Hello,
I feel like I have discovered the most marvelous thing by finding this support group! I was diagnosed with MC on December 19th when I received the biopsy report (no idea whether it is CC or LC) from my gastroenterologist's office. I was instructed to call and make an appointment to discuss (Jan 9) and to take 2 Pepto Bismol 4x daily until then. It has certainly slowed down the D, but I cannot say that I approach anything like Norman. And...I still have cramping and pain probably 60% of the time.
I am grateful that I am not having to get up at night any more. I am however, weary of trying to figure out what to eat each day. Fortunately, I have gotten some good and helpful advice from people who have used the GAPS and SCD diets. Before I had my colonoscopy, I was pretty sure that I would be diagnosed with Crohn's or UC and I am soooo grateful for neither, but I am finding out fast that MC is not exactly "a walk in the park".
Long story and I will try to be brief: About a year ago (November 2011 to be exact) I read Wheat Belly and at the same time I was working with Let's Move (Michelle Obama's project to help children who are obese lose weight) as a part of the health task force for National Council of Churches. At that time, I decided that I could not be part of a project like that if I did not start eating better and losing some weight myself. I thought that I would try to be as gluten and sugar-free as I could. I started losing weight right away and felt pretty good. My weight loss was controlled and my goal was to lose enough weight to meet the BMI for my height (about 25 lbs). I had accomplished that by May of this year and felt very good. I had a very stressful job and had been seeing a therapist to try to keep my stress level down and learn some new "tools" for dealing with a narcissistic boss. By late May I had decided that nearly two years dealing with such a person was just too much. I turned in my resignation much to the delight of my therapist and my spouse. However, the very day that I turned in my resignation, I started having D. I did not think much about it as, D is always how I react to stress and I've had IBS for years (like 40 to be exact as it started when I was in high school and maybe even before that!). I had a very restful summer and thought that all of the fresh produce we were getting was responsible for my continued D, and it wasn't bad--just a couple of times a day.
In October, things got much worse when my husband and I took a trip to his high school reunion. It was awful. I was up at night, we had to make emergency stops at rest areas on the road and it seemed like I could eat nothing that I would retain. When I came home, I made an appointment with my internist because I was not only having a lot more D and losing weight, but my rectum felt more than just sore. He saw me and sent me to a surgeon for a rectal abscess to have it incised and drained. What followed was three horrible weeks of terrible pain as my poor (and saintly) husband had to pack the wound twice daily. It was like having someone insert ground glass and I think we both felt we'd lose our minds before it was healed.
I will not go into the fiasco of finding a gastroenterologist in Kalamazoo. I ended up going to Grand Rapids (about an hour away), as my choices here are really poor.
These are the things that are worrisome to me at present: 1) I am feeling overwhelmed by the information I have--I have both a book on the GAPS diet and Elaine Gotshall's book on the SCD diet. I have a book on food combining and a book on enzymes. Tex's book is on its way to me. I hardly know where to start but have mainly been eating bone broth, custard made with lactose free yogurt (I made from raw milk), gelatin I've made with juice and Knox gelatin, pineapple, applesauce, dry curd cottage cheese, scrambled eggs, and some meat--mostly chicken. I cannot tell if I am eating the right things--it seems like a lot of trial and error. 2) I have an appointment next week with my internist who I have not seen since October, an appointment with an acupuncturist who also does Chinese Medicine and herbs, an appointment with a chiropractor who does stress release using neuro-emotive therapy and the gastroenterologist. 3) I desperately want this to go away. I have lost too much weight since October and feel like i am about 92 years old. My husband, kind man that his is, says that I do not look old, just "haggard". I feel haggard! I don't recognize my reflection in the mirror any more and friends keep asking what is wrong. Since many of my friends are nurses, I can tell from the way they approach me, they think I have something terminal. Ugh!!! Thanks for providing a place to vent!
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Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
New to this group
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Hi Jane,
Welcome to our internet family. I'm so sorry that you've had all this happen, but as motivated as you seem to be, I have no doubt that you will soon get your symptoms under control and get your life back. As you will see when you read my book, I firmly believe that chronic stress is the primary ingredient in our personal environment that leads to the development of MC and other autoimmune diseases.
You're on the right track with your diet. The SCD is fine, except that at least about 85% of us cannot tolerate casein, (the primary ingredient in all dairy products), so unless you are one of the lucky few who are not sensitive to casein, the yogurt and cottage cheese will almost surely perpetuate your inflammation. Bone broth is good for healing, and so is chicken soup. A fair percentage of us are sensitive to eggs, but hopefully you won't be in that group. Eggs were a major part of my diet when I was recovering, and hard-boiled eggs are also handy for taking along when we need a safe snack or meal when we're away from home.
