HI All!!!
I have another question for you all. Wondering if this is a symptom of the CC. My eyes burn off and on and I feel like I have a haze over them. I don't remember this prior to CC. Although I have become hyper aware of anything different my body does. The eye symptoms had gone away for a bit and have returned, but I also have started feeling tired and blah again, the past day or so.
Merry Christmas and Happy Holidays to you all!!
Eliza
New DX of MC
Just throwing this out there....but Betaine HCL has been a real helper for me to increase my acid in my stomach naturally so that I can digest foods way better than I ever have.
Immediate help with H2 antihistamines is a good beginning but I did not stay on them for a long period of time for this purpose, but I did in the beginning of my healing.
Immediate help with H2 antihistamines is a good beginning but I did not stay on them for a long period of time for this purpose, but I did in the beginning of my healing.
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
Hi Eliza,
I have no idea of the percentage, but yes, some of us have eye issues (inflammation) associated with MC.
Tex
I have no idea of the percentage, but yes, some of us have eye issues (inflammation) associated with MC.
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.
Uceris and Treatment Plan
Hello All and Tex,
I went for a follow up with my gastro today, he states that he would like me to continue to take the 6mg Uceris for a year then come back, at that time he will do another colonoscopy and endoscopy to see how things are looking. Then wean me off. Seems like an awful long time to be on the Uceris, especially since I have changed my diet and diligently working to control symptoms with all the help of this forum!! I have stopped hurting and feeling raw on the inside; I have also started developing some constipation and needed to take a stool softener just yesterday. I was on 9 mg for 6 weeks and have been on 6 mg for approx 2 weeks. I know there is no standard treatment plan as we are all different, but curious to see if there is some "standard" of treatment with you all. I don't want to continue to take something for that long if it isn't necessary.
Cheers,
Eliza
I went for a follow up with my gastro today, he states that he would like me to continue to take the 6mg Uceris for a year then come back, at that time he will do another colonoscopy and endoscopy to see how things are looking. Then wean me off. Seems like an awful long time to be on the Uceris, especially since I have changed my diet and diligently working to control symptoms with all the help of this forum!! I have stopped hurting and feeling raw on the inside; I have also started developing some constipation and needed to take a stool softener just yesterday. I was on 9 mg for 6 weeks and have been on 6 mg for approx 2 weeks. I know there is no standard treatment plan as we are all different, but curious to see if there is some "standard" of treatment with you all. I don't want to continue to take something for that long if it isn't necessary.
Cheers,
Eliza
Hi Eliza,
Normally, when taking budesonide, constipation is a definite sign that it's time to step down the dosage. Continuing at the current dose will presumably just ensure that constipation is a continuing problem. In my opinion, constipation is at least as hard on the body as diarrhea, because it will increase the odds of developing diverticulitis, and probably other problems that don't come to mind at the moment.
If it were me, I would call my gastroenterologist's office (or email him) and describe the problem and ask if he agrees that the dose needs to be reduced. If he doesn't agree, I would reduce it anyway. Constipation is no fun. But I'm not a doctor, so I can't advise you what to do. I can only tell you what I would do.
Tex
Normally, when taking budesonide, constipation is a definite sign that it's time to step down the dosage. Continuing at the current dose will presumably just ensure that constipation is a continuing problem. In my opinion, constipation is at least as hard on the body as diarrhea, because it will increase the odds of developing diverticulitis, and probably other problems that don't come to mind at the moment.
If it were me, I would call my gastroenterologist's office (or email him) and describe the problem and ask if he agrees that the dose needs to be reduced. If he doesn't agree, I would reduce it anyway. Constipation is no fun. But I'm not a doctor, so I can't advise you what to do. I can only tell you what I would do.
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.
Enterolab Results
Hello all, I received my enterolab results. Just wanted to share and get any feedback if anyone has any.
Quantitative Microscopic Fecal Fat Score 310 Units (Normal Range is less than 300 Units)
Fecal Anti-gliadin IgA 25 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 12 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 5 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 16 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 8 Units (Normal Range is less than 10 Units)
I am already GF, looks like I need to remove dairy and soy!! I also have some reactivity to corn, oat and tuna. I will avoid those as well.
