Brand new to this
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Brand new to this
I am brand new to all of this. Forums, blogs and MC. So bear with me. 3 years ago I was told I had IBS. Then this past Feb. it all changed literally overnight. (I hope I can be blunt) I had watery diarrhea and could not leave the house for a month. I went to my GI dr. He did a biopsy along with the colonoscopy and MC was present. He did not do a biopsy along with the colonoscopy 3 years ago because I was only only 39. So, I guess I fell into the IBS category because they couldn't find anything wrong. After this last procedure I went on Imodium and pepto. It worked ok, except for the severe cramping 1-2 times a day. Now I am on Lialda 2 pills a day. I don't have cramping anymore but I still have urgency and if I am not close to a bathroom its going to be to late. I am very dizzy all the time and find it difficult to get out of the house. Is this normal? Can I ever get my life back or is this it? Not trying to sound negative. I am just frustrated and at a point where sometimes I feel sorry for myself. My Dr. says that the dizziness and tiredness is not normal so he is referring me to another doctor. I am hoping someone can give me some insight.
Hi Friscomom and welcome. Feel free to be as blunt as you want here, we understand. We have found that most doctors don't understand this disease. Many of us have found relief with dietary changes...most all have eliminated gluten, many have eliminated dairy and probably half have also eliminated soy. They seem to be our biggest offenders. Most doctors just haven't figured out that connection. If that doesn't work some have found their best drug to be entocort which is used to slow down symptoms while your gut has time to heal. I know that tiredness (with me it was total exhaustion) is a common symptom. I didn't initially have dizziness but did develop vertigo a few months back and still have issues from time to time. I'm not sure that is related to the MC but the tiredness definitely is. Read all you can on this site. You'll learn more here than from any other source. You can get your life back. Most of us that have stuck to the program have! If you are able, there is a lab test through Enterolab that can determine what your intolerances are. Most insurances don't cover it but it is definitely worth the cost. Deb
Hi Friscomom,
Welcome to our internet family. Dizziness is not particularly common with this disease, but I had frequent spells of it back when I was reacting. Some days it was so bad that I couldn't get out of bed for a few hours or so. Imodium makes me dizzy, but that's not a common side effect -- it's somewhat uncommon for someone to have a problem with Imodium. It's also possible for Lialda or any of the other drugs prescribed for MC to cause dizziness, and that's a somewhat common side effect for those drugs.
As Deb pointed out, many doctors know relatively little about MC and even less about treating it. You probably had it several years ago, but your doctor failed to look for it (biopsies are essential). Our youngest member was two and a half years old when she was diagnosed. She's several years older now, and doing fine, on a diet that avoids her food sensitivities. There's no cure for MC, but the disease can definitely be controlled, and you can indeed get your life back if you are willing to do what needs to be done to stop the inflammation (IOW, cut those foods out of your diet, 100%).
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Dizziness is not particularly common with this disease, but I had frequent spells of it back when I was reacting. Some days it was so bad that I couldn't get out of bed for a few hours or so. Imodium makes me dizzy, but that's not a common side effect -- it's somewhat uncommon for someone to have a problem with Imodium. It's also possible for Lialda or any of the other drugs prescribed for MC to cause dizziness, and that's a somewhat common side effect for those drugs.
As Deb pointed out, many doctors know relatively little about MC and even less about treating it. You probably had it several years ago, but your doctor failed to look for it (biopsies are essential). Our youngest member was two and a half years old when she was diagnosed. She's several years older now, and doing fine, on a diet that avoids her food sensitivities. There's no cure for MC, but the disease can definitely be controlled, and you can indeed get your life back if you are willing to do what needs to be done to stop the inflammation (IOW, cut those foods out of your diet, 100%).
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 FM and 
Glad you found us! You already have great advice (discovering and eliminating food sensitivities) and Entocort if medication is needed. I wanted to comment on the dizziness. It could be due to dehydration and/or electrolyte imbalance because of all of the diarrhea (and the high summer temperatures make things worse). Check out the newbie info forums at the top of the home page. There is an article on this which has some good tips. Things will get better. But keep in mind that it will be up to you to design your own treatment plan - don't expect much help from the GI docs. They are useful for the diagnosis and for meds (particularly Entocort) but don't expect much more. They are clueless about the food sensitivity issues. Often, folks here find their PCPs to be much more open-minded and supportive. For some good basic info on MC, check out www.finerhealth.com - this is Dr. Fine's website (the doc whose food sensitivity stool tests many of us have benefitted from).
Looking forward to further chats. Meanwhile, feel free to rant and rave.
