Hi Everyone,
Thanks for having this wonderful wealth of information. It truly is a godsend.
My symptoms started in October of 2011. I ended up having chronic D for 7 months. I finally had a colonoscopy and was diagnosed with MC in May 2012. I went on Budesonide 9mg for a month then weaned off for the next two months. I was actually told by my GI that MC is a one time thing and I would not have to worry about it coming back. Ha! It came back around the holidays, slowly but by January I knew the MC was back for sure. Went to the GI and was put back on the medication and now was told this is a life long disease.
The medication took a little longer to kick in this time so I am almost D free. After reading about the diet changes, food sensitivities, I am overwhelmed and a little scared. Don't know where to start.
Thanks for listening, Jan
Overwhelmed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Overwhelmed
Diagnosed with MC - May 2012
Hi Jan,
Welcome to our internet family. As you have discovered, many/most GI specialists still have a very limited knowledge of how to properly treat MC. Hopefully, that situation will improve over the next few years as more information about the disease becomes available. Currently, though, most of us find that if we are to get our life back, we have to learn enough about the disease to enable us to design our own treatment program. That's why we share experiences and information here, so that we can learn what others have found to work for them, and what doesn't work for them.
Yes, presented all at once, the details about the disease, and the lifestyle changes that most of us have found to be necessary in order to live more comfortably and conveniently with this disease, can seem totally overwhelming. If we take it one step at a time, though, and live our life one day at a time, it becomes doable. And it becomes easier as we become more familiar with our new routine, and we become more confident as we begin to see progress in our recovery.
As you have already noticed, each time we discontinue the use of budesonide, and then start using it again, it takes longer to work, and it seems to be less effective. Eventually, with repeated start/stop cycles, a point may be reached where it will lose almost all of its effectiveness. That has been substantiated by research, but most GI specialists seem to be unaware of the problem. That's why we feel that a budesonide regimen should not be discontinued until all at least all of the major food sensitivities have been removed from the diet, and the gut has had sufficient time to heal, so that relapse is unlikely.
Many of us begin with ordering a sample collection kit from EnteroLab, in Dallas, TX, to determine our most serious food sensitivities. EnteroLab is the only lab in the world that offers food sensitivity tests with a high reliability and high sensitivity. Their stool tests are several orders of magnitude more sensitive (and more reliable) than all of the blood tests that are currently available from other labs. Food sensitivities can also be tracked down by doing an elimination diet, and then after remission is attained, other foods can be tested in the diet, one at a time, to see if we react to them. A description of the elimination diet can be found here. Obviously, sending a sample to the lab is much easier, and faster in the long run, than trial and error dietary testing, but the convenience is offset by the cost of the tests. Here's a link to EnteroLab, where their tests are described:
https://www.enterolab.com/StaticPages/TestInfo.aspx
Yes, MC is a life-altering disease, but that doesn't mean that you can't get your life back. With proper treatment, you can control the symptoms, and if you're like most of us, you will embrace your new life with a newfound respect for many of the little pleasures that we previously took for granted, before MC temporarily derailed our life.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. As you have discovered, many/most GI specialists still have a very limited knowledge of how to properly treat MC. Hopefully, that situation will improve over the next few years as more information about the disease becomes available. Currently, though, most of us find that if we are to get our life back, we have to learn enough about the disease to enable us to design our own treatment program. That's why we share experiences and information here, so that we can learn what others have found to work for them, and what doesn't work for them.
Yes, presented all at once, the details about the disease, and the lifestyle changes that most of us have found to be necessary in order to live more comfortably and conveniently with this disease, can seem totally overwhelming. If we take it one step at a time, though, and live our life one day at a time, it becomes doable. And it becomes easier as we become more familiar with our new routine, and we become more confident as we begin to see progress in our recovery.
As you have already noticed, each time we discontinue the use of budesonide, and then start using it again, it takes longer to work, and it seems to be less effective. Eventually, with repeated start/stop cycles, a point may be reached where it will lose almost all of its effectiveness. That has been substantiated by research, but most GI specialists seem to be unaware of the problem. That's why we feel that a budesonide regimen should not be discontinued until all at least all of the major food sensitivities have been removed from the diet, and the gut has had sufficient time to heal, so that relapse is unlikely.
