Question:

I want to thank you for the information….I am already receiving the newsletter for CC….. Just so tired of it and wanted someone else to talk to that also suffers from this form of IBD… I am in the extreme cases as I tend to find myself dehydrating very easily…. Thanks Again                              Maryjo…..who is tired of looking at the walls in the bathroom….

Response:

Is there anyone else on the newsgroup that has COLAGENOUS COLITIS? If so please get in touch with me as I would like to know what kind of meds your on and how you are doing? So when I go back to these Drs. who do not know anything about this form of IBD i can give them some ideas as the Prednisone doesn’t seem to be working this time as well as it did the first time…                         Maryjo…..

Response:

Maryjo Here are a couple web pages on collagenous collitis that might help educate your doctors. http://qurlyjoe.bu.edu/cducibs/colcolfaq.html http://www.bhcs.com/bumc/intestinalresearch/ http://www.ccfa.org/medcentral/library/basic/collag1.htm http://esynopsis.uchc.edu/S190.htm (also click on the ‘Search Medline at National Library of Medicine’ link at the bottom of the page.) There was one other person on this page with it. May be more on pages 1-4. http://tor-pw1.netcom.ca/~popcorn/list5.htm Howard – Hide quoted text — Show quoted text – Is there anyone else on the newsgroup that has COLAGENOUS COLITIS? If so please get in touch with me as I would like to know what kind of meds your on and how you are doing? So when I go back to these Drs. who do not know anything about this form of IBD i can give them some ideas as the Prednisone doesn’t seem to be working this time as well as it did the first time…                         Maryjo…..

Response:

If you read this FAQ, you’ll find contacts on the web and by email for a group of people with collagenous colitis. B Status: RO Collagenous/Microscopic Colitis FAQ Microscopic colitis (MC) is a name used to describe a chronic diarrheal syndrome that is caused by inflammation in the colon/large intestine (i.e., colitis). It is called "microscopic" colitis because the inflammation can be detected only with a microscope. During an endoscope procedure (colonoscopy or sigmoidoscopy), the colon looks normal. The presence or absence of a specific feature within the colonic inflammatory process as seen under the microscope (thickened collagen under the surface of the biopsy) has led to use of two other names for this syndrome: collagenous colitis and lymphocytic colitis. The authors of scientific journal articles differ in their opinions about which name to use (microscopic, collagenous, or lymphocytic). Yet, the symptoms and treatment of this syndrome are virtually identical, regardless of whether the collagen in the biopsy is thick or normal. Thus, the name microscopic colitis can be used to include both collagenous and lymphocytic colitis. In this FAQ, microscopic colitis is used to refer synonymously to either collagenous or lymphocytic colitis. Diagnosis is made based upon microscopic analysis of biopsies of the colon. The "typical" patient is a middle-aged woman; but it is seen in men, children as young as six and older people also. Possible initial misdiagnoses include stress, gastroenteritis, celiac sprue, lupus, or irritable bowel syndrome (IBS). It’s not unusual for diagnosis to take several years, since microscopic colitis is the form of inflammatory bowel disease least familiar to doctors and often the last considered. Patients sometimes seek treatment for an elusive form of arthritis as much as ten years prior to problems with diarrhea. This atypical arthritis can affect the back, hips and sometimes ribs. It can come and go, and can change locations. Other associated problems may include: iritis, purpura, thyroid diseases, pernicious anemia, idiopathic pulmonary fibrosis, fibromyalgia, unexplained severe itching, mouth sores, fatigue, depression, mitral valve prolapse and celiac sprue (also called celiac disease). There does not seem to be an association with Crohn’s disease, ulcerative colitis, or cancer. Most patients diagnosed with microscopic colitis are Caucasians living in Northern Europe, Canada, the United States, Australia and New Zealand. It does not appear to be contagious. Some patients report a close family member with the same diagnosis or with similar intestinal symptoms, and it appears there may be a hereditary tendency to get microscopic colitis. The major symptom of microscopic colitis is watery diarrhea that may be severe and sometimes even explosive. Necessary visits to the bathroom may number up to 30 times a day. In rare cases, the diarrhea may be severe enough to cause dehydration. Other symptoms may include weakness, difficulty eating, abdominal bloating, and nausea. The diarrhea may come in sudden bouts, giving only seconds of warning. There does not seem to be a consistent dietary factor contributing to diarrheal episodes. Certain foods, especially high fiber, fat, milk products, spices, wheat and/or uncooked fruit and vegetables, may aggravate it. On the contrary, some patients tolerate any foods — even when quite ill. Many have difficulty eating wheat, oats, bran and rye because they induce abdominal symptoms and diarrhea. This fact, as well as other scientific evidence, indicates that there may be clinical overlap of microscopic colitis with a disease called celiac sprue. Celiac sprue is caused by an immunologic reaction of the intestine to wheat, barley, rye, and oats. Approximately half of the patients with microscopic colitis report a sudden onset. They can pin down the exact day and location that symptoms started, often triggered by an initial bout with dysentery, giardia, or an undiagnosed intestinal illness. One theory is that the inflammatory response is caused by a bacterium or a bacterial toxin. Another theory suggests this is an autoimmune disease, although that hasn’t been conclusively established. A third suggests that non-steroidal anti-inflammatory drugs (NSAIDs, such as aspirin or ibuprofen) might be responsible or aggravate the symptoms in individuals predisposed to the disease by another mechanism. It may well turn out to be a combination of several of these factors. TREATMENT: Useful information has been sparse. This illness can come and go, with or without treatment, making it difficult to assess the effect of any treatment plan. Traditionally, treatment is started with sulfasalazine. Patients may improve with sulfasalazine, but they are not necessarily cured. For the many that don’t tolerate sulfasalazine, Asacol (one brand of mesalamine or 5-aminosalicylic acid) is typically prescribed. These medicines are thought to act as anti-inflammatory agents in the intestine. Anti-diarrheal medications such as Imodium and Lomotil are used for temporary relief, but tend to merely delay the diarrhea. Studies done with prednisone (a corticosteroid) do not sound very promising for long-term use. Most patients do respond quickly to this agent, so it can be useful to stop a severe attack. However, the diarrhea routinely returns when prednisone is discontinued. Long-term use of prednisone is discouraged because the side effects (formation of cataracts, bone degeneration, high blood pressure, and a tendency toward diabetes) can eventually be worse than the benefits. Some people report excellent short-term results with certain antibiotics; however, the results generally are not long lasting. A cholesterol-lowering drug called cholestyramine is helpful to some. Fiber in the form of psyllium hydrophilic mucilloid (like Metamucil) also helps some patients, but not others. Low dose tricyclic antidepressants (such as Doxepin or Elavil) can sometimes help with the joint and muscle pain. Surgical removal of the colon with formation of an ileostomy is a radical approach and is seldom used. Dr. Kenneth Fine at Baylor Medical Center in Dallas, Texas is the leading researcher investigating microscopic colitis. In a recent study, he determined that a high dose (8 or 9 chewable tablets per day) of Pepto-Bismol for 8 weeks can be quite effective. Preliminary results of a second study, which is testing the effect of Pepto-Bismol against a placebo, appear to verify this. Long-term outcomes are still under study. Dr. Fine maintains an excellent web site for this disease. Since his research moves at a fast pace, check his web site for current information: <http://www.bhcs.com/bumc/intestinalresearch Patients would do well to do their own research and attempt to remain knowledgeable and current, as few doctors know much about microscopic colitis. Although microscopic colitis is not progressive or fatal, it can be disabling. Thus, it is important that patients learn how to cope with the difficult social, physical and sometimes financial problems brought on by a disease that can change their lifestyle enormously. If you have been diagnosed with microscopic colitis, collagenous colitis, or lymphocytic colitis, or have an interest in it, you may obtain free copies of the collagenous colitis/microscopic colitis (CC/MC) newsletter, written by and for those with this disease. The newsletter is available only by e-mail. Its purpose is to share support and information. You may also request all past issues of the newsletter dating from August 1995 (more than 100, each about 6 pages long). For more information, visit the CC Club Microscopic Colitis web site at: <http://www.malinowski.com/colitis