Have an awesome day all,
Eliza
Quantitative Microscopic Fecal Fat Score 310 Units (Normal Range is less than 300 Units)
Fecal Anti-gliadin IgA 25 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 12 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 5 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 16 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 8 Units (Normal Range is less than 10 Units)
I am already GF, looks like I need to remove dairy and soy!! I also have some reactivity to corn, oat and tuna. I will avoid those as well.
Have an awesome day all,
Eliza
Hi Eliza,
Your results are fairly typical. Lucky you — looks like eggs are safe.
The slightly elevated fecal fat score is due to small intestinal damage from gluten. That will slowly heal as the inflammation subsides. As it heals, your ability to absorb the nutrients in your food will improve.
You can probably ignore all of the results in the 11 other antigenic foods test because your overall score was below 10 (it was 8), suggesting that none of those foods should cause any problems for you. That said, I would avoid oats because virtually all of us react to oats (the avenin in oats is very similar to the gluten in wheat, only weaker). Also, keep an eye on any of those foods that ranked the highest in their category, just in case they should bother you, but I'm guessing they shouldn't be a problem.
Happy recovering. If you've been GF for a few months already, you should see some improvement soon, after you cut dairy and soy out of your diet.
Tex
Your results are fairly typical. Lucky you — looks like eggs are safe.
The slightly elevated fecal fat score is due to small intestinal damage from gluten. That will slowly heal as the inflammation subsides. As it heals, your ability to absorb the nutrients in your food will improve.
You can probably ignore all of the results in the 11 other antigenic foods test because your overall score was below 10 (it was 8), suggesting that none of those foods should cause any problems for you. That said, I would avoid oats because virtually all of us react to oats (the avenin in oats is very similar to the gluten in wheat, only weaker). Also, keep an eye on any of those foods that ranked the highest in their category, just in case they should bother you, but I'm guessing they shouldn't be a problem.
Happy recovering. If you've been GF for a few months already, you should see some improvement soon, after you cut dairy and soy out of your diet.
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.
Few Questions
Hello All,
Just have a few questions for you all. I have had bags and dark circles since all this. Is that from the budesonide or just the CC or am I just getting old? LOL
I also have a to get a tooth capped, is there any issues with getting that done? I am so worried something is going to set me back, I have come so far.
Foot cramps-they had gone away and now are back....had blood work few weeks back and magnesium was fine at 2.1. They wake me up at night, and ouch. Any ideas on this? I don't think I am dehydrated and I drink only water throughout the day.
I had started feeling better, more energy and better mood; this week I have gotten back to that hit by a bus feeling, that is when the foot cramps started too, maybe a correlation, also the nausea is back some. I am taking budesonide 3mg every other day. Started that probably a week ago because I was starting to get constipated. I am strictly GF, could I have eaten something that got me? Is this just part of the slow healing process? Thoughts... :-)
Thanks everyone!! Yall are life savers
Hugs,
Eliza
Just have a few questions for you all. I have had bags and dark circles since all this. Is that from the budesonide or just the CC or am I just getting old? LOL
I also have a to get a tooth capped, is there any issues with getting that done? I am so worried something is going to set me back, I have come so far.
Foot cramps-they had gone away and now are back....had blood work few weeks back and magnesium was fine at 2.1. They wake me up at night, and ouch. Any ideas on this? I don't think I am dehydrated and I drink only water throughout the day.
I had started feeling better, more energy and better mood; this week I have gotten back to that hit by a bus feeling, that is when the foot cramps started too, maybe a correlation, also the nausea is back some. I am taking budesonide 3mg every other day. Started that probably a week ago because I was starting to get constipated. I am strictly GF, could I have eaten something that got me? Is this just part of the slow healing process? Thoughts... :-)
Thanks everyone!! Yall are life savers
Hugs,
Eliza
In my case at least, bags under my eyes are usually due to my poor/insufficient sleep. The dark circles might be/are probably from the budesonide.