Hugs,
Polly
Glad you found us! You already have great advice (discovering and eliminating food sensitivities) and Entocort if medication is needed. I wanted to comment on the dizziness. It could be due to dehydration and/or electrolyte imbalance because of all of the diarrhea (and the high summer temperatures make things worse). Check out the newbie info forums at the top of the home page. There is an article on this which has some good tips. Things will get better. But keep in mind that it will be up to you to design your own treatment plan - don't expect much help from the GI docs. They are useful for the diagnosis and for meds (particularly Entocort) but don't expect much more. They are clueless about the food sensitivity issues. Often, folks here find their PCPs to be much more open-minded and supportive. For some good basic info on MC, check out www.finerhealth.com - this is Dr. Fine's website (the doc whose food sensitivity stool tests many of us have benefitted from).
Looking forward to further chats. Meanwhile, feel free to rant and rave.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Friscomom,
Well, this is NOT an excuse but -- the OLD rule of thumb -- has kind of been that Microscopic Colitis was a condition seen in Females over the age of 50. So in that Doc’s mind – you were probably not a candidate for MC. But ….. that was kind of “old school” thinking. Males also develop MC, although not nearly as frequently as females. And also, there are a small number of children that develop this condition. So it appears that this Doc (he/she) might benefit from some more current and relevant information on MC. Maybe you are his/her first, or only, MC patient?? If that’s true he/she could be “going to school” on your situation -- so to speak.
Many GI physicians do seem to be poorly informed about Microscopic colitis. Likely that’s because it is not considered to be a potentially life threatening condition -- while it’s cousins -- Crohns Disease and Ulcerative Colitis, are considered potentially life threatening conditions. Also, MC does not seem to be associated with an increased incidence of colon cancer, while those cousin diseases are. So it is kind of easy to see why this condition may not rise as high on the radar screens of some GI doc’s, especially those who also have no experience or any real idea regarding how to approach trying to treat this condition.
There is a person who reads and posts here – screen name – grannyh, also from Texas who found a Doc who 'knew something' about this condition, but Texas being a big place … maybe she is close to you, maybe not.
There is also a list of G.I. Doc’s from around the country that people with MC have found helpful. You might run through that list to see if there is anyone fairly close proximity to where you are.
Best of Luck,
Gayle
It sounds as though 3 years ago a colonoscopy was done, but there were no biopsies taken during that earlier procedure. Is that correct?3 years ago I was told I had IBS. Then this past Feb. it all changed literally overnight. (I hope I can be blunt) I had watery diarrhea and could not leave the house for a month.
Well, this is NOT an excuse but -- the OLD rule of thumb -- has kind of been that Microscopic Colitis was a condition seen in Females over the age of 50. So in that Doc’s mind – you were probably not a candidate for MC. But ….. that was kind of “old school” thinking. Males also develop MC, although not nearly as frequently as females. And also, there are a small number of children that develop this condition. So it appears that this Doc (he/she) might benefit from some more current and relevant information on MC. Maybe you are his/her first, or only, MC patient?? If that’s true he/she could be “going to school” on your situation -- so to speak.
Many GI physicians do seem to be poorly informed about Microscopic colitis. Likely that’s because it is not considered to be a potentially life threatening condition -- while it’s cousins -- Crohns Disease and Ulcerative Colitis, are considered potentially life threatening conditions. Also, MC does not seem to be associated with an increased incidence of colon cancer, while those cousin diseases are. So it is kind of easy to see why this condition may not rise as high on the radar screens of some GI doc’s, especially those who also have no experience or any real idea regarding how to approach trying to treat this condition.
Yes, good idea to see if there also might be something else going on. But, it is also possible that you may be a patient that develops some neuro problems (i.e. dizziness) because of the Lialda. That is not a common side effect – but also is not unheard of with some of the ASA’s (i.e. the Mesalamine based medications) (i.e. the Lialda). There are other medications to try.My Dr. says that the dizziness and tiredness is not normal so he is referring me to another doctor.
There is a person who reads and posts here – screen name – grannyh, also from Texas who found a Doc who 'knew something' about this condition, but Texas being a big place … maybe she is close to you, maybe not.
There is also a list of G.I. Doc’s from around the country that people with MC have found helpful. You might run through that list to see if there is anyone fairly close proximity to where you are.Best of Luck,
Gayle
Welcome Friscomom. We all have been where you are. Only six months ago, I was new to this forum. Read as much as you can on it- especially from new people just like you. When I first read about the food intolerances, I didn't want to believe that was my problem BUT I did want to feel better, so I first cut out all dairy because I knew it was giving me problems. Then I figured out that my big salads were bad too. That's when I decided to get serious about this food thing. I also got a prescription for Entocort ( budesonide). This drug worked wonders for me! I went from WD ( watery D) 6 times or more a day down to twice a day in about a weeks time!