Response:

Question:

I don’t think I’ve ever heard anyone mention that only certain TYPES of colitis are invited here!  Welcome to the group!  Sorry I can’t help with more information about your form of colitis.   Best of luck to your wife and you!     Kathi

Response:

I too was diagnosed with microscopic colitis at about the same time your wife was.  I tried the Asacol route but had a serious flare up this last week so I began taking prednisone (a corticosteroid).  I feel like a completely new person right now.  For almost 10 years I have had symptoms that were apparently all indicative of an autoimmune disorder, but every time I would go to a doctor they would only look at the current symptom and never consider my medical history.  I finally had a major flare up with multiple symptoms and had a doctor who was informed enough to take a complete history.  This has made all the difference in the world.  I fell like there might be light at the end of the tunnel after all.  They are thinking that I might have lupus as well as the colitis, but are still doing testing. I have also printed out the information about treatment with pepto bismol to take to my doctor and let him read it.  I have full faith in my gastroenterologist and will take his advice.  Personally, I am thinking that if I can go into remission by taking pepto bismol instead of prednisone…OK!  If not, well I am just so happy to be symptom free right now. I would suggest your wife might want to persue the possibility of celiac sprue as well as microscopic colitis, mostly because the vomiting was her first symptom.  Find a good doctor who is willing to work with her and not just prescribe the latest medication.  I am surprised that the Gastroenterologist referred her back to her primary care physician without first setting up a treatment plan for her. Best of luck to you both and I hope she is able to find some relief soon. Bonita

Response:

Hi-  We are new to this newsgroup as of this article.  I will try to give a history, and then ask some questions in future posts.   My wife (40 yrs old) has just been diagnosed with lymphocytic colitis (a couple of days ago).  The specialist’s office called back after weeks of a variety of tests, finally doing a colonscopy.  The colonoscopy looked OK, but microscopic inspection of some tissue found the problem.  This took about 2 months from her first attack.  The only information we have so far is what I have found on the internet.  Our primary care provider is out until Monday so I have been searching the internet and stumbled onto this group.   I will go into more detail about the events that we think led up to this.  We are thrilled to finally have a diagnosis, and understand it a little better based on what we have read on the internet (especially at http://qurlyjoe.bu.edu/cducibs/colcolfaq.html ). 12/27/98: We had a boiled dinner (Ham/potatoes etc.) which I wonder might have been the initial reason for her attack(s).  Everything was fine until a couple of days later. 12/29/98: 7pm We had spaghetti with meatballs) 11pm: My wife started vomiting. The vomiting occurred every 15 minutes for about 4 hours hours.  We finally called a doctor.  The doc said it was probably the flu.  After a couple more hours of vomiting we decided to go to the Emergency Room.  She became dehydrated. A number of blood tests were done. On an Xray they thought they saw a partial blockage in the intestine, which other docs seemed to have discounted later.  She was put on a restrictive diet by her primary care doc.  the most chronic sympton (which she has currently) is constant watery diarrhea and (now) mild abdominal pain and bloating, and somewat chronic fatique at the end of the day. 12/30-1/6/99: She felt somewhat nauseated and weak did not go to work at all.   She called the doctor back and had some more tests scheduled. 1/20/99 (approx):  She had more Xrays, blood tests, and an upper GI all came back fine. she had last about 15 lbs since 12/30. 2/10/99: Coloscopy done.  Colon looked normal during the procedure.  Some tissues were take for biopsy’s. 2/25/99: Specialist’s office called back with a diagnosis of Lymphocytic colitis.  They were unable to (or unwilling explain what it was or meantat that time).  They said talk to primary care doc.   2/26/99:  Called primary care doc, on vacation, call back Monday. During this time anytime she would go away from the restrictive diet (like any meat such hamburgers, steak etc. – she would feel nausea, and sometimes vomit. She only did steered from her diet 3 times in the past 2 months.  Each time she did she would pay for it We discovered giardia in our well last summer (7/98) after some very unusual floods that hit in June and July. We are beginning to think that this may have been the beginning cause of her problems.  Atleast in some of the research on the internet it sounds like that could possibly be one of root causes. We discovered last summer it because my wife raises cats and some of them were getting sick, and we had our well water tested after ruling out a bunch of other things for the cats. We would be anxious to hear from others with the same or other similar diagnosis.  If this is not the place to discuss this particular disease let us know.  Thank you very much.

