hello everyone,
i've checked this website for months and finally decided to join the message boards. i'm not sure exactly what to write or how to go about this but i've got tears in my eyes right now.
i was first diagnosed with MC in 2008. i was 23. the doctor told me i had "general chronic colitis" and there were "no known cures." my only question to him was, "so do i just keep taking imodium for the rest of my life?" to which he answered yes. i wish i had known to be an advocate for my own health. i wish i had a clue, but again, 23. after so many years of struggling i had an anatomy professor tell me to stop eating gluten (despite my negative blood test) so i tried it. i felt a little better for a little while but then things slowly got worse. i have since had another colonoscopy/endoscopy, abdominal ultrasound, i've tried cleanses, acupuncture, and drastic diet changes. i'm seeing a naturopath who i've worked with over the years and my iga/igg test shows more intolerances than it did 2 years ago. i've reluctantly resorted to western medicine to help with symptoms. currently on budesonide, which kinda helps but is extremely expensive.
i'm just sad. i'm sad i can't have normal bm when i'm already avoiding so many foods. i'm sad i don't have the energy to keep up with my two beautiful boys. they are so full of life and sometimes i'm irritable and tired. i'm sad for how long my "healing" is taking. not even sure i can call it healing at this point. i've remained mostly quiet about this part of my life. not something you announce when you meet somebody, "hi, i'm tempie and i poop a lot." only recently did my coworkers and boss find out because i went to the ER with severe dehydration after having severe D for 15 days, after my flu shot, the same flu shot the pharmacist assured me i wouldn't have a problem with even though it had egg in it. her words were "oh, if you don't go into anaphylaxis, you'll be fine." i wasn't fine. i lost 4 lbs over two weeks and i'm only 120 lbs at 5'8". this is what sparked the budesonide. i've tried so hard to do this naturally and on my own but it's obvious i'm not having any success. most of all i hate the emotional roller coaster that is everyday.
i'm sorry for the depressing post. i'm not sure how to do this and i'm just feeling lost. lost and alone.
thanks,
tempie
first post
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Tempie,
Welcome to the forum. You're not lost any more. You are now on your way toward gaining control of this widely-misunderstood syndrome known as MC. Let me first say that by now, you are probably severely deficient of Vitamin D and magnesium (which your body needs to heal properly). You may also be vitamin B-12 deficient, and possibly some other B vitamins. Let's see if we can find a safe recovery diet for you that doesn't include any inflammatory foods. It appears you've already eliminated the main ones. Exactly what are you eating, and are you taking any medications other than the budesonide?
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to the forum. You're not lost any more. You are now on your way toward gaining control of this widely-misunderstood syndrome known as MC. Let me first say that by now, you are probably severely deficient of Vitamin D and magnesium (which your body needs to heal properly). You may also be vitamin B-12 deficient, and possibly some other B vitamins. Let's see if we can find a safe recovery diet for you that doesn't include any inflammatory foods. It appears you've already eliminated the main ones. Exactly what are you eating, and are you taking any medications other than the budesonide?
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.
Thanks for your response Tex.
I had magnesium and vitamin B12 tested in 2017 and both were in normal range. I've never had my Vitamin D tested so that will be next. I've read here before that EnteroLab is the best testing option. I've only had the blood test done by US BioTek and I had an ALCAT food sensetivity test done in 2016, which was really confusing because it showed completely different foods than the IgG protein test.
I'm not currently on any other medications. Some days I take Vitamin D, when I remember, and a fish oil. My current diet is healthy but after reading more here it seems as if I'm not cooking my veggies enough (salad is my favorite), and I probably eat too many raw fruits. I plan to start the Stage 1 diet.
The most successful I've been with diet alone was in 2015 when I tried the G.A.P.S. diet. After you delve into it, the diet relies heavily on eggs so I switched to the autoimmune paleo diet. At the time I was a stay at home mom of a 2 yr old and 6 month old, so I had more time to batch cook and remain strict. I now have a 2 and 4 yr old and work part time. Most nights I am getting home from work and trying to whip dinner for all 4 of us in 20 minutes.
I'm overwhelmed with the thought of going back to a such a strict diet but it's obviously what I need to do.
I also started by taking Mesalmine and Cholestrymine (spelling?) but the cholestraymine was an orange flavor and orange has always been a sensitivity for me. The drugs worked really well for the first few weeks and then became less effective. My fear is the same will happen with the budesonide.
I don't know. I'd love to be off medication and feel energetic again.
Also I've recently quit coffee and drink green or black tea in the morning but it sounds like that's got to go too? Any suggestions for something besides water that I can enjoy when I wake up?
