Visit the Microscopic Colitis Foundation Website
Well I have managed to find here on this site probably more information on MC than all the other information I've compiled over the past many months.
I started with all the classic symptoms and tried all the basic remedies and no relief from the constant diarrhea, as the weeks and months passed it worsened, uncotrollable and frequent became the norm, just going to work became a nightmare, as most of you have experienced. Many doctor visits later (thanks to HMO) I had a colonoscopy, fortunately the Dr. did several biopsies. I went for the consultation and he did mention collagenous colitis, but almost in passing, he summed up my symptoms by referring me to a surgeon to do a biopsy on swollen lymph nodes that were picked up on an earlier CT scan. The surgeon shook his head a little, but actually took the time to explain it a little, he said all of my symptoms could be attributed to it, gave a little advice about using nsaid and smoking then scheduled me for a hernia operation, hernia showed up on the earlier scan as well.
Well I had the hernia surgery 2 weeks ago, my symptoms from MC had mostly subsided during this time, maybe the anesthesia or vicodin, but I started to feel the all to familiar rumblings in the past few days.
So the journey to heal thyself begins in ernest today.
It's difficult to explain to anyone just how it feels, the accidents while few have been extremely humiliating, the changes you must make to work around it unbelievable. Thanks to all who post and especially those who put this site together, for me it's like stumbling into a pot of gold, only better.
God Bless,
Dan
Oakley, CA.
Hello
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Welcome Dan,
Sorry you had to find us, but glad you did. The response of your docs is very familiar. My doc said the pathology report showed microscopic colitis but that that really didn't mean anything. WHAT! I came home, googled microscopic colitis and found this wonderful group of people.
NSAIDs were my trigger but I later found out that I am gluten intolerant. I didn't react as strongly as some to gluten initially, but now, the longer I'm off gluten, the worse my reaction if I get exposed.
You will find your path to healing. We all react differently, but do find our way through the ideas and support found here.
Katy
Sorry you had to find us, but glad you did. The response of your docs is very familiar. My doc said the pathology report showed microscopic colitis but that that really didn't mean anything. WHAT! I came home, googled microscopic colitis and found this wonderful group of people.
NSAIDs were my trigger but I later found out that I am gluten intolerant. I didn't react as strongly as some to gluten initially, but now, the longer I'm off gluten, the worse my reaction if I get exposed.
You will find your path to healing. We all react differently, but do find our way through the ideas and support found here.
Katy
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome to the family Dan!
You are so correct in saying that this site is a gold mine. All of us have worked so hard to compile information and ideas that you will never receive from your doctor - well almost never.
Stick around and sorry you had to find us this way but feel free to post, whine, vent and be happy with us.
Maggie
You are so correct in saying that this site is a gold mine. All of us have worked so hard to compile information and ideas that you will never receive from your doctor - well almost never.
Stick around and sorry you had to find us this way but feel free to post, whine, vent and be happy with us.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Hiya Dan and 
So glad you found us! We have all walked in your mocassins and can relate to your frustration and embarrassment.
One of the characteristics of those with MC is knowing the location of the public bathrooms within a 10 mi. radius. Before I went into remission I could never drive anywhere with a group - I was always afraid I might have to stop immediately to poop. So I had to drive by myself everywhere. I am lucky in that I never had a public accident, although I did have one in my car one morning taking my son to school. It is always wise to keep wipes and a change of underwear (and more) close by during the work day. Oh , I did have a near public accident one day when the urge hit and I was at the entrance to my community. I had to pull the car over and squat in broad daylight. Luckily, no one came by at that moment.
But, as you will see from reading the posts here, most DO go into remission and gain control over the MC. It has been about 8 years for me now, and I am completely controlled by diet alone.
As one of the pioneers here, I appreciate YOUR appreciation for this website. We have strived to maintain it like a family, and it has worked! I stick around here to "pay it back" - I owe such gratitude to those members who helped me when I first came aboard. I believe I would still be sick today if I hadn't learned about MC from them, especially the "gluten connection". Plus, I really feel like this place is family, where anything related to MC can be discussed without judging.
I also believe that this website contains the very best advice on how to achieve remission. The medical world (except for Dr. Fine) is still clueless for the most part (and I say this as a physician myself - although I am a pediatrician and not a GI doc).
