Howdy everyone-
I haven't posted in a bit, but I have been checking in as often as I can. I have been having a rough time this last week and a half, and forced myself to go see the doc today. He stated concerns that I am a "tricky" case and do not have "atypical symptoms". I most definitely do not agree with him, but I did agree to do some additional tests prior to another scope (which I had done July '09) to rule out other possible things that could be going on.
Anyway, I have questions about the tests that he ordered. I researched both of them, but could use some help with explanation as to what they are doing with my poop.
I tested positive for C-diff summer of '09, which is what prompted the specialist to do both colonscopy and endoscopy. After two round of Flagyl, I had two C-diff tests. They both came back negative. So, today it was recommended that a different test be done. He described it as something that was new to their lab. I wrote it down, but have misplaced the paper. I believed he called it PCR. He also wants to test Fecal Electrolytes and run blood work to see if there have been any changes since the last time labs were checked six weeks ago.
He seemed concerned that there may be something else that has changed since diagnosis of LC, or missed when I had a butt load of tests done to get that diagnosis.
Any explanation as to the fecal tests would be greatly appreciated. My husband was with me today, and he appeared extremely frustrated that this Dr. is not concerned with any vitamin deficiancy and the long term effects it could be having on me. Apparently, he wants to keep me around for awhile and just can't fathom the idea that my diet and D are not "messing me up".
Thanks-
Rebecca
GI ordered more tests today?????
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natythingycolbery
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They could maybe be checking for any other type of infection or for inflamation? apart from that i'm not really sure, it kinda sounds like they aren't 100% sure what is going on or something?
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
Hi Rebecca,
Naty is correct, I believe. It appears that your doctor is checking for pathogens, and possibly parasites, and trying to determine the specific type of diarrhea that you are experiencing.
PCR stands for polymerase chain reaction. These tests utilize DNA analysis, to allow for more accurate detection of microbe populations, by detecting gene sequences in bacterial DNA. They're presumably much more accurate than conventional culture tests.
Testing for fecal electrolytes would involve, (I would assume), measuring fecal sodium, potassium, and chloride levels, in order to distinguish between osmotic diarrhea, and secretory diarrhea. Secretory diarrhea is a common mode of diarrhea for MC, celiac disease, and the other IBDs, but is not commonly present, with any other digestive issues, (such as IBS). With secretory diarrhea, the levels of those electrolytes will be much higher in the stool, because normally, the colon absorbs those electrolytes before the stool solidifies. With secretory D, however, the colon not only does not absorb those electrolytes, but it actually secretes additional electrolytes into the lumen, thus drastically increasing the level of those electrolytes in the stool.
I hope this is the information you were seeking. If not, please point me in the right direction, and I'll try to offer a better explanation.
Tex
Naty is correct, I believe. It appears that your doctor is checking for pathogens, and possibly parasites, and trying to determine the specific type of diarrhea that you are experiencing.
PCR stands for polymerase chain reaction. These tests utilize DNA analysis, to allow for more accurate detection of microbe populations, by detecting gene sequences in bacterial DNA. They're presumably much more accurate than conventional culture tests.
Testing for fecal electrolytes would involve, (I would assume), measuring fecal sodium, potassium, and chloride levels, in order to distinguish between osmotic diarrhea, and secretory diarrhea. Secretory diarrhea is a common mode of diarrhea for MC, celiac disease, and the other IBDs, but is not commonly present, with any other digestive issues, (such as IBS). With secretory diarrhea, the levels of those electrolytes will be much higher in the stool, because normally, the colon absorbs those electrolytes before the stool solidifies. With secretory D, however, the colon not only does not absorb those electrolytes, but it actually secretes additional electrolytes into the lumen, thus drastically increasing the level of those electrolytes in the stool.
I hope this is the information you were seeking. If not, please point me in the right direction, and I'll try to offer a better explanation.
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.
Thanks Naty and Tex-
It's hard to believe that not that long ago, poop was poop! Now I am learning all about different types of tests and what they are looking for, and most importantly what it means.