Many of us begin with ordering a sample collection kit from EnteroLab, in Dallas, TX, to determine our most serious food sensitivities. EnteroLab is the only lab in the world that offers food sensitivity tests with a high reliability and high sensitivity. Their stool tests are several orders of magnitude more sensitive (and more reliable) than all of the blood tests that are currently available from other labs. Food sensitivities can also be tracked down by doing an elimination diet, and then after remission is attained, other foods can be tested in the diet, one at a time, to see if we react to them. A description of the elimination diet can be found here. Obviously, sending a sample to the lab is much easier, and faster in the long run, than trial and error dietary testing, but the convenience is offset by the cost of the tests. Here's a link to EnteroLab, where their tests are described:
https://www.enterolab.com/StaticPages/TestInfo.aspx
While it may not be easy to visualize a silver lining associated with this disease, so early in your treatment program, as miserable as the symptoms are, at least the disease is not fatal, and when properly treated, it doesn't normally lead to any additional life-threatening problems. That can't be said of the more severe inflammatory bowel diseases, such as Crohn's disease and ulcerative colitis.Jan wrote:Also wanted to mention that I am really scared of this. Kinda freaking out.
Yes, MC is a life-altering disease, but that doesn't mean that you can't get your life back. With proper treatment, you can control the symptoms, and if you're like most of us, you will embrace your new life with a newfound respect for many of the little pleasures that we previously took for granted, before MC temporarily derailed our life.
Again, welcome aboard, and please feel free to ask anything.
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.
Hi Jan,
Welcome to our board! Don't "freak out" as remission is possible and you can have lengthy spells of it by diet modifications. The first and foremost thing to do is stop eating gluten. I found out the hard way that you can't eat 'mostly' gluten-free, you have to go 'completely' gluten-free with no cheating. Start with this and then as Tex suggested some testing by EnteroLab is advised to see if you react to soy, dairy, nuts.. etc. Testing would be a good second step. Unfortunately, some of us can't afford it so we keep a food journal and by trial and error come up with a list of safe and unsafe foods. We are a "group" yet our food lists are very "individual". Happy food journey to you!
Cory
Welcome to our board! Don't "freak out" as remission is possible and you can have lengthy spells of it by diet modifications. The first and foremost thing to do is stop eating gluten. I found out the hard way that you can't eat 'mostly' gluten-free, you have to go 'completely' gluten-free with no cheating. Start with this and then as Tex suggested some testing by EnteroLab is advised to see if you react to soy, dairy, nuts.. etc. Testing would be a good second step. Unfortunately, some of us can't afford it so we keep a food journal and by trial and error come up with a list of safe and unsafe foods. We are a "group" yet our food lists are very "individual". Happy food journey to you!
Cory
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Thank you Cory for your kind words. Since posting, I don't feel alone anymore.
I will begin with going completely gluten free and then hopefully at some point, I can afford the testing. Also going to start the food journal.
You are a wonderful group, so happy I found it!
Jan
I will begin with going completely gluten free and then hopefully at some point, I can afford the testing. Also going to start the food journal.
You are a wonderful group, so happy I found it!
Jan
Diagnosed with MC - May 2012
Jan,
You are from the Midwest like me, and I wonder where your gastroenterologist is. I had pretty much decided that I would go to Univ of Chicago, Mayo or Cleveland Clinic if I did not get the answers I needed from my doctor in Michigan.
We probably would not have this disease if we were not a "freak out" kind of people whose stress can get out of hand.
Tex is sooo right when he says that you can get your life back. I was just diagnosed last month and already am beginning to feel like things are going to be okay and that my life is turning around so that I DO have it back again. It is not the same life which is probably a good thing. I am learning to rest when I need rest and to ask for what I need rather than to "not bother" anyone with something.
I really am beginning to understand how "not alone" I am. It fascinates me how many new people join this group each day. I would be interested in knowing if it has always been this way or if more people are being diagnosed than 10 years ago. I have several friends who have been diagnosed with IBS and I am just SURE that they have MC, but their gastroenterologists never have done biopsies.
I feel so lucky to have finally gotten a diagnosis. Not exactly what I wished for, but it is not Crohn's or UC and I was terrified that it would be either of those or colon cancer. We have a disease, but it is a disease that we can work with. Thank God!
You are from the Midwest like me, and I wonder where your gastroenterologist is. I had pretty much decided that I would go to Univ of Chicago, Mayo or Cleveland Clinic if I did not get the answers I needed from my doctor in Michigan.
