Hi Kathryn,
Welcome to our Internet family. You seem to be off to a good start on your recovery.
Please feel free to ask anything.
Tex
Attn newbies or anyone struggling....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Glad I found this Site!!!
I'm not a newbie, by any stretch of the imagination, but I am new to this site. I've suffered for the last 8 years and most of it has been because my doctors were/are so ignorant about MC. I was misdiagnosed as having IBS in early 2007. I was very ill for another three years, and was literally a walking skeleton and near collapse, before I was finally sent to a GI doctor in 2010. He performed a colonoscopy, with biopsies, and diagnosed me with collagenous colitis the summer of that year.
I've learned more about my disease, in the past few days using this site, than I've known about it in the last eight years!! Thank you so much for this site, and for caring and knowledgeable people like you, Gabes! This has been a very hard journey for me and I've felt so alone. Now I have a huge bunch of people who can relate to what I've gone through and really understand what it's like to live with MC.
I had the blood test for gluten intolerance and, of course, it came back negative. Hence, I've been eating all of the wrong foods and have been getting very ill again in spite of the Asacol HD I take three times a day. Now that I know this is diet related, I have a place to start, to try and get my life back again. I actually cried when I found this site because I was so relieved. I'm no longer alone and that feels better than anything I've felt in a long, long time. Thank you from the bottom of my heart..
I've learned more about my disease, in the past few days using this site, than I've known about it in the last eight years!! Thank you so much for this site, and for caring and knowledgeable people like you, Gabes! This has been a very hard journey for me and I've felt so alone. Now I have a huge bunch of people who can relate to what I've gone through and really understand what it's like to live with MC.
I had the blood test for gluten intolerance and, of course, it came back negative. Hence, I've been eating all of the wrong foods and have been getting very ill again in spite of the Asacol HD I take three times a day. Now that I know this is diet related, I have a place to start, to try and get my life back again. I actually cried when I found this site because I was so relieved. I'm no longer alone and that feels better than anything I've felt in a long, long time. Thank you from the bottom of my heart..
Kim "The Outhouse Polka Queen"
Raynaud's Disease, 1982
Thyroid Disease, 2007
Collagenous Colitis, 2010
Raynaud's Disease, 1982
Thyroid Disease, 2007
Collagenous Colitis, 2010
Dear Kim,
I'm so glad you found us too....I was where you are now this last May. Albeit I only have Colitis I can feel for everyone's AI issue that is brought up on this site.
Read, read and read some more.....then ask away as no question is a dumb one here ;-)
Here's to happier Holidays!
Erica
I'm so glad you found us too....I was where you are now this last May. Albeit I only have Colitis I can feel for everyone's AI issue that is brought up on this site.
Read, read and read some more.....then ask away as no question is a dumb one here ;-)
Here's to happier Holidays!
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Kim, Welcome, and as Erica said, "There are no dumb questions here."
Things will settle down for you when you get your diet under control. I was where you are not so long ago, and once I got my diet under control, I began to feel human again.
I read Tex's book and almost all of the archives on here. Pour yourself a glass of water, get in a comfy chair, and read and then read some more. It'll come together for you.
Merry Christmas!
Things will settle down for you when you get your diet under control. I was where you are not so long ago, and once I got my diet under control, I began to feel human again.
I read Tex's book and almost all of the archives on here. Pour yourself a glass of water, get in a comfy chair, and read and then read some more. It'll come together for you.
Merry Christmas!
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Thank you for the warm welcomes!
Thank you for the warm welcomes and good wishes!