At my appointment on Tuesday, my GI offered a couple of suggestions to try. One was the Pepto Bismol 3 tablets, three times a day, with no answer on an exact time frame to discontinue. I have taken Pepto for D prior to my diagnosis, but since then, I have been taking Imodioum. I started the Pepto Tuesday afternoon and felt okay for a couple of days. Then this morning, I woke to horrible abdominal pain and had 4 BM within an hour. That's when my husband reminded me that the Dr. had said that it would be okay to take both Pepto and Imodium at the same time.
I have called the GI docs office this morning and left a message with an update on how things have been going since I saw him earlier in the week. I was hoping to get test results back also.
During my appointment on Tuesday, he mentioned that if these tests did not provide any useful information, he is highly considering doing another scope. Wants to look and see if things have changed since the one that was done last year or look again to see if something was missed. Not real thrilled about that, as you all can imagine! Butt you gotta do what you gotta do.
Tex- I appreciate your explanation regarding the fecal tests. There is just so much information out there, and it can be overwhelming for some (well, for me anyway). You seem to know soooooo much and can explain it to others in a way that makes sense. It's not too "kindergarten" and not to "scientific medical journals"! You rock!!!!!!!
Happy Weekend to all-
Rebecca
It's hard to believe that not that long ago, poop was poop! Now I am learning all about different types of tests and what they are looking for, and most importantly what it means.
At my appointment on Tuesday, my GI offered a couple of suggestions to try. One was the Pepto Bismol 3 tablets, three times a day, with no answer on an exact time frame to discontinue. I have taken Pepto for D prior to my diagnosis, but since then, I have been taking Imodioum. I started the Pepto Tuesday afternoon and felt okay for a couple of days. Then this morning, I woke to horrible abdominal pain and had 4 BM within an hour. That's when my husband reminded me that the Dr. had said that it would be okay to take both Pepto and Imodium at the same time.
I have called the GI docs office this morning and left a message with an update on how things have been going since I saw him earlier in the week. I was hoping to get test results back also.
During my appointment on Tuesday, he mentioned that if these tests did not provide any useful information, he is highly considering doing another scope. Wants to look and see if things have changed since the one that was done last year or look again to see if something was missed. Not real thrilled about that, as you all can imagine! Butt you gotta do what you gotta do.
Tex- I appreciate your explanation regarding the fecal tests. There is just so much information out there, and it can be overwhelming for some (well, for me anyway). You seem to know soooooo much and can explain it to others in a way that makes sense. It's not too "kindergarten" and not to "scientific medical journals"! You rock!!!!!!!
Happy Weekend to all-
Rebecca
Rebecca,
Actually, the original Pepto-Bismol treatment for MC involves a treatment lasting for 8 weeks. However, Dr. Fine, (the GI doc who developed that treatment, over 10 years ago), no longer recommends it, because a fair percentage of people have adverse reactions to it. Now, he recommends the GF diet, (with no meds). The Pepto treatment has a very high success rate, for those who can tolerate it, (around 85%, I believe), but most GI docs forget to point out that it must be done in conjunction with the GF diet, and so their patients usually relapse, a few weeks after the treatment is completed. It's difficult to say if your reaction this morning was due to the Pepto, or something else. Most people who have to stop the treatment, discontinue it because of neurological symptoms, (dizziness, headache, balance issues, etc.) This is just a guess, of course, but it's possible that your husband might be on the right track - the combination of Pepto and Imodium might have caused constipation, which led to your episode of D this morning.
Unfortunately, your GI doctor's suggestion to do another colonoscopy, is a very common occurrence for doctors who know very little about the disease, (and they would like to learn more). They don't understand why the treatments that their medical training taught them to use, do not bring results, so they begin to suspect that the original diagnosis was wrong, or they must have somehow missed something.
If a pathologist reviewed your biopsy slides, and found the markers of LC, then you do indeed have LC. Another colonoscopy will show exactly the same thing - it is very unlikely that anything will have significantly changed in only one year. Markers of the other IBDs are so obvious during a colonoscopy exam, that it is virtually impossible to overlook them, unless Crohn's is present in the small intestine, out of the scope's reach. If that were the case, though, you would probably be passing blood, and have pain most of the time, so it is very unlikely that you have undiscovered Crohn's disease. And, another colonoscopy is not going to discover anything that is above the terminal ileum, anyway, so it would almost surely be a waste of time and money. Remember, though, that's just my opinion, and I'm not a medical professional.
