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Rsolution of MC within 38 months? Sounds like a Fairy Tale

 
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Shar76
Adélie Penguin
Adélie Penguin


Joined: 06 May 2013

Posts: 54
User's local time:
2017 Sep 24 - 2:45 AM


Food Intolerances : IgA Deficient. (Enterolab didn't work for me) GF since May, 2013; SF, DF, EF again after Flare that began April, 2015. (had been able to add back in soy, dairy and eggs, but apparntly I did it too quickly)
Location: Lumberton, MS

PostPosted: Fri Jul 24, 2015 10:03 pm    Post subject: Rsolution of MC within 38 months? Sounds like a Fairy Tale Reply with quote

Good evening, Potty People

I've been speaking with an online friend who's a Dietician about various Intestinal/MC topics, and the subject of the benefits of probiotics in MC, if any, came up.

She sent me a link to a study that tested the probiotic VSL3 against Mescalamine in patients with MC. In reading the article, I came upon this quote:
Quote:
Therapy for MC is challenging and several drugs have been proposed largely based on case reports, uncontrolled studies and small randomised trials. Of the several agents, budesonide is found to be the most effective in inducing and maintaining remission, but relapse rates on discontinuation are very high. MC has a benign course with resolution of diarrhoea and normalisation of histology in over 80% within 38 months. Thus, the benefit of any drug treatment should be carefully weighed against its potential side effects.
B S Flag And my jaw dropped!! After I picked my jaw up and stopped reading, I thought I'd share this "wonderful" news with y'all. I'm almost at the 38 month mark! Yeahhhhhhhhhh!!

(Here's the URL for the article if any of you want to read it for yourselves http://bmjopengastro.bmj.com/doi/abs/10.1136/bmjgast-2014-000018 I couldn't finish it after reading the above quote )

And then, the coup de gras, she said the same thing My GI said........"it's unnecessary to make any dietary changes with MC". OK, I was born at night, but it wasn't last night. These people really frighten me. mallet pounding head

So, do any of you have thoughts on any benefits, or not, of probiotics with MC? Would love to hear them.


Thanks in Advance!


P.S. emptytoiletpaperroll Having a bit of a flare of the flare I wrote to you about in May. Haven't done anything different, still eating bland and still GF, SF, DF, & EF, but not "D-Free", sad to say. Any words of wisdom about this greatly appreciated too. crying
_________________
Shar in MS


Diagnosed CC 5/1/2013

Diabetes Type 2
RLS...since diagnosis of CC
Hypertension
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30485
User's local time:
2017 Sep 24 - 2:45 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Jul 24, 2015 10:19 pm    Post subject: Reply with quote

Hi Shar,

Those of us who have been dealing with MC for 10 or 15 years or more find mistaken beliefs such as that to be clear evidence of how poorly MC is understood my many in the medical profession. Chapter 4 of my book begins with the following paragraphs:

Quote:
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 references from 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/articles/PMC172...df/v043p00629.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/documents/Lance...scopiccolitis.pdf

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Shar76
Adélie Penguin
Adélie Penguin


Joined: 06 May 2013

Posts: 54
User's local time:
2017 Sep 24 - 2:45 AM


Food Intolerances : IgA Deficient. (Enterolab didn't work for me) GF since May, 2013; SF, DF, EF again after Flare that began April, 2015. (had been able to add back in soy, dairy and eggs, but apparntly I did it too quickly)
Location: Lumberton, MS

PostPosted: Fri Jul 24, 2015 10:37 pm    Post subject: Reply with quote

Amazing, Tex. Looks like this study from 2014 is still buying into the myth, same as they were in '97. Really discouraging. I thought knowledge would have broadened over time. I could be wrong. lol

With the flare of the flare I'm having, my husband thinks I should see the Doctor. Why, said I. All they're gonna do is try to push another pill at me. He doesn't understand they haven't a clue. And now I have to add dieticians to my list of the clueless. Sad!!

Thanks for the quote and links. I really do need to get a copy of your book.
_________________
Shar in MS


Diagnosed CC 5/1/2013

Diabetes Type 2
RLS...since diagnosis of CC
Hypertension
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30485
User's local time:
2017 Sep 24 - 2:45 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Jul 24, 2015 11:00 pm    Post subject: Reply with quote

Once medical articles are published, they are used as references until something better comes along. And doctors are probably like the rest of us — given a choice, we tend to choose to believe articles that say what we want to believe.

