hi i'm new
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
hi i'm new
hi all, i just found yall today and i'm so thrilled. i have never talked to another living soul w/this disease! i have microscopic colitis and was diagnosed 7 years ago. three years ago i was also diagnosed w/ fibromyalgia. i'm a stay at home mom (both of my kids are in school) so i'm so fortunate not to have to work, however, my husband is not supportive at all, so i'm constantly trying to mask/hide everything especially my feelings about it all. quite frankly, i'm pretty sure he doesn't believe either condition is real. anyway, i am so looking forward to being a part of this group. i look forward to meeting you all and chatting with yall. btw, i'm a little confused about posting (this is my first forum) so i hope that i'm doing it right and in the right place, etc..
Jill
Happy that you have found us after 7 years, and now you will get to know lots of great people ..
You'll find that you can talk about anything here with us and we all have walked in your shoes.
Sorry to hear that you don't get much support from Hubby, but I'll quarantee, that you'll get all of the support that you need right here with our online family.
Are you currently taking and meds or on a specific diet to control your MC????
You'll have to give us the scoop on what the last 7 years have been like.
And yes, if you're not familiar with a message board, you did just fine when posting here.
Dee~~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
Hi Jill, and welcome to our family. You will find so much support and understanding here. It is just tough for anyone who doesn't have MC to really understand what it's like, so it's wonderful to have a group that knows exactly what you're going through.
It's fairly common to have MC and fibromyalgia together, as well as other autoimmune diseases. They tend to like to cluster!
I was just diagnosed with MC last summer, although I had had symptoms of D for 5 years before that, and other symptoms, like stomach pain, since long before, so I know what it's like to deal with this for a long time.
Jump right in and learn all you can!
Love,
Courtney
It's fairly common to have MC and fibromyalgia together, as well as other autoimmune diseases. They tend to like to cluster!
I was just diagnosed with MC last summer, although I had had symptoms of D for 5 years before that, and other symptoms, like stomach pain, since long before, so I know what it's like to deal with this for a long time.Jump right in and learn all you can!
Love,
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Hi Jill,
Welcome to our online family. Yep, you've found a bunch of people just like you, here. As Courtney mentioned, no one truly understands MC, unless they have it. Most people who don't have it, can't understand how it could be a life-altering disease, but it definitely is.
As Dee said, you're doing just fine with your message posting, but anytime you have any questions about anything, please don't hesitate to ask. I see you live north of Big "D", (no pun intended). We have at least half a dozen members from Texas, on this board, but we're scattered all over the state.
Please feel free to asking anything, and again, welcome aboard.
Tex (Wayne)
Welcome to our online family. Yep, you've found a bunch of people just like you, here. As Courtney mentioned, no one truly understands MC, unless they have it. Most people who don't have it, can't understand how it could be a life-altering disease, but it definitely is.
As Dee said, you're doing just fine with your message posting, but anytime you have any questions about anything, please don't hesitate to ask. I see you live north of Big "D", (no pun intended). We have at least half a dozen members from Texas, on this board, but we're scattered all over the state.
Please feel free to asking anything, and again, welcome aboard.
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.
nice to meet you Dee and Courtney
thanks for your replies and welcomes dee and courtney. my D started after the birth of my second child 11 years ago and took about four years to be diagnosed. however, i have always had stomach problems, just not the D. i would say every few months i go through two or three weeks of heavy D, bad stomach pains, fatigue, etc. years ago i tried doing the elimination diet thing and never really found any specific food triggers. i kept food logs for the first few years and never could identify a trigger that way either. when i'm in an episode, i can barely leave the house and have had to go to an emergency clinic twice for i.v. fluids. just recently (maybe the last four or five weeks) i've had very bad constipation and was wondering if anyone has experienced this with their mc. i've been taking a stool softener but am only having one bm every four or five days and when i do it's excruciating! wow it's so weird talking this graphically about all this and knowing yall aren't going to be grossed out, lol. anyway thanks so much for the welcomes and for listening.
Jill,
The pattern you describe is not unusual for MC. Quite a few of us have alternating D and C.
