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Hi All. I just found this forum after searching for resources regarding CC. I was just diagnosed last Wednesday before Thanksgiving. Oddly enough I was kind of happy to have a name to put to the symptoms...I thought I was going crazy or something. Anyway, I do not see the doctor until December 14th, so I have no idea what plan of attack she is thinking of pursuing. Regardless, I have some questions that I thought I would throw out there. I am sure that these have all been answered somewhere in this forum, but I am somewhat overwhelmed with all of the information so I thought I would just ask and see what happens. For the record, I am 39, I have had D 15-20 times a day for 6 months, have a very tender abdomen, a little nausea and have lost little to no weight as a result of this problem. I haven't changed my diet at all, and I eat a pretty protein rich, lowfat diet currently. I want to wait to hear what the doctor says before I start researching food changes. As I stated above, it is quite overwhelming so far. My blood work came back showing a low Vitamin D level...that's it. So here goes:
1. What is up with the smell? OMG, it is out of control. I have never gone through so much air freshener in my entire life. Is this normal?
2. Does anyone experience restless leg syndrome and if so, is there a correlation between the CC and RLS?
3. In most people's experience, do physician's usually go straight for a medication or dietary changes?
4. Has anyone tried Lomotil? They gave me some just to get through the Thanksgiving weekend, but it really did nothing for me.
5. I was told to start taking Immodium, up to 8 tablets a day, prior to my appointment on the 14th. The first day I got up to 3 and had so much bloating and discomfort that I stopped. Again, normal...unique to each person...should I try again?
6. How is this monitored? Yearly colonoscopies, reports of less severe D?
This is all I can come up with right now...but thoughts race through my mind all day long. Getting ready for a meeting right now with people in the Philippines and my guts are gurgling so loudly that they are probably going to hear them all the way in the Cebu. So embarrassing.
Thank you in advance for any answers you have.
Newly Diagnosed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome Palmie,
I know exactly how you feel about having a name for your symptoms. I felt the same way.
Now lets start on those questions.
What most of us find is that we have food intolerances, and dealing with those gives us the best results. Those intolerances are usually to gluten, then dairy, about half of us have problems with soy and then some us have trouble with a wide range of other foods.
You might want to consider doing testing at Enterolab for your food intolerances. Their stool testing is far more sensitive than the blood tests the doctor will do for celiac disease. This can be faster and easier than trying to sort it out by elimination diets and trial and error.
Others will be along soon to also answer your questions.
I know exactly how you feel about having a name for your symptoms. I felt the same way.
Now lets start on those questions.
Absolutely normal. As is the volume and urgency. No fun at all but it happens to all of us.1. What is up with the smell? OMG, it is out of control. I have never gone through so much air freshener in my entire life. Is this normal?
It is not one I recall seeing mentioned very often, but gluten can result in neurological issues so removing it from the diet can have interesting results.2. Does anyone experience restless leg syndrome and if so, is there a correlation between the CC and RLS?
Doctors rarely suggest dietary changes. When they do, it is usually bad advice. Most of the time they do not support the dietary changes that we find helpful. Most of us end up realising our doctors are mistaken in this, and removing the foods we are intolerant to will improve normally improve out situation - though it may take time. Drs are normally much happier to give out drugs. If you can, the best drug is Entocort, but it is very expensive. Entocort does still tend to give best results used in conjunction with diet.3. In most people's experience, do physician's usually go straight for a medication or dietary changes?
Lots of people have tried Lomotil, and success varies. I'll leave to those who have tried it to comment.4. Has anyone tried Lomotil? They gave me some just to get through the Thanksgiving weekend, but it really did nothing for me.
Your choice. Using Immodium to cope with critical periods (like work meetings) can make life easier. However, it will not cause the D to stop long term except in the situation where people have already controlled the D through diet and are just using the Immodium to stop a flare.5. I was told to start taking Immodium, up to 8 tablets a day, prior to my appointment on the 14th. The first day I got up to 3 and had so much bloating and discomfort that I stopped. Again, normal...unique to each person...should I try again?
Regular colonoscopies are generally not much value - and a serious inconvenience. The doc generally just wants your reports of how often you are having D, bloating and pain.6. How is this monitored? Yearly colonoscopies, reports of less severe D?
What most of us find is that we have food intolerances, and dealing with those gives us the best results. Those intolerances are usually to gluten, then dairy, about half of us have problems with soy and then some us have trouble with a wide range of other foods.
You might want to consider doing testing at Enterolab for your food intolerances. Their stool testing is far more sensitive than the blood tests the doctor will do for celiac disease. This can be faster and easier than trying to sort it out by elimination diets and trial and error.
Others will be along soon to also answer your questions.
Welcome, Palmie.
I used some immodium on my own, before I was diagnosed. As Tex says, it can get you through some hours, but it doesn't help long-term. Entocort helped me right away, although some people have a longer wait before they see results. It is very expensive, though. Ordering from an online (foreign) pharmacy is less expensive. I took it for 3 months, relapsed, and since then have been trying to control the D with diet.