I was also wondering if you can suggest an electrolyte drink to help with the chronic thirst?
Thanks Tex.
Above all else I think this forum will help me feel less desperate.
I had magnesium and vitamin B12 tested in 2017 and both were in normal range. I've never had my Vitamin D tested so that will be next. I've read here before that EnteroLab is the best testing option. I've only had the blood test done by US BioTek and I had an ALCAT food sensetivity test done in 2016, which was really confusing because it showed completely different foods than the IgG protein test.
I'm not currently on any other medications. Some days I take Vitamin D, when I remember, and a fish oil. My current diet is healthy but after reading more here it seems as if I'm not cooking my veggies enough (salad is my favorite), and I probably eat too many raw fruits. I plan to start the Stage 1 diet.
The most successful I've been with diet alone was in 2015 when I tried the G.A.P.S. diet. After you delve into it, the diet relies heavily on eggs so I switched to the autoimmune paleo diet. At the time I was a stay at home mom of a 2 yr old and 6 month old, so I had more time to batch cook and remain strict. I now have a 2 and 4 yr old and work part time. Most nights I am getting home from work and trying to whip dinner for all 4 of us in 20 minutes.
I'm overwhelmed with the thought of going back to a such a strict diet but it's obviously what I need to do.
I also started by taking Mesalmine and Cholestrymine (spelling?) but the cholestraymine was an orange flavor and orange has always been a sensitivity for me. The drugs worked really well for the first few weeks and then became less effective. My fear is the same will happen with the budesonide.
I don't know. I'd love to be off medication and feel energetic again.
Also I've recently quit coffee and drink green or black tea in the morning but it sounds like that's got to go too? Any suggestions for something besides water that I can enjoy when I wake up?
I was also wondering if you can suggest an electrolyte drink to help with the chronic thirst?
Thanks Tex.
Above all else I think this forum will help me feel less desperate.
Hi Tempe,
Welcome, consider cook your protein's in big lots. Freeze individual Tempie portions. I get 40 portions of protein out of roasting a turkey. Cut in chunks and freeze. Pull out individually and microwave.
Buy a rice cooker with a timer. Set timer when you leave for work in the morning. Cook your rice in big lots for 2-3 days and frig.
Cook potatoes in big lots for 2-3 days.
Cook overcooked veggies in big lots for 2-3 days.
The protein should be frozen due to histamines. I find I am okay with rice and potatoes and overcooked veggies in the frig for 2-3 days but I would not go longer due to histamines.
Check out Gabes stage 1 eating plan.
I was ok with black tea and green tea even when I was very sick. I used a little stevia. Most are ok with coffee.
You have come to the right place. If you don't already have Tex's book I recommend it. See link upper right.
Welcome, consider cook your protein's in big lots. Freeze individual Tempie portions. I get 40 portions of protein out of roasting a turkey. Cut in chunks and freeze. Pull out individually and microwave.
Buy a rice cooker with a timer. Set timer when you leave for work in the morning. Cook your rice in big lots for 2-3 days and frig.
Cook potatoes in big lots for 2-3 days.
Cook overcooked veggies in big lots for 2-3 days.
The protein should be frozen due to histamines. I find I am okay with rice and potatoes and overcooked veggies in the frig for 2-3 days but I would not go longer due to histamines.
Check out Gabes stage 1 eating plan.
I was ok with black tea and green tea even when I was very sick. I used a little stevia. Most are ok with coffee.
You have come to the right place. If you don't already have Tex's book I recommend it. See link upper right.
Also--I had to switch to paper plates when I was exhausted which I don't like using due to the environment but we ate off of paper plates for about 6 months.
Eliminate all salads for now. Eliminate fruits with the exception of bananas and possibly avacados.
Consider start with Gabes stage 1 regimen.
I'm able to eat small salads and fruits but it took me 18 months to get to that point.
Eliminate all salads for now. Eliminate fruits with the exception of bananas and possibly avacados.
Consider start with Gabes stage 1 regimen.
I'm able to eat small salads and fruits but it took me 18 months to get to that point.
Tempie,
The blood tests are pretty much worthless for digestive system food sensitivities — the relevant antibodies are in the intestines, and in stool, and they only show up in the blood in quantities insufficient for the blood tests to reliably detect them. That makes the Enterolab tests the only accurate and reliable tests available. The serum magnesium test used by virtually all doctors is pretty much worthless unless you are so critically low on magnesium that you are already having cardiovascular issues. Less than 1 % of your magnesium is found in your serum. Almost everyone heals faster if they take at least the RDA of magnesium (about 300 mg in your case) and approximately 3,000–5,000 IU of vitamin D, even when their test results are in the normal range. If you're concerned about the magnesium causing diarrhea, use topical applications or foot soaks in Epsom salts.
