Hi,
I'm "C" (50 something active female) and I'm happy to have found this forum and the associated website. Have been reading Wayne's book today and find it quite interesting and informative. I have an appointment with the GI in the morning to supposedly receive my "official" diagnosis. I was given the biopsy reports from a nurse 3 weeks ago (the week after the colonoscopy) and 2 of the 3 biopsies show collagenous cells. Don't have the numbers to go with it, but the GI doc who ordered the colonoscopy with biopsies did talk to me about looking for MC. Unfortunately he was a contractor and his last day was the next day, so I have no clue who it is I'm seeing in the morning. Have been having WD at least 30 times a day for 9 weeks and now the past 3 weeks am down to days of 6 episodes of WD interspersed with days of soft serve to include lots of bloating and of course tons of noise. Something about doing the prep for the colonoscopy seemed to help me out.
I have lost 20 pounds and work hard daily to stay hydrated and nourished enough to function. I have found that I can manage boiled eggs, toast, baked potatoes (no skin), bananas, pasta (with light red sauce) no spices, baked chicken and crackers. I drink a Boost shake each morning, and switch off between Gatorade and water during the day and at work. It has taken a while to get some energy back, but making myself eat daily has helped. Some days I don't even want to eat or drink and for me a food loving individual, that sent up a red flag to my husband and I.
I hope to have more information tomorrow so I can more accurately share what my biopsy results were. Of course I have had I think 8 or 9 stool tests and a dozen blood tests and other than a little hypo on my thyroid, everything came back fine. This is the second and longest bout I've had. 3 years ago I had 6 weeks of WD and all tests came back negative and the GP gave me some antibiotics and things went away. I think it was most likely my first bout with MC and it happened to resolve itself.
I do take medicine for chronic pain and have for nearly 20 years now. Multiple spine surgeries etc.
Gabapentin
Baclofen
Celebrex
Paxil
Supplements are
Calcium with vit D
Magnesium Oxide
Folic Acid
Multivitamin
Up until this latest bout, I could eat ANYTHING I wanted to and then some. The spicier the better! Now I don't even put any spice other than a touch of salt on anything I eat. Yes call me a chicken, but ....
I appreciate everyone sharing information on this and for taking the time to read this post.
Kindest Regards,
"C"
Hi Ya'll, another one bites the dust
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello C,
Welcome to our Internet family. Yes, you have probably had MC for a few years or more because it typically presents initially as lymphocytic colitis and then collagenous colitis may develop in some cases as the inflammation continues. But the lymphocytic inflammation is present in all cases.
If a gastroenterologist did a colonoscopy exam when you had the symptoms 3 years ago, she or he probably failed to take biopsy samples (or failed to take enough biopsy samples) or the disease probably would have been diagnosed then. And yes, sometimes certain antibiotics (primarily the fluoroquinolones such as ciprofloxacin) and occasionally the swamp water used as a colonoscopy prep can induce remission. Usually it's only temporary, though. On the other hand, certain colonoscopy prep solutions have been documented as causing MC where it did not exist before, because they are very caustic and irritating to the intestines.
You are headed in the right direction with your diet changes, but more will be needed in order to stop the inflammation. Most newly-diagnosed patients find it very hard to believe that they could suddenly develop food sensitivities, but research (and experience) shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered. And because gluten sensitivity causes increased intestinal permeability (leaky gut), this opens to door to the development to additional food sensitivities. Please be aware that despite negative results on the classic celiac screening tests, virtually all of us here are very sensitive to gluten. The mainstream medical community has no official test that they can use to detect non-celiac gluten sensitivity, so they have no way to detect the type of gluten sensitivity that causes the inflammation that perpetuates our MC symptoms. That's why most of us use the stool tests offered by EnteroLab for detecting (or confirming) our food sensitivities.
So don't be surprised if the GI specialist you meet with tomorrow insists that diet has nothing to do with MC, because unfortunately that is still the prevailing attitude in the medical community. Here and there a few leading edge specialists are beginning to learn about the diet connection with MC, but as far as I am aware, medical school training on this issue is still operating in the dark ages, so it will probably be some time before the profession as a whole begins to actually understand the disease well enough to be able to effectively treat it.
One observation based on the supplements you are taking — magnesium oxide is the poorest choice of all the magnesium supplements available (and probably because it's the cheapest, it's the form that most hospitals use). Of all the forms of magnesium available, magnesium oxide has the poorest absorption rate, and it is the form most likely to cause diarrhea. Please switch to magnesium glycinate (chelated magnesium) or magnsium citrate so that you will be able to absorb more without causing digestive issues. Magnesium is very important to our recovery because most of us are deficient, and many medications (especially the corticosteroids prescribed to treat MC) severely deplete magnesium, to make the problem much worse. But too much of the wrong kind of magnesium will cause diarrhea, which we obviously don't need. Chelated magnesium (magnesium glycinate) is the safest form. That is, it's very easily absorbed and it's the form of magnesium that's the least likely to cause diarrhea.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Yes, you have probably had MC for a few years or more because it typically presents initially as lymphocytic colitis and then collagenous colitis may develop in some cases as the inflammation continues. But the lymphocytic inflammation is present in all cases.
