Hello! This looks like a great forum. I’m hoping you might be able to help me with some questions I have.
I was dx with MC (LC) in early 2006. The biopsy showed very mild infiltration and my symptoms were loose stools but no big D, although I had one big episode of D two years earlier. I was already on a gluten free diet when I got the dx and soon after the dx gave up dairy as well. I think the loose stools cleared up but don’t remember exactly when.
About 3-4 months later I began to have serious constipation and abdominal pain a few hours after eating and in the night. I didn’t associate it with MC because there was no D or loose stools. I used some herbal remedies which alleviated the problem over time. Since then I’ve had two subsequent ‘flares’ of the same problem each one getting worse.
This third episode, the worst yet, came on slowly beginning in May 2007 with serious constipation again and occasional bouts of abdominal pain, so occasional I didn’t realize it was another ‘flare.’ The abdominal pain began to slowly increase in frequency in the autumn and by December I was having pain just about after every meal (a few hours afterwards), even though my diet was very simple, and in the night, every night. Quite strong pain and I would be awake for a few hours in discomfort and then it would pass.
Here’s my confusion. I’m not sure if it’s MC type pain or something else. Although I had some serious pain now and then in the early days after certain foods, it wasn’t so frequent so I don’t remember the characteristics so well. Now, there’s strong tightness, like a knot, around my navel, and hard lumps there, and sometimes I have sensations of scraping or feeling bruised in certain spots in my large intestine or there’s a sharp feeling or my guts just sometimes felt raw. It feels like both my small intestine and large intestine are involved. What seems different is the scraping or feeling bruised or raw feeling, but I’m not sure.
I’ve been eating a highly restricted diet for quite a long time (definitely no allergenic-type food) due to a problem I have processing phenols (which naturally occur in food and in synthetic chemicals and fragrance) and amines. I was eating a paleo-type diet. At the beginning of this year, I had to give up chicken, fish, and the small amounts of red meat I ate, which all clearly were causing the worst problems with my gut. I think I was not digesting meat well and this ended up as a problem with the hydrogen sulfide producing bacteria, which can cause damage to the intestinal walls. Dr. Fine mentions this on his website.
I cannot eat any vegetarian protein sources either like soy or beans as they cause the same problem. Also, I now seem to be malabsorbing fat/oil cause even the tiniest amount gives me neurological symptoms, but my fecal fat test from Enterolab in 2006 was normal, not even near the abnormal threshold. Since this third episode got so bad, I’ve had to eat 5 small meals with everything well cooked. It took some time after stopping the meat, but with the 5 small meal plan, I do pretty well, but I can even get problems from the simple food I eat, if I eat too much, not cooked enough, etc. Though definitely not as severe as eating meat.
My foods include chayote, Chinese cabbage, and very well cooked brown rice and millet. I only started eating brown rice and millet after I stopped meat, since I had to eat something. I can’t tolerate any other grains.
My sed rate was slightly elevated and my ANA was just over the abnormal threshold last September, for the first time ever.
I’ve read that recent research shows that constipation is also associated with MC. In my case, I think it stems a great deal from my phenol problem as I become very dehydrated by any exposures or wrong foods and get very constipated. This seems to be Barta’s implication when he says D or C can depend upon food intolerances.
Both Dr. Fine (on his website) and Barta indicate that in subsequent development of UC or Crohn’s, preceding MC is probably a microscopic manifestation of the disease before typical manifestations like ulceration, etc. However this is uncharted territory since MC is a newer disease, no one knows for certain. I started to wonder if I might be developing Crohn’s or UC because of the type of pain I have.
I realize that you all are not doctors, but any insight you might provide would be a great help. I am not in a position to get a colonoscopy at the moment.
My main questions is: Does this seem like MC type pain---did you ever get a bruising, scraping, sharp type feeling or raw gut feeling? Does this sound like an MC relapse or do you think it could possibly be Crohn’s or UC? Does anyone know how common it is for Crohn’s or UC to develop after MC dx?