I believe that a number of things contributed to me becoming so ill. I was hit by a truck, as a pedestrian, in 2004. My back was fractured and the disk at L5-S1 completely ruptured. The disks in my neck were herniated from C-7 to C-4. The workman's comp doctor said I had "bruised muscles" and had me doing physical therapy (ye gods). My own doctor intervened or I may have been permanently crippled by that nonsense!! Unfortunately, I moved to another state in 2007, and had to deal with new doctors. That's when all the trouble really started. I found out, during the intake exam for my new job, that my thyroid wasn't working. Later that same year, I got that salmonella infection, from tomatoes. I was horribly sick, for almost three weeks, and haven't been well since. I also had excruciating neck pain for which I sought treatment. For years I had greedy, bad doctors performing expensive, unnecessary procedures on my neck, to "relieve" the pain, when what I really needed was surgery. Since I was ignorant about my disease at that time, and they wouldn't prescribe anything for the pain, I ate at least 12-16 ibuprofen gel caps per day! This continued, during the three years I believed I had IBS, so I was throwing gas on the fire without even knowing it. All this time I was getting sicker and sicker but nobody would help me!
My neck continued to get worse, and I finally lost the use of my right hand, before anyone took me seriously! I went to the emergency room and ended up having emergency surgery two days later. I had to have bone grafts, and a fusion, from C7 - C4. This was in April of 2012. Unfortunately, there was horrible, permanent nerve damage, and I was still in constant, agonizing pain. I threw in the towel and started seeing a pain management doctor two months after my surgery. He put me on opioid pain medication, and that has really masked my colitis symptoms, for the last three years. This wasn't a good thing at all. Between ignorance about what I should be eating, and having my symptoms greatly diminished, I think I did a LOT more damage to my gut. I'm now getting really sick again in spite of the Asacol AND the opioid meds. That's bad and I just KNEW I had to do something. That's why I started looking and finally found this site...thank God!!
I'm also dealing with a lot of anger and bitterness at the medical community and the insurance industry. I need to get over that because it won't change anything and I don't need the added stress. I am definitely a driven, high standard, overachiever and have chosen a profession, which by it's very nature, is extremely stressful. I now know, thanks to this site, that none of this is helping my disease so I need to take immediate action!
I intend to have the fecal cultures done, even if I have to pay for it myself, to take the guesswork out of what in my diet is making me sick. I feel I've lost a lot of time, and need to start on the path to wellness, as soon as possible. I will aslo read Tex's book, and spend time on this site reading the advice as often as possible.
I was losing hope of ever having a "normal" life again. Now I have hope, and a place to go for help, and I can't tell you how good that feels!!
Thanks again,
I believe that a number of things contributed to me becoming so ill. I was hit by a truck, as a pedestrian, in 2004. My back was fractured and the disk at L5-S1 completely ruptured. The disks in my neck were herniated from C-7 to C-4. The workman's comp doctor said I had "bruised muscles" and had me doing physical therapy (ye gods). My own doctor intervened or I may have been permanently crippled by that nonsense!! Unfortunately, I moved to another state in 2007, and had to deal with new doctors. That's when all the trouble really started. I found out, during the intake exam for my new job, that my thyroid wasn't working. Later that same year, I got that salmonella infection, from tomatoes. I was horribly sick, for almost three weeks, and haven't been well since. I also had excruciating neck pain for which I sought treatment. For years I had greedy, bad doctors performing expensive, unnecessary procedures on my neck, to "relieve" the pain, when what I really needed was surgery. Since I was ignorant about my disease at that time, and they wouldn't prescribe anything for the pain, I ate at least 12-16 ibuprofen gel caps per day! This continued, during the three years I believed I had IBS, so I was throwing gas on the fire without even knowing it. All this time I was getting sicker and sicker but nobody would help me!
My neck continued to get worse, and I finally lost the use of my right hand, before anyone took me seriously! I went to the emergency room and ended up having emergency surgery two days later. I had to have bone grafts, and a fusion, from C7 - C4. This was in April of 2012. Unfortunately, there was horrible, permanent nerve damage, and I was still in constant, agonizing pain. I threw in the towel and started seeing a pain management doctor two months after my surgery. He put me on opioid pain medication, and that has really masked my colitis symptoms, for the last three years. This wasn't a good thing at all. Between ignorance about what I should be eating, and having my symptoms greatly diminished, I think I did a LOT more damage to my gut. I'm now getting really sick again in spite of the Asacol AND the opioid meds. That's bad and I just KNEW I had to do something. That's why I started looking and finally found this site...thank God!!
