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I'm in the process of trying to figure out what is wrong with me. About a year and a half ago I was diagnosed with IBS and at the time my symptoms were definitely annoying, but I could tolerate them.
For the past month, my symptoms seem to have gotten worse. In the past month or so I have experienced 3-4 days of watery D..I would say I went to the bathroom no more than 5 times on any of those days (2 of those nights I had to get up once to go to the bathroom in the middle of the night.) I have dealt with plenty of loose BMs since my diagnosis of IBS, but not really what I would describe as watery..and I don't remember ever having issues in the middle of the night. I have been able to temporarily resolve these issues with imodium, but it seems that a couple of weeks later it starts again. Since my increase of symptoms have only been once or twice every week or two, it's quite possible that my IBS could just be flaring, since apparently that's common and just the nature of the condition. I am trying not to jump to conclusions, but I would like more info.
I know that every person is different, and I am not asking to be diagnosed via the internet. I was just wondering if you could tell me about your own personal stories. I'm interested in hearing the progression of your MC, any misdiagnosis, and mostly your personal symptoms. As well as how you went about getting diagnosed, and what treatments you've tried/or are on and how they've worked for you.
Thaaaaanks! :) Sorry I'm so long winded. This board is full of helpful people though.
Can I hear your MC story?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
That's one of the purposes of the "Member's Medical Profiles" forum, and the "Journals" forum:
Here are the profiles of some members:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=8
and here are some Journals:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=17
You might be interested in Gloria's experiences, also:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6730
You should find a lot of insight there. If you still have more questions on the topic, after reading that info, please don't hesitate to ask.
Your flares seem to be very similar to the way that mine behaved, back when I was still reacting. Many of us have continuous symptoms, but mine came in cycles, and I would have good periods, in between bad ones, on a somewhat regular cycle.
Tex
Here are the profiles of some members:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=8
and here are some Journals:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=17
You might be interested in Gloria's experiences, also:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6730
You should find a lot of insight there. If you still have more questions on the topic, after reading that info, please don't hesitate to ask.
Your flares seem to be very similar to the way that mine behaved, back when I was still reacting. Many of us have continuous symptoms, but mine came in cycles, and I would have good periods, in between bad ones, on a somewhat regular cycle.
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.
I thought my continuous diarrea started suddenly and just never stopped but looking back there some issues with constipation and then changes in bowel movements that I didn't think were much to worry about.
Everyone seems to have their own set of symptoms. The only way to get diagnosed as you probably already know, is to have a colonoscopy with biopsies. The symptoms I initally started with were very much like Celiac symptoms so when the GP referred me to a GI doc, I asked to be tested for Celiac. Even though the test was negative I found this website and eventually became convinced I needed the Gluten free diet. I have CC. I am also on medication. The medication can be a trial and error experience depending on your tolerance level. Good luck with your journey to find some solid answers. This website is invaluable and I'm glad you found it.
Connie
Hello MAC, doe you mean with IBS Irritable bowel disease of inflammatory bowel disease? I assume irritable. Never mind, you were asking for other people's experiences, here is mine.
My problems on the short term, started in may this year. From one to the other moment, Diarrhea. A couple of times a day from 2 till sometimes 6 or in real bad days 8 or 10 BM's. Normally not during night, only occasionally and luckily enough I had still some control about my BM's. Later, when I finally figured what was wrong with me, I found my version of MC was still quite a mild one. But like I said It started from one day to other. First I thought a stomach flu, but it stayed. I went after three weeks to my general practitioner. After some blood and stool testing I finally saw a specialist, a GI doc. I had a colonoscopy and endoscopy (to be tested for celiac disease). By this colonoscopy I was diagnosed with CC in the end of September. So between the moment main complaints started and the diagnoses are four months. In my experience it was forever. But after finding this group, I may consider myself a lucky one, to get so quick an accurate diagnoses. The problems, diarrhea diarrhea and diarrhea were the same from day one it started in may, it did not get worse but also not any better, until I started with treatment in September this year.
I started with the meds in the end of September. I am on one pill entocort a day (I use budenofalk) which work very well for my D. But one problem solved another one showed up. Pain, cramping abdominal pains. This was causes by the food I was eating. Mostly corn. I did the enterolab testing and was found to be intolerant for gluten, dairy, soy, eggs and yeast. I avoid all these products now and also use no corn and avoid some fruits and vegetables (mostly by trail and error). I am on my diet for a month now. This really makes a big difference. The pain, cramping is gone. My colon is much calmer. I am less tired and the fog in my head is disappearing. In my case it is not like the moment I started it was getting better. It goes more gradual. After two weeks looking back I see a difference and now after a month I see another difference. I am not there yet but one the right track.
Before my misery started in may this year. I had bowel problems for about 8 years. Also started from one day to another. Things like gassy, bloating (the four months pregnant tummy), restless bowel. Things got worse over the years. I could not wear trousers of skirts anymore, I could not stand a belt or anything else tight on my tummy, always with the button or zipper (half) open. I got food problems, paprika (peppers??) and mushrooms were giving me problems (cramping, pain and gas). Other problems foods were unions and corn. Two years ago I quitted to eat lactose. This was a great relieve and it got for the gas much better. Another problem stayed. Especially during night I couldn't sleep sometimes of something I called itching bowels. It is not painful or cramping but a strange unpleasant feeling inside your colon, like the inside of the colon is too sensitive for the food.