I also kept a food log for a couple of years, but I never could connect my reactions with gluten. I eventually resolved all my symptoms, though, by eliminating all traces of gluten from my diet. Once I cut out all the gluten, then I was able to see patterns for other food intolerances in my food diary. Like a lot of us here, I've been symptom free for over five years now, by diet alone.
Tex
The pattern you describe is not unusual for MC. Quite a few of us have alternating D and C.
I also kept a food log for a couple of years, but I never could connect my reactions with gluten. I eventually resolved all my symptoms, though, by eliminating all traces of gluten from my diet. Once I cut out all the gluten, then I was able to see patterns for other food intolerances in my food diary. Like a lot of us here, I've been symptom free for over five years now, by diet alone.
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.
hey tex, thank you for your welcome. i have been tested for gluten intolerance by the doctor and it came back negatiive. however, i have been on dr. fine's website and understand that they do not always show up on the doctor tests. i guess i will send off for his stool test to finally find out. i have thought for awhile now that gluten sensitivity could be the culprit, but everytime i investigate how to do it, it overwhelms me. i guess i really need to try this. thanks again for your welcome, i'm so happy to have found ya'll.
Jill
Jill;
Welcome!!! I can't say much more than others here have, but want to make sure you know you can always do as you just have - post any time and say anything. You are so right - we've been there and nothing grosses us out.
The gluten free GF diet is the way many of us have chosen to control our symptoms. Getting started on it is a very steep learning curve, and an unsupportive husband won't make that any easier. However, once you get used to it, it really isn't bad at all. I recognize that I am fortunate - I live alone, so my entire house is gluten free and has been for about 6 years now. Many others here, though, live with others and maintain their own GF diet. My grandkids are at my house lots, and they just seem to know by now that they eat differently at grandma's house. They are 5 & 7, so have never really known me to ever eat as they do. They will be eating something with me and ask, "Is this your kind of food?" I also am fortunate in that I love to cook, so I do lots of recipe collecting and trying new things all the time. I see this as a challenge, rather than a loss.
Once again, welcome to our family.
G'ma Mary
Welcome!!! I can't say much more than others here have, but want to make sure you know you can always do as you just have - post any time and say anything. You are so right - we've been there and nothing grosses us out.
The gluten free GF diet is the way many of us have chosen to control our symptoms. Getting started on it is a very steep learning curve, and an unsupportive husband won't make that any easier. However, once you get used to it, it really isn't bad at all. I recognize that I am fortunate - I live alone, so my entire house is gluten free and has been for about 6 years now. Many others here, though, live with others and maintain their own GF diet. My grandkids are at my house lots, and they just seem to know by now that they eat differently at grandma's house. They are 5 & 7, so have never really known me to ever eat as they do. They will be eating something with me and ask, "Is this your kind of food?" I also am fortunate in that I love to cook, so I do lots of recipe collecting and trying new things all the time. I see this as a challenge, rather than a loss.
Once again, welcome to our family.
G'ma Mary
Those who are not part of the solution, are part of the problem.
Hi Jill,
While I've had just plain old D for years, I understand that MC waxes and wanes for many people, with no apparent explanation, and as Tex said, some members experience constipation from time to time. Your issue with constipation, though, made me think of my mom. She had an undiagnosed thyroid disorder for many years. The whole time I was a kid, she suffered from horrible constipation, like what you're describing, and even worse. Eventually, she was diagnosed with hypothyroid, which is a cause of C. She was probably about your age when she was diagnosed, actually. I also have hypothyroid, although I've never had C (probably thanks to the MC), and so do many other members. As I said, autoimmune diseases like to hang out. Have you had your thyroid levels tested recently? That could also be a cause of your fatigue.
Sounds like you have really been through a lot to get here. Unfortunately, your husband's lack of support is symptomatic of the "You don't look sick," attitude many people (including some docs) in our society take toward chronic illness and autoimmune. I hope you won't find this offensive, but I want to encourage you to put your health first and do whatever you have to do to get better. Sometimes the people who love us the most just don't want us to be sick, so they do everything they can to deny it.
But know that your symptoms are real, they are not all in your head, and you can get better if you meet them head on and are proactive about your treatment, whether you choose diet, meds, or a combination of the two.
We are here to support you and to help you find the right path for you.