I can see from your posts that I’ve made a few mistakes, although generally my diet has been excellent. On the paleo diet, I ate a lot of almonds, which I finally stopped in April 2007. I rarely ate red meat for a long time, but due to circumstances I ate a lot more than usual from September 2006 to April 2007. I’ve been gluten free for three years, except for a trial of oats in 2007. I’ve been casein free for about two years. Until last April, I only ate about 7 or 8 low starch vegetables, but perhaps they may have been problematic.
This is probably a totally obvious MC relapse and it may seem nuts that I missed it, but the C and no D made me confused! Any thoughts you could share would help. My big question is about the type of pain. If this is actually Crohn’s or UC, I would like to know and be approaching it correctly. If it’s an MC relapse, that’s interesting, since I’ve been gluten and casein free for quite some time. I don’t know what else to cut out without ending up with a food-free diet and I’ve lost a huge amount of weight since I had to give up meat and fat/oil (and I was already thin). Sorry this is so long.
Wayne, thanks for activating my registration. It was in the spam box as you suggested.
Thanks! Sandra Lee
Is it MC pain?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Sandra,
And welcome to our on-line family. I have a doctor's appointment coming up in a few minutes, so must make this short. First, yes, many of us have MC that sometimes causes C, rather than D.
Second, there are very, very few documented cases where MC segued into UC or Crohn's. It is not even known if it is possible. Having MC does not make us immune to any other diseases, so it's possible to have another IBD along with MC, (but very rare, of course).
Concerning the pain, I have a question: do you still have your gallbladder? Is the pain primarily located just under your ribcage? Does it subside after a few hours?
Again, welcome to our discussion board.
Tex (aka Wayne)
And welcome to our on-line family. I have a doctor's appointment coming up in a few minutes, so must make this short. First, yes, many of us have MC that sometimes causes C, rather than D.
Second, there are very, very few documented cases where MC segued into UC or Crohn's. It is not even known if it is possible. Having MC does not make us immune to any other diseases, so it's possible to have another IBD along with MC, (but very rare, of course).
Concerning the pain, I have a question: do you still have your gallbladder? Is the pain primarily located just under your ribcage? Does it subside after a few hours?
Again, welcome to our discussion board.
Tex (aka Wayne)
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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Sandra_Lee
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Very helpful!
Thanks Tex/Wayne,
That's very helpful to know about the rarity of MC turning into Crohn's or UC and that C is also common, not just D.
The pain isn't under my rib cage, it's definitely in my large intestine (the sharp or scraping pain) and the tightness around the navel, presumably small intestine. But yes, still have the gall bladder.
Thanks very much for your input. Still interested to hear if other people's pain is like this. Sandra Lee
That's very helpful to know about the rarity of MC turning into Crohn's or UC and that C is also common, not just D.
The pain isn't under my rib cage, it's definitely in my large intestine (the sharp or scraping pain) and the tightness around the navel, presumably small intestine. But yes, still have the gall bladder.
Thanks very much for your input. Still interested to hear if other people's pain is like this. Sandra Lee
Hi Sandra,
Well I had (or have) LC. And mine is primarily the C version, but can turn into D when I've been backed up for too long and I get what I call a dumping syndrom type response, where I go and go and go and then finally it's done for a while.
My own theory is that my LC was caused by small intestinal bacterial overgrowth of primarily Methane producing bacteria. In fact this is what I was last diagnosed with. I've had various treatments for this and felt 100% back to normal when I had neomycin, but the problem is that it keeps coming back. I think that the methane producing bacteria are the most difficult to get rid of for various reasons and it seems to be the case for me.
I wish I had the answer, but I'm still working on it. My GI dr says that I'm his most "difficult" patient, in that mine just won't go away. I'm trying various things to see how it would help. About the only thing I have yet to try that my GI Dr recommend is an elemental diet of vivonex for 2 weeks, not exactly something I want to do, though if it helped permanently or even longer term than the antibiotics I'd give it a try. I mainly don't want to as I've heard how terrible the stuff is, it would have to be out of pocket at $500 as it's not covered by insurance, and finally I don't know if it will help that much.