If a gastroenterologist did a colonoscopy exam when you had the symptoms 3 years ago, she or he probably failed to take biopsy samples (or failed to take enough biopsy samples) or the disease probably would have been diagnosed then. And yes, sometimes certain antibiotics (primarily the fluoroquinolones such as ciprofloxacin) and occasionally the swamp water used as a colonoscopy prep can induce remission. Usually it's only temporary, though. On the other hand, certain colonoscopy prep solutions have been documented as causing MC where it did not exist before, because they are very caustic and irritating to the intestines.
You are headed in the right direction with your diet changes, but more will be needed in order to stop the inflammation. Most newly-diagnosed patients find it very hard to believe that they could suddenly develop food sensitivities, but research (and experience) shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered. And because gluten sensitivity causes increased intestinal permeability (leaky gut), this opens to door to the development to additional food sensitivities. Please be aware that despite negative results on the classic celiac screening tests, virtually all of us here are very sensitive to gluten. The mainstream medical community has no official test that they can use to detect non-celiac gluten sensitivity, so they have no way to detect the type of gluten sensitivity that causes the inflammation that perpetuates our MC symptoms. That's why most of us use the stool tests offered by EnteroLab for detecting (or confirming) our food sensitivities.
So don't be surprised if the GI specialist you meet with tomorrow insists that diet has nothing to do with MC, because unfortunately that is still the prevailing attitude in the medical community. Here and there a few leading edge specialists are beginning to learn about the diet connection with MC, but as far as I am aware, medical school training on this issue is still operating in the dark ages, so it will probably be some time before the profession as a whole begins to actually understand the disease well enough to be able to effectively treat it.
One observation based on the supplements you are taking — magnesium oxide is the poorest choice of all the magnesium supplements available (and probably because it's the cheapest, it's the form that most hospitals use). Of all the forms of magnesium available, magnesium oxide has the poorest absorption rate, and it is the form most likely to cause diarrhea. Please switch to magnesium glycinate (chelated magnesium) or magnsium citrate so that you will be able to absorb more without causing digestive issues. Magnesium is very important to our recovery because most of us are deficient, and many medications (especially the corticosteroids prescribed to treat MC) severely deplete magnesium, to make the problem much worse. But too much of the wrong kind of magnesium will cause diarrhea, which we obviously don't need. Chelated magnesium (magnesium glycinate) is the safest form. That is, it's very easily absorbed and it's the form of magnesium that's the least likely to cause diarrhea.
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.
Thanks Tex,
Just got back from seeing the GI doc and he confirmed CC based on the biopsies and my history of symptoms and current symptoms. What was funny was that since I have been reading your book and information on this forum, it made me nearly laugh with some of the things I was told this morning by the doc. The pathologist said CC but the doc who did the colonoscopy wrote a letter saying (because it was so patchy) she disagreed with the pathologist. Thankfully I am being treated by a senior and permanent staff member now, who flat out told me his disagrees with that doc and his diagnosis he entered into my records is Collagenous Colitis.
So today I will start on bizmuth subsalicylate for two weeks and if that doesn't help then I will switch to the Budesonide.
The other thing that made me laugh (to myself) was that this doc said that diet has nothing to do with MC. So I can eat what I want. My own experimentation has shown me that I can't eat certain things already, but I didn't want to offend the doc so I kept that to myself and just chuckled again when I read your note.
Thanks for the heads up on the Magnesium Oxide. I've taken that form for years, ever since I was started on Gabapentin and I am certainly willing to try the different form for better absorption.
I'm just glad to have a direction to go in that is anything other than the bathroom.
Thanks again,
"C"
Just got back from seeing the GI doc and he confirmed CC based on the biopsies and my history of symptoms and current symptoms. What was funny was that since I have been reading your book and information on this forum, it made me nearly laugh with some of the things I was told this morning by the doc. The pathologist said CC but the doc who did the colonoscopy wrote a letter saying (because it was so patchy) she disagreed with the pathologist. Thankfully I am being treated by a senior and permanent staff member now, who flat out told me his disagrees with that doc and his diagnosis he entered into my records is Collagenous Colitis.
So today I will start on bizmuth subsalicylate for two weeks and if that doesn't help then I will switch to the Budesonide.
The other thing that made me laugh (to myself) was that this doc said that diet has nothing to do with MC. So I can eat what I want. My own experimentation has shown me that I can't eat certain things already, but I didn't want to offend the doc so I kept that to myself and just chuckled again when I read your note.