I agree with Brandy — salads should be avoided until after you are in stable remission. Fiber and sugar should be minimized during recovery (and artificial sweeteners — especially aspartame) should be avoided. Fruits are a source of both sugar and fiber so they should definitely be minimized during recovery. The fructose in fruits presents major digestive problems, especially when we are reacting. Raw vegetables and fruit should never be eaten (with the exception of bananas) during recovery. Virtually none of us can tolerate raw vegetables or fruit while we are reacting.
Corticosteroids actually slow down healing, so you can certainly recover without any drugs if you are careful with your diet. I never took any drugs when I was recovering, and that applies to many others here.
You can find a recipe for making an electrolyte drink at the link below. Polly (the author of that post) is an MD.
Dehydration and Electrolyte Imbalance
For most MC patients, only the original version of cholestyramine works (not the flavored or the lite versions), and finding the right dose is critical.
If coffee or tea sent you to the bathroom soon after drinking it before you had MC, it will also do so now that you have MC. IOW, most of us can handle it just fine if it wasn't originally a problem, but if you want to maximize your probability of success in healing, avoiding it during recovery may speed up the process.
I hope that some of this is helpful.
Tex
The blood tests are pretty much worthless for digestive system food sensitivities — the relevant antibodies are in the intestines, and in stool, and they only show up in the blood in quantities insufficient for the blood tests to reliably detect them. That makes the Enterolab tests the only accurate and reliable tests available. The serum magnesium test used by virtually all doctors is pretty much worthless unless you are so critically low on magnesium that you are already having cardiovascular issues. Less than 1 % of your magnesium is found in your serum. Almost everyone heals faster if they take at least the RDA of magnesium (about 300 mg in your case) and approximately 3,000–5,000 IU of vitamin D, even when their test results are in the normal range. If you're concerned about the magnesium causing diarrhea, use topical applications or foot soaks in Epsom salts.
I agree with Brandy — salads should be avoided until after you are in stable remission. Fiber and sugar should be minimized during recovery (and artificial sweeteners — especially aspartame) should be avoided. Fruits are a source of both sugar and fiber so they should definitely be minimized during recovery. The fructose in fruits presents major digestive problems, especially when we are reacting. Raw vegetables and fruit should never be eaten (with the exception of bananas) during recovery. Virtually none of us can tolerate raw vegetables or fruit while we are reacting.
Corticosteroids actually slow down healing, so you can certainly recover without any drugs if you are careful with your diet. I never took any drugs when I was recovering, and that applies to many others here.
You can find a recipe for making an electrolyte drink at the link below. Polly (the author of that post) is an MD.
Dehydration and Electrolyte Imbalance
For most MC patients, only the original version of cholestyramine works (not the flavored or the lite versions), and finding the right dose is critical.
If coffee or tea sent you to the bathroom soon after drinking it before you had MC, it will also do so now that you have MC. IOW, most of us can handle it just fine if it wasn't originally a problem, but if you want to maximize your probability of success in healing, avoiding it during recovery may speed up the process.
I hope that some of this is helpful.
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 Tempie,
Just wanted to say Hi....and that I, along with many others can really relate to you right now. We are behind you 100% and know you can do this too.
As soon as I got my VitD3 and Mag levels up in my body the energy level started coming back, I had to do alot of external magnesium to get what my body craved because it takes VitD and Mag together to build in the cells.
I also ate same 3-4 foods for many weeks (this may help you for yourself while you preplan some other food items for family members). Batch cooking and freezing in portions for myself was the best idea ever, that way I could think about decent meal ideas for my family and I could still eat with them too, I just warmed mine up in the microwave.
Ask anything, vent....talk, cry...we've all been there...the mental aspect of this is what hurts the worst and is what needs to be dealt with as much as possible.
Progress...not Perfection is the great moto here
Hugs
Erica
Just wanted to say Hi....and that I, along with many others can really relate to you right now. We are behind you 100% and know you can do this too.
As soon as I got my VitD3 and Mag levels up in my body the energy level started coming back, I had to do alot of external magnesium to get what my body craved because it takes VitD and Mag together to build in the cells.
I also ate same 3-4 foods for many weeks (this may help you for yourself while you preplan some other food items for family members). Batch cooking and freezing in portions for myself was the best idea ever, that way I could think about decent meal ideas for my family and I could still eat with them too, I just warmed mine up in the microwave.
Ask anything, vent....talk, cry...we've all been there...the mental aspect of this is what hurts the worst and is what needs to be dealt with as much as possible.
Progress...not Perfection is the great moto here
Hugs
Erica
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
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jessica329
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