I was diagnosed with CC on February 14, 2019. I was mailed a one-page piece of paper labeled "what is microscopic colitis?" and told to "follow-up in a month" with a script for Bude. I feel like i am hanging onto an airplane wing by my fingertips BUT am so glad to find this site. Thank you for this!
Stats (bag of nuts): Age 54; C-diff 4.5 years ago; smoker, Ibuprofen taker (stopped immediately). I was having D for a little over a year and the last 6 months it's progressed to 20 episodes a day, weight loss, no appetite, no thirst, ER for severe dehydration, low magnesium, missed work, and numerous accidents (during sleep even), with some just plain old laughs over it and some really embarrassing moments. I feel like I have been living a nightmare.
I am now on the "bandaid" I call it (Bude) and am thankful the MADNESS has stopped so I can at least function daily. Literally am so thankful for this drug right now.......BUT.......
I am trying to start my diet/lifestyle changes now during "bandaid" phase.
FIRST QUESTION: What on earth can I eat for breakfast, my favorite meal? I am currently eating GF oatmeal and I see this may have to be going bye bye. I am only a week into this obviously and can handle the chicken/rice/broth for lunch and dinner but breakfast is my thing you know? Can I have eggs? Why can't people eat eggs? How about BACON?
PS I am all of a sudden craving melon! Never ate melons! i am eating cantalope and honeydew with salt on it. Wonder why?
Thanks for any help.
New Gal Here
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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A lot of work ahead of me
- Little Blue Penguin
- Posts: 34
- Joined: Sat Feb 23, 2019 12:55 pm
- Location: Minnesota
New Gal Here
A lot of work ahead of me
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A lot of work ahead of me
- Little Blue Penguin
- Posts: 34
- Joined: Sat Feb 23, 2019 12:55 pm
- Location: Minnesota
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tommyboywalker
- Adélie Penguin
- Posts: 126
- Joined: Tue Jan 23, 2018 3:49 pm
Welcome to the forum!
What you can eat gets very tricky. What works for one may or may not work for another.
What many (including me) have done is to get some food sensitivity testing done by Enterolab. Not cheap, but most think it is worth the money it as it has a pretty good track record of identifying the foods that will likely trip you up. There are a LOT of good food threads here. Read them and you will find some common recommendations with many of them. There is usually more than a bit of trial and error with figuring out foods that work for you.
I highly suggest keeping both a journal of your bathroom habits and a journal of the foods, every meal. At least for now. If things go south, having that data to look back on is invaluable.
As for Budesonide, I recommend a very slow taper off of it, when you get to that point. Check out the Budesonide threads in this forum and you'll see that higher success seems to be linked with a slow taper. If you want my Budesonide taper schedule that my excellent GI doctor and I agreed on, PM me and I'll be glad to share it with you. For me, a very slow taper of Budesonide and then my diet of gluten free, dairy free, low fat and low sugar has kept me very much on track.
Ask any question, lots of good information here!
What you can eat gets very tricky. What works for one may or may not work for another.
What many (including me) have done is to get some food sensitivity testing done by Enterolab. Not cheap, but most think it is worth the money it as it has a pretty good track record of identifying the foods that will likely trip you up. There are a LOT of good food threads here. Read them and you will find some common recommendations with many of them. There is usually more than a bit of trial and error with figuring out foods that work for you.
I highly suggest keeping both a journal of your bathroom habits and a journal of the foods, every meal. At least for now. If things go south, having that data to look back on is invaluable.
As for Budesonide, I recommend a very slow taper off of it, when you get to that point. Check out the Budesonide threads in this forum and you'll see that higher success seems to be linked with a slow taper. If you want my Budesonide taper schedule that my excellent GI doctor and I agreed on, PM me and I'll be glad to share it with you. For me, a very slow taper of Budesonide and then my diet of gluten free, dairy free, low fat and low sugar has kept me very much on track.
Ask any question, lots of good information here!
Hi,
Welcome to the group. You might be OK with chicken eggs, but to minimize the risks most of us eliminate them while we are recovering. The problem is, if you fail to avoid even a single food sensitivity while you are weaning off budesonide, you won't be able to remain in remission. After you are in stable remission for a while (and you haven't taken any budesonide for a couple of months), you can test chicken eggs to see if you can tolerate them. In the meantime, if you have to have eggs, you might be able to substitute duck or quail eggs. Some members successfully do that.
If you are not one of the relatively few who react to pork, you can probably eat bacon. Some members buy uncured bacon, again to minimize the risk.
