I was so glad to find this website. I have been suffering with D off and on for over 50 years. It has been constant for quite a few years now. I actually had my colonoscopy in May 2006 but the Gastroenterologist did not give me much information. The report said Microscopic Colitis but he didn't actually tell me about it. After 2 months I got an appointment with his associate who put me on Entocort for about 6 weeks. I asked her what I should eat and she said it doesn't make any difference! (Well, if that's the case perhaps I should put orange juice in my gas tank and see how far I can get.) One could only hope that a specialist would know better than that. I didn't actually see the report until late last summer. I then decided to look it up on the Internet and I found your Forum. I also found out about Dr. Fine and I ordered the stool sample and DNA kit. So on the day before Halloween, I got the results. I need to be on a strict and permanent gluten free diet. Not too surprised after reading the posts here, but I also found out I had a problem with Casein.
When I was on the Entocort, my diarrhea and my skin rash cleared up. It was great but 3 days after I finished the Entocort, they both came back with a vengeance. She said I could only take it for a short time. I have at times tried Immodium and Lonox but they don't seem to help much.
It has been several months now and the D continues. Today I went to the local Zoo and Conservatory and managed to find several bathrooms. Had to do a lot of walking and I was worn out by the time I got back to the car. I also square dance once or twice a week and sometimes I have to make mad dashes. But I don't want to give up on things. I'm a widow and on Sunday I usually go out to eat with friends from Church. It's really tricky to eat out and even worse to eat at a friend's house. I've been told by friends - Jean, you should be feeling better by now! It gets quite frustrating. It's good to find a place where people understand and know what I'm going through. Sometimes it gets complicated because I also have Diabetes and high cholesterol. I'm on many pills daily.
I've been going to a new chiropractor and he knows quite a bit about nutrition. At my request, he gave me the name of a doctor that is a holistic M.D. I went to see him twice and now just learned that he is closing his practice. I haven't gotten the letter yet so I don't know why. I was so hopeful but now I'm back to square one.
I have read some of your posts and you all seem to be very caring! I'm really glad I found this forum. I told my Oncologist (I had a mastectomy two years ago) that I had looked up the M.C. on the Internet and found a great message board and he went ballistic. I don't know if he was skeptical or scared. Sometimes you just have to ignore situations like that.
Keep up your good work.
Jeanie
New to the Forum and Diagnosed in October 08
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
New to the Forum and Diagnosed in October 08
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
Jeanie,
Welcome!!!! You have definitely found the right place. As you have found, this is a very caring and supportive group. As you will find, Tex and the PP are always hear to help and a huge wealth of information.
By your post you have seem to have been through a lot of hoops and can't believe how long it took you to get your report. I hope you find another holistic MD. My GI rolled his eyes when I told him that I found a support group on line and that diet plays a major role in controlling cc.
I'm by no way near remission, but I keep plugging along and hopefully will achieve this as most people have on this board. I have tried all the meds with no luck (just makes it worse) and from what I have read here a lot of people do really well on Entocort.
I love that you are not letting this beast stop you from your activities. Like you, my friends have a hard time understanding this condition. I admire you that you are so brave to go out to eat with your friends. That is one thing that totally scares me (from past experiences from so called "gluten free resturants"). What I feel bad about is the fact that I can't travel, go on field trips with my kids, work or do any business socializing with my husband, but at least my husband and children understand that Mommy needs a bathroom.
Rose
Rose
Welcome!!!! You have definitely found the right place. As you have found, this is a very caring and supportive group. As you will find, Tex and the PP are always hear to help and a huge wealth of information.
By your post you have seem to have been through a lot of hoops and can't believe how long it took you to get your report. I hope you find another holistic MD. My GI rolled his eyes when I told him that I found a support group on line and that diet plays a major role in controlling cc.
I'm by no way near remission, but I keep plugging along and hopefully will achieve this as most people have on this board. I have tried all the meds with no luck (just makes it worse) and from what I have read here a lot of people do really well on Entocort.
I love that you are not letting this beast stop you from your activities. Like you, my friends have a hard time understanding this condition. I admire you that you are so brave to go out to eat with your friends. That is one thing that totally scares me (from past experiences from so called "gluten free resturants"). What I feel bad about is the fact that I can't travel, go on field trips with my kids, work or do any business socializing with my husband, but at least my husband and children understand that Mommy needs a bathroom.
Rose
Rose
Wow Jeanie!