I'm also dealing with a lot of anger and bitterness at the medical community and the insurance industry. I need to get over that because it won't change anything and I don't need the added stress. I am definitely a driven, high standard, overachiever and have chosen a profession, which by it's very nature, is extremely stressful. I now know, thanks to this site, that none of this is helping my disease so I need to take immediate action!
I intend to have the fecal cultures done, even if I have to pay for it myself, to take the guesswork out of what in my diet is making me sick. I feel I've lost a lot of time, and need to start on the path to wellness, as soon as possible. I will aslo read Tex's book, and spend time on this site reading the advice as often as possible.
I was losing hope of ever having a "normal" life again. Now I have hope, and a place to go for help, and I can't tell you how good that feels!!
Thanks again,
Kim "The Outhouse Polka Queen"
Raynaud's Disease, 1982
Thyroid Disease, 2007
Collagenous Colitis, 2010
Raynaud's Disease, 1982
Thyroid Disease, 2007
Collagenous Colitis, 2010
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Babs
what type of messages are you searching for
there are two avenues;
- use the search function above to search for key words
- click on the users name and within their profile is some post info - and you can click 'Find all posts by 'username'
what type of messages are you searching for
there are two avenues;
- use the search function above to search for key words
- click on the users name and within their profile is some post info - and you can click 'Find all posts by 'username'
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Babs,
The search feature that Gabes mentioned is the red link that says "Search The Archives of This Discussion Board", below the Google Search option.
Tex
The search feature that Gabes mentioned is the red link that says "Search The Archives of This Discussion Board", below the Google Search option.
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.
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Matthew_84x
- Posts: 2
- Joined: Sun Jan 03, 2016 2:17 pm
Hi Everyone,
I am so grateful to have found this forum.
I am a 31 year old male recently diagnosed with MC. I believe my MC was triggered in early July 2015 via food poisoning, there was no issues before I had that or I cannot think of anything else. All symptoms came after a fever and night sweats. (must have eaten something bad over Fourth of July weekend)
Does anyone have a similar story??
Just recently obtained health insurance and went for a colonoscopy at Mass General Hospital.
Dr. prescribed the steroid treatment. Three month cycle including weening off. (the name alludes me at the moment) but I feel I should hold off and try modifying my diet first.
Any thoughts? I am not a fan of medications in general so I can hopefully avoid that sort of treatment.
Looking forward to taking control of my life again and putting weight back on.
Cheers to everyone in 2016.
Matthew
I am so grateful to have found this forum.
I am a 31 year old male recently diagnosed with MC. I believe my MC was triggered in early July 2015 via food poisoning, there was no issues before I had that or I cannot think of anything else. All symptoms came after a fever and night sweats. (must have eaten something bad over Fourth of July weekend)
Does anyone have a similar story??
Just recently obtained health insurance and went for a colonoscopy at Mass General Hospital.
Dr. prescribed the steroid treatment. Three month cycle including weening off. (the name alludes me at the moment) but I feel I should hold off and try modifying my diet first.
Any thoughts? I am not a fan of medications in general so I can hopefully avoid that sort of treatment.
Looking forward to taking control of my life again and putting weight back on.
Cheers to everyone in 2016.
Matthew
Hi Matthew,
Welcome to our Internet family. It's certainly possible that food poisoning may have caused your MC, but as Terry mentioned, I had what I thought were recurring episodes of the flu for a year or so, and then I decided that it must be food poisoning, because I was eating at fast food places while out making deliveries. But then one day the diarrhea started, and wouldn't stop, so I finally had to face the reality that something else was going on.
It is certainly possible to control your symptoms by making diet changes, and many of us here have done that and successfully maintained remission for many years. The problem with the treatment that most GI specialists prescribe (budesonide), is that when the treatment regimen is over, the symptoms will almost always return. IOW, the treatment must be continued forever, or a relapse will usually occur. And some patients are unable to reach remission even while taking budesonide, unless they also change their diet to at least eliminate the main foods that are causing the production of antibodies that provoke the inflammation that causes MC.
