Hello all,
I am so frustrated. I had a colonoscopy, my Dr. was positive that I had MC. Well I saw him today and the biopsy was negative.
He put me on some kind of med, I forget the name of it, to slow my diarrhea down.
I have lost 26 pounds because of this condition whatever it is. I can hardly keep anything in my stomach because it comes right out.
He thinks it may bacterial, or some immune thing.
Has anyone been diagnosed as not having MC, when all of the symptoms are there? I have nasty pain on my left side and stomach, and also sometimes pelvic pain. I am ready to pull my hair out.
Thank you for letting me vent.
Frustrated
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome to the group
Sorry you are having intense symptoms.
Do you have a copy of the biopsy report? Would be interesting to see how many biopsies were taken.
Regardless of that, we have many members that have non MC gut issues.
Our suggested eating plan, lifestyle changes and suuplement regime work for wide range of gut issues.
Our observation over many years is that most of the meds for MC type gut issues, have limited scope of success on their own if the person is still consuming high inflammation foods etc and low in key nutrients.
Sadly there is no quick fix, but if you are interested in good long term wellness, regardless of what doctors call the health issue, and you are willing to make eating plan changes etc, let me know and I will share the links to relevant information.
Hope this helps.
Sorry you are having intense symptoms.
Do you have a copy of the biopsy report? Would be interesting to see how many biopsies were taken.
Regardless of that, we have many members that have non MC gut issues.
Our suggested eating plan, lifestyle changes and suuplement regime work for wide range of gut issues.
Our observation over many years is that most of the meds for MC type gut issues, have limited scope of success on their own if the person is still consuming high inflammation foods etc and low in key nutrients.
Sadly there is no quick fix, but if you are interested in good long term wellness, regardless of what doctors call the health issue, and you are willing to make eating plan changes etc, let me know and I will share the links to relevant information.
Hope this helps.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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karenswans
- Adélie Penguin
- Posts: 104
- Joined: Sat Sep 03, 2011 7:12 am
Hi Paddy,
Welcome. I can't help but wonder if maybe your gastroenterologist didn't know how to select the locations for the biopsies and he accidentally took them from unproductive locations, so he missed the inflamed areas. Many docs believe the entire colon is inflamed with MC, but actually the inflammation usually occurs in random, scattered patches. During an exam, you can identify the inflamed areas on the colonoscope monitor as slightly darker pink "splotches" against the normal light pink background of an otherwise healthy colon.
But even if the diagnosis is correct, you might have bile acid malabsorption (BAM). BAM is a very common cause of unexplained persistent diarrhea. The correct prescription in this case would be a bile acid sequestrant, such as cholestyramine (Questran). Is this what he prescribed?
There are other ways to identify MC in a patient. Do your stomach and intestines make loud growling or gurgling noises (similar to hunger pang growls, only much louder). If they're so loud that other people can hear them across a room, you probably have MC. Are your bowel movements sometimes extremely urgent, usually noisy, and they smell so bad that you are embarrassed to use a public restroom? Then you either have MC or celiac disease.
But Gabes is right, whatever it is, it's probably caused by one or more food sensitivities, so the recovery program that we normally follow should work for you as well.
If you can obtain a copy of the pathology report (not the GI doc's interpretation, but the actual pathology report), we might be able to figure out why your markers did not meet the criteria for an MC diagnosis. There is an area between a normal lymphocyte count and a count that is positive for LC, that is undefined. If you fall into this area, you might have an uncommon form of MC, known as paucicellular LC. Most pathologists would not be familiar with this and they would not catch it.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome. I can't help but wonder if maybe your gastroenterologist didn't know how to select the locations for the biopsies and he accidentally took them from unproductive locations, so he missed the inflamed areas. Many docs believe the entire colon is inflamed with MC, but actually the inflammation usually occurs in random, scattered patches. During an exam, you can identify the inflamed areas on the colonoscope monitor as slightly darker pink "splotches" against the normal light pink background of an otherwise healthy colon.
But even if the diagnosis is correct, you might have bile acid malabsorption (BAM). BAM is a very common cause of unexplained persistent diarrhea. The correct prescription in this case would be a bile acid sequestrant, such as cholestyramine (Questran). Is this what he prescribed?