We probably would not have this disease if we were not a "freak out" kind of people whose stress can get out of hand.
Tex is sooo right when he says that you can get your life back. I was just diagnosed last month and already am beginning to feel like things are going to be okay and that my life is turning around so that I DO have it back again. It is not the same life which is probably a good thing. I am learning to rest when I need rest and to ask for what I need rather than to "not bother" anyone with something.I really am beginning to understand how "not alone" I am. It fascinates me how many new people join this group each day. I would be interested in knowing if it has always been this way or if more people are being diagnosed than 10 years ago. I have several friends who have been diagnosed with IBS and I am just SURE that they have MC, but their gastroenterologists never have done biopsies.
I feel so lucky to have finally gotten a diagnosis. Not exactly what I wished for, but it is not Crohn's or UC and I was terrified that it would be either of those or colon cancer. We have a disease, but it is a disease that we can work with. Thank God!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
Freaking out right now too... I'm with you, sister. I just got my diagnosis Tuesday and I'm still reeling from it.
Paralyzed nearly from the overwhelming feeling. With 2 teenage boys that will surely look at me with disdain, or fury rather, if I attempt to toss out all the food with gluten in the pantry, it will be doubly hard on my weak will power to overcome temptation.
*thinks to self... I wonder if a hefty dose of xanax will worsen MC symptoms... it may be my only hope***
Paralyzed nearly from the overwhelming feeling. With 2 teenage boys that will surely look at me with disdain, or fury rather, if I attempt to toss out all the food with gluten in the pantry, it will be doubly hard on my weak will power to overcome temptation.
*thinks to self... I wonder if a hefty dose of xanax will worsen MC symptoms... it may be my only hope***
Caught in a perpetual game of mommy survivor... haven't been voted off the island yet!
Jane - I'm close enough to Chicago that if I needed to, I could go to UIC. Thanks for the suggestion. Before my diagnosis, I swore I was dying, for 7 months I was dead and buried! So yes, thank God we can work with this disease. (as soon as I stop freaking out!) It seems like gluten intolerance and now MC and other digestive problems are very prevalent now, it's interesting for sure. Glad you are feeling better.
Teri - all I want to do is get in bed and pull the covers over my head and take the longest nap I can! Seriously, this is CRAZY!
Maybe keep your gluten free food separate from your boys. They will hunt you down! I have 4 brothers and an adult son who still lives to eat, so what a challenge you face. But you will do it, we all will.....(did the xanax help?) Thanks for posting and let me know how you are doing.
Teri - all I want to do is get in bed and pull the covers over my head and take the longest nap I can! Seriously, this is CRAZY!
Maybe keep your gluten free food separate from your boys. They will hunt you down! I have 4 brothers and an adult son who still lives to eat, so what a challenge you face. But you will do it, we all will.....(did the xanax help?) Thanks for posting and let me know how you are doing.
Diagnosed with MC - May 2012
Welcome, Jan,
Rest assured that it is a pretty universal experience to first freak out; I certainly did. But if you approach managing the disease in a step-by-step way, you can gain a sense of mastery over it. It's not going away, so you have to learn how to manage it in a way that lets you regain control over your life. It takes time, and persistence, and every person on this board knows that, and will help you with frustration or mis-steps along the way.
Jan and Teri, I have taken alprazolam/Xanax on an as-needed basis for a while. I don't perceive any negative effect from it. Ativan might be another anti-anxiety med to talk with your docs about.
But, I also recommend other ways to deal with stress, once you're feeling well enough. I do yoga, and a core strength class, and walk when it's not acting like Siberia here in New England, and I feel that the regular exercise has helped me.
You just do what you have to do for your health, and you get the people who live with you to understand what you have to do. If they've seen how sick you've been, hopefully they will be patient. I eat totally gluten/dairy-free, but my husband doesn't, though he's been a champ at mostly eating what I do. If he's in the mood for a pizza, he gets it, and I do for myself. If he's in the mood for regular pasta, he cooks it for himself, and I cook my GF pasta. It all works out.
Hang in there!
Rest assured that it is a pretty universal experience to first freak out; I certainly did. But if you approach managing the disease in a step-by-step way, you can gain a sense of mastery over it. It's not going away, so you have to learn how to manage it in a way that lets you regain control over your life. It takes time, and persistence, and every person on this board knows that, and will help you with frustration or mis-steps along the way.