My GI doctor went straight to Entocort, but I did tell him all the things that I had tried previously.
Where in the Philippines are you going? I lived in Davao City for seven years, and my sons went to high school in Manila.
I used some immodium on my own, before I was diagnosed. As Tex says, it can get you through some hours, but it doesn't help long-term. Entocort helped me right away, although some people have a longer wait before they see results. It is very expensive, though. Ordering from an online (foreign) pharmacy is less expensive. I took it for 3 months, relapsed, and since then have been trying to control the D with diet.
My GI doctor went straight to Entocort, but I did tell him all the things that I had tried previously.
Where in the Philippines are you going? I lived in Davao City for seven years, and my sons went to high school in Manila.
Martha
CC
Your best course of action is to stop eating all breads, wheats etc and dairy for now, and get on Entocort EC. It has very little, if any, side effects. Imodium made me hurt worse, like my stomach was paralized. Nothing works for me but Entocort. I strongly encourage you to try it.
If the expense is too high, you can buy it in Canada for a quarter of the price.
Take Vit D, when you start feeling better, to get your level up because it is good for your colon.
Good luck,
karen
If the expense is too high, you can buy it in Canada for a quarter of the price.
Take Vit D, when you start feeling better, to get your level up because it is good for your colon.
Good luck,
karen
Hi Palmie, you've found the right place to get the right help. I'm someone who had severe Restless Leg Syndrome as a symptom before I was diagonosed. It was one of the first things that I went to the doctor with when they discovered I was hypothyroid and low vit. D. The mc diagnosis came months later. Almost all of us are sensitive to gluten and dairy. You can get tested through Enterolab and find out what your main sensitivities are. I found I am also sensitive to soy and eggs.
It is overwhelming at first to try to figure things out-there is a definite learning curve. With diet and medications, you will get better. Just remember it does take a lot of time and effort to figure things out, be patient. Tex will be along with the important information you need. JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Hi,
Welcome to our internet family. I agree with Lyn, of course, your symptoms are all very typical of this disease, including the loud gurgling noises.
The odor comes from mal-digestion, especially poor digestion of fats and gluten. It's typical of celiac disease, and the IBDs.
Not everyone with this disease has restless leg syndrome, but a certain percentage do, as JoAnn pointed out. It's usually a result of a vitamin or mineral deficiency, and in many cases, additional magnesium in the diet seems to help. We are often short on vitamin D, (as you have found), the "B" vitamins, (especially B-12 and folic acid), potassium and occasionally some of the other electrolytes, (due to dehydration), and some of us are are low enough on magnesium that it causes restless leg syndrome and/or leg/foot cramps. I've been in remission for over 6 years now, but I still get leg/foot cramps and occasional restless leg syndrome, if I don't take a supplement, or specially eat something to add magnesium to my diet. If I get lax, the symptoms will begin to show up in anywhere from a few days to a week. In my case, increasing my magnesium intake will almost immediately resolve the problem.
You have to be very careful with magnesium supplements, however, because magnesium is a laxative. Some use a skin spray, but that is not without it's problems, also.
As Lyn mentioned, most GI specialists will argue until they're blue in the face, that diet has nothing to do with MC, but we just ignore them and go merrily about our way, and do what we have to do, in order to get our life back.
As Martha mentioned, some members here have good luck with Immodium for temporary help when they need to get through a meeting, or a trip, for example, but if you use it, be sure to use the original forumlation, (Imodium AD), unless you're one of the few people with MC who are not sensitive to dairy products, because most of the other versions of Imodium contain lactose. I found that it makes me dizzy, so I couldn't use it.
Again, welcome aboard, and I hope the meeting went well.
Tex
Welcome to our internet family. I agree with Lyn, of course, your symptoms are all very typical of this disease, including the loud gurgling noises.
The odor comes from mal-digestion, especially poor digestion of fats and gluten. It's typical of celiac disease, and the IBDs.
Not everyone with this disease has restless leg syndrome, but a certain percentage do, as JoAnn pointed out. It's usually a result of a vitamin or mineral deficiency, and in many cases, additional magnesium in the diet seems to help. We are often short on vitamin D, (as you have found), the "B" vitamins, (especially B-12 and folic acid), potassium and occasionally some of the other electrolytes, (due to dehydration), and some of us are are low enough on magnesium that it causes restless leg syndrome and/or leg/foot cramps. I've been in remission for over 6 years now, but I still get leg/foot cramps and occasional restless leg syndrome, if I don't take a supplement, or specially eat something to add magnesium to my diet. If I get lax, the symptoms will begin to show up in anywhere from a few days to a week. In my case, increasing my magnesium intake will almost immediately resolve the problem.
You have to be very careful with magnesium supplements, however, because magnesium is a laxative. Some use a skin spray, but that is not without it's problems, also.