Some things that seem to help short term or a little are things that help eliminate the bacteria. Increasing gut motility with serotonin, ginger or other prokinetics (erithromycin, motolin, dopamine), avoiding alkaloids such as those found in foods like gluten, dairy as well as lopridimide (sp). Increasing immune response via Low Dose Naltrexone, L-Arginine+L-Lysine, increased alkaline phospotase. Something that helps both of these things is to learn to relax more, meditation, mindfulness, exercise, etc. Natural antibiotics like ginger, cinnomon, garlic, grape seed extract, olive leaf extract, increasing stomach acid, supplementing with HCL. Fnally using digestive enzymes that can break down polysaccharides such as fructose, lactose, sucrose, cellulose and others, or just avoiding them as this feeds the bacteria as well.
Thanks,
Mike
Well I had (or have) LC. And mine is primarily the C version, but can turn into D when I've been backed up for too long and I get what I call a dumping syndrom type response, where I go and go and go and then finally it's done for a while.
My own theory is that my LC was caused by small intestinal bacterial overgrowth of primarily Methane producing bacteria. In fact this is what I was last diagnosed with. I've had various treatments for this and felt 100% back to normal when I had neomycin, but the problem is that it keeps coming back. I think that the methane producing bacteria are the most difficult to get rid of for various reasons and it seems to be the case for me.
I wish I had the answer, but I'm still working on it. My GI dr says that I'm his most "difficult" patient, in that mine just won't go away. I'm trying various things to see how it would help. About the only thing I have yet to try that my GI Dr recommend is an elemental diet of vivonex for 2 weeks, not exactly something I want to do, though if it helped permanently or even longer term than the antibiotics I'd give it a try. I mainly don't want to as I've heard how terrible the stuff is, it would have to be out of pocket at $500 as it's not covered by insurance, and finally I don't know if it will help that much.
Some things that seem to help short term or a little are things that help eliminate the bacteria. Increasing gut motility with serotonin, ginger or other prokinetics (erithromycin, motolin, dopamine), avoiding alkaloids such as those found in foods like gluten, dairy as well as lopridimide (sp). Increasing immune response via Low Dose Naltrexone, L-Arginine+L-Lysine, increased alkaline phospotase. Something that helps both of these things is to learn to relax more, meditation, mindfulness, exercise, etc. Natural antibiotics like ginger, cinnomon, garlic, grape seed extract, olive leaf extract, increasing stomach acid, supplementing with HCL. Fnally using digestive enzymes that can break down polysaccharides such as fructose, lactose, sucrose, cellulose and others, or just avoiding them as this feeds the bacteria as well.
Thanks,
Mike
Sandra,
Okay, I'm back from a pretty much pointless doctor's appointment, (which seems to be a fairly common occurrence around here. LOL).
Yes, I've had the type of pain that you described, (if I understand you correctly), and I suspect that many of us here have, at one time or another. Usually, though, my pain was accompanied by bloating/distention, due to excessive gas that could not be purged. Sometimes it would feel as though something was trying to tear loose in my abdominal cavity.Whenever I was having a severe reaction, I could often feel a knot somewhere in my intestines, but after an hour or so, (or sometimes after only a few minutes), it would disappear. This suggests that the knot had to be due to a pocket of relatively high pressure gas, otherwise it could not have formed and dissipated so quickly. It always always felt hard, though, like something solid. In fact, I was once diagnosed by both my GP and a GI doc as having a tumor, based on the fact that when they palpated my gut, there was a hard knot there. I was sent to get prepped for CT scans, but of course, by the time I had the scans, the knot had disappeared, and everyone was clueless as to what had happened. LOL. (Most doctors don't understand MC at all).
Does any of this sound familiar?
Tex
Okay, I'm back from a pretty much pointless doctor's appointment, (which seems to be a fairly common occurrence around here. LOL).
Yes, I've had the type of pain that you described, (if I understand you correctly), and I suspect that many of us here have, at one time or another. Usually, though, my pain was accompanied by bloating/distention, due to excessive gas that could not be purged. Sometimes it would feel as though something was trying to tear loose in my abdominal cavity.Whenever I was having a severe reaction, I could often feel a knot somewhere in my intestines, but after an hour or so, (or sometimes after only a few minutes), it would disappear. This suggests that the knot had to be due to a pocket of relatively high pressure gas, otherwise it could not have formed and dissipated so quickly. It always always felt hard, though, like something solid. In fact, I was once diagnosed by both my GP and a GI doc as having a tumor, based on the fact that when they palpated my gut, there was a hard knot there. I was sent to get prepped for CT scans, but of course, by the time I had the scans, the knot had disappeared, and everyone was clueless as to what had happened. LOL. (Most doctors don't understand MC at all).