Jan and Teri, I have taken alprazolam/Xanax on an as-needed basis for a while. I don't perceive any negative effect from it. Ativan might be another anti-anxiety med to talk with your docs about.
But, I also recommend other ways to deal with stress, once you're feeling well enough. I do yoga, and a core strength class, and walk when it's not acting like Siberia here in New England, and I feel that the regular exercise has helped me.
You just do what you have to do for your health, and you get the people who live with you to understand what you have to do. If they've seen how sick you've been, hopefully they will be patient. I eat totally gluten/dairy-free, but my husband doesn't, though he's been a champ at mostly eating what I do. If he's in the mood for a pizza, he gets it, and I do for myself. If he's in the mood for regular pasta, he cooks it for himself, and I cook my GF pasta. It all works out.
Hang in there!
Suze
Welcome Jan. I have to say that this week has been a particularly heavy week of newbies. It's not always like this, but it does help to read each other's posts. So read as much as you can.
Try not to Freak out. Staying as stress free as you can will help your healing. Take a deep breath and vow to go gluten and dairy free and try not to eat raw fruits and veggies.. For now. Until you figure out what else may be giving you problems. Getting tested is a great way to do things, but if you can't afford it, then you have to take the bull by the horns and do an elimination diet and keep a food/ bowel journal. Some people choose to just take a couple things out of their diet at first and see if it's enough. I went the other way and stopped eating EVERYTHING THAT COULD POSSIBLY BE GIVING ME PROBLEMS while i was on Budesonide. I was on it a total of 6 months weaning slowly off. It worked wonders and pretty fast. After I had significant healing, I tested and added foods back in one at a time.
My husband and daughter still both eat gluten, soy, and dairy, but when I cook dinner, they eat what I cook. I have gotten very good at changing recipes to fit my needs.I have GF bread in the freezer in case I want toast, but it's not often. I eat rice and potatoes for starch. Lots of meat, chicken, pork, and fish. cook your veggies well. Rice and corn chex with almond milk makes a quick breakfast.
This all takes time and patience.... and getting your head around the journey you have ahead of you will come.
Good luck and ask anything
Leah
Try not to Freak out. Staying as stress free as you can will help your healing. Take a deep breath and vow to go gluten and dairy free and try not to eat raw fruits and veggies.. For now. Until you figure out what else may be giving you problems. Getting tested is a great way to do things, but if you can't afford it, then you have to take the bull by the horns and do an elimination diet and keep a food/ bowel journal. Some people choose to just take a couple things out of their diet at first and see if it's enough. I went the other way and stopped eating EVERYTHING THAT COULD POSSIBLY BE GIVING ME PROBLEMS while i was on Budesonide. I was on it a total of 6 months weaning slowly off. It worked wonders and pretty fast. After I had significant healing, I tested and added foods back in one at a time.
My husband and daughter still both eat gluten, soy, and dairy, but when I cook dinner, they eat what I cook. I have gotten very good at changing recipes to fit my needs.I have GF bread in the freezer in case I want toast, but it's not often. I eat rice and potatoes for starch. Lots of meat, chicken, pork, and fish. cook your veggies well. Rice and corn chex with almond milk makes a quick breakfast.
This all takes time and patience.... and getting your head around the journey you have ahead of you will come.
Good luck and ask anything
Leah
Jan and Teri, I'm another newbie (diagnosed 1/21/13). I'm actually not freaking out as much as I could be because I'm so relieved to finally have a diagnosis. I thought I was losing my mind. I've found that giving up gluten is a lot easier than I expected because I feel so much better without it. For several years before my diagnosis I ate very low carb, so didn't eat much gluten at all. Its only been the past few months that I've eaten gluten rich treats and that's when everything started going terribly wrong. I still believe that a huge cinnamon bun with buttercream icing (and lots of it)is what finally sent me over the edge. Now the thought of eating one makes me queasy. We can do this with each others help.
Leni
Diagnosed with lymphocytic colitis and IgA deficiency on 1/21/13.
Anything is possible one day at a time!
Diagnosed with lymphocytic colitis and IgA deficiency on 1/21/13.
Anything is possible one day at a time!