Response:

Question:

Sue, Thank you so much for the FAQ and links. Learned much about my body with  your help. Susan – Hide quoted text — Show quoted text – Here’s the FAQ, the author runs a mailing list support group too so you might want to contact her. Received: from mail001.mediacity.com (mail001.mediacity.com [205.216.172.9])         by mail1.panix.com (8.8.8/8.8.8/PanixM1.3) with SMTP id QAA11983 Received: from cm20816641122.cableco-op.com (HELO ?208.166.41.122?) (208.166.41.122) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Status: RO Attached is the revised FAQ for Collagenous Colitis. Though we sent another last month, unfortunately the links on it were incorrect. Please post this revised FAQ ASAP. If you wish, instead of posting the whole FAQ, you can now just put a link to: www.malinowski.com/faq.htm which we will update more frequently. Other useful links: www.malinowski.com/colitis.htm which is the general Microscopic/Collagenous Colitis web site, which includes links to Collagenous Colitis Newsletter archive and the FAQ, and other links. All these links are in the FAQ below. Begin FAQ: Collagenous/Microscopic Colitis FAQ Microscopic colitis (MC) is a name used to describe a chronic diarrheal syndrome that is caused by inflammation in the colon/large intestine (i.e., colitis). It is called "microscopic" colitis because the inflammation can be detected only with a microscope. During an endoscope procedure (colonoscopy or sigmoidoscopy), the colon looks normal. The presence or absence of a specific feature within the colonic inflammatory process as seen under the microscope (thickened collagen under the surface of the biopsy) has led to use of two other names for this syndrome: collagenous colitis and lymphocytic colitis. The authors of scientific journal articles differ in their opinions about which name to use (microscopic, collagenous, or lymphocytic). Yet, the symptoms and treatment of this syndrome are virtually identical, regardless of whether the collagen in the biopsy is thick or normal. Thus, the name microscopic colitis can be used to include both collagenous and lymphocytic colitis. In this FAQ, microscopic colitis is used to refer synonymously to either collagenous or lymphocytic colitis. Diagnosis is made based upon microscopic analysis of biopsies of the colon. The "typical" patient is a middle-aged woman; but it is seen in men, children as young as seven and older people also. Possible initial misdiagnoses include stress, gastroenteritis, celiac sprue, lupus, or irritable bowel syndrome (IBS). It’s not unusual for diagnosis to take several years, since microscopic colitis is the form of inflammatory bowel disease least familiar to doctors and therefore often the last considered. Patients sometimes seek treatment for an elusive form of arthritis as much as ten years prior to problems with diarrhea. This atypical arthritis can affect the back, hips and sometimes ribs. It can come and go, and can change locations. Other associated problems may include: iritis, purpura, thyroid diseases, pernicious anemia, idiopathic pulmonary fibrosis, fibromyalgia, unexplained severe itching, mouth sores, fatigue, depression, mitral valve prolapse and celiac sprue (also called celiac disease). There does not seem to be an association with Crohn’s disease, ulcerative colitis, or cancer. Most patients diagnosed with microscopic colitis are Caucasians living in Northern Europe, Canada, the United States, Australia and New Zealand. It does not appear to be contagious. Some patients report a close family member with the same diagnosis or with similar intestinal symptoms, and it appears there may be a hereditary tendency to get microscopic colitis. The major symptom of microscopic colitis is watery diarrhea that may be severe and sometimes even explosive. Necessary visits to the bathroom may number up to 30 times a day. In rare cases, the diarrhea may be severe enough to cause dehydration. Other symptoms may include weakness, difficulty eating, abdominal bloating, and nausea. The diarrhea may come in sudden bouts, giving only seconds of warning. There does not seem to be a consistent dietary factor contributing to diarrheal episodes. Certain foods, especially high fiber, fat, milk products, spices, wheat and/or uncooked fruit and vegetables, may aggravate it. On the contrary, some patients tolerate any foods — even when quite ill. Many have difficulty eating wheat, oats, bran and rye because they induce abdominal symptoms and diarrhea. This fact, as well as other scientific evidence, indicates that there may be clinical overlap of microscopic colitis with a disease called celiac sprue. Celiac sprue is caused by an immunologic reaction of the intestine to wheat, barley, rye, and oats. Approximately half of the patients with microscopic colitis report a sudden onset. They can pin down the exact day and location that symptoms started, often triggered by an initial bout with dysentery, giardia, or an undiagnosed intestinal illness. One theory is that the inflammatory response is caused by a bacterium or a bacterial toxin. Another theory suggests this is an autoimmune disease, although that hasn’t been conclusively established. A third suggests that non-steroidal anti-inflammatory drugs (NSAIDs, such as aspirin or ibuprofen) might be responsible or aggravate the symptoms in individuals predisposed to the disease by another mechanism. It may well turn out to be a combination of several of these factors. TREATMENT: Useful information has been sparse. This illness can come and go, with or without treatment, making it difficult to assess the effect of any treatment plan. Traditionally, treatment is started with sulfasalazine. Patients may improve with sulfasalazine, but they are not necessarily cured. For the many that don’t tolerate sulfasalazine, Asacol (one brand of mesalamine or 5-aminosalicylic acid) is typically prescribed. These medicines are thought to act as anti-inflammatory agents in the intestine. Anti-diarrheal medications such as Imodium and Lomotil are used for temporary relief, but tend to merely delay the diarrhea. Studies done with prednisone (a corticosteroid) do not sound very promising for long-term use. Most patients do respond quickly to this agent, so it can be useful to stop a severe attack. However, the diarrhea routinely returns when prednisone is discontinued. Long-term use of prednisone is discouraged because the side effects (formation of cataracts, bone degeneration, high blood pressure, and a tendency toward diabetes) can eventually be worse than the benefits. Some people report excellent short-term results with certain antibiotics; however, the results generally are not long lasting. A cholesterol-lowering drug called cholestyramine is helpful to some. Fiber in the form of psyllium hydrophilic mucilloid (like Metamucil) also helps some patients, but not others. Low dose tricyclic antidepressants (such as Doxepin or Elavil) can sometimes help with the joint and muscle pain. Surgical removal of the colon with formation of an ileostomy is a radical approach and is seldom used. Dr. Kenneth Fine at Baylor Medical Center in Dallas, Texas is the leading researcher investigating microscopic colitis. In a recent study, he determined that a high dose (8 or 9 chewable tablets per day) of Pepto-Bismol for 8 weeks can be quite effective. Preliminary results of a second study, which is testing the effect of Pepto-Bismol against a placebo, appear to verify this. Long-term outcomes are still under study. Dr. Fine maintains an excellent web site for this disease. Since his research moves at a fast pace, check his web site for current information:  http://www.bhcs.com/bumc/intestinalresearch Patients would do well to do their own research and attempt to remain knowledgeable and current, as few doctors know much about microscopic colitis. Although microscopic colitis is not progressive or fatal, it can be disabling. Thus, it is important that patients learn how to cope with the difficult social, physical and sometimes financial problems brought on by a disease that can change their lifestyle enormously. If you have been diagnosed with microscopic colitis, collagenous colitis, or lymphocytic colitis, or have an interest in it, you may obtain free copies of the collagenous colitis/microscopic colitis (CC/MC) newsletter, written by and for those with this disease. The newsletter is available only by e-mail. Its purpose is to share support and information. You may also request all past issues of the newsletter dating from August 1995 (more than 114, each about 6 pages long). For more information, and to check out the newsletter archive, visit the CC Club Microscopic Colitis web site at: http://www.malinowski.com/colitis.htm Revised February 1999