The thing about this drug is that if you don't change your diet, when you taper off of it, the symptoms will come back. Next, I got rid of all gluten and later I found that soy was giving me problems too. Check out Enterolab's web site. If you can afford to do the testing, it will make the food thing much easier. Because I am IgA deficient, the test doesn't wok for me, so I have to do the elimination diet the old fashioned way. It takes time and patience, BUT THIS CAN GET BETTER!
I started with three pills a day and am down to one pill every three days and I only go to the bathroom once in the morning. It's not always solid, but I don't even care. i have my life back!
It takes a while to get use to eating like this, but once you fill your house with all the things you can eat, it gets easier. For now, you really should stop eating high fiber foods (raw fruits and veggies, beans, popcorn....etc) and start thinking about taking out Gluten, dairy, and soy. These are the foods that cause inflammation. Once you start feeling better, you can try to add the other foods back in.
Ask as many questions as you want. We are here for you.
Leah
The thing about this drug is that if you don't change your diet, when you taper off of it, the symptoms will come back. Next, I got rid of all gluten and later I found that soy was giving me problems too. Check out Enterolab's web site. If you can afford to do the testing, it will make the food thing much easier. Because I am IgA deficient, the test doesn't wok for me, so I have to do the elimination diet the old fashioned way. It takes time and patience, BUT THIS CAN GET BETTER!
I started with three pills a day and am down to one pill every three days and I only go to the bathroom once in the morning. It's not always solid, but I don't even care. i have my life back!
It takes a while to get use to eating like this, but once you fill your house with all the things you can eat, it gets easier. For now, you really should stop eating high fiber foods (raw fruits and veggies, beans, popcorn....etc) and start thinking about taking out Gluten, dairy, and soy. These are the foods that cause inflammation. Once you start feeling better, you can try to add the other foods back in.
Ask as many questions as you want. We are here for you.
Leah
Welcome!
I suffer from occasional flares of dizziness, especially when my MC is flaring. There are a few reasons in my case: I have low blood pressure (avg is 90/60), which is made worse by frequent D because I can't stay hydrated enough to raise my blood volume. My solution is plenty of sea salt on my food along with lots of fluids, bananas and other foods high in electrolytes. Coconut water like Vitacoco is supposed to be the best hydration drink, unlike Gatorade, who's sugar and artificial ingredients could make the D worse.
I wonder if you might be sensitive to salicylates found in the Lialda, Pepto, and many foods?
Have you been swimming this summer? Flying or changing altitude a lot lately? They can all affect the delicate balance in your inner ear and cause dizziness too.
I once had a brain MRI for severe vertigo that lasted 4 months. They didn't find anything, declared it "migraine associated" phenomena (even though I never get headaches), and gave me some useless migraine meds. I never took them, and the vertigo resolved on its own...
I hope you get relief soon!
I suffer from occasional flares of dizziness, especially when my MC is flaring. There are a few reasons in my case: I have low blood pressure (avg is 90/60), which is made worse by frequent D because I can't stay hydrated enough to raise my blood volume. My solution is plenty of sea salt on my food along with lots of fluids, bananas and other foods high in electrolytes. Coconut water like Vitacoco is supposed to be the best hydration drink, unlike Gatorade, who's sugar and artificial ingredients could make the D worse.
I wonder if you might be sensitive to salicylates found in the Lialda, Pepto, and many foods?
Have you been swimming this summer? Flying or changing altitude a lot lately? They can all affect the delicate balance in your inner ear and cause dizziness too.
I once had a brain MRI for severe vertigo that lasted 4 months. They didn't find anything, declared it "migraine associated" phenomena (even though I never get headaches), and gave me some useless migraine meds. I never took them, and the vertigo resolved on its own...
I hope you get relief soon!
Welcome Friscomom!
You have found the best site for support, suggestions and knowledge of MC.
I am pretty new to being diagnosed, I am currently lowering off of entocort, it is a life saver, but I have had some unwanted side effects.
Your diet, IMO is the most important single thing you can do . Take it from experts here, they know their stuff.
I used the site below for how to start out eating SCD diet. Specific Carbohydrate Diet.
http://pecanbread.com/f/how/stages.html
Also, very nourishing and healing, are the use of bone broths.
Good luck! Do not despair......you can get it under control!
You have found the best site for support, suggestions and knowledge of MC.
I am pretty new to being diagnosed, I am currently lowering off of entocort, it is a life saver, but I have had some unwanted side effects.