Welcome to our internet family. Your GI doc has really mistreated you. I'm very sorry that you've suffered needlessly for so long. Your GI doc and his associate are either confused or ignorant, about Entocort. They apparently believe that it is just like the other corticosteroid drugs, (such as Prednisone). It is not. Entocort EC is encapsulated, so that it does not become activated until it reaches the lower third of the small intestine, and the colon, and because of that, only about 10 to 15 % of it is absorbed into the bloodstream. Since so little of it is absorbed into the bloodstream, it does not have anywhere near the risk of side effects that the other corticostroids have. IOW, Entocort treats the ileum and the colon, not the entire body.
If your regular doctor, (GP, or whatever), is understanding, and generally helpful, usually they will be willing to prescribe Entocort for you, once you have been diagnosed with an Inflammatory Bowel Disease, (IBD), such as MC, especially if a GI doc has already prescribed it for you previously. IOW, I suggest that you ask your regular doctor for a prescription for Entocort. You can take it for as long as you need to take it. Some people are allergic to it, and therefore cannot use it, but since you have already found that it works just fine for you, there is no reason why you cannot use it. Many of our members have used it for years, with no significant problems. Quite a few members take Entocort for 6 months to a year or more, while they are waiting for their gut to heal, after they start the GF diet, (of course, many of us also have to eliminate casein, soy, etc., from our diets, also, but we are all different in respect to the foods that we are intolerant of). Some members, however, rely on Entocort alone, (without the diet), to control their symptoms indefinitely. Usually, after you achieve remission, you can reduce the dosage of Entocort to 6mg per day, or in some cases, 3mg per day, and still maintain control of the disease's symptoms. Some members here have even maintained control on only 3mg every other day, but that dosage is not as reliable as the higher doses, of course.
If your doctor won't write a prescription for Entocort for you, then you have a choice of switching doctors, or just waiting for the diet to bring remission. Either way, I feel sure that you will be able to control this disease, now that you know what to do.
Again, welcome aboard, and please feel free to ask anything. I have a hunch that you will soon feel better than you have in over 50 years, as you fine-tune your treatment program, and finally get this disease under control.
Tex (Wayne)
Welcome to our internet family. Your GI doc has really mistreated you. I'm very sorry that you've suffered needlessly for so long. Your GI doc and his associate are either confused or ignorant, about Entocort. They apparently believe that it is just like the other corticosteroid drugs, (such as Prednisone). It is not. Entocort EC is encapsulated, so that it does not become activated until it reaches the lower third of the small intestine, and the colon, and because of that, only about 10 to 15 % of it is absorbed into the bloodstream. Since so little of it is absorbed into the bloodstream, it does not have anywhere near the risk of side effects that the other corticostroids have. IOW, Entocort treats the ileum and the colon, not the entire body.
If your regular doctor, (GP, or whatever), is understanding, and generally helpful, usually they will be willing to prescribe Entocort for you, once you have been diagnosed with an Inflammatory Bowel Disease, (IBD), such as MC, especially if a GI doc has already prescribed it for you previously. IOW, I suggest that you ask your regular doctor for a prescription for Entocort. You can take it for as long as you need to take it. Some people are allergic to it, and therefore cannot use it, but since you have already found that it works just fine for you, there is no reason why you cannot use it. Many of our members have used it for years, with no significant problems. Quite a few members take Entocort for 6 months to a year or more, while they are waiting for their gut to heal, after they start the GF diet, (of course, many of us also have to eliminate casein, soy, etc., from our diets, also, but we are all different in respect to the foods that we are intolerant of). Some members, however, rely on Entocort alone, (without the diet), to control their symptoms indefinitely. Usually, after you achieve remission, you can reduce the dosage of Entocort to 6mg per day, or in some cases, 3mg per day, and still maintain control of the disease's symptoms. Some members here have even maintained control on only 3mg every other day, but that dosage is not as reliable as the higher doses, of course.
If your doctor won't write a prescription for Entocort for you, then you have a choice of switching doctors, or just waiting for the diet to bring remission. Either way, I feel sure that you will be able to control this disease, now that you know what to do.
Again, welcome aboard, and please feel free to ask anything. I have a hunch that you will soon feel better than you have in over 50 years, as you fine-tune your treatment program, and finally get this disease under control.
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.
Hi, Jeanie, and 
!
How terrible that your doc went nuts because you found a support group! Do they want us to suffer alone? I think sometimes they do, because they don't want us comparing notes and finding out that they're not doing anyone one bit of good.
Courtney
!How terrible that your doc went nuts because you found a support group! Do they want us to suffer alone? I think sometimes they do, because they don't want us comparing notes and finding out that they're not doing anyone one bit of good.
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Thank you, Rose, Tex, and Courtney! I certainly hope that I can start seeing some improvement in the near future. It looks like I will be returning to my former doctor at least for the time being, and I shall ask him to prescribe Entocort for me. Hopefully it won't be a problem as Prednisone can be. I have allergies and take Zyrtek for them. I have in the past taken Prednisone when I was going to the allergy specialist and have been leary of taking it again. I have been trying to control things with just diet and that doesn't seem to be working too well.
Rose, you reminded me of something. My husband and I had 3 different motorhomes over 25 years. They were all used ones, but quite functional. I've been a camper since 1956 and in the early days I preferred tenting. Somehow, that ground isn't so appealing anymore. The best thing about the motorhome was having my own bathroom. When my husband was still driving, I had instant access! We sold the last one two months before my husband had his stroke so the timing worked out good on that. So I guess my camping days are over. Now I don't even dare to go hiking. Yesterday's quest for bathrooms made me wonder why I even did that excursion. But I refuse to give up!
My chiropractor has an associate that is a Biochemist. I have been going to her for Electrodermal screening. Because of my colitis and poor digestion, I have a lot of autoimmune problems. The testing showed that I had parasites (not uncommon.) I showed both upper and lower intestines are weak and my liver is stressed. First she put me on a medication to get rid of parasites. Next was a different one to get rid of molds, yeast, etc. Now I just finished one for heavy metals. (No doubt at least partially caused by tooth fillings.) I had a lot of fillings (including drilling out old fillings and replacing) shortly after I moved to Minneapolis. My allergies started about that time and now I wonder if there is a connection. I don't know what comes next with the Biochemist but I hope I'm on the right track. Maybe it's not so strange that my colon is so upset.
Tex, you elicited a feeling when you said Welcome Aboard. My husband worked for Airlines for 40 years before he retired. He so very often would say to people, Welcome Aboard! He's been gone for 6 1/2 years and I miss him a lot but am so thankful that I had him for 36 years. (He was 15 years older than me and we got a late start.)
Jean
Rose, you reminded me of something. My husband and I had 3 different motorhomes over 25 years. They were all used ones, but quite functional. I've been a camper since 1956 and in the early days I preferred tenting. Somehow, that ground isn't so appealing anymore. The best thing about the motorhome was having my own bathroom. When my husband was still driving, I had instant access! We sold the last one two months before my husband had his stroke so the timing worked out good on that. So I guess my camping days are over. Now I don't even dare to go hiking. Yesterday's quest for bathrooms made me wonder why I even did that excursion. But I refuse to give up!
My chiropractor has an associate that is a Biochemist. I have been going to her for Electrodermal screening. Because of my colitis and poor digestion, I have a lot of autoimmune problems. The testing showed that I had parasites (not uncommon.) I showed both upper and lower intestines are weak and my liver is stressed. First she put me on a medication to get rid of parasites. Next was a different one to get rid of molds, yeast, etc. Now I just finished one for heavy metals. (No doubt at least partially caused by tooth fillings.) I had a lot of fillings (including drilling out old fillings and replacing) shortly after I moved to Minneapolis. My allergies started about that time and now I wonder if there is a connection. I don't know what comes next with the Biochemist but I hope I'm on the right track. Maybe it's not so strange that my colon is so upset.
Tex, you elicited a feeling when you said Welcome Aboard. My husband worked for Airlines for 40 years before he retired. He so very often would say to people, Welcome Aboard! He's been gone for 6 1/2 years and I miss him a lot but am so thankful that I had him for 36 years. (He was 15 years older than me and we got a late start.)
Jean
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
Jean,
I can certainly visualize your husband saying that, and I'll bet you wish you had a nickel for every time he said it. One reason why I use that phrase, "welcome aboard", is because the process of controlling this disease, and wrestling our life back from it, is truly a journey of sorts, and hopefully, when someone finds this site, they are beginning their journey back to health. The trip obviously takes much longer than an airline flight, but when we arrive at our destination, we feel as though we have arrived in paradise, compared with where we started.
Tex
I can certainly visualize your husband saying that, and I'll bet you wish you had a nickel for every time he said it. One reason why I use that phrase, "welcome aboard", is because the process of controlling this disease, and wrestling our life back from it, is truly a journey of sorts, and hopefully, when someone finds this site, they are beginning their journey back to health. The trip obviously takes much longer than an airline flight, but when we arrive at our destination, we feel as though we have arrived in paradise, compared with where we started.
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.
You certainly have been jerked around and I hope you are on an upswing now.
I think I can certainly relate about missing your husband. My husband of 47 years died last July 31. It's always a shock to realize it's been that long. Seems like just a few weeks ago.
I think if I were you I'd try to get some doctor to put me on Entocort again and for a much longer period this time. With that and the diet perhaps you could do some major healing.
Love, Shirley
I think I can certainly relate about missing your husband. My husband of 47 years died last July 31. It's always a shock to realize it's been that long. Seems like just a few weeks ago.
I think if I were you I'd try to get some doctor to put me on Entocort again and for a much longer period this time. With that and the diet perhaps you could do some major healing.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Thanks, Shirley
I'm sorry that you have lost your husband also. Sometimes it seems like just yesterday and other times it seems forever since I last saw him. When we moved to this house, I fixed up the second bedroom for a den for him. He was only here 13 months and it has taken me all this time (over six years) to decide to fix up the room for a hobby room for myself. It still has his old North Central Airlines pictures and they stay! His love for the airlines has rubbed off on me.
Love, Jean
I'm sorry that you have lost your husband also. Sometimes it seems like just yesterday and other times it seems forever since I last saw him. When we moved to this house, I fixed up the second bedroom for a den for him. He was only here 13 months and it has taken me all this time (over six years) to decide to fix up the room for a hobby room for myself. It still has his old North Central Airlines pictures and they stay! His love for the airlines has rubbed off on me.
Love, Jean
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
Hi Jean,
You mentioned your biochemist was doing electro dermal screening. Can you tell me more about how this works?
I wonder if it is based on a similar theory to the AussieMed my naturopath is using with me - reading energy levels, then comparing to a database and seeing which ones show up as chronic or acute. Mine keeps finding more varieties of mycotoxins, candidas and other assorted lifeforms I'd rather not support.
Lyn
You mentioned your biochemist was doing electro dermal screening. Can you tell me more about how this works?
I wonder if it is based on a similar theory to the AussieMed my naturopath is using with me - reading energy levels, then comparing to a database and seeing which ones show up as chronic or acute. Mine keeps finding more varieties of mycotoxins, candidas and other assorted lifeforms I'd rather not support.
Lyn
Hi Lyn,
That's a good question. She has a machine that hooks up to a computer. I hold a metal rod in one hand and the current goes through me (you can't feel it) and then she uses a stylus to press on various points on my other hand plus a couple on my feet. Each area she touches corresponds to an organ in the body. The computer indicates if everything is okay or if there is a problem. Later I believe she can test me for food allergies. When she finds a problem, she takes the "remedy" bottle and places it on top of the machine and it will indicate if that will help the problem. I may not be explaining it very well but it's quite a sophisticated process.
I hope that helps.
Jean
That's a good question. She has a machine that hooks up to a computer. I hold a metal rod in one hand and the current goes through me (you can't feel it) and then she uses a stylus to press on various points on my other hand plus a couple on my feet. Each area she touches corresponds to an organ in the body. The computer indicates if everything is okay or if there is a problem. Later I believe she can test me for food allergies. When she finds a problem, she takes the "remedy" bottle and places it on top of the machine and it will indicate if that will help the problem. I may not be explaining it very well but it's quite a sophisticated process.
I hope that helps.
Jean
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
How terrible that your doc went nuts because you found a support group! Do they want us to suffer alone? I think sometimes they do, because they don't want us comparing notes and finding out that they're not doing anyone one bit of good.
Courtney
Hi Courtney,
Just wanted to respond to your message. I think you hit the nail on the head. I don't want to put any doctor down, but a friend just recently told me that a doctor had said to him that the Oncologist is one of the least necessary doctors. They just sort of ride on the coattails. (Only repeating what I was told.) I guess that's just a knee-jerk reaction to the response I got out of him.
Jean
Courtney
Hi Courtney,
Just wanted to respond to your message. I think you hit the nail on the head. I don't want to put any doctor down, but a friend just recently told me that a doctor had said to him that the Oncologist is one of the least necessary doctors. They just sort of ride on the coattails. (Only repeating what I was told.) I guess that's just a knee-jerk reaction to the response I got out of him.
Jean
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
Jean,
Unfortunately, I've had enough bad experiences with doctors over the past decade or so that I'll believe almost anything I hear about the way they can act. I've had two in my life that I can't complain about--my pediatrician and my current GP. Let's hope our luck starts looking up in that department.
Courtney
Unfortunately, I've had enough bad experiences with doctors over the past decade or so that I'll believe almost anything I hear about the way they can act. I've had two in my life that I can't complain about--my pediatrician and my current GP. Let's hope our luck starts looking up in that department.
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Hi Jean,
Thanks for the information about the machine. It is a similar concept to the one I use, but with mine you just put your hands on two pads, rather than testing the current in various spots. I assume it is a homeopathic remedy ie, salt water.
There seems to be increasing use of these sort of machines in the homeopathic community and I suspect they will eventually evolve to become much more effective. The theory is that they pick up imbalances based on frequency variations. You can then apply the appropriate homeo remedy (or any other form of remedy), or as with your machine, they 'imprint' that energy level on to the water. It is an interesting diagnostic tool, but I have my doubts about the imprinting.
Good luck,
Lyn
Thanks for the information about the machine. It is a similar concept to the one I use, but with mine you just put your hands on two pads, rather than testing the current in various spots. I assume it is a homeopathic remedy ie, salt water.
There seems to be increasing use of these sort of machines in the homeopathic community and I suspect they will eventually evolve to become much more effective. The theory is that they pick up imbalances based on frequency variations. You can then apply the appropriate homeo remedy (or any other form of remedy), or as with your machine, they 'imprint' that energy level on to the water. It is an interesting diagnostic tool, but I have my doubts about the imprinting.
Good luck,
Lyn
Jean,
It is so funny that you mention motorhomes as my dh is always looking that them on e-bay for a deal. Our families both live in Florida, his parents are 8 hours away (their cabin in GA is 4 hours) and mine are 14 hours away. My parents don't like to travel so I have not seen them in over a year. My in-laws are great and visit us or my dh takes the kids to their cabin.
I am bound and determined to get to FL to see my parents once the kids are out of school.
Rose
It is so funny that you mention motorhomes as my dh is always looking that them on e-bay for a deal. Our families both live in Florida, his parents are 8 hours away (their cabin in GA is 4 hours) and mine are 14 hours away. My parents don't like to travel so I have not seen them in over a year. My in-laws are great and visit us or my dh takes the kids to their cabin.
I am bound and determined to get to FL to see my parents once the kids are out of school.
Rose
Hi Rose,
Oh yes, I hear you. My daughter and family live in the Orlando area. I finally got down there last July (of all months!) It had been 2 1/2 years. I have been flying on a pass and the flights are always full. It was just before the kids turned 7 and 9. I really miss them as they grow up so fast.
We could never afford a new motorhome but were fortunate to find some nice used ones. Our first one was 10 years old and then we drove it for 10 years. We had the kids with us in those years and had the most fun in that 17 foot vehicle. It was unbelievable how much room there was in there for that size. We even slept 4 adults, 2 kids, and 2 dogs one night when we were in Maryland visiting relatives. Many memories come bouncing back. And just think - a portable potty on wheels with kitchen and sleeping privileges! Fortunately my husband was pretty good at fixing things. I wouldn't dare own one like that now. Then our last one was 32 feet long and was a basement model. It had a TV in front instead of a bunk but we didn't have the kids along anymore so it was okay.
I just wish my grandkids weren't so far away. They live in Florida and here I am in Minnesota. What's wrong with that picture?
Jean
Oh yes, I hear you. My daughter and family live in the Orlando area. I finally got down there last July (of all months!) It had been 2 1/2 years. I have been flying on a pass and the flights are always full. It was just before the kids turned 7 and 9. I really miss them as they grow up so fast.
We could never afford a new motorhome but were fortunate to find some nice used ones. Our first one was 10 years old and then we drove it for 10 years. We had the kids with us in those years and had the most fun in that 17 foot vehicle. It was unbelievable how much room there was in there for that size. We even slept 4 adults, 2 kids, and 2 dogs one night when we were in Maryland visiting relatives. Many memories come bouncing back. And just think - a portable potty on wheels with kitchen and sleeping privileges! Fortunately my husband was pretty good at fixing things. I wouldn't dare own one like that now. Then our last one was 32 feet long and was a basement model. It had a TV in front instead of a bunk but we didn't have the kids along anymore so it was okay.
I just wish my grandkids weren't so far away. They live in Florida and here I am in Minnesota. What's wrong with that picture?
Jean
You might think you understood what I said but what you don't realize is that what I said was not what I meant!