Looking forward to further chats.......
Hugz,
Polly
So glad you found us! We have all walked in your mocassins and can relate to your frustration and embarrassment.
One of the characteristics of those with MC is knowing the location of the public bathrooms within a 10 mi. radius. Before I went into remission I could never drive anywhere with a group - I was always afraid I might have to stop immediately to poop. So I had to drive by myself everywhere. I am lucky in that I never had a public accident, although I did have one in my car one morning taking my son to school. It is always wise to keep wipes and a change of underwear (and more) close by during the work day. Oh , I did have a near public accident one day when the urge hit and I was at the entrance to my community. I had to pull the car over and squat in broad daylight. Luckily, no one came by at that moment.
But, as you will see from reading the posts here, most DO go into remission and gain control over the MC. It has been about 8 years for me now, and I am completely controlled by diet alone.
As one of the pioneers here, I appreciate YOUR appreciation for this website. We have strived to maintain it like a family, and it has worked! I stick around here to "pay it back" - I owe such gratitude to those members who helped me when I first came aboard. I believe I would still be sick today if I hadn't learned about MC from them, especially the "gluten connection". Plus, I really feel like this place is family, where anything related to MC can be discussed without judging.
I also believe that this website contains the very best advice on how to achieve remission. The medical world (except for Dr. Fine) is still clueless for the most part (and I say this as a physician myself - although I am a pediatrician and not a GI doc).
Looking forward to further chats.......
Hugz,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Welcome, Dan. As a relative newbie myself, I can tell you how much better it's made me feel to know that I'm not the only person in the world who has this. (Although I certainly wouldn't wish it on anyone!) Even the most sympathetic of friends and family can't really understand what it's like, so it's so encouraging to have the support of the members of this board. And you're right about there being more information here than anywhere else. I searched for every possible cause of my symptoms for five years and never once did I see MC mentioned anywhere. In the last two months, I have learned more here than from any other source. Although I am not in remission yet, I hope that with the information I've learned here and implemented into my treatment, I soon will be. Hope you will be, too.
Looking forward to "seeing" you around.
Courtney
Looking forward to "seeing" you around.
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Hi Dan,
Welcome to the family. As you have found, no one truly understands MC, unless they actually have the disease. We consider ourselves a family, because obviously, everyone here really does understand how you feel - we've been there.
Clearly, the surgeon you spoke with understands more about the disease, than your GI doc. That may seem strange, at first glance, but many members here have found that they're able to get more support from their PCPs, than from their GI docs, simply because their doctor is willing to listen and learn, whereas their GI doc thinks that he/she already knows it all, or thinks that the knowledge is not available, (because they either haven't looked, or they are too hard-headed to think "out of the box").
The vicodin does help to "settle the bowels", since most opiates tend to reduce motility, by suppressing the peristaltic contractions of the intestines. Also certain antibiotics, especially those belonging to the fluoroquinolone family, such as ciproflaxacin, are frequently prescribed for abdominal surgery, and we have found that cipro will put a moratorium on the D, (diarrhea), due to MC, virtually 100% of the time. It's possible that you might have been given a script for that, after the surgery.
We appreciate you joining us, in your quest to find the best path back to good health. Please feel free to ask anything, and please keep us updated on your progress, (or lack of progress). As has already been pointed out, anytime we are stumped, frustrated, discouraged, or whatever, we can come here to compare notes, and to find support, suggestions, and ideas on additional options to try. The beauty of it all is that we know that these ideas have been tested out by people just like us, walking the same path. Compared with the "cold", impersonal atmosphere in most GI docs' offices, support such as this can be priceless, especially at the times when we feel that we are running out of hope. Trust me, you WILL get your life back.
Again, welcome aboard,
Tex
Welcome to the family. As you have found, no one truly understands MC, unless they actually have the disease. We consider ourselves a family, because obviously, everyone here really does understand how you feel - we've been there.
Clearly, the surgeon you spoke with understands more about the disease, than your GI doc. That may seem strange, at first glance, but many members here have found that they're able to get more support from their PCPs, than from their GI docs, simply because their doctor is willing to listen and learn, whereas their GI doc thinks that he/she already knows it all, or thinks that the knowledge is not available, (because they either haven't looked, or they are too hard-headed to think "out of the box").