-
Mrs Turtle
- Posts: 11
- Joined: Sat Jan 12, 2013 11:11 am
- Location: St. Paul, Minnesota
Jan,
I am another of the newbies posting this week for the first time. I was diagnosed with collagenous colitis at the end of November. I am now on my 8th week on budesonide, which is helping. I decided that I was worth spending the money on Enterolab testing, as long as I could afford it. Even though It appears that I may not have gluten sensitivity, I have decided to go gluten free and dairy free anyway.
My MC was probably caused by NSAIDs that I had been taking, but stopping those did not stop the WD. I purchased Tex's book and while reading it, I discovered that another medication I was taking for osteopenia could be causing me additional problems. After stopping that drug 2 weeks ago, I am now really feeling like normal might be possible.
I think that we have to try multiple approaches to dealing with this, even if we cannot prove which ones are the problem. After all, my last beloved Diet Coke was consumed by me two weeks ago. That has been my biggest sacrifice. I also learned from this board that artificial sweeteners can be a problem. I have actually discovered that I love Cinnamon Chex with a banana and vanilla unsweetened almond milk. I think it tastes better than many breakfasts I had before MC. I am also learning from this board how to deal with the pasta issue when my husband wants his regular spaghetti. If I have to cook a separate pot of my gluten free pasta, it is well worth it if I don't have to run to the bathroom later.
My advice as a fellow newbie is to remain calm and keep reading and learning. Be willing to try new ideas because they just might work.
Marion
I am another of the newbies posting this week for the first time. I was diagnosed with collagenous colitis at the end of November. I am now on my 8th week on budesonide, which is helping. I decided that I was worth spending the money on Enterolab testing, as long as I could afford it. Even though It appears that I may not have gluten sensitivity, I have decided to go gluten free and dairy free anyway.
My MC was probably caused by NSAIDs that I had been taking, but stopping those did not stop the WD. I purchased Tex's book and while reading it, I discovered that another medication I was taking for osteopenia could be causing me additional problems. After stopping that drug 2 weeks ago, I am now really feeling like normal might be possible.
I think that we have to try multiple approaches to dealing with this, even if we cannot prove which ones are the problem. After all, my last beloved Diet Coke was consumed by me two weeks ago. That has been my biggest sacrifice. I also learned from this board that artificial sweeteners can be a problem. I have actually discovered that I love Cinnamon Chex with a banana and vanilla unsweetened almond milk. I think it tastes better than many breakfasts I had before MC. I am also learning from this board how to deal with the pasta issue when my husband wants his regular spaghetti. If I have to cook a separate pot of my gluten free pasta, it is well worth it if I don't have to run to the bathroom later.
My advice as a fellow newbie is to remain calm and keep reading and learning. Be willing to try new ideas because they just might work.
Marion
Welcome Jan and all other new members,
You are going to get great advice on this board! Following it isn't always easy, especially during times of stress. I am a perfect example of that. In November my husband was diagnosed with kidney cancer, and he had to have surgery to remove his kidney. I pretty much abandoned any of the dietary changes that I had been trying to make. I wanted him to have his favorite meals, even if they included gluten, and I wanted to sit down and enjoy the meals with him. To make a long story short, he had the surgery and he is fine. I am a mess.
So today I have finally gotten back to this board, and will hopefully get back to gluten free and lactose free. The diet was helping, because it was quite predictable that all of my trips to the bathroom were confined to one hour in the morning. Now it is back to all hours of the day and night along with abdominal pain that is fairly frequent, and all of the gurgling stomach noises. So I will begin again.
So I guess that makes me a newbie - again!
Marion
You are going to get great advice on this board! Following it isn't always easy, especially during times of stress. I am a perfect example of that. In November my husband was diagnosed with kidney cancer, and he had to have surgery to remove his kidney. I pretty much abandoned any of the dietary changes that I had been trying to make. I wanted him to have his favorite meals, even if they included gluten, and I wanted to sit down and enjoy the meals with him. To make a long story short, he had the surgery and he is fine. I am a mess.
So today I have finally gotten back to this board, and will hopefully get back to gluten free and lactose free. The diet was helping, because it was quite predictable that all of my trips to the bathroom were confined to one hour in the morning. Now it is back to all hours of the day and night along with abdominal pain that is fairly frequent, and all of the gurgling stomach noises. So I will begin again.
So I guess that makes me a newbie - again!
Marion