Greetings, All. So nice to know I'm in a place where people will understand me. Just wanted to introduce myself and tell a little of my story in hopes that someone here might help me figure this thing out!
I have had diarrhea since the age of 19 (after I was put on birth control for cycle issues -- I personally think this is my trigger.). I'm now 41. Over the years and a couple of sigmoidoscopies, I've been told I have irritable bowel...spastic colon...the works. I've taken Bentyl and some sub-lingual med -- both did nothing. I've consumed Pepto and Immodium -- both stop my D for several days, but in exchange I'm constipated and bloated only to find relief when the D starts again. Frustration lead me back to a GI in 2007 for a colonoscopy/ endoscopy. I went to the doctor because I had hoped the endoscopy would answer whether or not I am a celiac...I am not. But finally I had an answer for the cause of the D: Collagenous Colitis. The kindly Dr. put me on Lialda which only did the same thing Pepto and Immodium did. So, I quit.
I'm on no meds and haven't been. I have several bouts of D a day, but nothing that cripples my life...guess I've learned to cope with it. For the last 18 days I have done a healthy detox in hopes of answering the food intolerance possibility. No change except for I don't feel like I have to hurry to the bathroom. I've also, today, begun taking Boswelia Serrata (my desperate attempt to find an herbal alternative to the steroids I know are probably in my future). It gets 6 weeks before I ask for the meds.
Interestingly, I have three strong data points in my life where I was "normal" for a month: each time about 2 months after a pregnancy. I wish I knew what was going on hormonally for me at that time. My husband thinks if we can answer that, we can answer the problem. I'm doubtful, but willing to be bled to see what my hormone levels are. I come from a family fraught with autoimmune diseases: thyroid/RA/diabetes/celiac. I've come to accept this is my version, but gosh if I'm not tired of it after 20 years. So, that's me in a nutshell. Thanks for listening, and I look forward to gleaning wisdom from those of you who have sought healing much sooner than I.
All the best.
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LHurlburt,
I doubt that that's you "in a nutshell", but welcome here, we all started here with one type of introduction or another. I can only assume you are here because you were searching the Internet for CC or Microscopic Colitis.
I could write about my personal experience, but you are here now...and you will not find a better group of people to help you sort through a lifetime of crazy symptoms that your doctors "have no idea" about.
Do some searches here about things you have experienced, don't ever be afraid of asking questions. Nobody here is making a living out of being a part of this Forum, we have all been where you are. We care.
Connie
I doubt that that's you "in a nutshell", but welcome here, we all started here with one type of introduction or another. I can only assume you are here because you were searching the Internet for CC or Microscopic Colitis.
I could write about my personal experience, but you are here now...and you will not find a better group of people to help you sort through a lifetime of crazy symptoms that your doctors "have no idea" about.
Do some searches here about things you have experienced, don't ever be afraid of asking questions. Nobody here is making a living out of being a part of this Forum, we have all been where you are. We care.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Hello there Lhurlburt and welcome to our little part of the Internet!!!!!
I too suffered for a very long time before I finally got a diagnosis (almost 20 years). As you will find out, we all have different approaches to treating this disease - what works for some might not work for others. But with the advice of some of the finest people I never met
, their guidance and suggestions have been so beneficial for my recovery. I finally received my diagnosis in April of last year. At first I felt a sense of relief to have finally been given a diagnosis but that certainly didn't last long once I started educating myself. I decided to try healing without Entocort. I had a very bad reaction to Prednisone so wanted to give diet a chance before having to resort to meds. Had it not been for my potty people family I would have given up a long time ago but for the first time in well over a year (probably a year and a half) I have seen Norman twice this week 
So if you decide not to do the med route, have patience.
Interestingly, my MC showed up when I was pregnant with my second baby. I don't know if that had anything to do with it but hmmmmmm ......
Once again, welcome to the board. Friends here are very warm and welcoming. Sad you had to look for us but glad you found us.
Linda
I too suffered for a very long time before I finally got a diagnosis (almost 20 years). As you will find out, we all have different approaches to treating this disease - what works for some might not work for others. But with the advice of some of the finest people I never met
, their guidance and suggestions have been so beneficial for my recovery. I finally received my diagnosis in April of last year. At first I felt a sense of relief to have finally been given a diagnosis but that certainly didn't last long once I started educating myself. I decided to try healing without Entocort. I had a very bad reaction to Prednisone so wanted to give diet a chance before having to resort to meds. Had it not been for my potty people family I would have given up a long time ago but for the first time in well over a year (probably a year and a half) I have seen Norman twice this week So if you decide not to do the med route, have patience.Interestingly, my MC showed up when I was pregnant with my second baby. I don't know if that had anything to do with it but hmmmmmm ......