Love,
Courtney
While I've had just plain old D for years, I understand that MC waxes and wanes for many people, with no apparent explanation, and as Tex said, some members experience constipation from time to time. Your issue with constipation, though, made me think of my mom. She had an undiagnosed thyroid disorder for many years. The whole time I was a kid, she suffered from horrible constipation, like what you're describing, and even worse. Eventually, she was diagnosed with hypothyroid, which is a cause of C. She was probably about your age when she was diagnosed, actually. I also have hypothyroid, although I've never had C (probably thanks to the MC), and so do many other members. As I said, autoimmune diseases like to hang out. Have you had your thyroid levels tested recently? That could also be a cause of your fatigue.
Sounds like you have really been through a lot to get here. Unfortunately, your husband's lack of support is symptomatic of the "You don't look sick," attitude many people (including some docs) in our society take toward chronic illness and autoimmune. I hope you won't find this offensive, but I want to encourage you to put your health first and do whatever you have to do to get better. Sometimes the people who love us the most just don't want us to be sick, so they do everything they can to deny it.
But know that your symptoms are real, they are not all in your head, and you can get better if you meet them head on and are proactive about your treatment, whether you choose diet, meds, or a combination of the two.
We are here to support you and to help you find the right path for you.
Love,
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Hi Jill and 
Good to have you on board. You truly do have a double whammy - 2 diseases that some folks (including some docs even) don't believe are real. Bummer.
Browse around and read all you can here - there is a wealth of info, not to mention the most helpful and understanding people in the world. I have always maintained that more people with MC have gone into remission because of this board than because of the traditional medical community.
I have been in remission now on diet alone for about 7 years. (Unfortunately, I am one with multiple intolerances - not just gluten).
Oh, and BTW, my traditional celiac blood test was negative, too. But my stool test from Dr. Fine was positive, and I can assure you that I am extremely sensitive to even the slightest bit of gluten.
I really don't know much about fibromyalgia (despite the fact that I am an MD - we don't see it much in pediatrics) but did you know that many with untreated MC/gluten sensitivity also experience muscle and joint aches and pains as well as severe fatigue? I sure did (along with low-grade fevers, too), and all of that is gone now. It took time - my energy level did not return to normal until about 2 years after starting the diet. I don't mean to imply that your fibromyalgia is due to the MC/gluten in your case. I am aware that it is a separate entity, but it could possibly be made worse by your gut disease.
I had a real go-round last year with a sinus infection that developed after a dental procedure. Ended up with 2 sinus surgeries. About a month ago I had a cold that settled into that same sinus again. I used everything my ENT doc suggested - antibiotics, nasal irrigation, humidification, Afrin the first few days. When it was still bothering me after a few weeks I decided to try Mucinex (guanefesin). I don't think most docs think it has much value, but it did WONDERS for me! (My doc had never mentioned it). Anyway, I am bringing this up because when I was researching guanefesin I saw that some with fibromyalgia are singing its praises. Apparently it can provide relief - it is not marketed for this purpose, so docs probably aren't recommending it. BUT.......it seems to be a very safe drug and it IS over-the-counter. (Disclaimer -This is NOT a specific medical recommendation from me to you - just informational. I am a doc who is open to alternative approaches, so things like this always catch my eye).
Please tell us more about your history - we learn the most from each other! Looking forward to future chats.
Love,
Polly
Good to have you on board. You truly do have a double whammy - 2 diseases that some folks (including some docs even) don't believe are real. Bummer.
Browse around and read all you can here - there is a wealth of info, not to mention the most helpful and understanding people in the world. I have always maintained that more people with MC have gone into remission because of this board than because of the traditional medical community.
I have been in remission now on diet alone for about 7 years. (Unfortunately, I am one with multiple intolerances - not just gluten).
Oh, and BTW, my traditional celiac blood test was negative, too. But my stool test from Dr. Fine was positive, and I can assure you that I am extremely sensitive to even the slightest bit of gluten.
I really don't know much about fibromyalgia (despite the fact that I am an MD - we don't see it much in pediatrics) but did you know that many with untreated MC/gluten sensitivity also experience muscle and joint aches and pains as well as severe fatigue? I sure did (along with low-grade fevers, too), and all of that is gone now. It took time - my energy level did not return to normal until about 2 years after starting the diet. I don't mean to imply that your fibromyalgia is due to the MC/gluten in your case. I am aware that it is a separate entity, but it could possibly be made worse by your gut disease.
