Hello Everyone!
This is my first post here – I’m Shray (28M, from Delhi, India). I was recently diagnosed with Collagenous Colitis (CC) after my biopsy results came back from a colonoscopy. However, my symptoms seem to be somewhat different from what I see here in the forum. Also, during the colonoscopy, they found multiple erosions in my colon which I think doesn't happen with MC.
Since then, I've been on Budesonide, and I'm currently tapering off the medication. I started with 9mg daily for 6 weeks, then switched to 9mg every other day for 3 weeks, and now I'm down to 3mg daily. Unfortunately, my symptoms are starting to return.
Here are the symptoms I’ve been experiencing (and I used to experience before):
- Extreme fatigue after passing stool (no pain while passing stool, but I feel drained afterward and crave food to regain energy. I also feel some pain post my bowel movement).
- Dry skin after bowel movements, followed by a strong urge to lie down and rest.
- Things tend to return to normal after about 5-6 hours, and I’m able to resume work.
- I don’t have watery diarrhea, but my stools are often pencil-thin. Before starting Budesonide, I had occasional floating stools.
- I pass stools once or twice a day. (whereas before my colonoscopy, it was 3-4 times daily. This change occurred after I went gluten-free and started the Budesonide treatment)
I follow a gluten-free, egg-free, and milk-free diet, although I do occasionally eat curd.
Has anyone else experienced similar symptoms or have advice on managing this?
If you'd like to review my colonoscopy report, I've shared the link here.https://drive.google.com/file/d/1O35vzi ... sp=sharing
Can MC cause erosions?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: Can MC cause erosions?
Hello Shray,
Welcome to the group. That's an interesting colonoscopy report. If I read the report correctly, the gastroenterologist took only one biopsy sample, and that was from the recto sigmoid area. I'm surprised that you were able to get an MC diagnosis, because normally the patches of inflammation associated with MC are the most dense in the terminal ileum and the ascending colon, and the inflammation diminishes toward the distal end, making an accurate diagnosis far less likely if biopsy samples were only taken from the distal end of the intestinal tract (recto sigmoid area), especially if only one biopsy sample was taken.
And normally, in the intestinal tract, erosion is most likely to befound at the proximal end (just below the stomach, in the duodenum), rather than at the distal end. As far as I'm aware, that's not associated with MC.
As far as your clinical symptoms are concerned, fatigue is a very common symptom that's almost universally present with MC. Floating stool is often associated with celiac disease or gluten sensitivity. MC causes magnesium deficiency and vitamin D deficiency. Magnesium deficiency causes dry skin, and contributes to fatigue, muscle weakness, and neurological symptoms. Magnesium and Vitamin D are needed for proper immune system function. Deficiencies of vitamin D and magnesium prevent proper healing, and makes us vulnerable to developing other autoimmune diseases.
Curd is casein, the primary protein in milk, and it's the protein in dairy products that cause most of us to react. Most of us are sensitive to soy, and it's derivatives, and most legumes, so you might try avoiding curds and soy for about a week to see if that makes a difference in your digestion and bowel movements.
Incidentally, for anyone who might want to view that colonoscopy report, the link goes to a cdn file. PHP code, used to operate this forum and many others, can't open cdn files, so you need an image processor to open the file at that link. A good image processor to use is paint.net. It's an open source program, so it's free of charge, easy to use, and it's well-designed, so that it's capable of doing far more than any of us are ever likely to need.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. That's an interesting colonoscopy report. If I read the report correctly, the gastroenterologist took only one biopsy sample, and that was from the recto sigmoid area. I'm surprised that you were able to get an MC diagnosis, because normally the patches of inflammation associated with MC are the most dense in the terminal ileum and the ascending colon, and the inflammation diminishes toward the distal end, making an accurate diagnosis far less likely if biopsy samples were only taken from the distal end of the intestinal tract (recto sigmoid area), especially if only one biopsy sample was taken.
And normally, in the intestinal tract, erosion is most likely to befound at the proximal end (just below the stomach, in the duodenum), rather than at the distal end. As far as I'm aware, that's not associated with MC.