Please be aware that most GI specialists do not realize that the inflammation that causes MC is associated with food sensitivities, (because no one has ever done a random controlled trial to prove it), so don't be surprised if your GI doc insists that diet has nothing to do with MC.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. I'm so sorry that you've had all this happen, but as motivated as you seem to be, I have no doubt that you will soon get your symptoms under control and get your life back. As you will see when you read my book, I firmly believe that chronic stress is the primary ingredient in our personal environment that leads to the development of MC and other autoimmune diseases.
You're on the right track with your diet. The SCD is fine, except that at least about 85% of us cannot tolerate casein, (the primary ingredient in all dairy products), so unless you are one of the lucky few who are not sensitive to casein, the yogurt and cottage cheese will almost surely perpetuate your inflammation. Bone broth is good for healing, and so is chicken soup. A fair percentage of us are sensitive to eggs, but hopefully you won't be in that group. Eggs were a major part of my diet when I was recovering, and hard-boiled eggs are also handy for taking along when we need a safe snack or meal when we're away from home.
Please be aware that most GI specialists do not realize that the inflammation that causes MC is associated with food sensitivities, (because no one has ever done a random controlled trial to prove it), so don't be surprised if your GI doc insists that diet has nothing to do with MC.
Again, welcome aboard, and please feel free to ask anything.
Tex (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.
Welcome Jane! Your story sounds like many of our stories. Once you read Tex's book, a lot of this will make sense. He said what I was thinking about the dairy. We are all different, but nothing gets to me as quickly and violently as ingesting dairy!
Eight Pepto a day seems to be the protocol. I went on Entocort ( budesonide) for about 6 months while I tried to get a grip on the diet. All I wanted to do was heal, so I ate mostly meats, Eggs, broth, cooked carrots and squash, rice and it's products, corn chips and corn tortillas, apple sauce, canned peaches, and almond butter and milk ( with rice or corn Chex). This disease will test your will power and your determination. As I started to heal and was off the meds, I was able to test small amounts of some of the things I gave up. I have added many veggies in, along with leafy salads and beans. I can even have a little dark chocolate :) Fruit is still rough and you should not be eating raw fruit while you are healing. It's hard to tell what you are reacting to while you are taking drugs. Best to keep the diet simple during this stage of the game.
Read as much as you can from this forum. It's chock full of information from so many of us. If you have the money, you can send a stool sample to Enterolab ( check out their web site) and find out what you are truly intolerant to and what foods are causing the inflammation.
Good luck and keep us posted
Leah
Eight Pepto a day seems to be the protocol. I went on Entocort ( budesonide) for about 6 months while I tried to get a grip on the diet. All I wanted to do was heal, so I ate mostly meats, Eggs, broth, cooked carrots and squash, rice and it's products, corn chips and corn tortillas, apple sauce, canned peaches, and almond butter and milk ( with rice or corn Chex). This disease will test your will power and your determination. As I started to heal and was off the meds, I was able to test small amounts of some of the things I gave up. I have added many veggies in, along with leafy salads and beans. I can even have a little dark chocolate :) Fruit is still rough and you should not be eating raw fruit while you are healing. It's hard to tell what you are reacting to while you are taking drugs. Best to keep the diet simple during this stage of the game.
Read as much as you can from this forum. It's chock full of information from so many of us. If you have the money, you can send a stool sample to Enterolab ( check out their web site) and find out what you are truly intolerant to and what foods are causing the inflammation.
Good luck and keep us posted
Leah
I wrote a reply last night and it disappeared, so I will try again...
Tex, you said that casein is a problem for 85% of MC people. Ugh! There really is no way of finding out other than through the Enterolab testing? I am just about desperate enough to plunk down the money for it. Lord knows I've spent that much money trying different treatments that did not work.
I have several more questions about the symptoms of this disease. Low back pain that radiates into what feels like the whole pelvic cavity which ends in a dull aching if not cramping. Sometimes the only position of comfort is the fetal position. Is that part of this or something else? Do the pains radiate or sometimes originate under the ribs?
I used to be an ice-eater and an ice water drinker. It has NO appeal any more and I never thought I would say that I am more than content with room temperature water and warm tea. Like Doug, I spend a lot of time chasing the chills. NO fever, just chills! Granted, I live in Michigan where it is cold this time of year, but I've never had chills like this unless I was sick with an intestinal bug. This seems like a perpetual illness that will NOT go away.
There are many things I hate about this, but one of the biggest is that it just feels endless. People keep asking me if I'm feeling better and I hate to disappoint. I hate it that I can't say what they want me to say. There really is very little understanding of a chronic disease like this. I have bad days and good days and I think the majority right now are bad days. My will power and determination are definitely being tested, Leah!