Thanks for the heads up on the Magnesium Oxide. I've taken that form for years, ever since I was started on Gabapentin and I am certainly willing to try the different form for better absorption.
I'm just glad to have a direction to go in that is anything other than the bathroom.
Thanks again,
"C"
HI C,
If you can tolerate it the Bismuth treatment should be done for 8 weeks at 8 tablets a day or 262mg a tablet for a total of 2096mg per day. spreading them out over the course of the day. Two weeks will only let you know if the process is working, the remaining 6 weeks are what set the gut up for the ability to begin healing with proper diet changes such as Gluten Free, Dairy Free, Soy Free and even Egg Free. The Gluten and Dairy will be life long removals in order to maintain the gut from going into a flare at every cross road.
I tried the Bismuth treatment and I could only get to day 6...it didn't really make me feel to good and it wasn't really stopping WD. So back to focusing on diet and taking my daily antihistamine plus Mag and VitD3
I did not partake in the Budesonide treatment either so am no help there. Good luck, I hope it works for you!
Cheers
Erica
If you can tolerate it the Bismuth treatment should be done for 8 weeks at 8 tablets a day or 262mg a tablet for a total of 2096mg per day. spreading them out over the course of the day. Two weeks will only let you know if the process is working, the remaining 6 weeks are what set the gut up for the ability to begin healing with proper diet changes such as Gluten Free, Dairy Free, Soy Free and even Egg Free. The Gluten and Dairy will be life long removals in order to maintain the gut from going into a flare at every cross road.
I tried the Bismuth treatment and I could only get to day 6...it didn't really make me feel to good and it wasn't really stopping WD. So back to focusing on diet and taking my daily antihistamine plus Mag and VitD3
I did not partake in the Budesonide treatment either so am no help there. Good luck, I hope it works for you!
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
C,
Yes, you know your doc is an MC rookie when she questions a pathologist's CC/LC/MC diagnosis because the presentation in the colon is patchy. That's the way almost all cases are. That's the reason why some docs miss a diagnosis, because they don't take enough biopsies to include samples from at least 1 or more of the inflamed patches.
After you get your diet sorted out, hopefully you will heal enough that by the end of the year, whenever you go somewhere you won't even look around to make sure that you know the location of the nearest bathroom.
Incidentally, I trust that your doctor advised you that Gabapentin strongly binds magnesium and prevents it from being absorbed. The Mayo Clinic advises patients that Gabapentin binds the following forms of magnesium:
Magnesium Carbonate
Magnesium Hydroxide
Magnesium Oxide
Magnesium Trisilicate
I have no idea if that list is accurate (complete) or if they just overlooked the other forms of magnesium, but if they are right, then taking magnesium glycinate or magnesium citrate would surely be a much better option.
I would assume that you're taking the Gabapentin 3 times per day, so that makes it tough to schedule taking magnesium at different times, especially since magnesium is best absorbed if taken with meals. Cholestyramine also binds magnesium (and almost everything else), but the directions for it suggest taking supplements or meds 1 hour before or 4 hours after taking cholestyramine in order to minimize the binding problem. I have no idea whether that would help with Gabapentin, though because looking at the pharmacokinetics for it, it apparently reaches maximum concentration in the blood 3 or 4 hours after ingestion. If that's true, then taking magnesium 4 hours later might be the worst time to take it.
You're very welcome,
Tex
Yes, you know your doc is an MC rookie when she questions a pathologist's CC/LC/MC diagnosis because the presentation in the colon is patchy. That's the way almost all cases are. That's the reason why some docs miss a diagnosis, because they don't take enough biopsies to include samples from at least 1 or more of the inflamed patches.
After you get your diet sorted out, hopefully you will heal enough that by the end of the year, whenever you go somewhere you won't even look around to make sure that you know the location of the nearest bathroom.
Incidentally, I trust that your doctor advised you that Gabapentin strongly binds magnesium and prevents it from being absorbed. The Mayo Clinic advises patients that Gabapentin binds the following forms of magnesium:
Magnesium Carbonate
Magnesium Hydroxide
Magnesium Oxide
Magnesium Trisilicate
I have no idea if that list is accurate (complete) or if they just overlooked the other forms of magnesium, but if they are right, then taking magnesium glycinate or magnesium citrate would surely be a much better option.
I would assume that you're taking the Gabapentin 3 times per day, so that makes it tough to schedule taking magnesium at different times, especially since magnesium is best absorbed if taken with meals. Cholestyramine also binds magnesium (and almost everything else), but the directions for it suggest taking supplements or meds 1 hour before or 4 hours after taking cholestyramine in order to minimize the binding problem. I have no idea whether that would help with Gabapentin, though because looking at the pharmacokinetics for it, it apparently reaches maximum concentration in the blood 3 or 4 hours after ingestion. If that's true, then taking magnesium 4 hours later might be the worst time to take it.
You're very welcome,
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.