As far as your clinical symptoms are concerned, fatigue is a very common symptom that's almost universally present with MC. Floating stool is often associated with celiac disease or gluten sensitivity. MC causes magnesium deficiency and vitamin D deficiency. Magnesium deficiency causes dry skin, and contributes to fatigue, muscle weakness, and neurological symptoms. Magnesium and Vitamin D are needed for proper immune system function. Deficiencies of vitamin D and magnesium prevent proper healing, and makes us vulnerable to developing other autoimmune diseases.
Curd is casein, the primary protein in milk, and it's the protein in dairy products that cause most of us to react. Most of us are sensitive to soy, and it's derivatives, and most legumes, so you might try avoiding curds and soy for about a week to see if that makes a difference in your digestion and bowel movements.
Incidentally, for anyone who might want to view that colonoscopy report, the link goes to a cdn file. PHP code, used to operate this forum and many others, can't open cdn files, so you need an image processor to open the file at that link. A good image processor to use is paint.net. It's an open source program, so it's free of charge, easy to use, and it's well-designed, so that it's capable of doing far more than any of us are ever likely to need.
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.
Re: Can MC cause erosions?
Thank you so much for the detailed insight. 
I will definitely try going dairy-free and soy-free for a week and let you know if I notice any results. As a vegetarian, my food options are a bit limited, but I’ll see how it goes.
I have a couple of questions:
Last year, my vitamin D level was 11, so I began taking supplements. However, I’ve noticed that vitamin D and B12 levels tend to be low in my community overall. My gastroenterologist suggested another colonoscopy to take samples from all areas of the colon to check if the microscopic colitis diagnosis was accurate and to see if any erosions have healed post my Budesonide treatment. She mentioned that MC typically affects people in their 50s and 60s, which makes her question the initial diagnosis at my age.
I will definitely try going dairy-free and soy-free for a week and let you know if I notice any results. As a vegetarian, my food options are a bit limited, but I’ll see how it goes.I have a couple of questions:
- Why do I feel drained of energy after passing stool?
My gastroenterologist said this symptom isn’t specific and could be part of overlapping IBS. I also experience some anal pain after bowel movements, but I’m not sure why. The pain might be due to internal or external hemorrhoids, as seen in my colonoscopy, but I’m unsure why they’ve developed.
- Since, I don’t have watery diarrhoea, and I generally go to the toilet once or twice a day, though my stools are usually pencil-thin. Does this suggest that my inflammation might be under control? So is it okay for me to eat raw fruits like pomegranates and apples, or should I stick to a low-fiber diet for now?
Last year, my vitamin D level was 11, so I began taking supplements. However, I’ve noticed that vitamin D and B12 levels tend to be low in my community overall. My gastroenterologist suggested another colonoscopy to take samples from all areas of the colon to check if the microscopic colitis diagnosis was accurate and to see if any erosions have healed post my Budesonide treatment. She mentioned that MC typically affects people in their 50s and 60s, which makes her question the initial diagnosis at my age.
Re: Can MC cause erosions?
Hello Shray,
If the inflammation were under control, you would have normal bowel movements not pencil thin bowel movements. Pencil thin bowel movements are common with MC. Those of us who have watery diarrhea sometimes have pencil thin bowel movements as we begin to recover, so it's an intermediate stage in bowel movement patterns for many of us. It may be safe for you to eat apples, as long as they are overcooked, but eating raw fruit is usually a mistake until after we reach remission. Pomegranates might be safe if they are overcooked, also, but that's a guess, as we have no experience with eating pomegranates.
it would be helpful if your Doctor could order an RBC (red blood cell) magnesium test, to determine your magnesium level, because as I mentioned, vegetarian diets normally contain adequate magnesium. But the serum magnesium test normally ordered by doctors is worthless, since the body automatically regulates magnesium levels in the blood (because it's a critical electrolyte), and levels too high, or too low, can be dangerous.