Regarding probiotics, a few members here have managed to find a probiotic that they feel helps. Most of us find that while we are recovering, probiotics either make no noticeable difference, or they make symptoms much worse. After we are in remission, then most of us are probably in a much better position to be able to tolerate a probiotic, and a fair number of members do find that they are able to tolearate a probiotic after they have mostly recovered. Of course, looking at it from another perspective, after we are in remission, much of the need for taking a probiotic no longer exists. But at least they aren't nearly as likely to cause an adverse reaction at that point.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Shar76
Adélie Penguin
Adélie Penguin


Joined: 06 May 2013

Posts: 54
User's local time:
2017 Sep 24 - 2:45 AM


Food Intolerances : IgA Deficient. (Enterolab didn't work for me) GF since May, 2013; SF, DF, EF again after Flare that began April, 2015. (had been able to add back in soy, dairy and eggs, but apparntly I did it too quickly)
Location: Lumberton, MS

PostPosted: Fri Jul 24, 2015 11:13 pm    Post subject: Reply with quote

They should read your book!!

After reading what you said about probiotics, I think I'll lay off. It would just be adding another unknown into the already soupy mix.


Thanks!
_________________
Shar in MS


Diagnosed CC 5/1/2013

Diabetes Type 2
RLS...since diagnosis of CC
Hypertension
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ldubois7
Rockhopper Penguin
Rockhopper Penguin


Joined: 19 Feb 2013

Posts: 1253
User's local time:
2017 Sep 24 - 2:45 AM


Food Intolerances : Gluten, dairy, eggs, soy
Location: Pennsylvania

PostPosted: Sat Jul 25, 2015 8:18 am    Post subject: Reply with quote

Hi!

I have tried probiotics many times since my MC diagnosis. I am taking Prescript Assist now.
It always seems that I do well on the probiotic for the first month I'm on it, but then it's effects are null.
Maybe it's already done its job?

If you can eat fermented veggies (which I can't) that might be a better way to go to get the good bacteria.

Good luck!
_________________
Linda :)

LC Oct. 2012
MTHFR gene mutation and many more....
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Shar76
Adélie Penguin
Adélie Penguin


Joined: 06 May 2013

Posts: 54
User's local time:
2017 Sep 24 - 2:45 AM


Food Intolerances : IgA Deficient. (Enterolab didn't work for me) GF since May, 2013; SF, DF, EF again after Flare that began April, 2015. (had been able to add back in soy, dairy and eggs, but apparntly I did it too quickly)
Location: Lumberton, MS

PostPosted: Sat Jul 25, 2015 1:35 pm    Post subject: Reply with quote

Thanks, Linda



I haven't tried fermented vegetables but what you say makes a whole lot of sense. I think I'll wait a bit till my tummy calms down b4 trying tho.


My prior experience with probiotics is similar to yours. I puzzle with do they work, don't they and then I quit. It's just that now I have this dietician friend pushing me to try ASL3, but I wanted to run it by the group first because it's VERY expensive and really, does it work for us MC'ers?


I think the best course of action for me now is to not change anything till I'm on a more even keel.
_________________
Shar in MS


Diagnosed CC 5/1/2013

Diabetes Type 2
RLS...since diagnosis of CC
Hypertension
Back to top
ldubois7
Rockhopper Penguin
Rockhopper Penguin


Joined: 19 Feb 2013

Posts: 1253
User's local time:
2017 Sep 24 - 2:45 AM


Food Intolerances : Gluten, dairy, eggs, soy
Location: Pennsylvania

PostPosted: Sat Jul 25, 2015 1:58 pm    Post subject: Reply with quote

Shar,

That sounds like a good plan! My experience has always been that less is better for us!

Best of luck on the healing road!

😊
_________________
Linda :)

LC Oct. 2012
MTHFR gene mutation and many more....
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Gigi
Adélie Penguin
Adélie Penguin


Joined: 06 Aug 2014

Posts: 80
User's local time:
2017 Sep 24 - 2:45 AM


Food Intolerances : gluten, soy, eggs
Location: The Woodlands, Texas

PostPosted: Sat Jul 25, 2015 3:38 pm    Post subject: Reply with quote

My personal experience with VSL#3 was that while it seemed to calm cramping, gurgling and perhaps frequency and urgency of bowel movements, my bowel movements tended toward straight liquid while I was on it. It was kind of weird really because with that consistency of bowel movement one would expect to have all the other symptoms as well. I am now having a good experience with Prescript Assist. It doesn't cure me but it seems to make things more normal as long as I stick to the proper diet.

Gigi
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LC diagnosed July 2014
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gac
Adélie Penguin
Adélie Penguin


Joined: 16 Jul 2015

Posts: 117
User's local time:
2017 Sep 24 - 3:45 AM


Food Intolerances : GF/DF/SF,onions,garlic,veggies/fruits,seeds,eggs,spices
Location: Atlanta, GA

PostPosted: Thu Apr 21, 2016 3:49 pm    Post subject: Reply with quote

To Shar76 - oh my goodness, you sound like me and I'm sure Tex thinks you sound like me. I get so angry at doctors who tell me "go ahead and eat a normal diet." That never works for me and hasn't in 10 months. I wonder if it ever will. I have resigned myself to this weird life and weird diet of never eating foods I love. Just wanted to let you know that your post hit the mark with me.
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