Tex, you said that casein is a problem for 85% of MC people. Ugh! There really is no way of finding out other than through the Enterolab testing? I am just about desperate enough to plunk down the money for it. Lord knows I've spent that much money trying different treatments that did not work.
I have several more questions about the symptoms of this disease. Low back pain that radiates into what feels like the whole pelvic cavity which ends in a dull aching if not cramping. Sometimes the only position of comfort is the fetal position. Is that part of this or something else? Do the pains radiate or sometimes originate under the ribs?
I used to be an ice-eater and an ice water drinker. It has NO appeal any more and I never thought I would say that I am more than content with room temperature water and warm tea. Like Doug, I spend a lot of time chasing the chills. NO fever, just chills! Granted, I live in Michigan where it is cold this time of year, but I've never had chills like this unless I was sick with an intestinal bug. This seems like a perpetual illness that will NOT go away.
There are many things I hate about this, but one of the biggest is that it just feels endless. People keep asking me if I'm feeling better and I hate to disappoint. I hate it that I can't say what they want me to say. There really is very little understanding of a chronic disease like this. I have bad days and good days and I think the majority right now are bad days. My will power and determination are definitely being tested, Leah!
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Jane,
You can determine food sensitivities by trial and error testing, but in order to do that, first you would have to follow an elimination diet (in which you eliminate all of the most common food sensitivities, and eat a bland diet until you reach remission), and then you could test foods, one at a time, to see if you react to them. It's extremely difficult to determine food sensitivities while we are still reacting, because the existing reactions will mask any additional reactions, so that it's almost impossible to tell the difference with any degree of reliability. Also, there is the problem of gluten antibody persistence. Gluten antibodies have a half-life of 120 days, so many of us continue to react for weeks or months after gluten is withdrawn, simply because of the high level of existing inflammation and other intestinal damage, and the fact that with so many anti-gliadin antibodies in circulation, our immune system tends to be so sensitive that the tiniest spec of cross-contamination by gluten will cause our flare to continue.
Therefore, for anyone who does not choose to do the EnteroLab testing, the fastest way to get to remission is to avoid (at the very least) all gluten and dairy. This should bring substantial improvement within a few weeks to a few months. Anyone taking Entocort EC (budesonide) or Pepto-Bismol should reach remission within a couple of weeks (in conjunction with the diet). At least half of us are sensitive to soy and all it's derivatives, so if avoiding gluten and dairy does not bring relief, then many of us find it beneficial to also cut soy out of our diet. If that still doesn't bring remission, then eggs may be a problem. Some of us have other food sensitivities, as well, but the big three are gluten, dairy, and soy.
The other important part of the recovery equation is time — it takes time for the intestines to heal. Adding an anti-inflammatory medication can help to bring remission much sooner than diet alone, (which helps to make life much more pleasant), but medications do not speed up the healing (in fact, corticosteroids slow down healing a bit), and as proof of that, if the med is discontinued too soon, a relapse will promptly occur. It normally takes from 6 months to a year for most of us to achieve stable remission, and it can take longer in cases where there is a lot of accumulated intestinal damage due to years of untreated gluten sensitivity.
Yes, I spent a lot of time in the fetal position when my reactions were at their worst, and lower back pain was an almost constant major problem. I found that if I drank one of those cold, icy drinks, it would cause a reaction, a few hours to half a day later. My guess is that the reaction was caused by the thermal stress induced by the ultra-cold drink.
I spent many a night with chills, but I suspect that in my case, diverticulitis was probably also a factor. Probably another potential influence on the chills issue is the fact that the body uses so much energy fighting the inflammation that's associated with MC that it just doesn't have enough energy to spare, to help keep the body as warm is it normally would. Fatigue is one of the primary symptoms of this disease (though many GI docs don't seem to be aware of that).
When my symptoms became fully developed, it was truly like having the worst case of the flu that I had ever imagined, and as you say, it was never-ending. That's why this disease tends to create a feeling of loneliness and hopelessness. Depression is another common symptom. Our only salvation is to learn how to control the symptoms, so that we can get our life back, because for most of us, the disease will never go away, unless we kick it to the curb, and make sure it stays there.
Every cloud has a silver lining. By the time we get our symptoms under control, most of us discover will power and self-confidence that we didn't know we had, and we find that we appreciate all the good things around us so much more than we ever did before.
Tex
You can determine food sensitivities by trial and error testing, but in order to do that, first you would have to follow an elimination diet (in which you eliminate all of the most common food sensitivities, and eat a bland diet until you reach remission), and then you could test foods, one at a time, to see if you react to them. It's extremely difficult to determine food sensitivities while we are still reacting, because the existing reactions will mask any additional reactions, so that it's almost impossible to tell the difference with any degree of reliability. Also, there is the problem of gluten antibody persistence. Gluten antibodies have a half-life of 120 days, so many of us continue to react for weeks or months after gluten is withdrawn, simply because of the high level of existing inflammation and other intestinal damage, and the fact that with so many anti-gliadin antibodies in circulation, our immune system tends to be so sensitive that the tiniest spec of cross-contamination by gluten will cause our flare to continue.