Your diet, IMO is the most important single thing you can do . Take it from experts here, they know their stuff.
I used the site below for how to start out eating SCD diet. Specific Carbohydrate Diet.
http://pecanbread.com/f/how/stages.html
Also, very nourishing and healing, are the use of bone broths.
Good luck! Do not despair......you can get it under control!
Diagnosed with Collagenous Colitis after a 2 month bout of Diarrhea. Confirmed after a biopsy during a colonoscopy.
Mickey
Mickey
Hi Frisco Mom,
Yes you can get your life back!
Yes I had dizziness as part of this disease. In fact the dizziness was worse than the WD. Is your dizziness intermittant or pretty much from dawn to dusk? Mine started out as intermittant for weeks than went from dawn to dusk for weeks. I was taking no drugs when I got the dizziness so I could not blame a drug interraction. As my gut healed the dizziness faded away.
I found the following helpful to reduce / eliminate dizziness.
1. If you have not already eliminated sugary drinks/foods eliminate the following: Gingerale, Coke, any sodas with sugars or artificial sweeteners, eliminate sugar from your coffee or tea, eliminate gatorade (use the sports hydration mix mentioned in previous post by Polly) gatorade or the gatorade knockoffs have too much sugar for us, eliminate apple sauce, fruit except for maybe bananas (you can add in fruits after you get better) basically eliminate anything with a lot of sugar or high fructose corn syrup. Coffee and tea are generally ok for us it is the sugar that is problematic.
2. If you have not gone GF suggest give GF an 8 week trial. After I had been GF for about 8 weeks my dizziness was mostly gone. After I had been GF for 8 weeks my dizziness went from non stop every day to kind of intermittant. At that point I was able to determine that I had some foods that were causing dizziness and was able to eliminate those foods.
I hope you have better luck with the docs than I did. My GI doc told me dizziness did not exist with this disease but he didn't seem concerned about me. Duh? Where else did it come from? I talked to 5 different docs in 4 different specialties re: the dizziness but seemed to get nowhere. PCP (who I like) implied that dizziness was not out of the ordinary for a 50 year old? Doc who made the most sense was my Gyno/physicians asst who thought I had malabsorption which was causing the dizziness.
You might want to get some blood work done but everytime mine was taken it always came out normal.
The main thing I found was diet is key and as my gut improved the dizziness subsided.
Best wishes, Brandy
Yes you can get your life back!
Yes I had dizziness as part of this disease. In fact the dizziness was worse than the WD. Is your dizziness intermittant or pretty much from dawn to dusk? Mine started out as intermittant for weeks than went from dawn to dusk for weeks. I was taking no drugs when I got the dizziness so I could not blame a drug interraction. As my gut healed the dizziness faded away.
I found the following helpful to reduce / eliminate dizziness.
1. If you have not already eliminated sugary drinks/foods eliminate the following: Gingerale, Coke, any sodas with sugars or artificial sweeteners, eliminate sugar from your coffee or tea, eliminate gatorade (use the sports hydration mix mentioned in previous post by Polly) gatorade or the gatorade knockoffs have too much sugar for us, eliminate apple sauce, fruit except for maybe bananas (you can add in fruits after you get better) basically eliminate anything with a lot of sugar or high fructose corn syrup. Coffee and tea are generally ok for us it is the sugar that is problematic.
2. If you have not gone GF suggest give GF an 8 week trial. After I had been GF for about 8 weeks my dizziness was mostly gone. After I had been GF for 8 weeks my dizziness went from non stop every day to kind of intermittant. At that point I was able to determine that I had some foods that were causing dizziness and was able to eliminate those foods.
I hope you have better luck with the docs than I did. My GI doc told me dizziness did not exist with this disease but he didn't seem concerned about me. Duh? Where else did it come from? I talked to 5 different docs in 4 different specialties re: the dizziness but seemed to get nowhere. PCP (who I like) implied that dizziness was not out of the ordinary for a 50 year old? Doc who made the most sense was my Gyno/physicians asst who thought I had malabsorption which was causing the dizziness.
You might want to get some blood work done but everytime mine was taken it always came out normal.
The main thing I found was diet is key and as my gut improved the dizziness subsided.
Best wishes, Brandy
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome Frisco Mom and you have found the best source of information and support on the web for your condition. Many of us have been here for a long time and have compiled some great information, tips, recipes and knowledge concerining this disease. Way more than most GI docs know or in some cases - care to know. Diet has been the source of healing for me and have given up on all meds. They just did not do it for me and the side effects - for me - were not acceptable.
Feel free to ask anything, be blunt and rant if you need too.
Maggie
Feel free to ask anything, be blunt and rant if you need too.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!