That bit of insight, (that all of your symptoms could be attributed to MC), makes that doctor more knowledgeable about MC than probably 99.99% of all the doctors practicing today. I am truly impressed.Dan wrote:The surgeon shook his head a little, but actually took the time to explain it a little, he said all of my symptoms could be attributed to it,
The vicodin does help to "settle the bowels", since most opiates tend to reduce motility, by suppressing the peristaltic contractions of the intestines. Also certain antibiotics, especially those belonging to the fluoroquinolone family, such as ciproflaxacin, are frequently prescribed for abdominal surgery, and we have found that cipro will put a moratorium on the D, (diarrhea), due to MC, virtually 100% of the time. It's possible that you might have been given a script for that, after the surgery.
We appreciate you joining us, in your quest to find the best path back to good health. Please feel free to ask anything, and please keep us updated on your progress, (or lack of progress). As has already been pointed out, anytime we are stumped, frustrated, discouraged, or whatever, we can come here to compare notes, and to find support, suggestions, and ideas on additional options to try. The beauty of it all is that we know that these ideas have been tested out by people just like us, walking the same path. Compared with the "cold", impersonal atmosphere in most GI docs' offices, support such as this can be priceless, especially at the times when we feel that we are running out of hope. Trust me, you WILL get your life back.
Again, welcome aboard,
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 to all for the warm welcome. Like everyone else, you learn the rules of the road so to speak, extra clothing "just in case", knowing your route very well and ALL restrooms, times of day when symptoms typically cause problems, all the little things people without MC take for granted.
Well for now I am searching/reading old threads as questions arise I'll be sure to post them. I am very interested in a link to auto-immune diseases like arthritis, coming from a family with many generations of rheumatoid arthritis, it has piqued my curiosity if there is a link, and if there have been others in my family with MC that never spoke about it.
Thanks again, Dan
Well for now I am searching/reading old threads as questions arise I'll be sure to post them. I am very interested in a link to auto-immune diseases like arthritis, coming from a family with many generations of rheumatoid arthritis, it has piqued my curiosity if there is a link, and if there have been others in my family with MC that never spoke about it.
Thanks again, Dan
Dan,
Welcome to this group. I also am new to this Board, although I hung around in the background as a guest for several months before I joined.
I am as interested in any link between this and other auto-immune diseases. My Mom was diagnosed with two different forms of lupus and my Dad had severe arthritis. I remember the last year or so before my Dad passed away that my Mom would rant and rave about him not making it to the bathroom from the garden. I don't believe he was ever diagnosed with rheumatoid arthritis.
I have posted a question under the subject of SED rate. I have been having a lot of joint/muscle issues with a high SED rate for over a year. All the tests came back negative for arthritis or lupus, etc. however my rheumatologist has been working with my GI on another patient who is having same problems and high SED rate. They are thinking the high SED rate is due to the immune system compromised by the colitis.
I would ask that you please share anything you find on this link, as will I.
Good luck in your journal to wellness. I have had frustrating times and good ones. I say that so you can be prepared when you have the bad days.
Jan
Welcome to this group. I also am new to this Board, although I hung around in the background as a guest for several months before I joined.
I am as interested in any link between this and other auto-immune diseases. My Mom was diagnosed with two different forms of lupus and my Dad had severe arthritis. I remember the last year or so before my Dad passed away that my Mom would rant and rave about him not making it to the bathroom from the garden. I don't believe he was ever diagnosed with rheumatoid arthritis.
I have posted a question under the subject of SED rate. I have been having a lot of joint/muscle issues with a high SED rate for over a year. All the tests came back negative for arthritis or lupus, etc. however my rheumatologist has been working with my GI on another patient who is having same problems and high SED rate. They are thinking the high SED rate is due to the immune system compromised by the colitis.
I would ask that you please share anything you find on this link, as will I.
Good luck in your journal to wellness. I have had frustrating times and good ones. I say that so you can be prepared when you have the bad days.