Therefore, for anyone who does not choose to do the EnteroLab testing, the fastest way to get to remission is to avoid (at the very least) all gluten and dairy. This should bring substantial improvement within a few weeks to a few months. Anyone taking Entocort EC (budesonide) or Pepto-Bismol should reach remission within a couple of weeks (in conjunction with the diet). At least half of us are sensitive to soy and all it's derivatives, so if avoiding gluten and dairy does not bring relief, then many of us find it beneficial to also cut soy out of our diet. If that still doesn't bring remission, then eggs may be a problem. Some of us have other food sensitivities, as well, but the big three are gluten, dairy, and soy.
The other important part of the recovery equation is time — it takes time for the intestines to heal. Adding an anti-inflammatory medication can help to bring remission much sooner than diet alone, (which helps to make life much more pleasant), but medications do not speed up the healing (in fact, corticosteroids slow down healing a bit), and as proof of that, if the med is discontinued too soon, a relapse will promptly occur. It normally takes from 6 months to a year for most of us to achieve stable remission, and it can take longer in cases where there is a lot of accumulated intestinal damage due to years of untreated gluten sensitivity.
Yes, I spent a lot of time in the fetal position when my reactions were at their worst, and lower back pain was an almost constant major problem. I found that if I drank one of those cold, icy drinks, it would cause a reaction, a few hours to half a day later. My guess is that the reaction was caused by the thermal stress induced by the ultra-cold drink.
I spent many a night with chills, but I suspect that in my case, diverticulitis was probably also a factor. Probably another potential influence on the chills issue is the fact that the body uses so much energy fighting the inflammation that's associated with MC that it just doesn't have enough energy to spare, to help keep the body as warm is it normally would. Fatigue is one of the primary symptoms of this disease (though many GI docs don't seem to be aware of that).
When my symptoms became fully developed, it was truly like having the worst case of the flu that I had ever imagined, and as you say, it was never-ending. That's why this disease tends to create a feeling of loneliness and hopelessness. Depression is another common symptom. Our only salvation is to learn how to control the symptoms, so that we can get our life back, because for most of us, the disease will never go away, unless we kick it to the curb, and make sure it stays there.
Every cloud has a silver lining. By the time we get our symptoms under control, most of us discover will power and self-confidence that we didn't know we had, and we find that we appreciate all the good things around us so much more than we ever did before.
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.
Jane said,
Things will get better,
BELIEVE!
Gayle
You should have gotten the report from the Pathologist who was the person that diagnosed your MC. As part of that report, there will be further definition of the type of MC (LC or CC) that was determined. He/She will have signed that report. Your medical records -- are yours to have, and you should have them with you when you need to see a variety of Docs! If you did not receive this report along with the delivery of a diagnosis, make SURE you get a copy of that report!! NOW. Keep and take with you forever more. If there is any question about this report, it is not unreasonable to request that the biopsy slides be sent for 2nd opinion … Best place for that is Mayo/Rochester.I was diagnosed with MC on December 19th when I received the biopsy report (no idea whether it is CC or LC) from my gastroenterologist's office.
You mention nothing here about being given some kind of antispasmotic type medication such as Bentyl or Levsin (both are trade names) for the purpose of trying to reduce the cramping. Have you emphasized to the Docs just how much cramping you are having? If so – they apparently do not listen do they?… to take 2 Pepto Bismol 4x daily until then. It has certainly slowed down the D, but I cannot say that I approach anything like Norman. And...I still have cramping and pain probably 60% of the time.
All GI specialists are not equal, just as all people who do any job are not equal, or exactly expert in all parts of a specific job. Besides qualifying as a GI specialist, it is most helpful if one can find out WHICH person in a GI practice tends to have more of an interest (and practice) in the category of Inflammatory Bowel Disease. When one just goes into a new practice without the ability to determine who is who – it can be a less than satisfactory experience. You may just get the person who is more interested in Liver transplantation! I have no idea what you have found in Grand Rapids. Your next (closest) best bet (?) may be investigating Rush in Chicago – remembering to try to find the Doc on the staff who has more of a focus in the IBDs.I will not go into the fiasco of finding a gastroenterologist in Kalamazoo. I ended up going to Grand Rapids (about an hour away), as my choices here are really poor.
Make sure you have the Pathology report in you hot little hands for this appointment!! (See above.) And I think desirable have someone else accompany you to this appointment to make sure all your issues are being discussed, understood and considered.2) I have an appointment next week with my internist who I have not seen since October.