If the dentist says you need an antiobiotic, be careful. Amoxycillin or a similar antibiotic is usually prescribed for dental work, but it's a primary trigger for MC reactions and increased risk of C. diff. I always insist on Ciprofloxacin, even though it's labeled with all sorts of bad black box warnings by FDA mandate. Cipro is the only antibiotic, (along with the rest of the fluoroquinolone family of antibiotics) that never triggers an MC reaction for most of us. In fact, it will usually stop an MC reaction in progress, but unfortunately it's too risky to take Cipro routinely because of all the possible side effect risks, especially with long-term use. I'm not suggesting that you use Cipro — I'm only mentioning what I do.
If that was a serum magnesium test, which is the one that doctors have traditionally ordered, those results are virtually worthless, because they only measure how much magnesium is available in your blood at the time of the blood draw. That's fine if you're in the ER because of an acute condition, but it doesn't provide any estimate of how long that magnesium will last. Magnesium is a vital electrolyte, so the amount in the blood is carefully maintained by the body, unless your reserves run low. If your reserves (stored in cells) are low, your blood tends to run low on magnesium during the wee hours or the morning, because of the length of time since your last meal. That's the usual cause of leg cramps during the night. Next time your doctor orders a magnesium test, request a red blood cell (RBC) magnesium test. It's much more accurate, except that the normal range used by many labs is too low. The normal range should probably be in the range of 6.0-6.5 mg/dL, according to Dr Carolysn Dean.
Regardless of what your test results show, it should be safe for everyone to take at least the RDA of magnesium, which is 320 mg for women and 400 mg for men. According to Dr Dean, "A hundred years ago we were able to get five hundred milligrams per day of Magnesium. Today we get closer to two hundred milligrams per day because of changes in food nutrient composition and diet . . ."
https://thequantifiedbody.net/magnesium ... olyn-dean/
Regarding the general decline in the way you feel, that may well be connected with your reduced budesonide dose. But unless you're dehydrated, constipation should be a sign that it's time to reduce the budesonide dose. It's possible that the diet changes just haven't had time to sufficiently heal your intestines, and budesionide is more effective than usual for you. But yes, it could also be because of cross-contamination in your diet. The path to recovery is seldom easy (for most of us at least), because there are so many ways for things to go wrong (and only one way for things to go right). Recovery is often described as a sequence of two steps forward, and one step back.
Tex
If the dentist says you need an antiobiotic, be careful. Amoxycillin or a similar antibiotic is usually prescribed for dental work, but it's a primary trigger for MC reactions and increased risk of C. diff. I always insist on Ciprofloxacin, even though it's labeled with all sorts of bad black box warnings by FDA mandate. Cipro is the only antibiotic, (along with the rest of the fluoroquinolone family of antibiotics) that never triggers an MC reaction for most of us. In fact, it will usually stop an MC reaction in progress, but unfortunately it's too risky to take Cipro routinely because of all the possible side effect risks, especially with long-term use. I'm not suggesting that you use Cipro — I'm only mentioning what I do.
If that was a serum magnesium test, which is the one that doctors have traditionally ordered, those results are virtually worthless, because they only measure how much magnesium is available in your blood at the time of the blood draw. That's fine if you're in the ER because of an acute condition, but it doesn't provide any estimate of how long that magnesium will last. Magnesium is a vital electrolyte, so the amount in the blood is carefully maintained by the body, unless your reserves run low. If your reserves (stored in cells) are low, your blood tends to run low on magnesium during the wee hours or the morning, because of the length of time since your last meal. That's the usual cause of leg cramps during the night. Next time your doctor orders a magnesium test, request a red blood cell (RBC) magnesium test. It's much more accurate, except that the normal range used by many labs is too low. The normal range should probably be in the range of 6.0-6.5 mg/dL, according to Dr Carolysn Dean.
Regardless of what your test results show, it should be safe for everyone to take at least the RDA of magnesium, which is 320 mg for women and 400 mg for men. According to Dr Dean, "A hundred years ago we were able to get five hundred milligrams per day of Magnesium. Today we get closer to two hundred milligrams per day because of changes in food nutrient composition and diet . . ."
https://thequantifiedbody.net/magnesium ... olyn-dean/
Regarding the general decline in the way you feel, that may well be connected with your reduced budesonide dose. But unless you're dehydrated, constipation should be a sign that it's time to reduce the budesonide dose. It's possible that the diet changes just haven't had time to sufficiently heal your intestines, and budesionide is more effective than usual for you. But yes, it could also be because of cross-contamination in your diet. The path to recovery is seldom easy (for most of us at least), because there are so many ways for things to go wrong (and only one way for things to go right). Recovery is often described as a sequence of two steps forward, and one step back.