Jan
Dan,
There is definitely a link, and that link is gluten sensitivity. Before I adopted the diet, (roughly six years ago), I could barely get around sometimes, I still have the crooked fingers to show that I once had a major problem with RA, and my knees aren't what they used to be, but these days, the symptoms are very minor, and my canes were retired years ago. I have tried, without success, to convince a local friend or two with severe RA, to at least try the diet for a few weeks, to see if it might reduce their symptoms, but they always chose to trust their doctors instead, and now they are in wheelchairs, and the high-powered drugs that their doctors have prescribed, no longer give them any significant relief from their symptoms. Consequently, I don't know if the diet would work for someone who doesn't have MC, or not, but I see no reason why it wouldn't. There is a huge problem with gluten sensitivity in this world, and the main stumbling block to resolving that problem is the current medical establishment attitude, bias, ignorance, reluctance to change, or whatever you want to call it.
MC was only described a little over 20 years ago, so prior to about 10 years ago, very, very few people were diagnosed with it, and, of course, over 20 years ago, it was impossible to get a diagnosis of MC. Many doctors still erroneously believe that MC is a rare disease, but the fact of the matter is that it is not really rare at all, they just haven't been looking for it, and you can't diagnose MC unless you look for it, and, of course, you have to know how to look for it. Now that they are finally beginning to look, they are finding it, in ever-increasing numbers.
IOW, we have to guess at whether any of our ancestors might have had the disease, but once you understand the characteristics of the disease, (IOW, once you have it), it is relatively easy to add up the signs, and come to a conclusion.
Tex
There is definitely a link, and that link is gluten sensitivity. Before I adopted the diet, (roughly six years ago), I could barely get around sometimes, I still have the crooked fingers to show that I once had a major problem with RA, and my knees aren't what they used to be, but these days, the symptoms are very minor, and my canes were retired years ago. I have tried, without success, to convince a local friend or two with severe RA, to at least try the diet for a few weeks, to see if it might reduce their symptoms, but they always chose to trust their doctors instead, and now they are in wheelchairs, and the high-powered drugs that their doctors have prescribed, no longer give them any significant relief from their symptoms. Consequently, I don't know if the diet would work for someone who doesn't have MC, or not, but I see no reason why it wouldn't. There is a huge problem with gluten sensitivity in this world, and the main stumbling block to resolving that problem is the current medical establishment attitude, bias, ignorance, reluctance to change, or whatever you want to call it.
MC was only described a little over 20 years ago, so prior to about 10 years ago, very, very few people were diagnosed with it, and, of course, over 20 years ago, it was impossible to get a diagnosis of MC. Many doctors still erroneously believe that MC is a rare disease, but the fact of the matter is that it is not really rare at all, they just haven't been looking for it, and you can't diagnose MC unless you look for it, and, of course, you have to know how to look for it. Now that they are finally beginning to look, they are finding it, in ever-increasing numbers.
IOW, we have to guess at whether any of our ancestors might have had the disease, but once you understand the characteristics of the disease, (IOW, once you have it), it is relatively easy to add up the signs, and come to a conclusion.
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.
Dan,
Not much I can add that everone else has not already said. Like you, I am a relative newcomer to this site (found it in Oct.). I have also had this problem for many years (6) but did not know what it was until Aug. of this year.
I have learned a lot from everyone on this site. I have tried medications (Asacol) but it did not help and gave me bad side effects. I am trying diet now like others on this site have done, and many have achieved remission. It is a bit tricky for me because I am also a vegetarian. It will be a long journey for me to get just the right diet, but everyone on this site is very helpful in answering questions.
I hope you find many answers, and many friends on this site.
Not much I can add that everone else has not already said. Like you, I am a relative newcomer to this site (found it in Oct.). I have also had this problem for many years (6) but did not know what it was until Aug. of this year.
I have learned a lot from everyone on this site. I have tried medications (Asacol) but it did not help and gave me bad side effects. I am trying diet now like others on this site have done, and many have achieved remission. It is a bit tricky for me because I am also a vegetarian. It will be a long journey for me to get just the right diet, but everyone on this site is very helpful in answering questions.
I hope you find many answers, and many friends on this site.
Dan,
You might be interested in these posts:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8810
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8806
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8815
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8799
Tex
You might be interested in these posts:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8810
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8806
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8815
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8799
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.