I can certainly understand how at your relatively young age, the prospect of taking a corticosteroid for the rest of your life, would not be appealing. In addition to the effect of the ridiculously over-priced drugs on your bank account, the long-term risk of taking a corticosteroid for many decades does not bode well for long-term health. As one who has never taken a prescription medication to treat MC, I completely agree with you — diet changes are the way to go to control MC and help avoid additional AI diseases that often develop if the inflammation is not stopped.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our Internet family. It's certainly possible that food poisoning may have caused your MC, but as Terry mentioned, I had what I thought were recurring episodes of the flu for a year or so, and then I decided that it must be food poisoning, because I was eating at fast food places while out making deliveries. But then one day the diarrhea started, and wouldn't stop, so I finally had to face the reality that something else was going on.
It is certainly possible to control your symptoms by making diet changes, and many of us here have done that and successfully maintained remission for many years. The problem with the treatment that most GI specialists prescribe (budesonide), is that when the treatment regimen is over, the symptoms will almost always return. IOW, the treatment must be continued forever, or a relapse will usually occur. And some patients are unable to reach remission even while taking budesonide, unless they also change their diet to at least eliminate the main foods that are causing the production of antibodies that provoke the inflammation that causes MC.
I can certainly understand how at your relatively young age, the prospect of taking a corticosteroid for the rest of your life, would not be appealing. In addition to the effect of the ridiculously over-priced drugs on your bank account, the long-term risk of taking a corticosteroid for many decades does not bode well for long-term health. As one who has never taken a prescription medication to treat MC, I completely agree with you — diet changes are the way to go to control MC and help avoid additional AI diseases that often develop if the inflammation is not stopped.
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.
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Matthew_84x
- Posts: 2
- Joined: Sun Jan 03, 2016 2:17 pm
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michelleneujahr
- Posts: 11
- Joined: Mon Jan 18, 2016 7:21 pm
Matthew,
I took Budesonide when I was first diagnosed (back the end of June) and also started my rigid diet right away. I believe the Budesonide helped jump start me on the road to feeling better. I am now weaning myself off of it (I take 1 every 3 days) and am still doing ok. The diet is the key though.
Welcome to our Internet family and be sure to ask lots of questions. I read everything on here and Tex's book also (up in the right hand corner). It's a great resource for all of us.
I took Budesonide when I was first diagnosed (back the end of June) and also started my rigid diet right away. I believe the Budesonide helped jump start me on the road to feeling better. I am now weaning myself off of it (I take 1 every 3 days) and am still doing ok. The diet is the key though.
Welcome to our Internet family and be sure to ask lots of questions. I read everything on here and Tex's book also (up in the right hand corner). It's a great resource for all of us.
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
New to Forum
I was diagnosed with MC in 2008. Confirmed twice by biopsy. The two different GI's that I saw were less than helpful. I began Entocort in 2008 and was able to come off for a short period of time in 2011 then back on again. Not once did they ever mention diet! Over the past year, I have done my own research and have gone gluten free with some success but it's obvious to me that there are other foods involved. And so I begin the journey of eliminating foods, trying new things and most likely failing because it seems to be a very difficult road. What works for one week may not continue to work.
I'm so very thankful that I have a family who is so supportive and understanding of my situation. I have recently taken myself off of the Entocort due to my new insurance wanting me to $2800 for a 3 month supply! Who can afford that??? Quite honestly, I don't think I'm any worse off of it. I have begun Caltrate with D3 and Magnesium. But no real changes yet. I enjoyed reading through the posts and getting ideas. I'm glad I found you!!
Laura
I'm so very thankful that I have a family who is so supportive and understanding of my situation. I have recently taken myself off of the Entocort due to my new insurance wanting me to $2800 for a 3 month supply! Who can afford that??? Quite honestly, I don't think I'm any worse off of it. I have begun Caltrate with D3 and Magnesium. But no real changes yet. I enjoyed reading through the posts and getting ideas. I'm glad I found you!!
Laura
Laura Rawlings