Makes no difference what kind of fluids (hot or cold) you are drinking – but do STAY HYDRATED. When loosing an excessive amount of liquid due to frequent diarrhea, continuing to ingest fluids is imperative, and at times also advisable to supplement with some kind of electrolyte contain fluid.I used to be an ice-eater and an ice water drinker. It has NO appeal any more and I never thought I would say that I am more than content with room temperature water and warm tea.
Well as you are not feeling better, (thus far -- you have not found anyone who has given you much help) just say so. But even though right now this seems endless and depressing, please do not sit in a chair and feel sorry for yourself (we all want to do this to a point!!) but do have faith that there will be a way for you to control this disease (not cure!) -- but control. There are brighter days ahead. And if you read far enough here you will see that many folks suffered with this condition for years before being 1st diagnosed, and 2nd finding a way to manage this disease.There are many things I hate about this, but one of the biggest is that it just feels endless. People keep asking me if I'm feeling better and I hate to disappoint.
Things will get better,
BELIEVE!
Gayle
Hi Gayle,
Yes I am taking Levsin, but I only take it at night because it makes my vision so blurry that I can hardly stand it. I'm not sure that it makes the spasms better, but I would hate to know what it would be like if it was making it better. At least for the most part, I can sleep at night.
The biopsy report that I received was not directly from the pathologist--I received it from the gastroenterology office and it was "a watered down" version for "lay people" I am sure. I intend to find out which kind of MC it is when I see them next week.
I have already planned to call a Dr. at Univ of Chicago if I cannot get satisfactory answers next week. I have a friend who is very impressed with how well the doctor at Univ of Chicago is treating her 20 y/o daughter for Crohn's. This is the same office that was on Science Friday last month or maybe in November, talking about some new treatment that are researching at Univ of Chicago for IBD. I realize that MC is the stepsister of the other IBDs and therefore not as "fun" to treat as the others, so I am prepared for what I need to do.
One thing that I am fairly sure about is that I am a very lucky person to have the resources and to know where to find the resources that I do. Our health care system is soooo badly broken that if one is not articulate, has no insurance, and cannot pay for good health care, one is very much screwed! Health advocacy is what I have done for years and it seems odd to be the one advocating for myself now. I am just grateful that I can! I have been mentally compiling a list of questions for the Dr. and now it is time to put them on paper.
Should I even bother taking the Enterolab brochure? Does that usually set gastroenterologists off? I am also one of those people who is "stuck" on 20 mg of Prilosec a day for the past decade. A previous gastroenterologist put the fear of God in me by telling me that I needed to take Prilosec to protect against esophageal cancer. He was also performing an upper endoscopy every year to chop out perfectly innocuous gastric polyps (probably caused by the Prilosec!) but I was not aware of the type of polyp until just recently.
My faith in gastroenterologists is definitely NOT high, but I am trying to give this new office the benefit of the doubt until...I can't. As for my internist, he has been most helpful and was as frustrated as I was by the barriers to see a decent gastroenterologist in my own town. He will be very helpful and is willing to refer me to anyone and any treatment I want usually. I have flex spending and I think it will probably pay for acupuncture and Chinese medicine as well as Enterolab if I get a referral.
As I write this, I feel better about my plans. Sometimes if I look too long at the big picture and leap ahead to "what ifs" I can get myself into real turmoil, which I am sure is not good for my gut. The angst I was put through over getting into see a gastroenterologist in Kalamazoo was enough to cause D of epic proportions
Thanks for the suggestions. It helps to hear that other people have had the very same problems getting help.
Yes I am taking Levsin, but I only take it at night because it makes my vision so blurry that I can hardly stand it. I'm not sure that it makes the spasms better, but I would hate to know what it would be like if it was making it better. At least for the most part, I can sleep at night.
The biopsy report that I received was not directly from the pathologist--I received it from the gastroenterology office and it was "a watered down" version for "lay people" I am sure. I intend to find out which kind of MC it is when I see them next week.
I have already planned to call a Dr. at Univ of Chicago if I cannot get satisfactory answers next week. I have a friend who is very impressed with how well the doctor at Univ of Chicago is treating her 20 y/o daughter for Crohn's. This is the same office that was on Science Friday last month or maybe in November, talking about some new treatment that are researching at Univ of Chicago for IBD. I realize that MC is the stepsister of the other IBDs and therefore not as "fun" to treat as the others, so I am prepared for what I need to do.
One thing that I am fairly sure about is that I am a very lucky person to have the resources and to know where to find the resources that I do. Our health care system is soooo badly broken that if one is not articulate, has no insurance, and cannot pay for good health care, one is very much screwed! Health advocacy is what I have done for years and it seems odd to be the one advocating for myself now. I am just grateful that I can! I have been mentally compiling a list of questions for the Dr. and now it is time to put them on paper.