I had a real go-round last year with a sinus infection that developed after a dental procedure. Ended up with 2 sinus surgeries. About a month ago I had a cold that settled into that same sinus again. I used everything my ENT doc suggested - antibiotics, nasal irrigation, humidification, Afrin the first few days. When it was still bothering me after a few weeks I decided to try Mucinex (guanefesin). I don't think most docs think it has much value, but it did WONDERS for me! (My doc had never mentioned it). Anyway, I am bringing this up because when I was researching guanefesin I saw that some with fibromyalgia are singing its praises. Apparently it can provide relief - it is not marketed for this purpose, so docs probably aren't recommending it. BUT.......it seems to be a very safe drug and it IS over-the-counter. (Disclaimer -This is NOT a specific medical recommendation from me to you - just informational. I am a doc who is open to alternative approaches, so things like this always catch my eye).
Please tell us more about your history - we learn the most from each other! Looking forward to future chats.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Jill, you have found the best site for information AND support.In addition to the information on this PP site, here is a primer on gluten.
http://www.webmd.com/diet/slideshow-gluten-free-diet
I'm glad you are thinking of testing with EnteroLab. I did it over the loud protestations of my doctor because of all the information I found here from Tex and the PP.
It may take some time but I know you are going to feel a lot better.......
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Thank you g'ma mary, polly, joan and jlh for your welcomes and kind words. i am in total tears right now from all your kindness and the relief of finding people who truly understand. i have lived the past ten years completely hiding and struggling to act perfectly normal around my family and everyone and to totally not act like a sick person. that alone as you know is exhausting. courtney, i will double check my thyroid levels again, that's a great idea. and polly, i really believe the fibro in my case is a direct result from the mc. since ur a pediatrician thought u might be interested to know that my daughter has had a "rare" autoimmune disease since birth called PFAPA (which is in the class of fever of unknown origin). she is slowly growing out of it and has been fever free for almost a year now. also, my sister and maternal grandmother (deceased) have chron's disease, so the females in my family seem to have auto immune issues. thanks jlh for the gluten diet site. i am definitely going to go this route after finding all of you and knowing i have the support here to get through it. i really can't thank you all enough (i'm sobbing again). for years i've suffered in silence, with no one to talk to and just knowing ya'll r here is very overwhelmiing! i can't even remember the last time i cried like this, lol. thank you thank you thank you all.
Jill
Awwwww Jill!!!
You brought tears to my eyes when I read your last post.
We are here for you and will help you along your journey to better health.
Just remember that you are not alone anymore..
You have found a BIG family here that'll be with you thru thick or thin!!!
Dee~~~
You brought tears to my eyes when I read your last post.
We are here for you and will help you along your journey to better health.
Just remember that you are not alone anymore..
You have found a BIG family here that'll be with you thru thick or thin!!!
Dee~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
Jill
I got my diagnosis on a Friday, found Tex and the PP that day, by Monday I was GF. I never took either of the meds (Entocort and Lialda) my doc was going to let me decide which to take. I had under two months of doing great and then problems again. I did Dr. Fine's other test because of the PP's experiences and found soy was the culprit.
I still find it astounding that the PP have the answers and the docs refuse to believe it.......
My DSis is named Jill.
I still find it astounding that the PP have the answers and the docs refuse to believe it.......
My DSis is named Jill.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
jleslie!!
Im sorry to hear your hubby lacks understanding hun!! hopefully he will come around an be more supportive eventually..
Anyway now that you are here, you will find everyone in this family very supportive and caring..Dont hold back on the way you feel both physically and mentally. We are all here to support and help everyone as best we can. You will find a a wealth of knowledge and information relating to mc here and Tex!! will soon sort u out.. 
hes a diamond!!
Im sorry to hear your hubby lacks understanding hun!! hopefully he will come around an be more supportive eventually..
Anyway now that you are here, you will find everyone in this family very supportive and caring..Dont hold back on the way you feel both physically and mentally. We are all here to support and help everyone as best we can. You will find a a wealth of knowledge and information relating to mc here and Tex!!
will soon sort u out.. hes a diamond!!Angy ;)