Response:

   i am new to yor ng……i have collagen colitus……i have had the loss……and always tired……i had a colonoscopy done in may  where they removed a lot of polyps  and they were checked out   and found out to be collagen…….they tried lots of differents meds n me but prednison is the only thing that worked ……i have cut myself down to 5 mg ……and so far holding ok……i hated goig out for family gatherings cause i needed to be by a bathroom……when i went to rent our appt  i got one with two bathrooms   one is mine and the other one colitus…….dr doesnt seem to know   she just saysi will always have it

Lets look for shooting stars together!!

Response:

Here’s the FAQ, the author runs a mailing list support group too so you might want to contact her. Received: from mail001.mediacity.com (mail001.mediacity.com [205.216.172.9])         by mail1.panix.com (8.8.8/8.8.8/PanixM1.3) with SMTP id QAA11983 Received: from cm20816641122.cableco-op.com (HELO ?208.166.41.122?) (208.166.41.122) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Status: RO Attached is the revised FAQ for Collagenous Colitis. Though we sent another last month, unfortunately the links on it were incorrect. Please post this revised FAQ ASAP. If you wish, instead of posting the whole FAQ, you can now just put a link to: www.malinowski.com/faq.htm which we will update more frequently. Other useful links: www.malinowski.com/colitis.htm which is the general Microscopic/Collagenous Colitis web site, which includes links to Collagenous Colitis Newsletter archive and the FAQ, and other links. All these links are in the FAQ below. Begin FAQ: Collagenous/Microscopic Colitis FAQ Microscopic colitis (MC) is a name used to describe a chronic diarrheal syndrome that is caused by inflammation in the colon/large intestine (i.e., colitis). It is called "microscopic" colitis because the inflammation can be detected only with a microscope. During an endoscope procedure (colonoscopy or sigmoidoscopy), the colon looks normal. The presence or absence of a specific feature within the colonic inflammatory process as seen under the microscope (thickened collagen under the surface of the biopsy) has led to use of two other names for this syndrome: collagenous colitis and lymphocytic colitis. The authors of scientific journal articles differ in their opinions about which name to use (microscopic, collagenous, or lymphocytic). Yet, the symptoms and treatment of this syndrome are virtually identical, regardless of whether the collagen in the biopsy is thick or normal. Thus, the name microscopic colitis can be used to include both collagenous and lymphocytic colitis. In this FAQ, microscopic colitis is used to refer synonymously to either collagenous or lymphocytic colitis. Diagnosis is made based upon microscopic analysis of biopsies of the colon. The "typical" patient is a middle-aged woman; but it is seen in men, children as young as seven and older people also. Possible initial misdiagnoses include stress, gastroenteritis, celiac sprue, lupus, or irritable bowel syndrome (IBS). It’s not unusual for diagnosis to take several years, since microscopic colitis is the form of inflammatory bowel disease least familiar to doctors and therefore often the last considered. Patients sometimes seek treatment for an elusive form of arthritis as much as ten years prior to problems with diarrhea. This atypical arthritis can affect the back, hips and sometimes ribs. It can come and go, and can change locations. Other associated problems may include: iritis, purpura, thyroid diseases, pernicious anemia, idiopathic pulmonary fibrosis, fibromyalgia, unexplained severe itching, mouth sores, fatigue, depression, mitral valve prolapse and celiac sprue (also called celiac disease). There does not seem to be an association with Crohn’s disease, ulcerative colitis, or cancer. Most patients diagnosed with microscopic colitis are Caucasians living in Northern Europe, Canada, the United States, Australia and New Zealand. It does not appear to be contagious. Some patients report a close family member with the same diagnosis or with similar intestinal symptoms, and it appears there may be a hereditary tendency to get microscopic colitis. The major symptom of microscopic colitis is watery diarrhea that may be severe and sometimes even explosive. Necessary visits to the bathroom may number up to 30 times a day. In rare cases, the diarrhea may be severe enough to cause dehydration. Other symptoms may include weakness, difficulty eating, abdominal bloating, and nausea. The diarrhea may come in sudden bouts, giving only seconds of warning. There does not seem to be a consistent dietary factor contributing to diarrheal episodes. Certain foods, especially high fiber, fat, milk products, spices, wheat and/or uncooked fruit and vegetables, may aggravate it. On the contrary, some patients tolerate any foods — even when quite ill. Many have difficulty eating wheat, oats, bran and rye because they induce abdominal symptoms and diarrhea. This fact, as well as other scientific evidence, indicates that there may be clinical overlap of