So, it boils down to a question of whether or not you want to be a guinea pig for your doctor's further education. It's a noble cause, but the decision is entirely yours to make. Of course, there's always a chance that he might find new information, but based on our accumulated experience here on the board, the odds are probably pretty slim.
Thanks, I appreciate the kind words, and I hope you have a great weekend, also.
Tex
Actually, the original Pepto-Bismol treatment for MC involves a treatment lasting for 8 weeks. However, Dr. Fine, (the GI doc who developed that treatment, over 10 years ago), no longer recommends it, because a fair percentage of people have adverse reactions to it. Now, he recommends the GF diet, (with no meds). The Pepto treatment has a very high success rate, for those who can tolerate it, (around 85%, I believe), but most GI docs forget to point out that it must be done in conjunction with the GF diet, and so their patients usually relapse, a few weeks after the treatment is completed. It's difficult to say if your reaction this morning was due to the Pepto, or something else. Most people who have to stop the treatment, discontinue it because of neurological symptoms, (dizziness, headache, balance issues, etc.) This is just a guess, of course, but it's possible that your husband might be on the right track - the combination of Pepto and Imodium might have caused constipation, which led to your episode of D this morning.
Unfortunately, your GI doctor's suggestion to do another colonoscopy, is a very common occurrence for doctors who know very little about the disease, (and they would like to learn more). They don't understand why the treatments that their medical training taught them to use, do not bring results, so they begin to suspect that the original diagnosis was wrong, or they must have somehow missed something.
If a pathologist reviewed your biopsy slides, and found the markers of LC, then you do indeed have LC. Another colonoscopy will show exactly the same thing - it is very unlikely that anything will have significantly changed in only one year. Markers of the other IBDs are so obvious during a colonoscopy exam, that it is virtually impossible to overlook them, unless Crohn's is present in the small intestine, out of the scope's reach. If that were the case, though, you would probably be passing blood, and have pain most of the time, so it is very unlikely that you have undiscovered Crohn's disease. And, another colonoscopy is not going to discover anything that is above the terminal ileum, anyway, so it would almost surely be a waste of time and money. Remember, though, that's just my opinion, and I'm not a medical professional.
So, it boils down to a question of whether or not you want to be a guinea pig for your doctor's further education. It's a noble cause, but the decision is entirely yours to make. Of course, there's always a chance that he might find new information, but based on our accumulated experience here on the board, the odds are probably pretty slim.
Thanks, I appreciate the kind words, and I hope you have a great weekend, also.
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.
unusual biopsy results
So, I had another colonoscopy/endoscopy done last week. I know, I know, probably a waste of money and time, but guess what..... My GI doc said that he took a lot of biopsies.
Visually, he stated "findings in the stomach: erythema, erosion, and friability of the mucosa with contact bleeding were noted in the stomach. Small amount of dried heme."
He saw nothing unusual or alarming during colonoscopy. Okay, here's the kicker. I received a phone call from his nurse, and she said that pathology "was not finding much". I asked if she meant anything additional besides LC. It appeared as if she was just the messenger, but my Dr. said the same thing this morning.
He told me that he was going to have them compare results/samples from scopes done last summer.
I am even more confused and frustrated than I was before! Either I was misdiagnosed or it went away. WTH? Why do I still have diarrhea and abdominal pain?
More tests have been ordered, but I don't know that I trust anyone. I just want to feel better.
As always, this is a wonderful place to vent and another place to document this crazy stuff that is going on with me.
-Rebecca
Visually, he stated "findings in the stomach: erythema, erosion, and friability of the mucosa with contact bleeding were noted in the stomach. Small amount of dried heme."
He saw nothing unusual or alarming during colonoscopy. Okay, here's the kicker. I received a phone call from his nurse, and she said that pathology "was not finding much". I asked if she meant anything additional besides LC. It appeared as if she was just the messenger, but my Dr. said the same thing this morning.
He told me that he was going to have them compare results/samples from scopes done last summer.
I am even more confused and frustrated than I was before! Either I was misdiagnosed or it went away. WTH? Why do I still have diarrhea and abdominal pain?
More tests have been ordered, but I don't know that I trust anyone. I just want to feel better.
As always, this is a wonderful place to vent and another place to document this crazy stuff that is going on with me.