As Lyn mentioned, most GI specialists will argue until they're blue in the face, that diet has nothing to do with MC, but we just ignore them and go merrily about our way, and do what we have to do, in order to get our life back.
As Martha mentioned, some members here have good luck with Immodium for temporary help when they need to get through a meeting, or a trip, for example, but if you use it, be sure to use the original forumlation, (Imodium AD), unless you're one of the few people with MC who are not sensitive to dairy products, because most of the other versions of Imodium contain lactose. I found that it makes me dizzy, so I couldn't use it.
If you do your homework, and fine-tune your treatment program, you won't need to monitor it - you will be in remission. However, the disease has no known cure, so some sort of treatment is necessary, indefinitely, in order to control the symptoms. That can be done by either permanent diet changes, or by taking a maintenance dose of an anti-inflammatory medication, (or both). IOW, if you do your part, you can definitely get your life back, and you won't need to see your GI doc again, (until you get old enough to need to do the colon cancer screenings thingy).Palmie wrote:6. How is this monitored? Yearly colonoscopies, reports of less severe D?
Again, welcome aboard, and I hope the meeting went well.
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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Palmie2007
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Linda in BC
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I will keep in touch as I "digest" all of your information. haha
Welcome to our internet family, Palmie. I am sure with your obvious good sense of humour you will fit right in
A sense of humour is invaluable if you want to keep your sanity in dealing with this! I have suffered all my life with restless leg syndrome and like Tex, can keep it at bay with adequate doses of magnesium but it is a real challenge for me to get enough into me with out it causing D. Miss a couple of days tho and it comes back full force along with leg cramps.
I have used immodium when I needed a full day of relief (like if I was travelling ) and also used pepto bismol to control symptoms for shorter periods, for many years before I found out ( thru this forum) about diet, food intolerances and Entocort.
Wishing you well in your journey to remission.
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Welcome Palmie!
36 yr old here - diagnosed last year after 4 months of active D and 8 years of mild post-infectious IBS and lactose intolerance. My doc wanted me to start asocol, but I refused and tried a pepto bismol regimen (up to 8 tabs a day) instead. I only got significant relief after going gluten and dairy free. Within 10 days I went from 6 D/day to less than 2 - amazing. I still pop a few Pepto if I eat something that makes me flare, but I have avoided Immodium. It works almost too well for me and makes me incredibly gassy and uncomfortable, like the offending foods are trapped and trying to escape...I'd rather have D! But your results may vary. Many folks here use Immodium for flares.
I also had restless leg symptoms, probably due to vitamin deficiencies and chronic dehydration.
Make sure you avoid NSAIDS like ibuprofen, SSRI antidepressants, and PPI-acid reducers, as these can all cause and/or aggravate MC.
And if you haven't already been tested for celiac disease, make sure you do BEFORE you start a gluten-free diet.
I vaguely recall my gastro saying I would need a colonoscopy every 10 years from now on.
36 yr old here - diagnosed last year after 4 months of active D and 8 years of mild post-infectious IBS and lactose intolerance. My doc wanted me to start asocol, but I refused and tried a pepto bismol regimen (up to 8 tabs a day) instead. I only got significant relief after going gluten and dairy free. Within 10 days I went from 6 D/day to less than 2 - amazing. I still pop a few Pepto if I eat something that makes me flare, but I have avoided Immodium. It works almost too well for me and makes me incredibly gassy and uncomfortable, like the offending foods are trapped and trying to escape...I'd rather have D! But your results may vary. Many folks here use Immodium for flares.
I also had restless leg symptoms, probably due to vitamin deficiencies and chronic dehydration.
Make sure you avoid NSAIDS like ibuprofen, SSRI antidepressants, and PPI-acid reducers, as these can all cause and/or aggravate MC.
And if you haven't already been tested for celiac disease, make sure you do BEFORE you start a gluten-free diet.
I vaguely recall my gastro saying I would need a colonoscopy every 10 years from now on.
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MaggieRedwings
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- Location: SE Pennsylvania
Welcome Palmie!
Sorry to hear you have been diagnosed with CC but I understand it when you say it was almost a relief to have a name for what you have. I felt the same way when diagnosed over 10 years ago.
Must agree with the information you have already been given for your questions. Was going to answer each one but would only be reiterating what has already been said.
PLEASE do start to eliminate gluten from your diet as a starter and you probably will see results - docs very rarely thing dietary changes help but we know they do.
Maggie
Sorry to hear you have been diagnosed with CC but I understand it when you say it was almost a relief to have a name for what you have. I felt the same way when diagnosed over 10 years ago.
Must agree with the information you have already been given for your questions. Was going to answer each one but would only be reiterating what has already been said.
PLEASE do start to eliminate gluten from your diet as a starter and you probably will see results - docs very rarely thing dietary changes help but we know they do.
Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!
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Tex
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.