microscopic colitis with a disease called celiac sprue. Celiac sprue is caused by an immunologic reaction of the intestine to wheat, barley, rye, and oats. Approximately half of the patients with microscopic colitis report a sudden onset. They can pin down the exact day and location that symptoms started, often triggered by an initial bout with dysentery, giardia, or an undiagnosed intestinal illness. One theory is that the inflammatory response is caused by a bacterium or a bacterial toxin. Another theory suggests this is an autoimmune disease, although that hasn’t been conclusively established. A third suggests that non-steroidal anti-inflammatory drugs (NSAIDs, such as aspirin or ibuprofen) might be responsible or aggravate the symptoms in individuals predisposed to the disease by another mechanism. It may well turn out to be a combination of several of these factors. TREATMENT: Useful information has been sparse. This illness can come and go, with or without treatment, making it difficult to assess the effect of any treatment plan. Traditionally, treatment is started with sulfasalazine. Patients may improve with sulfasalazine, but they are not necessarily cured. For the many that don’t tolerate sulfasalazine, Asacol (one brand of mesalamine or 5-aminosalicylic acid) is typically prescribed. These medicines are thought to act as anti-inflammatory agents in the intestine. Anti-diarrheal medications such as Imodium and Lomotil are used for temporary relief, but tend to merely delay the diarrhea. Studies done with prednisone (a corticosteroid) do not sound very promising for long-term use. Most patients do respond quickly to this agent, so it can be useful to stop a severe attack. However, the diarrhea routinely returns when prednisone is discontinued. Long-term use of prednisone is discouraged because the side effects (formation of cataracts, bone degeneration, high blood pressure, and a tendency toward diabetes) can eventually be worse than the benefits. Some people report excellent short-term results with certain antibiotics; however, the results generally are not long lasting. A cholesterol-lowering drug called cholestyramine is helpful to some. Fiber in the form of psyllium hydrophilic mucilloid (like Metamucil) also helps some patients, but not others. Low dose tricyclic antidepressants (such as Doxepin or Elavil) can sometimes help with the joint and muscle pain. Surgical removal of the colon with formation of an ileostomy is a radical approach and is seldom used. Dr. Kenneth Fine at Baylor Medical Center in Dallas, Texas is the leading researcher investigating microscopic colitis. In a recent study, he determined that a high dose (8 or 9 chewable tablets per day) of Pepto-Bismol for 8 weeks can be quite effective. Preliminary results of a second study, which is testing the effect of Pepto-Bismol against a placebo, appear to verify this. Long-term outcomes are still under study. Dr. Fine maintains an excellent web site for this disease. Since his research moves at a fast pace, check his web site for current information:  http://www.bhcs.com/bumc/intestinalresearch Patients would do well to do their own research and attempt to remain knowledgeable and current, as few doctors know much about microscopic colitis. Although microscopic colitis is not progressive or fatal, it can be disabling. Thus, it is important that patients learn how to cope with the difficult social, physical and sometimes financial problems brought on by a disease that can change their lifestyle enormously. If you have been diagnosed with microscopic colitis, collagenous colitis, or lymphocytic colitis, or have an interest in it, you may obtain free copies of the collagenous colitis/microscopic colitis (CC/MC) newsletter, written by and for those with this disease. The newsletter is available only by e-mail. Its purpose is to share support and information. You may also request all past issues of the newsletter dating from August 1995 (more than 114, each about 6 pages long). For more information, and to check out the newsletter archive, visit the CC Club Microscopic Colitis web site at: http://www.malinowski.com/colitis.htm Revised February 1999

Response:

“

Question:

I have just received my pathology results from my sigmoid scope and according to the report there is evidence of lymphocytic colitis.  I’ve searched the net and can find very little on it that I can understand.   Does anyone out there have this?  How is it treated?  This is my 8th month suffering with this and I am worried that if it is left untreated too long, permanant damage may occur. Thanks for any help you can provide.

Response:

In article <3523C133.1…@bc.sympatico.ca

, rose_peter…@bc.sympatico.ca wrote: I have just received my pathology results from my sigmoid scope and according to the report there is evidence of lymphocytic colitis.  I’ve searched the net and can find very little on it that I can understand.   Does anyone out there have this?  How is it treated?  This is my 8th month suffering with this and I am worried that if it is left untreated too long, permanant damage may occur.