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.
Thanks Tex for all your input!!
Shockingly, I did get the Magnesium, RBC test with my levels being 2.1 mmol/L the conversion would be 5.103 mg/dL. (I went to a functional nurse pract to help me out some, since the GI just wants me to stay on budesonide for a year and not change anything else, insert eye roll here) I am taking 400 mg every morning, "if it were you" should I bump this up to two a day? Maybe taking a 400 at night? Sounds like low mag might be the culprit? Or hold tight and just let my body heal more. -I tend to be impatient when I am not feeling well.
As far as budesonide, do you think I should stay at 3mg every other day? I tend to be pretty sensitive to meds, so that might be why I have had to taper down quicker. Before this, I was also prone to constipation, having to watch my diet and taking stool softners at least once weekly, if not multiple days. So far, everything is moving once in the morning and normal for the most part, there is still mucous. I do have some weird sharp cramping sometimes, below my navel, not bad or anything, just noticeable. I just trumped it up to being the decrease in budesonide and being able to feel my symptoms a bit more.
Thank you so much!!
E.
Shockingly, I did get the Magnesium, RBC test with my levels being 2.1 mmol/L the conversion would be 5.103 mg/dL. (I went to a functional nurse pract to help me out some, since the GI just wants me to stay on budesonide for a year and not change anything else, insert eye roll here) I am taking 400 mg every morning, "if it were you" should I bump this up to two a day? Maybe taking a 400 at night? Sounds like low mag might be the culprit? Or hold tight and just let my body heal more. -I tend to be impatient when I am not feeling well.
As far as budesonide, do you think I should stay at 3mg every other day? I tend to be pretty sensitive to meds, so that might be why I have had to taper down quicker. Before this, I was also prone to constipation, having to watch my diet and taking stool softners at least once weekly, if not multiple days. So far, everything is moving once in the morning and normal for the most part, there is still mucous. I do have some weird sharp cramping sometimes, below my navel, not bad or anything, just noticeable. I just trumped it up to being the decrease in budesonide and being able to feel my symptoms a bit more.
Thank you so much!!
E.
Hmmm. The problem is, budesonide depletes magnesium, but we don't know how much because that depends on our malabsorption rate. 400 mg should be enough, if you're taking magnesium glycinate. Our body can only absorb a limited amount of magnesium at any one time. If an excess amount is taken at one time, the body purges the excess, because too much magnesium in the blood is not good.
If you're currently taking all the magnesium in the morning, scatter the dose through the day, preferably after meals. I take 300 mg per day, 100 mg after each meal, except I take the last tablet just before bedtime. Taking a tablet just before bedtime should make a difference. If it doesn't, you're probably low on either potassium or calcium. Any electrolyte deficiency can cause leg cramps, with magnesium deficiency being the most common.
If you're constipation-prone, the budesonide probably isn't doing you any good. Note that chronic constipation is a symptom of chronic magnesium deficiency. Your RBC magnesium level is below 6.0 mg/dL. Did you take a magnesium supplement before the blood draw for that test? You should skip magnesium supplements before a test, or the result will be somewhat higher than it would normally be.
Tex
If you're currently taking all the magnesium in the morning, scatter the dose through the day, preferably after meals. I take 300 mg per day, 100 mg after each meal, except I take the last tablet just before bedtime. Taking a tablet just before bedtime should make a difference. If it doesn't, you're probably low on either potassium or calcium. Any electrolyte deficiency can cause leg cramps, with magnesium deficiency being the most common.
If you're constipation-prone, the budesonide probably isn't doing you any good. Note that chronic constipation is a symptom of chronic magnesium deficiency. Your RBC magnesium level is below 6.0 mg/dL. Did you take a magnesium supplement before the blood draw for that test? You should skip magnesium supplements before a test, or the result will be somewhat higher than it would normally be.
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.
Then your magnesium level doesn't appear to super-low, so magnesium may not be the current problem.Eliza wrote:That morning I had not taken anything, but the day before had taken my supplements as usual.
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.