Does any of this sound familiar?
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.
Just want to welcome you here, Sandra. Don't ever be afraid to ask questions........Hi Sandra and 
Any chance you could also have IBS (irritable bowel syndrome)? This causes spasms of the bowel, which are painful and could cause hard areas. An antispasmotic like Levsin may give some relief. It is possible to have both MC and IBS at the same time.
When you poop, is the stool like little hard balls? This is how constipation is diagnosed.....not based upon the frequency of stools as most people assume. Perhaps you are feeling those hard balls of poop?
During times that I have had a flare, I have noticed that my gut seems to "tense up". IOW it feels as if it is being squeezed to death. Very uncomfortable feeling.
I hope that you figure this out soon - it's a bummer having to deal with it.
Love,
Polly
Any chance you could also have IBS (irritable bowel syndrome)? This causes spasms of the bowel, which are painful and could cause hard areas. An antispasmotic like Levsin may give some relief. It is possible to have both MC and IBS at the same time.
When you poop, is the stool like little hard balls? This is how constipation is diagnosed.....not based upon the frequency of stools as most people assume. Perhaps you are feeling those hard balls of poop?
During times that I have had a flare, I have noticed that my gut seems to "tense up". IOW it feels as if it is being squeezed to death. Very uncomfortable feeling.
I hope that you figure this out soon - it's a bummer having to deal with it.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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harvest_table
- Rockhopper Penguin
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- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Hi Sandra,
and Welcome to the Potty People!
I found this recently published article today about Complications of CC. I know you have LC but it might be of interest and relevant to you and others here since you asked about MC, Chrons and UC.
Glad you found us. This is a great support group.
Love,
Joanna
and Welcome to the Potty People!Nothing surprises me about MC the more we share with each other and learn- it's kind of all over the map for some. I personally have never had pain symptoms like some folks here and have been controlling my CC symptoms with a paleo type diet (like you) for a few years with good results.This is probably a totally obvious MC relapse and it may seem nuts that I missed it, but the C and no D made me confused! Any thoughts you could share would help. My big question is about the type of pain. If this is actually Crohn’s or UC, I would like to know and be approaching it correctly. If it’s an MC relapse, that’s interesting, since I’ve been gluten and casein free for quite some time.
I found this recently published article today about Complications of CC. I know you have LC but it might be of interest and relevant to you and others here since you asked about MC, Chrons and UC.
http://www.wjgnet.com/1007-9327/14/1643.aspOccasionally, evolution of collagenous colitis into severe ulcerative colitis or Crohn’s disease has been recorded[22-24]. With the onset of ulcerative colitis, complete disappearance of the collagen deposition occurred[22].
Glad you found us. This is a great support group.
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
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Sandra_Lee
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- Joined: Wed Mar 26, 2008 6:38 am
Thanks!
Thanks so much everyone. You've given me extremely useful feedback.
Mike, I will have to spend some time with all your useful suggestions. Due to my phenol problem I am not able to take any herbs. I also react very strongly to both enzymes and HCL probably due to mercury toxicity, it's not a digestive issue. They help my digestion but hurt other places! But I think i will find some useful suggestions once I learn more about the different supplements you suggest.
I take it by CD/MC 50-50 you mean that CD occurs more commonly with MC, like in 50% of the cases.
Joanna, thanks for your link and info too. I will check it out.
Polly, it could be IBS, but I don't think my sed rate and ANA would be elevated in that case. Also, in the past my calprotectin (sp?) has been elevated,which is one way to distinguish between IBS and IBD. I am going to try to have it tested again soon.
Tex, your description of your pain is very helpful. I haven't had bloating so much of late but gas is a big issue, especially when I was eating meat.