Lymphocytic colitis and its variant collagenous colitis are diseases in the same class as Crohn’s and UC. One difference is that the disease shows up on biopsy of the intestine, but the interior of the gut looks normal on an endoscopy. Unfortunately, I don’t believe a lot is known about them because they are not common. However, I imagine that they can be managed in much the same way that Crohn’s and UC are. It might worth it to look for a specialist who has an interest in this specific disorder. — Maurice Volaski, Flux Software         supp…@fluxsoft.com http://www.fluxsoft.com/     ftp://ftp.fluxsoft.com

Response:

There are some people with this diagnosis over on alt.support.crohns-colitis.  You may want to check it out. In the days of swine and roses kmot…@aol.com co-moderator alt.recovery-dead-splatted-aliens

Response:

Question:

  What are the differences between lymphocytic colitis and Crohn’s   or Ulcerative colitis? – Hide quoted text — Show quoted text – In August 1997 I was diagnosed with lymphocytic colitus as well.  I have had a very difficult time finding info. on this.  My Dr. said it is very rare and hard to treat.  I was on steroids for a few months which helped some but we were nervous about being on it for so long.  Right now I am just trying to control this with diet but am still have many problems.  Please let me know what you find helps and any information you have. Thank you!

Response:

I was recentely diagnosed with lymphocytic colitis after 9 months of continuous diareha. A colonoscopy with several biopsies taken during the procedure was the only way to diagnose this. This is a relatively rare condition and has only been recognized since the early eighties. Ask your doctor if he is familiar with it, if not, he may not be the right doctor for you. Asacol and all the other medications youv’e had did no good at all in my case. I have had to resort to prednisone. Hopefully not for long. Good Luck, Donna White

Response:

In August 1997 I was diagnosed with lymphocytic colitus as well.  I have had a very difficult time finding info. on this.  My Dr. said it is very rare and hard to treat.  I was on steroids for a few months which helped some but we were nervous about being on it for so long.  Right now I am just trying to control this with diet but am still have many problems.  Please let me know what you find helps and any information you have. Thank you!

Response:

Question:

I have been searching for any information on lymphocytic colitis. If there is anyone that can either give me more information about this, or guide me in the right direction, please let me know. Any help will be greatly appreciated. Dawn

Response:

Dear Dawn, Glad to hear from you.  My "working diagnosis" is lymphocytic colitis.  As you have probably found, it is a rare disease and there is not much information out there.  Our treatment options are more limited than UC and CD, our symptoms can be very similar and (the good news) our prognosis is somewhat better. There is currently a newsletter that has a distribution of about 280 people great source of information and she is willing to send you all 58 back editions of the newsletter as well (be prepared, they are each 3 – 5 pages) You are also welcome to email me.  I would be happy to share the information I have found.  Konnie

Response:

Question:

After a month of checking every oriface in my body by xray and endoscope here is what we found.  Have mild inflammation thoughout entire digestive tract and more severe colitis in ascending and transvers colon, visible on endoscopy while still on steroids, have a pretty good esophagitis going even after a month on prevacid, have blood and mucus in frequent diarrhea, have strange bouts of hip pain starting b4 this all began and have had several fistulaes in my 37 years.  After 4 years on and off (mostley on) prednisone for my asthma have discovered this flares up every time I come off steroids.  Can lose up to 40 lbs in three weeks when really bad!!  NOW the GI says I have lymphocytic colitis, am SEVERLY allergic to Asacol which also rules out sulfasalazine and at 37 he is talking about steroids for the rest of my life.  (Did I mention I have full blown drug induced Cushing’s from the sterids?)  WILL NOT live the rest of my life on steroids.  Would rather not have a life.  ANYONE know any other options???

Response:

colitis, am SEVERLY allergic to Asacol which also rules out sulfasalazine and at 37 he is talking about steroids for the rest of my life.  (Did I mention I have full blown drug induced Cushing’s from the sterids?)  WILL NOT live the rest of my life on steroids.  Would rather not have a life.  ANYONE know any other options???

Yes, do the Specific Carbohydrate Diet and cure yourself from this terrible disease just as I did and many many more do every day. Information about the SCD is widely available at the internet, just look for it and you shall find.

Response:

Question:

I to was on pred when I was pregnant eight years ago.  I eat what I want and if I find that it bothers me I don’t eat it again.  With CD or UC you can have unexplained pains at anytime.  You might want to ask the dr about remicade, I know it was approved for chrons,but seems to be effective with colitis to.  I have always been under weight so I don’t worry about it when I’m on pred.  I just eat. Lynn in Fl – Hide quoted text — Show quoted text – I am new to the newsgroups but after the day that I just had, I had to get on the net and findout more about ulcertive colitis (UC).  I found this support group and I have been reading all the e-mail from the past couple of days.   I have had some bm problems for years.  I would just have a flare up of some unexplained diarriea.  But it was when I was pregnant with my son when I felt an unbarable amount of pain in the middle of the night  Sept 1998) my husband took me to the hospital and they drugged me with pain killers and said that it would not affect my son.  To shorten my story, I was dx with UC Sept 1999 and it scares me to death.  My father died in june 1982 with colon cancer.   I was put on prednizone while I was pregnant and that started a new set of problems.  I do have a heathly son and I thank God everyday for that.   I seem to be going threw the same cycle as everyone else it seems like that you are fine for a while and then out of the blue you have incredible pain and diarrea, and the whole nine yards.   I put my self back on predizone 5 weeks ago and it seem like things are clearing up until today.   I got an incredible pain at about 10:00 this morning and it won’t go away.   I need to get educated on what to eat?  Did I eat something that could make this happen?   My Dr. never give me any guidelines on what to eat.   Surely there has to be some studies on what could increase the a flare up and what may decrease.  I would be interested on any info.   I would also be interested on how do you all deal with the craving to eat due to taking prednizone.   Thank you for any info. Sheila