Once again, welcome to the board. Friends here are very warm and welcoming. Sad you had to look for us but glad you found us.
Linda
I also achieved Norman (which is what we here refer to as a normal bowel movement) w/o using drugs. I know you have to post a certain number of posts before you can do a "search" here, which is what is probably a security issue to prevent spammers from from taking over this website. So be patient, LHurlburt, and keep posting. We are here to help and we have lots of acronyms we use that you'll have to get used to, but we care about YOU here.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Hi L,
Welcome to our internet family. In hindsight, many of us can trace the origins of our problems back for decades before they finally became serious enough that we had to do something about them. My symptoms were somewhat like yours, (alternating D and C), but whenever I was in the D phase, I was always very, very sick, complete with nausea, migraines, severe joint and body aches and pains, etc.
Yes, hormones and hormone treatments can be a factor with MC. Not only can oral contraceptives trigger MC for some individuals, but even the transdermal patches cannot be tolerated by some. Due to the wide excursions of hormone levels during and following pregnancy, almost every woman who has MC sees a dramatic change during and following pregnancy. For some, the symptoms disappear, until lactation ceases, while others find that their symptoms become much worse. the odds are roughly 50-50, one way or the other, and no one has the foggiest idea why.
There is a good chance that you would probably be able to control your symptoms by diet alone, if you would rather avoid taking a corticosteroid. Actually, unless you are willing to take a maintenance dose of a corticosteroid indefinitely, your symptoms will almost certainly relapse when the drug treatment is terminated, anyway, so the diet is by far the safest, most reliable long-term treatment. Don't expect your gastroenterologist to believe that MC can be controlled by diet changes, though, because most of them still insist that diet has nothing to do with MC. That's like insisting that breathing polluted air has nothing to do with asthma, hay fever, emphysema, COPD, mesothelioma, etc.
Unless we also have fully-developed celiac disease, we always test negative to the classic celiac blood tests. However, most of us are just as sensitive to gluten as most celiacs, and most of us are also sensitive to all dairy products. About half of us are also sensitive to soy, and all legumes. Some of us also have various other food-sensitivities. This occurs because of the fact that when the genes that predispose to MC are triggered, the genes that predispose to gluten-sensitivity and certain other food-sensitivities are triggered at the same time.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. In hindsight, many of us can trace the origins of our problems back for decades before they finally became serious enough that we had to do something about them. My symptoms were somewhat like yours, (alternating D and C), but whenever I was in the D phase, I was always very, very sick, complete with nausea, migraines, severe joint and body aches and pains, etc.
Yes, hormones and hormone treatments can be a factor with MC. Not only can oral contraceptives trigger MC for some individuals, but even the transdermal patches cannot be tolerated by some. Due to the wide excursions of hormone levels during and following pregnancy, almost every woman who has MC sees a dramatic change during and following pregnancy. For some, the symptoms disappear, until lactation ceases, while others find that their symptoms become much worse. the odds are roughly 50-50, one way or the other, and no one has the foggiest idea why.
There is a good chance that you would probably be able to control your symptoms by diet alone, if you would rather avoid taking a corticosteroid. Actually, unless you are willing to take a maintenance dose of a corticosteroid indefinitely, your symptoms will almost certainly relapse when the drug treatment is terminated, anyway, so the diet is by far the safest, most reliable long-term treatment. Don't expect your gastroenterologist to believe that MC can be controlled by diet changes, though, because most of them still insist that diet has nothing to do with MC. That's like insisting that breathing polluted air has nothing to do with asthma, hay fever, emphysema, COPD, mesothelioma, etc.
Unless we also have fully-developed celiac disease, we always test negative to the classic celiac blood tests. However, most of us are just as sensitive to gluten as most celiacs, and most of us are also sensitive to all dairy products. About half of us are also sensitive to soy, and all legumes. Some of us also have various other food-sensitivities. This occurs because of the fact that when the genes that predispose to MC are triggered, the genes that predispose to gluten-sensitivity and certain other food-sensitivities are triggered at the same time.
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.