Better now but still a problem. I've greatly appreciated your post; you seem very knowledgeable about MC and health in general. Very helpful.
Also from one of your posts (can't remember to whom), I feel inspired to play with my 4 food diet and make sure one of those foods isn't aggravating me more. The millet is easy to digest, but brown rice hard. Chinese cabbage has only 20% of the sulfur of white cabbage, but still it could be contributing to gas.
To the others, thanks very much for the welcome!
Stay well! Sandra Lee
Mike, I will have to spend some time with all your useful suggestions. Due to my phenol problem I am not able to take any herbs. I also react very strongly to both enzymes and HCL probably due to mercury toxicity, it's not a digestive issue. They help my digestion but hurt other places! But I think i will find some useful suggestions once I learn more about the different supplements you suggest.
I take it by CD/MC 50-50 you mean that CD occurs more commonly with MC, like in 50% of the cases.
Joanna, thanks for your link and info too. I will check it out.
Polly, it could be IBS, but I don't think my sed rate and ANA would be elevated in that case. Also, in the past my calprotectin (sp?) has been elevated,which is one way to distinguish between IBS and IBD. I am going to try to have it tested again soon.
Tex, your description of your pain is very helpful. I haven't had bloating so much of late but gas is a big issue, especially when I was eating meat.
Better now but still a problem. I've greatly appreciated your post; you seem very knowledgeable about MC and health in general. Very helpful.
Also from one of your posts (can't remember to whom), I feel inspired to play with my 4 food diet and make sure one of those foods isn't aggravating me more. The millet is easy to digest, but brown rice hard. Chinese cabbage has only 20% of the sulfur of white cabbage, but still it could be contributing to gas.
To the others, thanks very much for the welcome!
Stay well! Sandra Lee
Re: Thanks!
That's difficult if you can't take any herbs. What are you doing for your mercury toxicity? All amalgams out? Done any form of Chelation? FWIW I'm chelating using the Cutler Protocol, as far as I've researched this is the safest and best way. I'm currently using DMSA at 25mg every 4 hours for 5 days and then 5 days off. Starting tomorrow I can finally add in the ALA, so I'm going to be doing this doesage every 3 hours during the day and 4 hours at night.Sandra_Lee wrote:Thanks so much everyone. You've given me extremely useful feedback.
Mike, I will have to spend some time with all your useful suggestions. Due to my phenol problem I am not able to take any herbs. I also react very strongly to both enzymes and HCL probably due to mercury toxicity, it's not a digestive issue. They help my digestion but hurt other places! But I think i will find some useful suggestions once I learn more about the different supplements you suggest.
Sorry, that was confusing. I'm saying that from my research of various studies I've found that 50% of patients with MC have Diarrhea and 50% have Constipation. This has me wondering how "rare" MC really is as I bet most folks don't get a colonoscopy when they have constipation.Sandra_Lee wrote: I take it by CD/MC 50-50 you mean that CD occurs more commonly with MC, like in 50% of the cases.
Sed rate and calprotectin could be elevated if the IBS were due to bacterial overgrowth and if you have a leaky gut. Mercury doesn't help here either.Sandra_Lee wrote: Joanna, thanks for your link and info too. I will check it out.
Polly, it could be IBS, but I don't think my sed rate and ANA would be elevated in that case. Also, in the past my calprotectin (sp?) has been elevated,which is one way to distinguish between IBS and IBD. I am going to try to have it tested again soon.
Boy, if you're not digesting meat well I'd say to look at the pancrease and it's enzymes as well as stomach acid production. Not only can sulfur contribute to gas, but the celulose can as well. Bacterial overgrowth can effect all of these things.Sandra_Lee wrote: Tex, your description of your pain is very helpful. I haven't had bloating so much of late but gas is a big issue, especially when I was eating meat.
Better now but still a problem. I've greatly appreciated your post; you seem very knowledgeable about MC and health in general. Very helpful.
Also from one of your posts (can't remember to whom), I feel inspired to play with my 4 food diet and make sure one of those foods isn't aggravating me more. The millet is easy to digest, but brown rice hard. Chinese cabbage has only 20% of the sulfur of white cabbage, but still it could be contributing to gas.