-Rebecca
Rebecca,
I agree with Tex - your GI doesn't have a clue what to do and he is trying to use you as a guinea pig. My GI tried the same thing a couple of months ago. He wanted to do another colonoscopy to see if things had changed. Then he asked me the same questions he asked when I was first diagnosed. I could tell that he was completely baffled and was hoping something would be revealed during the colonoscopy. I refused to go along with his game plan. Instead, I (once again) scrutinized my diet and made changes. The plan worked and I am presently seeing Normans again.
I just reviewed all of your postings. I may have missed something; if so, please forgive me and feel free to correct my analysis. It doesn't appear that you've had the Enterolab testing. I recall you were trying to save money so you could get it. Have you eliminated anything other than gluten? It seems that gluten did make a dramatic change for you, at least initially.
If you haven't given up anything besides gluten and you haven't had Enterolab testing, it's entirely possible that you are intolerant to other foods, particularly casein (dairy) and soy. Only a few people on the board have gluten as their only intolerance. The rest of us have to eliminate more foods in order for our gut to heal. If you've given up additional foods and still don't feel better, it's not unreasonable to consider that you have even more intolerances. Without Enterolab testing or a genetic test, you'll need to experiment.
Also, if you aren't keeping a food diary, you may want to consider using one.
I hope you begin to feel better soon.
Gloria
I agree with Tex - your GI doesn't have a clue what to do and he is trying to use you as a guinea pig. My GI tried the same thing a couple of months ago. He wanted to do another colonoscopy to see if things had changed. Then he asked me the same questions he asked when I was first diagnosed. I could tell that he was completely baffled and was hoping something would be revealed during the colonoscopy. I refused to go along with his game plan. Instead, I (once again) scrutinized my diet and made changes. The plan worked and I am presently seeing Normans again.
I just reviewed all of your postings. I may have missed something; if so, please forgive me and feel free to correct my analysis. It doesn't appear that you've had the Enterolab testing. I recall you were trying to save money so you could get it. Have you eliminated anything other than gluten? It seems that gluten did make a dramatic change for you, at least initially.
If you haven't given up anything besides gluten and you haven't had Enterolab testing, it's entirely possible that you are intolerant to other foods, particularly casein (dairy) and soy. Only a few people on the board have gluten as their only intolerance. The rest of us have to eliminate more foods in order for our gut to heal. If you've given up additional foods and still don't feel better, it's not unreasonable to consider that you have even more intolerances. Without Enterolab testing or a genetic test, you'll need to experiment.
Also, if you aren't keeping a food diary, you may want to consider using one.
I hope you begin to feel better soon.
Gloria
You never know what you can do until you have to do it.
Hi Rebecca,Rebecca wrote:I am even more confused and frustrated than I was before! Either I was misdiagnosed or it went away. WTH? Why do I still have diarrhea and abdominal pain?
You're confused because your doctor is confused. I don't believe that you were misdiagnosed. It would very, very unusual to be misdiagnosed with MC, and it doesn't just go away, (while leaving the clinical symptoms).
I agree with Gloria's suggestions, to either order some tests from Enterolab, or to try eliminating gluten, dairy, and soy from your diet for a month or so, to see if your symptoms improve. That's the fastest way to feel better, since your doctor seems to be totally lost.
Whatever you decide to do, please keep us undated, and good luck with your treatment plan.
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.
Rebecca,
I feel for you. Got my colonoscopy in June of this year. I have a sort of limbo land diagnosis, too. However, they can ask me till the cows come home and I am not getting another scope for a long, long time. I figure I'm pretty much on my own anyway, so here I am, trying to learn as much as possible.
What Gloria said is true - start keeping a food diary if you haven't already. I don't look at mine very often, but I find that the act of writing down everything helps me retain it better, so I can do a better job of keeping mental notes. And it is good that I can review it if I need to.
I feel for you. Got my colonoscopy in June of this year. I have a sort of limbo land diagnosis, too. However, they can ask me till the cows come home and I am not getting another scope for a long, long time. I figure I'm pretty much on my own anyway, so here I am, trying to learn as much as possible.
What Gloria said is true - start keeping a food diary if you haven't already. I don't look at mine very often, but I find that the act of writing down everything helps me retain it better, so I can do a better job of keeping mental notes. And it is good that I can review it if I need to.
Robbie