Response:

Sheila Welcome to the newsgroup. I am sorry you had a reason to find us, but I hope you can find some info that will help. I will give some web pages that have some helpful information on UC (ulcerative colitis) at the end. I have had UC for 5 years. What to eat and what not to eat. I went through several months of keeping a food diary along with symptoms. I think it helped me identify some things that cause problems for me. But it seems that everyone is a little different, and what causes problems for one person might be OK for somebody else. The main problem food I have to avoid is milk – apparently I am lactose intolerant. Also coffee and carbonated drinks seem to cause some problems. It may be the caffeine or the carbonation. I do OK with tea, but that has a little less caffeine in it than coffee. Some herb teas, especially spearment seem to sit well for me. Some people find that some vitamins seem to help as well. I take a good multivitamin, plus some ‘flax oil’ capsules and ‘aloe vera’ capsules. I think these help some. High stress can also cause a flare-up. At least it does for me. These are all excellent sources of information, and excellent starting points in your search for answers. (Most of them have many additional ‘Links’.) Crohn’s & Colitis Foundation of America (CCFA) http://www.ccfa.org/ (click on ‘Medical Central’ to get to the ‘Library’ which has information on ‘Medications’ as well as many other topics.) (click on ‘Chapters & Events’ to locate a support group near you – if you live in the United States.) (I know there are also support groups in Canada – from the CCFC site. And I believe there are also support groups that can be found from the UK site and the Australian site.) (click on ‘Links’ to find one of the largest collection of links to medical pages, as well as Crohn’s & Colitis pages.) Crohn’s and Colitis Foundation of Canada (CCFC) (in English & French) http://www.ccfc.ca/ (click on the ‘Index’ {was near the upper left side of the page, after you chose english or french} to get an overview of the information available on this site.) National Association for Colitis and Crohn’s Disease (NACC) http://www.nacc.org.uk/ (This is the National Association for Colitis and Crohn’s Disease in the United Kingdom.) Australian Crohn’s and Colitis Association (ACCA) http://www.acca.net.au/ (There are separate sites for ‘Queensland’ and ‘South Australia’ and for a Support Group in New Zealand. These are found on the ‘Links’ page.) Links for many other National Support Organizations for Crohn’s and Colitis can be found on the ‘Links’ page of the CCFA site. Where some of these do not have a web site, addresses and telephone numbers, along with e-mail addresses (when available) are also listed there. ‘Living With Ulcerative Colitis’ http://www.ulcerativecolitis.com/ http://www.living-better.com/index.html  (The US site.) http://www.canada.living-better.com/index.html   (The Canadian site.) I am also going to mention this program. I managed to find them and joined this information program before I got on the internet. I found this program to be very helpful. This free information program is sponsored by ‘Proctor & Gamble’ and by ‘Proctor & Gamble Canada.’ There is an initial Information Packet, followed by a quarterly newsletter. The information on the web pages is useful even if you do not qualify for the information program. Some of the articles from the newsletter are archived on the US site. Here are the restrictions for the ‘Living With Ulcerative Colitis’ information program. You must live in the United States or Canada, and have Ulcerative Colitis. If you live in Canada, you must be taking Asacol to qualify for it. (At least this is my understanding of the restrictions.) There are several lists of ‘Frequently Asked Questions’ (FAQ) about Crohn’s and Colitis. They are usually posted on this newsgroup every couple weeks. These are several links to them. Inflamatory Bowel Disease, Frequently Asked Questions, Version 3.1 http://ibdfaq.freeshell.org/ Bill Robertson’s Inflammatory Bowel Disease Pages. http://qurlyjoe.bu.edu/cduchome.html The page with FAQ’s here also lists an FAQ for ‘Information Resources’ for IBD (Inflammatory Bowel Disease), and FAQ for ‘Collagenous Colitis’, and an FAQ for IBS (Irritable Bowel Syndrome). There are a multitude of links from this home page as well. ‘Collagenous Colitis’ (also called ‘Microscopic Colitis’ or ‘Lymphocytic Colitis’) is also one of the forms of IBD (Inflammatory Bowel Disease) along with the more commonly known ‘Crohn’s Disease’ and ‘Ulcerative Colitis.’ It was only recently discovered, and gets its name from the fact that the inflammation is not visible, but can only be detected under a microscope. And here are a few pages from people on this newsgroup. Steve Hylton’s alt.support.crohns-colitis on the WWW http://www.geocities.com/HotSprings/Falls/3298/ Darren’s Homepage. http://www2.netdoor.com/~darren/ Maryjo’s Homepage. http://community-1.webtv.net/MaryjoL/MYPAGE/ Steve Hudson’s IBDUK Page. http://members.tripod.com/shudson8472/ Marla’s Pain Forum Home Page. http://members.delphi.com/mogo69/index.html Shaz’s Ileostomy Page. http://www.geocities.com/HotSprings/Spa/8089/ Jeff Goldband’s Crohn’s, Colitis, and Ostomy Meeting Place. http://www.ccomp.org/ These are just a few of the great web pages by people who stop by this newsgroup. Look at the bottom of many of the messages to find more. Howard in Alaska – Hide quoted text — Show quoted text – I am new to the newsgroups but after the day that I just had, I had to get on the net and findout more about ulcertive colitis (UC).  I found this support group and I have been reading all the e-mail from the past couple of days.   I have had some bm problems for years.  I would just have a flare up of some unexplained diarriea.  But it was when I was pregnant with my son when I felt an unbarable amount of pain in the middle of the night ( Sept 1998) my husband took me to the hospital and they drugged me with pain killers and said that it would not affect my son.  To shorten my story, I was dx with UC Sept 1999 and it scares me to death.  My father died in june 1982 with colon cancer.   I was put on prednizone while I was pregnant and that started a new set of problems.  I do have a heathly son and I thank God everyday for that.   I seem to be going threw the same cycle as everyone else it seems like that you are fine for a while and then out of the blue you have incredible pain and diarrea, and the whole nine yards.   I put my self back on predizone 5 weeks ago and it seem like things are clearing up until today.   I got an incredible pain at about 10:00 this morning and it won’t go away.   I need to get educated on what to eat?  Did I eat something that could make this happen?   My Dr. never give me any guidelines on what to eat.   Surely there has to be some studies on what could increase the a flare up and what may decrease.  I would be interested on any info.   I would also be interested on how do you all deal with the craving to eat due to taking prednizone.   Thank you for any info. Sheila