Should I even bother taking the Enterolab brochure? Does that usually set gastroenterologists off? I am also one of those people who is "stuck" on 20 mg of Prilosec a day for the past decade. A previous gastroenterologist put the fear of God in me by telling me that I needed to take Prilosec to protect against esophageal cancer. He was also performing an upper endoscopy every year to chop out perfectly innocuous gastric polyps (probably caused by the Prilosec!) but I was not aware of the type of polyp until just recently.
My faith in gastroenterologists is definitely NOT high, but I am trying to give this new office the benefit of the doubt until...I can't. As for my internist, he has been most helpful and was as frustrated as I was by the barriers to see a decent gastroenterologist in my own town. He will be very helpful and is willing to refer me to anyone and any treatment I want usually. I have flex spending and I think it will probably pay for acupuncture and Chinese medicine as well as Enterolab if I get a referral.
As I write this, I feel better about my plans. Sometimes if I look too long at the big picture and leap ahead to "what ifs" I can get myself into real turmoil, which I am sure is not good for my gut. The angst I was put through over getting into see a gastroenterologist in Kalamazoo was enough to cause D of epic proportions
Thanks for the suggestions. It helps to hear that other people have had the very same problems getting help.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Prilosec and other PPIs are a known cause of MC. Hopefully by adjusting your diet to eliminate your sensitivities and limit grains, you will get well enough to wean off the Prilosec. If you're really lucky, you might only have drug-induced MC, which could improve just by quitting the PPI!I am also one of those people who is "stuck" on 20 mg of Prilosec a day for the past decade.
I was going to say the same thing as Zizzle :)
I know what you mean about people asking about how you feel Jane. I have family members who constantly ask if I "am better". I always answer that I am managing, but I will never be "all better" Sometimes I know I am being flippant/short with people, but I can't help feeling sorry for myself sometimes. I go through my periods of time where I just want to cry, but after a year of this, ( and significant healing) I can honestly say that most of the time I am a fairly happy person. I also have to remind myself that at least I don't have cancer or something else that's life threatening.
You are at the beginning of this journey, but it does get better if you take the right steps... and it sounds like you are. I wish you quick success at getting a grip on all of this.
Leah
I know what you mean about people asking about how you feel Jane. I have family members who constantly ask if I "am better". I always answer that I am managing, but I will never be "all better" Sometimes I know I am being flippant/short with people, but I can't help feeling sorry for myself sometimes. I go through my periods of time where I just want to cry, but after a year of this, ( and significant healing) I can honestly say that most of the time I am a fairly happy person. I also have to remind myself that at least I don't have cancer or something else that's life threatening.
You are at the beginning of this journey, but it does get better if you take the right steps... and it sounds like you are. I wish you quick success at getting a grip on all of this.
Leah
Jane said:
FWIW: I was taking Levsin at rate of 3Xday in attempt to suppress the cramping. Possibly you might (?) tolerate another one of the anti-spasmodics better? At least you might ask about this? Also, what about the anti-diarrheals like Imodium? Just because you are taking the Pepto, that does not mean you can’t take these things also. The objective of course is always to be able to no longer need to use the anti-diarrheals and anti-spasmotics.
Also, please do realize that the Doc’s focus is more toward those other IBD’s because 1.) they can be, and sometimes are, fatal diseases -- which also 2.) have more of a tendency to fore-shadow malignancies than does MC. So it’s helpful if the patient can understand some of the reasons those conditions seem to get more attention. This does not help us however, when we are chained to a toilet. :( Understood!
There are indeed some new drugs in the pipeline for Crohn’s Disease. And there is some hope that some of them might be able to replace the anti-TNF drugs (mostly Remicade and Humira) in the drug treatment protocols for this disease. People with MC rarely need to be treated at the same drug level as people with Crohn’s though.
The Prilocec may be a problem for you as far as the MC is concerned as there does seem to be some association between MC and the PPIs, but this is another thing you need to talk further with a Doc about.??? No one here on this list is capable of advising what you should do regarding this situation, as no one here can exactly understands your circumstance regarding this esophogeal issue. BUT one thing is for sure, IF you decide to discontinue this drug, that MUST be done very gradually -- or you will really have other (BIG) troubles!!
I would recommend that you look at this web-site, and then print it off, -YES- all 8 pages of it. Read, and then write comments and questions there. Then take along to the Dr. visit as a basis and point of discussion regarding this condition. (Yep, your internist appointment)
FYI, G.I at Mayo is rated as the #1 Gastro Department in the country, and I bet your Internal Medicine Doc recognizes this fact.
http://www.mayoclinic.org/microscopic-colitis/
There is definitely a brain–gut connection. Anyone who knows anything about medicine knows this, it is anatomical, not purely psychological - as many believe, so there is no sense in denying that this condition is affected by what is going on in one’s life. We do have to try very hard not to allow ourselves to “go there”. But that’s NOT always easy advise to follow ----- I admit.