The failure to take those additional biopsies during your original colonoscopy was a major medical mistake, but if you do allow another colonoscopy, the examination will almost surely show that the inflammation (due to MC) in your colon is worse in all of the other parts of your colon than it was in the recto-sigmoid area. A diagnosis of MC is virtually never incorrect. The only problem with diagnosing MC is that many cases are overlooked, and therefore, misdiagnosed. And your doctor's observation about MC mostly affecting people in their 50s and 60s is true, but that's irrelevant because people of any age can develop MC. About 10 years ago we had a member of this forum whose daughter had been diagnosed with MC before her fourth birthday. Over the years, many people who have been diagnosed with MC in their 20s, 30s, and 40s have joined this forum and learned how to control their symptoms by making diet changes.
I hope this helps,
Tex
Fatigue is very common with MC. Our immune system wastes most of our energy trying to fight the inflammation caused by the disease. If you're that low on vitamin D, you might be low on magnesium, also, but normally, vegetarian diets contain plenty of magnesium (although you might not be absorbing magnesium because of the malabsorption problem caused by MC). Magnesium deficiency can cause a feeling of weakness or fatigue. Hemorrhoids are common with MC because of the irritation caused by the inflammation. Inflammation also causes the blood vessels in our colon to weaken and expand (which can lead to hemorrhoids).Shray wrote:Why do I feel drained of energy after passing stool?
If the inflammation were under control, you would have normal bowel movements not pencil thin bowel movements. Pencil thin bowel movements are common with MC. Those of us who have watery diarrhea sometimes have pencil thin bowel movements as we begin to recover, so it's an intermediate stage in bowel movement patterns for many of us. It may be safe for you to eat apples, as long as they are overcooked, but eating raw fruit is usually a mistake until after we reach remission. Pomegranates might be safe if they are overcooked, also, but that's a guess, as we have no experience with eating pomegranates.
it would be helpful if your Doctor could order an RBC (red blood cell) magnesium test, to determine your magnesium level, because as I mentioned, vegetarian diets normally contain adequate magnesium. But the serum magnesium test normally ordered by doctors is worthless, since the body automatically regulates magnesium levels in the blood (because it's a critical electrolyte), and levels too high, or too low, can be dangerous.
Yes, vitamin D deficiency is a major problem in most parts of India. Even most Indian doctors are vitamin D deficient. That's a major health problem for the country. And vitamin B-12 deficiencies are a very common problem for vegetarians and vegans, because plants are a very poor source of B-12. Virtually everyone else (other than vegetarians and vegans) absorb plenty of vitamin B12 from the meat in their diet. But it's possible for even carnivores to become B-12 deficient after a few years of living with MC, because of the malabsorption problem.Shray wrote:I’ve noticed that vitamin D and B12 levels tend to be low in my community overall.
The failure to take those additional biopsies during your original colonoscopy was a major medical mistake, but if you do allow another colonoscopy, the examination will almost surely show that the inflammation (due to MC) in your colon is worse in all of the other parts of your colon than it was in the recto-sigmoid area. A diagnosis of MC is virtually never incorrect. The only problem with diagnosing MC is that many cases are overlooked, and therefore, misdiagnosed. And your doctor's observation about MC mostly affecting people in their 50s and 60s is true, but that's irrelevant because people of any age can develop MC. About 10 years ago we had a member of this forum whose daughter had been diagnosed with MC before her fourth birthday. Over the years, many people who have been diagnosed with MC in their 20s, 30s, and 40s have joined this forum and learned how to control their symptoms by making diet changes.
I hope this helps,
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.
Re: Can MC cause erosions?
Thank you Tex, for a detailed insight once again!
This forum and your book has been very helpful and I am making my own diet chart. One step at a time.
Additionally, I understand that MC (Microscopic Colitis) is unrelated to the small intestine, correct? My enterography report came back normal with no abnormalities noted.
Off-topic observation :
I have noticed that when I consume curd (the curd I consume is made from toned milk - low fat milk), my stools tend to be more formed and consistent compared to when I avoid it. Many doctors also recommend curd as beneficial for the gut, so could this suggest that I am not sensitive to casein? On the other hand, whenever I consume milk, my symptoms tend to worsen, which I suspect may be due to lactose, as my inflamed gut may have difficulty digesting it. You also write in your book MC that we cannot digest milk if our gut has not healed and which could take upto 5-6 months. I would appreciate your insights on this.