Response:

I am new to the newsgroups but after the day that I just had, I had to get on the net and findout more about ulcertive colitis (UC).  I found this support group and I have been reading all the e-mail from the past couple of days.   I have had some bm problems for years.  I would just have a flare up of some unexplained diarriea.  But it was when I was pregnant with my son when I felt an unbarable amount of pain in the middle of the night ( Sept 1998) my husband took me to the hospital and they drugged me with pain killers and said that it would not affect my son.  To shorten my story, I was dx with UC Sept 1999 and it scares me to death.  My father died in june 1982 with colon cancer.   I was put on prednizone while I was pregnant and that started a new set of problems.  I do have a heathly son and I thank God everyday for that.   I seem to be going threw the same cycle as everyone else it seems like that you are fine for a while and then out of the blue you have incredible pain and diarrea, and the whole nine yards.   I put my self back on predizone 5 weeks ago and it seem like things are clearing up until today.   I got an incredible pain at about 10:00 this morning and it won’t go away.   I need to get educated on what to eat?  Did I eat something that could make this happen?   My Dr. never give me any guidelines on what to eat.   Surely there has to be some studies on what could increase the a flare up and what may decrease.  I would be interested on any info.   I would also be interested on how do you all deal with the craving to eat due to taking prednizone.   Thank you for any info. Sheila

Response:

welcome to the group, I myself was also diagnosed while pregnant with my first child.  I was glad to hear that you had a healthy son.  as for what triggers it who knows was the answer i usually get from my dr and what to eat well my dr actually my old dr would tell me its up to you to figure out what bothers you.  i however might suggest if your insurance covers it see a dietician they can help most of the time work wit you on a diet.  Stress and diet may not always trigger uc but i find that usually when i have alot of bad stress or eat something i know i shouldn’t i usually flare up.  Just remeber that this group is here for you  and you are not alone.  I actually have had a second baby since being diagnosed. Tammy

Response:

– Hide quoted text — Show quoted text -Hi. I was, two months ago, diagnosed with UC. I have been bleeding continuously for 3 months now, and have been on prednisone for 4 weeks, Asacol for 6 weeks.  The pain has gotten so bad I can’t sit up straight, and nothing has changed as far as symptoms with taking the prednisone. I am taking 4 tablets a day (now five, at the recommendation of my dr) and I am about to lose my job becuase I can’t work up to standards. Is there 1. anything I can do dietwise to help reduce the pain? 2. anything I need to know about prednizone? 3. I am also on Prozac/Klonopin/Xanax. (yes, I know, a real druggie here). Should    I be concerned aboiut interactions? 4. I am 27 years old. 5. What can I do about the job thing, and is there perhaps medical leave or some sort of things so I won’t lose my job or at least won’t lose the insurance? numbers 1 and five are the two most important… Any help would be appreciated. I am so new at this, and scared. Lilith

Hi, The name is Gordon.         With respect to diet, it seems that every UC patient has different diet problems. My particular bugaboos are onions, milk products and high fiber items such as corn, peas etc.         As to the job/employment, UC is a serious condition and you may be eligible for long term disability. In fact if you cannot work you may be entitled to Social Security disability.         You mentioned your doctor, who I would guess is a GI specialist. If not you should certainly be seeing one         I hope you are improving and feeling better.                        Gordon Brooking

Response:

Hi. I was, two months ago, diagnosed with UC. I have been bleeding continuously for 3 months now, and have been on prednisone for 4 weeks, Asacol for 6 weeks.  The pain has gotten so bad I can’t sit up straight, and nothing has changed as far as symptoms with taking the prednisone. I am taking 4 tablets a day (now five, at the recommendation of my dr) and I am about to lose my job becuase I can’t work up to standards. Is there 1. anything I can do dietwise to help reduce the pain? 2. anything I need to know about prednizone? 3. I am also on Prozac/Klonopin/Xanax. (yes, I know, a real druggie here). Should         I be concerned aboiut interactions? 4. I am 27 years old. 5. What can I do about the job thing, and is there perhaps medical leave or some sort of things so I won’t lose my job or at least won’t lose the insurance? numbers 1 and five are the two most important… Any help would be appreciated. I am so new at this, and scared. Lilith

Response:

Yes, there is a diet you can try that can help reduce the pain.  My son who has been diagnosed with Crohn’s disease almost three years ago has been following the diet religiously for two years now with all symptons of the disease gone. The diet originally developed by Drs. Sidney V. and Merrill P. Haas in the 50s, was given more exposure in the past few years through a softcover book entitled "Food and the Gut Reaction" by Elaine Gottschall, Kirkton Press. I understand that the book has recently been reprinted under the title "Breaking the Cycle or Circle" by the same author. We were basically in the same situation as you.  Desperate to try anything to relieve the pain for our son.  The diet was a miracle for him. We can only attribute its success to the fact that Patrick has followed the recommendations in the book to the letter as recommended. I can provide more details on request. – Hide quoted text — Show quoted text -1. anything I can do dietwise to help reduce the pain? Any help would be appreciated. I am so new at this, and scared. Lilith

Response: