Hi Everyone!
I have finally decided to jump in and introduce myself as I have been lurking on your website for over a month now. I must admit I am not all that happy to be part of this group:( You all seem like a great group of people so I am happy to have found you and am already grateful for the information I have found.
My name is Kim and I was diagnosed with MC the end of April, just two months ago. I am 46 years old. It started very suddenly and the first week or so I didn't think to much about the D as it wasn't horrible and it started the same time my period started (sorry for TMI all you guys out there). The D continued and after about 2 weeks
I contacted my family doc. We had traveled outside of the US so he thought I had picked up a parasite. He treated with two different antibiotics (which about killed me) and still no relief. I was then sent to a GI doc that did a colonoscopy, boy was that fun! Colon looked good which was a huge relief but the biopsies came back a week later with the diagnoses of Cologenous Colitis. I am thrilled that I don't have Crohns or colon cancer but very dismayed at the fact that I have this "thing" I have to live with for the rest of my life. I have always been a very health, active person and this has really set me back abit emotionally.
GI doc put me on Entocort, 9 mg per day. It has worked miracles! After just one day the D was gone!! Doc told me I would need a 2 month treatment and I should be better. Well, I have been on the Entocort for 2 months now, the full dose and haven't been able to even cut back to two pills per day. Doc thought I'd be weaned completely off it after two months with maybe just one pill per day or one pill every other day for maintenance. I really wanted to believe it was going to be as simple as that but I kept bumping into people who have had some experience with colitis and they kept mentioning diet. I also stumbled across this group and didn't like reading about the food sensitivities that most of you have. It's very depressing to me...........my husband and I love to cook, travel and food is a big part of our life as I'm sure it is all of yours. I am coming to the realization that I'm probably going have to figure out what foods irritate my colitis. Here's where the questions begin! I am on Entocort and I know I can't live on this high dosage forever so where do I begin?? Can I figure out what I'm sensitive to while on the Entocort or do I need to get off it first? The thoughts of that are not fun. Can I do the Enterolab testing while on Entorcort? Figuring out all the sensitivities seems like an overwhelming process. I feel really good right now and don't care to go back to how I felt a couple of months ago! Any suggestions would be much appreciated!!
Thanks so much for listening to my saga!
Kim:)
New To the Group
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Kim,
I completely understand how you feel. I was 46 when I got sick as well and I initially got depressed, angry etc (all the stages of grief). Figuring out food sensitivities takes a little detective work, but once you adjust, you will feel better. Many of us have found that diet is the key and we don't need medicine, althought that's not true for everyone. Many of us have used Enterolab to find intolerances www.enterolab.com - many are intoelrant to gluten, dairy and soy. In time you figure out how to eat and enjoy eating again. There are many specialty products and many restaurants are starting to address this issue.
Hang in there
Mary Beth
I completely understand how you feel. I was 46 when I got sick as well and I initially got depressed, angry etc (all the stages of grief). Figuring out food sensitivities takes a little detective work, but once you adjust, you will feel better. Many of us have found that diet is the key and we don't need medicine, althought that's not true for everyone. Many of us have used Enterolab to find intolerances www.enterolab.com - many are intoelrant to gluten, dairy and soy. In time you figure out how to eat and enjoy eating again. There are many specialty products and many restaurants are starting to address this issue.
Hang in there
Mary Beth
Hello Kim a warm from the Netherlands.
When you write, you are not so happy at all to be part of this group, I think you mean you are not happy to have to join this group because you have MC and how it effects your life. Well I think we all can understand that!! But great you made the next step and joined the group and introduced yourself. And it just sucks to have MC, but it is the way it is and one day or the other we all have to face the truth.
I don't know I you have been following the business the trip of Gabes all the way from Australia to France, a 36 hours transit time and I think almost two weeks in France and she survived very well. And she is on restricted diet, so traveling, going out for dinner is possible, also with a limited diet. Also after being diagnosed with MC, your live won't be over. It is not easy, especially when you have multiple food intolerances but not impossible.
As far as I know, entocort is no problem for the enterolab testing. I was on entocort, when I did the testing. And yes finding out what your intolerances can be an overwhelming process. But non of us did it overnight. Just do it step by step, and the enterolab testing is first good step. Also changing food habits and giving up things, it is process we all do in our speed and in our own time. And use this board to ask your questions, share your experiences and your difficulties. We all get fed up with the diet stuff so now and than!!! At least I do. But in the end when you start to feel so much better, it is all worth it.
Harma
from the Netherlands.When you write, you are not so happy at all to be part of this group, I think you mean you are not happy to have to join this group because you have MC and how it effects your life. Well I think we all can understand that!! But great you made the next step and joined the group and introduced yourself. And it just sucks to have MC, but it is the way it is and one day or the other we all have to face the truth.
I don't know I you have been following the business the trip of Gabes all the way from Australia to France, a 36 hours transit time and I think almost two weeks in France and she survived very well. And she is on restricted diet, so traveling, going out for dinner is possible, also with a limited diet. Also after being diagnosed with MC, your live won't be over. It is not easy, especially when you have multiple food intolerances but not impossible.
As far as I know, entocort is no problem for the enterolab testing. I was on entocort, when I did the testing. And yes finding out what your intolerances can be an overwhelming process. But non of us did it overnight. Just do it step by step, and the enterolab testing is first good step. Also changing food habits and giving up things, it is process we all do in our speed and in our own time. And use this board to ask your questions, share your experiences and your difficulties. We all get fed up with the diet stuff so now and than!!! At least I do. But in the end when you start to feel so much better, it is all worth it.
Harma
Welcome to the the forum. We are here at all stages of the process, and can share our experiences, realizing that we all are unique and have to find our own way.
That being said, for me finding out my basic intolerances was key to my improvement. Investing in the Enterolab testing was the best thing I ever did. It is very empowering to be able to take control of your recovery, and even if I wasn't particularly happy about how many intolerances the testing showed, I know where I stood and could see the improvement when they were eliminated. Of course it's more complicated than that, as we have a damaged gut and it takes time to heal. And sometimes there are other issues.
Also, it's a slow process and patience is key. I think that's the hardest part to deal with. That's why the forum is so helpful. We are all here to provide our insights, and you can take what advice seems right for you and try it out.
Rosie
That being said, for me finding out my basic intolerances was key to my improvement. Investing in the Enterolab testing was the best thing I ever did. It is very empowering to be able to take control of your recovery, and even if I wasn't particularly happy about how many intolerances the testing showed, I know where I stood and could see the improvement when they were eliminated. Of course it's more complicated than that, as we have a damaged gut and it takes time to heal. And sometimes there are other issues.
Also, it's a slow process and patience is key. I think that's the hardest part to deal with. That's why the forum is so helpful. We are all here to provide our insights, and you can take what advice seems right for you and try it out.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Hi Kim,
Welcome to our internet family. Yes, the disease can be debilitating, depressing, and all sorts of discouraging words fit it like a glove, but as we so often repeat here, you can get your life back, if you work at it. True, no cure is known, but you can definitely control the symptoms.
If you love to cook, you have it made, because cooking from scratch is the easiest way to eliminate the risks of contaminated food. One of our members, Dee, is a professional chef, and she has kindly provided us with several hundred fully-tested, gourmet-quality recipes that are free of gluten, dairy, and soy. Also, she has provided lists of substitutes and alternative techniques, for dealing with intolerances to eggs, and other foods. Most of her recipes taste similar to popular conventional recipes, but many of them taste even better. Also, by studying her suggestions, you will probably be able to easily modify many of your own favorite existing recipes, so that they are free of your intolerances. You will find her recipes here, along with others:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Yes, as Harma mentioned, the Entocort will not materially affect your test results at Enterolab, unless you have been taking it long enough that it has significantly suppressed your immune system, (which would suppress your ability to produce IgA antibodies). You would have to take if for at least a year or more, before that would become a concern.
Actually, it's much easier to track down your intolerances while taking Entocort, than without it. The reason is obvious - how can you tell if a certain food causes a reaction, if you are already reacting most of the time? You have to be symptom-free, in order to detect a reaction. Entocort will suppress your symptoms sufficiently that you should be able to detect food sensitivities in your diet. If you can't tell a difference, then simply drop the dosage, and your sensitivity level will increase, which will allow you to detect food sensitivities.
Again, welcome aboard, and please feel free to ask any questions that come to mind.
Tex (Wayne)
Welcome to our internet family. Yes, the disease can be debilitating, depressing, and all sorts of discouraging words fit it like a glove, but as we so often repeat here, you can get your life back, if you work at it. True, no cure is known, but you can definitely control the symptoms.
If you love to cook, you have it made, because cooking from scratch is the easiest way to eliminate the risks of contaminated food. One of our members, Dee, is a professional chef, and she has kindly provided us with several hundred fully-tested, gourmet-quality recipes that are free of gluten, dairy, and soy. Also, she has provided lists of substitutes and alternative techniques, for dealing with intolerances to eggs, and other foods. Most of her recipes taste similar to popular conventional recipes, but many of them taste even better. Also, by studying her suggestions, you will probably be able to easily modify many of your own favorite existing recipes, so that they are free of your intolerances. You will find her recipes here, along with others:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Yes, as Harma mentioned, the Entocort will not materially affect your test results at Enterolab, unless you have been taking it long enough that it has significantly suppressed your immune system, (which would suppress your ability to produce IgA antibodies). You would have to take if for at least a year or more, before that would become a concern.
Actually, it's much easier to track down your intolerances while taking Entocort, than without it. The reason is obvious - how can you tell if a certain food causes a reaction, if you are already reacting most of the time? You have to be symptom-free, in order to detect a reaction. Entocort will suppress your symptoms sufficiently that you should be able to detect food sensitivities in your diet. If you can't tell a difference, then simply drop the dosage, and your sensitivity level will increase, which will allow you to detect food sensitivities.
Again, welcome aboard, and please feel free to ask any questions that come to mind.
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.
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Kimberly M.
- Posts: 5
- Joined: Mon Jun 28, 2010 7:26 pm
Mary Beth, Harma, Rosie and Tex, thanks soo much for your kind words, encouragement and information! I am so happy to have found this group! I have learned more from you than my doctor. My doctor is soo hard to talk to. He keeps a very strict schedule with each appt. being about 5 minutes. He told me diet has basically nothing to do with MC and won't even talk about it. I really wanted to believe him but as I read all the info. this group offers I know that is not true. Sigh..................
Tex, thanks for the idea with the Entocort. When I drop down to two pills the symptoms begin to return, that would be a good time to begin to figure out my sensitivities. It looks like pretty much all of you are gluten sensitive, that would probably be a good place to start. How long after cutting out a food will you know if that food is a culprit? Probably best to cut out one food group at a time?? My husband and I are planning a trip to Europe in Sept., we will be gone two weeks and I am a little nervous. I could just stay on the full dose of Entocort until after that trip and then try and figure out my food no no's.......what do you all think?? We just returned from a week at a ranch in Texas and I did great on the Entocort. This drug has worked soo well for me. It's probably not good to take it long term though?? I truly get no information from my doc!
Kim:)
Tex, thanks for the idea with the Entocort. When I drop down to two pills the symptoms begin to return, that would be a good time to begin to figure out my sensitivities. It looks like pretty much all of you are gluten sensitive, that would probably be a good place to start. How long after cutting out a food will you know if that food is a culprit? Probably best to cut out one food group at a time?? My husband and I are planning a trip to Europe in Sept., we will be gone two weeks and I am a little nervous. I could just stay on the full dose of Entocort until after that trip and then try and figure out my food no no's.......what do you all think?? We just returned from a week at a ranch in Texas and I did great on the Entocort. This drug has worked soo well for me. It's probably not good to take it long term though?? I truly get no information from my doc!
Kim:)
Kim,
5 minutes is not enough time to properly explain any but the simplest of medical issues, as far as gastrointestinal problems are concerned, and MC is certainly not a simple issue, (but maybe he doesn't know more than 5 minutes worth of information about MC.
). I'm amazed that your doctor would be so stingy with his time, when seeing patients. Apparently he doesn't realize that he is supposed to be working for his patients, not for the almighty dollar.
Yes, if you are going to test for food intolerances, it needs to be done one at a time. However, you have to cut out all the "likely" suspects at one time, and then reintroduce them one at a time. If you cut them out one at a time, and you have more than that one intolerance, then you will continue to react. You have to avoid all intolerances at the same time, in order to eliminate all symptoms. The problem with this self-testing method is that gluten is so persistent, that your body will continue to produce antibodies to it for over a year after you eliminate it from your diet. Until your antibody production level falls below a certain threshold, (different for each of us), you will continue to react, at various levels of severity. While some individuals see significant benefits in a few weeks, (or even less), many people have to carefully follow the diet for 6 months or more, before they begin to see results - some up to a year. It takes a long time for the intestines to heal, and until they heal, they are extremely sensitive to the slightest aggravations, (such as fiber, or too much sugar, etc.).
The fastest way to get your treatment program organized, is to order a panel of stool tests from Enterolab, and after you receive the results, you will know how you need to proceed, without having to guess, about those particular foods, at least. Sometimes, it can be easy, but often, it can be very difficult for some individuals to pinpoint certain food intolerances. The stool tests can save a lot of time and trouble.
While there is always some downside to taking any steroid for long periods of time, many of our members have used Entocort at full strength for a year or more, without any significant problems. If you can reduce the dose, of course, then it can probably be used for an indefinite period of time, without adverse consequences. Unlike the other corticosteroids, only about 10 to 15 % of the active ingredient in Entocort is absorbed into the bloodstream, so that the risks of it causing side effects are greatly reduced.
Tex
5 minutes is not enough time to properly explain any but the simplest of medical issues, as far as gastrointestinal problems are concerned, and MC is certainly not a simple issue, (but maybe he doesn't know more than 5 minutes worth of information about MC.
). I'm amazed that your doctor would be so stingy with his time, when seeing patients. Apparently he doesn't realize that he is supposed to be working for his patients, not for the almighty dollar.Yes, if you are going to test for food intolerances, it needs to be done one at a time. However, you have to cut out all the "likely" suspects at one time, and then reintroduce them one at a time. If you cut them out one at a time, and you have more than that one intolerance, then you will continue to react. You have to avoid all intolerances at the same time, in order to eliminate all symptoms. The problem with this self-testing method is that gluten is so persistent, that your body will continue to produce antibodies to it for over a year after you eliminate it from your diet. Until your antibody production level falls below a certain threshold, (different for each of us), you will continue to react, at various levels of severity. While some individuals see significant benefits in a few weeks, (or even less), many people have to carefully follow the diet for 6 months or more, before they begin to see results - some up to a year. It takes a long time for the intestines to heal, and until they heal, they are extremely sensitive to the slightest aggravations, (such as fiber, or too much sugar, etc.).
The fastest way to get your treatment program organized, is to order a panel of stool tests from Enterolab, and after you receive the results, you will know how you need to proceed, without having to guess, about those particular foods, at least. Sometimes, it can be easy, but often, it can be very difficult for some individuals to pinpoint certain food intolerances. The stool tests can save a lot of time and trouble.
While there is always some downside to taking any steroid for long periods of time, many of our members have used Entocort at full strength for a year or more, without any significant problems. If you can reduce the dose, of course, then it can probably be used for an indefinite period of time, without adverse consequences. Unlike the other corticosteroids, only about 10 to 15 % of the active ingredient in Entocort is absorbed into the bloodstream, so that the risks of it causing side effects are greatly reduced.
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.
Kim, we're very happy you found us.This is for your GI
Diet has everything to do with it in the majority of cases. Please listen to the PP and all the experience here.BTW, your doctor is not any different than most in respect to diet. The 5 minute appointment is beyond belief.
You do NOT need your doctors approval to try the GF diet. I doubt that anyone here wanted to give up gluten but decided that they'd rather do that than have the dreaded D.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Dear Kim
Welcome to the Potty People from Hong Kong (well actually I am in Thailand at the moment - lots of steamed rice and grilled chicken, no delicious spicy Thai food
)
As had been said already it takes time to get better, but with the right guidance and taking control yourself, you will get better. I am one year into entocort and diet and sill not 100%, but I am down to one entocort every other day.
Best wishes for your journey to remission, Ant
Welcome to the Potty People from Hong Kong (well actually I am in Thailand at the moment - lots of steamed rice and grilled chicken, no delicious spicy Thai food
)As had been said already it takes time to get better, but with the right guidance and taking control yourself, you will get better. I am one year into entocort and diet and sill not 100%, but I am down to one entocort every other day.
Best wishes for your journey to remission, Ant