I thought is was all due to stress, being depressed, working to hard, wanting to much, emotions etc. Irritable bowel disease. I found myself more and more becoming a nag with my list of problems foods and complaints list was becoming longer and longer.
The only difference now is that I know, I am not a nag or greasy or stressed out of too emotional. There is actually something wrong with me and I am quite sure, that the disease I have now started 8 years ago. Probably due to my gluten sensitivity and other related food intolerances. It just got worse and worse over the years.
I hope you will find a solution for your bowel problems and this message board will help you with it. There are a lot of great people here, who know a lot about bowel diseases in general and a lot of MC. Here you find the real experts. The best and only way that get the diagnoses MC is through colonoscopy. My advice would be find a good GI doc and ask for a colonoscopy. For medication entocort (or budenofalk more or less same medication with different names same active component) seems to be the most common and best working medicine for MC. But is suppresses the symptoms it does not cure. As I said I am on one pill a day, I started with two but had severe site effects (headache, dizzy, feeling strange). 2 pills is the 'normal' dose, 1 pill is normally the maintenance dose.
What made the real difference is my enterolab testing for food intolerances and the diet. That I consider as my life saver and changer and making this disease tolerable. My preference was, first to get tested and than start the diet. Just trying some things out and having no idea where to start and where to end, it is just guessing. I prefer just to know. Some food gives you immediately problems that is easy. Like in my case the mushrooms, unions, corn, paprika. But with the soy, dairy, gluten that is so much more subtle and not easy to see feel the difference.
Again I really hope you will find your answers to your bowel problems and this group will help you with it.
My problems on the short term, started in may this year. From one to the other moment, Diarrhea. A couple of times a day from 2 till sometimes 6 or in real bad days 8 or 10 BM's. Normally not during night, only occasionally and luckily enough I had still some control about my BM's. Later, when I finally figured what was wrong with me, I found my version of MC was still quite a mild one. But like I said It started from one day to other. First I thought a stomach flu, but it stayed. I went after three weeks to my general practitioner. After some blood and stool testing I finally saw a specialist, a GI doc. I had a colonoscopy and endoscopy (to be tested for celiac disease). By this colonoscopy I was diagnosed with CC in the end of September. So between the moment main complaints started and the diagnoses are four months. In my experience it was forever. But after finding this group, I may consider myself a lucky one, to get so quick an accurate diagnoses. The problems, diarrhea diarrhea and diarrhea were the same from day one it started in may, it did not get worse but also not any better, until I started with treatment in September this year.
I started with the meds in the end of September. I am on one pill entocort a day (I use budenofalk) which work very well for my D. But one problem solved another one showed up. Pain, cramping abdominal pains. This was causes by the food I was eating. Mostly corn. I did the enterolab testing and was found to be intolerant for gluten, dairy, soy, eggs and yeast. I avoid all these products now and also use no corn and avoid some fruits and vegetables (mostly by trail and error). I am on my diet for a month now. This really makes a big difference. The pain, cramping is gone. My colon is much calmer. I am less tired and the fog in my head is disappearing. In my case it is not like the moment I started it was getting better. It goes more gradual. After two weeks looking back I see a difference and now after a month I see another difference. I am not there yet but one the right track.
Before my misery started in may this year. I had bowel problems for about 8 years. Also started from one day to another. Things like gassy, bloating (the four months pregnant tummy), restless bowel. Things got worse over the years. I could not wear trousers of skirts anymore, I could not stand a belt or anything else tight on my tummy, always with the button or zipper (half) open. I got food problems, paprika (peppers??) and mushrooms were giving me problems (cramping, pain and gas). Other problems foods were unions and corn. Two years ago I quitted to eat lactose. This was a great relieve and it got for the gas much better. Another problem stayed. Especially during night I couldn't sleep sometimes of something I called itching bowels. It is not painful or cramping but a strange unpleasant feeling inside your colon, like the inside of the colon is too sensitive for the food.
I thought is was all due to stress, being depressed, working to hard, wanting to much, emotions etc. Irritable bowel disease. I found myself more and more becoming a nag with my list of problems foods and complaints list was becoming longer and longer.
The only difference now is that I know, I am not a nag or greasy or stressed out of too emotional. There is actually something wrong with me and I am quite sure, that the disease I have now started 8 years ago. Probably due to my gluten sensitivity and other related food intolerances. It just got worse and worse over the years.
I hope you will find a solution for your bowel problems and this message board will help you with it. There are a lot of great people here, who know a lot about bowel diseases in general and a lot of MC. Here you find the real experts. The best and only way that get the diagnoses MC is through colonoscopy. My advice would be find a good GI doc and ask for a colonoscopy. For medication entocort (or budenofalk more or less same medication with different names same active component) seems to be the most common and best working medicine for MC. But is suppresses the symptoms it does not cure. As I said I am on one pill a day, I started with two but had severe site effects (headache, dizzy, feeling strange). 2 pills is the 'normal' dose, 1 pill is normally the maintenance dose.
What made the real difference is my enterolab testing for food intolerances and the diet. That I consider as my life saver and changer and making this disease tolerable. My preference was, first to get tested and than start the diet. Just trying some things out and having no idea where to start and where to end, it is just guessing. I prefer just to know. Some food gives you immediately problems that is easy. Like in my case the mushrooms, unions, corn, paprika. But with the soy, dairy, gluten that is so much more subtle and not easy to see feel the difference.
Again I really hope you will find your answers to your bowel problems and this group will help you with it.