This forum and your book has been very helpful and I am making my own diet chart. One step at a time.
I can now definitely relate to your point. I have noticed that the initial portion of my stool appears normal, but it gradually becomes narrower, resembling pencil-like shapes, and eventually is passed in very small, thin portions. This pattern may suggest that the inflammation is more pronounced in the early part of the colon rather than in the latter sections. Is this a correct interpretation?
Additionally, I understand that MC (Microscopic Colitis) is unrelated to the small intestine, correct? My enterography report came back normal with no abnormalities noted.
I looked into RBC magnesium tests at labs in my area, but I was surprised to find that none of them offer this test. Instead, they only perform serum magnesium tests, which, as expected, typically show magnesium levels within the normal range.
Off-topic observation :
I have noticed that when I consume curd (the curd I consume is made from toned milk - low fat milk), my stools tend to be more formed and consistent compared to when I avoid it. Many doctors also recommend curd as beneficial for the gut, so could this suggest that I am not sensitive to casein? On the other hand, whenever I consume milk, my symptoms tend to worsen, which I suspect may be due to lactose, as my inflamed gut may have difficulty digesting it. You also write in your book MC that we cannot digest milk if our gut has not healed and which could take upto 5-6 months. I would appreciate your insights on this.
Re: Can MC cause erosions?
Yes.Shray wrote:Is this a correct interpretation?
That's what most gastroenterologists believe, because that's the way MC was originally described. But published research shows that for at least half of us, our small intestine is also damaged. The damage is just not enough to qualify for a celiac diagnosis. The level of damage is usually limited to a Marsh 1 level. In other words, the inflammation is limited to the tips of the villi. But logic suggests that we all have small intestinal inflammation when our MC is active. Otherwise we would not have the incomplete digestion that occurs with active MC.Shray wrote:Additionally, I understand that MC (Microscopic Colitis) is unrelated to the small intestine, correct? My enterography report came back normal with no abnormalities noted.
In a normal human digestive system, digestion is completed by the time food exits the small intestine. The colon does no digestion, it only extracts water and electrolytes from the stool, for recycling. Furthermore, diarrhea does not originate in the colon. Published research shows that diarrhea originates in the small intestine, and is only continued in the colon. For MC patients, most of whom have secretory diarrhea, additional water is infused into the fecal stream as it passes through the colon. This is what causes the watery diarrhea. But the point here is that if the small intestine was not inflamed, food would be properly digested, rather than the poor digestion that occurs with MC.
Your interpretation is probably correct. You will know for sure after your inflammation fades away, because unless you have always had lactose intolerance, when the inflammation disappears, lactose should no longer be a problem, and your digestion and should be normal (and so should your bowel movements)Shray wrote:I have noticed that when I consume curd (the curd I consume is made from toned milk - low fat milk), my stools tend to be more formed and consistent compared to when I avoid it. Many doctors also recommend curd as beneficial for the gut, so could this suggest that I am not sensitive to casein? On the other hand, whenever I consume milk, my symptoms tend to worsen, which I suspect may be due to lactose, as my inflamed gut may have difficulty digesting it. You also write in your book MC that we cannot digest milk if our gut has not healed and which could take upto 5-6 months. I would appreciate your insights on this.
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.
Re: Can MC cause erosions?
Thank you Tex, 
You have been very supportive with my questions and doubts. I would also like to appreciate you on the efforts you have done to spread awareness about this disease. I wish you a long healthy prosperous life. Health is the foundation of a good life, and I sincerely hope everyone stays disease-free.
You have been very supportive with my questions and doubts. I would also like to appreciate you on the efforts you have done to spread awareness about this disease. I wish you a long healthy prosperous life. Health is the foundation of a good life, and I sincerely hope everyone stays disease-free.
Re: Can MC cause erosions?
Thanks, I appreciate your feedback, and your kind words.
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.