As Steve Jobs reportedly said to people when he needed (wanted) them to rise to some occasion “but don’t worry, You can do it.”
Gayle
Yes I am taking Levsin, but I only take it at night because it makes my vision so blurry that I can hardly stand it. I'm not sure that it makes the spasms better, but I would hate to know what it would be like if it was making it better. At least for the most part, I can sleep at night.
FWIW: I was taking Levsin at rate of 3Xday in attempt to suppress the cramping. Possibly you might (?) tolerate another one of the anti-spasmodics better? At least you might ask about this? Also, what about the anti-diarrheals like Imodium? Just because you are taking the Pepto, that does not mean you can’t take these things also. The objective of course is always to be able to no longer need to use the anti-diarrheals and anti-spasmotics.
You NEED to have THEE actual Pathologists report from here on out, … no matter where you go. It is your right, as the patient, to have a copy of that exact report in your custody. You do not need to ‘make do’ with what someone (anyone) else tells you. As this procedure was not very long ago, it should not be difficult to trace back to find the appropriate source, and have that report sent to you.The biopsy report that I received was not directly from the pathologist--I received it from the gastroenterology office and it was "a watered down" version for "lay people" I am sure. I intend to find out which kind of MC it is when I see them next week.
GOOD!I have already planned to call a Dr. at Univ of Chicago if I cannot get satisfactory answers next week. I have a friend who is very impressed with how well the doctor at Univ of Chicago is treating her 20 y/o daughter for Crohn's. This is the same office that was on Science Friday last month or maybe in November, talking about some new treatment that are researching at Univ of Chicago for IBD. I realize that MC is the stepsister of the other IBDs and therefore not as "fun" to treat as the others, so I am prepared for what I need to do.
Also, please do realize that the Doc’s focus is more toward those other IBD’s because 1.) they can be, and sometimes are, fatal diseases -- which also 2.) have more of a tendency to fore-shadow malignancies than does MC. So it’s helpful if the patient can understand some of the reasons those conditions seem to get more attention. This does not help us however, when we are chained to a toilet. :( Understood!
There are indeed some new drugs in the pipeline for Crohn’s Disease. And there is some hope that some of them might be able to replace the anti-TNF drugs (mostly Remicade and Humira) in the drug treatment protocols for this disease. People with MC rarely need to be treated at the same drug level as people with Crohn’s though.
And you are very fortunate to have this in your tool box. All to many folks have no idea of how to try to operate in this system.Health advocacy is what I have done for years and it seems odd to be the one advocating for myself now. I am just grateful that I can! I have been mentally compiling a list of questions for the Dr. and now it is time to put them on paper.
That (Enterolabs) is an individual decision. In my book, the first thing to eliminate is dairy, as there is both Lactose intolerance, as well as possible Casein allergy associated with dairy. As to the second question -- I think most GI’s will take with a grain of salt. They know folks are out there now on the internet trying to look for all avenues of help.Should I even bother taking the Enterolab brochure? Does that usually set gastroenterologists off? I am also one of those people who is "stuck" on 20 mg of Prilosec a day for the past decade. A previous gastroenterologist put the fear of God in me by telling me that I needed to take Prilosec to protect against esophageal cancer. He was also performing an upper endoscopy every year to chop out perfectly innocuous gastric polyps (probably caused by the Prilosec!) but I was not aware of the type of polyp until just recently.
The Prilocec may be a problem for you as far as the MC is concerned as there does seem to be some association between MC and the PPIs, but this is another thing you need to talk further with a Doc about.??? No one here on this list is capable of advising what you should do regarding this situation, as no one here can exactly understands your circumstance regarding this esophogeal issue. BUT one thing is for sure, IF you decide to discontinue this drug, that MUST be done very gradually -- or you will really have other (BIG) troubles!!
Being unique, or a special case, or the “worst case I’ve ever seen” is definitely not what/where you want to be. What you to be is just one of many -- at some large institution -- where MC is well known (i.e. is NOT considered a RARE disease) because they have many affected patients. They will simply be more experienced at zigzagging around with many patients, all of whom may react somewhat differently. There is (are) no SNAP answer(s) to MC. (I.E. there is no exact protocol for the treatment of MC.)My faith in gastroenterologists is definitely NOT high, but I am trying to give this new office the benefit of the doubt until...I can't.