To the others, thanks very much for the welcome!
Stay well! Sandra Lee
HTH,
Mike
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Sandra_Lee
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Mike,
Thanks so much for your post. Good to know your are doing the Cutler protocol!!! I've done various things for my mercury problem, but none of them worked and may have made it worse so I gave up for awhile. I just learned of the Cutler protocol recently and hope to start soon. I'm sold on it and convinced that I will not see improvement without addressing the mercury/lead toxicity. I plan to start soon, but also want to see what my doctor suggests. He's the one who re-raised the mercury issue. I took out my amalgams in 2006, but think I started becoming mercury toxic in 2004 possibly from the heating oil used in our apartment. My husband is ill too.
About MC and C or D, I think you are right, most people don't get a colonoscopy for constipation!
I had an SBBO test done early one. I don't think that's my problem, but thanks for suggesting this. As you may know being familiar with the Cutler protocol, many people with IBD have low sulfate; my problem appears to be high, off the chart, sulfate, which Cutler says means you have it but are not using it. It looks like the mercury has disabled my phenol sufo-transferase enzyme or pathway, which accounts for my extreme food sensitivities (herbs and tea are almost all high in phenols, for example) and my problem with chemical sensitivity. All are detoxified on this pathway.
Also, you need to have enough sulfate and be using it properly for many functions in the body, like making digestive enzymes, bile acids, removing used neuro-transmitters, detoxification, and so on. I've learned what I've could about this by studying the problems and treatments for autistic kids, 90% have a sulfate/PST problem and many are mercury toxic.
So you are spot on, I am probably not making enough digestive enzymes and bile acids. My doctor (who treats with homeopathy) has put these types of things in my homeopathic remedy. I am slowly improving from my critical state so I can at least eat more of my 4 foods, but I don't think I will see significant improvement till I deal with the mercury. Not digesting my food properly may be irritating my colon and possibly re-stimulating the MC. But the inflammation could also be someplace else in my body.
You really know your stuff! I guess we all have to become experts to get well as these are complex illnesses.
I take your point about relaxation and meditation. Relaxation is not my first quality.
Many thanks!
Stay well!
Sandra Lee
Thanks so much for your post. Good to know your are doing the Cutler protocol!!! I've done various things for my mercury problem, but none of them worked and may have made it worse so I gave up for awhile. I just learned of the Cutler protocol recently and hope to start soon. I'm sold on it and convinced that I will not see improvement without addressing the mercury/lead toxicity. I plan to start soon, but also want to see what my doctor suggests. He's the one who re-raised the mercury issue. I took out my amalgams in 2006, but think I started becoming mercury toxic in 2004 possibly from the heating oil used in our apartment. My husband is ill too.
About MC and C or D, I think you are right, most people don't get a colonoscopy for constipation!
I had an SBBO test done early one. I don't think that's my problem, but thanks for suggesting this. As you may know being familiar with the Cutler protocol, many people with IBD have low sulfate; my problem appears to be high, off the chart, sulfate, which Cutler says means you have it but are not using it. It looks like the mercury has disabled my phenol sufo-transferase enzyme or pathway, which accounts for my extreme food sensitivities (herbs and tea are almost all high in phenols, for example) and my problem with chemical sensitivity. All are detoxified on this pathway.
Also, you need to have enough sulfate and be using it properly for many functions in the body, like making digestive enzymes, bile acids, removing used neuro-transmitters, detoxification, and so on. I've learned what I've could about this by studying the problems and treatments for autistic kids, 90% have a sulfate/PST problem and many are mercury toxic.
So you are spot on, I am probably not making enough digestive enzymes and bile acids. My doctor (who treats with homeopathy) has put these types of things in my homeopathic remedy. I am slowly improving from my critical state so I can at least eat more of my 4 foods, but I don't think I will see significant improvement till I deal with the mercury. Not digesting my food properly may be irritating my colon and possibly re-stimulating the MC. But the inflammation could also be someplace else in my body.
You really know your stuff! I guess we all have to become experts to get well as these are complex illnesses.
I take your point about relaxation and meditation. Relaxation is not my first quality.
Many thanks!
Stay well!
Sandra Lee