seem to be the exception to the majority of the contributors to this site...but my experience does seem to agree with that of the medical journals that you have been reading.

The very best of luck to you!

MICROSCOPIC COLITIS SUPPORT

Is this true? 38 months give or take, run its course?

Is this true? 38 months give or take, run its course?

Not for me