I would recommend that you look at this web-site, and then print it off, -YES- all 8 pages of it. Read, and then write comments and questions there. Then take along to the Dr. visit as a basis and point of discussion regarding this condition. (Yep, your internist appointment)
FYI, G.I at Mayo is rated as the #1 Gastro Department in the country, and I bet your Internal Medicine Doc recognizes this fact.
http://www.mayoclinic.org/microscopic-colitis/
…. ahead to "what ifs" I can get myself into real turmoil, which I am sure is not good for my gut.
There is definitely a brain–gut connection. Anyone who knows anything about medicine knows this, it is anatomical, not purely psychological - as many believe, so there is no sense in denying that this condition is affected by what is going on in one’s life. We do have to try very hard not to allow ourselves to “go there”. But that’s NOT always easy advise to follow ----- I admit.
As Steve Jobs reportedly said to people when he needed (wanted) them to rise to some occasion “but don’t worry, You can do it.”
Gayle
from the Mayo site
Tests for IBS with diarrhea
Laboratory tests (blood, breath and stool) to screen for celiac disease, gluten intolerance without celiac disease, lactose and sugar intolerance, and bile acid malabsorption.
Laboratory tests (blood, breath and stool) to screen for celiac disease, gluten intolerance without celiac disease, lactose and sugar intolerance, and bile acid malabsorption.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi and Welcome Jane,
Don't really have anything to add that's helpful. Going DF helped me a lot so it seems. I've just gotten off 3 months of Pepto so time will tell. (My miracle drug!) Norman has been with me for 3 1/2 months now! And only once a day and sometimes I skip a day.
Just wanted to mention to you that my endoscopy showed numerous polyps which the doctor told me were caused by PPI's. The weird thing is I've never taken a PPI, just Alka Seltzer on a daily basis (not anymore). I manage my heartburn with diet changes and not eating anything after 6:30 in the evening. If I get it bad, I pop a Tums or Pepto and they work great for me.
Unfortunately, my GI doctor is an idiot and still insists my polyps are from PPI's when I've told him twice that I've never taken them. Makes me wonder exactly what kind of polyps I've got growing inside me anyway!
Anyway, I wish you the best of luck with your diet changes. Going DF was harder for me than going GF but it definitely helped with the D though it didn't go away totally. I refuse to go grain free as I need some carbs and rice does very well with me. So far!
Keep us updated!
Terri
Don't really have anything to add that's helpful. Going DF helped me a lot so it seems. I've just gotten off 3 months of Pepto so time will tell. (My miracle drug!) Norman has been with me for 3 1/2 months now! And only once a day and sometimes I skip a day.
Just wanted to mention to you that my endoscopy showed numerous polyps which the doctor told me were caused by PPI's. The weird thing is I've never taken a PPI, just Alka Seltzer on a daily basis (not anymore). I manage my heartburn with diet changes and not eating anything after 6:30 in the evening. If I get it bad, I pop a Tums or Pepto and they work great for me.
Unfortunately, my GI doctor is an idiot and still insists my polyps are from PPI's when I've told him twice that I've never taken them. Makes me wonder exactly what kind of polyps I've got growing inside me anyway!
Anyway, I wish you the best of luck with your diet changes. Going DF was harder for me than going GF but it definitely helped with the D though it didn't go away totally. I refuse to go grain free as I need some carbs and rice does very well with me. So far!
Keep us updated!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
My G.I. is a consultant for Mayo, but he's pretty clueless about treating MC, other than to prescribe Entocort. I've tried to educate him, but he politely listens and continues on his way. I suppose his connection with Mayo told him that Entocort was the drug of choice, but he's never suggested dietary changes. Now that Mayo gives a nod to it, maybe he does, too. I haven't seen him for over a year, but will probably have to in order to get a new script. He tried for an hour to convince me to get another colonoscopy at my last visit.Gayle wrote:FYI, G.I at Mayo is rated as the #1 Gastro Department in the country, and I bet your Internal Medicine Doc recognizes this fact.
Gloria
You never know what you can do until you have to do it.
with Gloria.We have at least several members here who went to the Mayo thinking that they would find relief there, but according to their posts following their visits, they were all disappointed. The problem with the mayo appears to be that the leading GI docs there have a problem with professional snobbery, and they choose to make fun of Dr. Fine's research and the EnteroLab tests, rather than to recommend the stool tests as part of the preferred treatment program. After decades of denying that diet was connected with MC, a couple of years ago they finally decided to add a brief note to their website conceding that diet is indeed connected with MC.
http://www.mayoclinic.com/health/collag ... is/DS00824Treatment for collagenous colitis and lymphocytic colitis often begins with lifestyle changes. In many cases, adjusting your diet will be enough to resolve your symptoms. If not, your doctor can suggest a number of effective medications for collagenous colitis and lymphocytic colitis. In rare cases, surgery is necessary.
When they finally get around to acknowledging the value of the Enterolab tests, they may be able to effectively treat MC at the Mayo.
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.