There are other ways to identify MC in a patient. Do your stomach and intestines make loud growling or gurgling noises (similar to hunger pang growls, only much louder). If they're so loud that other people can hear them across a room, you probably have MC. Are your bowel movements sometimes extremely urgent, usually noisy, and they smell so bad that you are embarrassed to use a public restroom? Then you either have MC or celiac disease.
But Gabes is right, whatever it is, it's probably caused by one or more food sensitivities, so the recovery program that we normally follow should work for you as well.
If you can obtain a copy of the pathology report (not the GI doc's interpretation, but the actual pathology report), we might be able to figure out why your markers did not meet the criteria for an MC diagnosis. There is an area between a normal lymphocyte count and a count that is positive for LC, that is undefined. If you fall into this area, you might have an uncommon form of MC, known as paucicellular LC. Most pathologists would not be familiar with this and they would not catch it.
Again, welcome aboard, and please feel free to ask anything.
Tex
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.
Thank you so much for the welcome. Tex, I wish you could talk to my Dr, you know a lot about this condition. I will ask for a copy of the pathology report, when I see him again in a couple of weeks. He wants me to have a CAT scan. With my luck, that won't show anything either. ha.
Also, yes he prescribed the med that you mentioned. All of the symptoms you mentioned..growling stomach, etc. is exactly what i have. I was tested for celiac disease, but it came back negative.
I am lactose intolerant and have gluten sensitivity also.
Gabes, yes please send me the links that you mentioned. I am going to do everything that I can to help get rid of these symptoms. As Tex mentioned, I would like to do the Recovery Program. I am going to treat whatever I have as MC, as I am positive that i have a form of it as Tex mentioned.
Thank you everyone for answering my post.
Also, yes he prescribed the med that you mentioned. All of the symptoms you mentioned..growling stomach, etc. is exactly what i have. I was tested for celiac disease, but it came back negative.
I am lactose intolerant and have gluten sensitivity also.
Gabes, yes please send me the links that you mentioned. I am going to do everything that I can to help get rid of these symptoms. As Tex mentioned, I would like to do the Recovery Program. I am going to treat whatever I have as MC, as I am positive that i have a form of it as Tex mentioned.
Thank you everyone for answering my post.
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Paddy - I am one of those people without a formal diagnosis. I decided to skip the colonoscopy and go right to enacting the eating plan. I had found this forum, my symptoms matched and I had become disillusioned, after years of gastro problems, with the ability of conventional medicine to be of any help to me. You can read my success story here: https://perskyfarms.com/phpBB2/viewtopic.php?t=22587 You've come to the right place.
Jean
Jean
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
https://perskyfarms.com/phpBB2/viewforum.php?f=79
This is a link to out guidelines to recovery section,
Low inflammation gut healing eating plan, key supplements, etc
Jean has provided a link to her story, check out other posts in the member success stories area, it will give you an idea of what others have done etc.
Hope this helps.
This is a link to out guidelines to recovery section,
Low inflammation gut healing eating plan, key supplements, etc
Jean has provided a link to her story, check out other posts in the member success stories area, it will give you an idea of what others have done etc.
Hope this helps.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Tex, I read this in a response from you in this thread. Although diagnosed, through a biopsy, as having MC, my symptoms to not marry well to what you listed. My gut makes noise but not terribly, or that loud. Sometimes urgent, yes. Gassy, a bit. Smell, no. If not for a little gas, in a public restroom, no one would no I wasn't just urinating......There are other ways to identify MC in a patient. Do your stomach and intestines make loud growling or gurgling noises (similar to hunger pang growls, only much louder). If they're so loud that other people can hear them across a room, you probably have MC. Are your bowel movements sometimes extremely urgent, usually noisy, and they smell so bad that you are embarrassed to use a public restroom? Then you either have MC or celiac disease
Does this suggest anything to you, or am I an anomaly? My Dr. did prescribe Cholesyraime, I took it for a bit with marginal results and found that having to remember to take it three time/day was too much for my brain.....Karen
In my opinion, you're not only an anomaly, you're very lucky. But some people are fortunate to have relatively mild clinical symptoms (we're all different/unique). So yes, not all of us have the symptoms that I described in that quote. But my point was, if someone has those symptoms, they almost certainly have MC.
Tex
Tex
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.