But during recovery, most of us eat the same safe foods for all three meals, and snacks in between. We just eat leftovers from the previous meals for breakfast. If you drink coffee, don't use a creamer — most "dairy-free" creamers contain casein, and most of us react to casein. Use almond milk, or coconut milk, or table sugar. No artificial sweeteners. Virtually all of us react to artificial sweeteners.
Please resist the urge to eat melons. They contain unique natural chemicals that cause virtually all of us to react. You might be able to get away with all sorts of shenanigans while you are taking budesonide, because it will mask symptoms. But violating your diet can reduce or stop healing progress so that after you wean off the budesonide, you may not be able to maintain remission. You can always test melons later, but it doesn't take much testing to convince most of us that we can no longer tolerate melons.
I hope this helps. Again, welcome aboard.
Tex
Welcome to the group. You might be OK with chicken eggs, but to minimize the risks most of us eliminate them while we are recovering. The problem is, if you fail to avoid even a single food sensitivity while you are weaning off budesonide, you won't be able to remain in remission. After you are in stable remission for a while (and you haven't taken any budesonide for a couple of months), you can test chicken eggs to see if you can tolerate them. In the meantime, if you have to have eggs, you might be able to substitute duck or quail eggs. Some members successfully do that.
If you are not one of the relatively few who react to pork, you can probably eat bacon. Some members buy uncured bacon, again to minimize the risk.
But during recovery, most of us eat the same safe foods for all three meals, and snacks in between. We just eat leftovers from the previous meals for breakfast. If you drink coffee, don't use a creamer — most "dairy-free" creamers contain casein, and most of us react to casein. Use almond milk, or coconut milk, or table sugar. No artificial sweeteners. Virtually all of us react to artificial sweeteners.
Please resist the urge to eat melons. They contain unique natural chemicals that cause virtually all of us to react. You might be able to get away with all sorts of shenanigans while you are taking budesonide, because it will mask symptoms. But violating your diet can reduce or stop healing progress so that after you wean off the budesonide, you may not be able to maintain remission. You can always test melons later, but it doesn't take much testing to convince most of us that we can no longer tolerate melons.
I hope this helps. Again, welcome aboard.
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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A lot of work ahead of me
- Little Blue Penguin
- Posts: 34
- Joined: Sat Feb 23, 2019 12:55 pm
- Location: Minnesota
Thank you for some great advice so far!!
I will stop the melon right away. I wonder if I am craving them because of the water content. More pedialyte for me maybe. I will also stay away from chicken eggs like you suggest. Funny thing is that the young gal I am renting from right now raises QUAIL and has been trying to convince me to try these teensie weensie eggs they lay! Mostly she gets a nose wrinkle from me but maybe I will try now. Bacon is definetely on my grocery list now. Gotta give it a shot - my true love bacon (and eggs)......
The Bude script I am on seems to be the standard one. 9mg per day for a month then taper to 6 mg for two weeks and 3mg for two weeks which will bring me to mid April. I might give a call to my not so fabulous GI specialist and see if I can extend this or alter. I know the Bude has to come to an end one day so I am already starting my food tests. Love the coconut milk in my coffee - love it.
Regardless of my trials and tribulations to begin on this journey I am thankful for all of you. People do not understand this at all. Work just wants you to show up. My son says "I am so sick of talking about your poop" and the rest of life just goes on around us while we live our life hostage to this and constantly time our errands so as not to poop our pants, look everywhere we go for the nearest bathroom in case of a quick run and get sad when it comes time to eat.....but with all your help it seems this can be managed to improve quality of life.
Thank you !
I will stop the melon right away. I wonder if I am craving them because of the water content. More pedialyte for me maybe. I will also stay away from chicken eggs like you suggest. Funny thing is that the young gal I am renting from right now raises QUAIL and has been trying to convince me to try these teensie weensie eggs they lay! Mostly she gets a nose wrinkle from me but maybe I will try now. Bacon is definetely on my grocery list now. Gotta give it a shot - my true love bacon (and eggs)......
The Bude script I am on seems to be the standard one. 9mg per day for a month then taper to 6 mg for two weeks and 3mg for two weeks which will bring me to mid April. I might give a call to my not so fabulous GI specialist and see if I can extend this or alter. I know the Bude has to come to an end one day so I am already starting my food tests. Love the coconut milk in my coffee - love it.
Regardless of my trials and tribulations to begin on this journey I am thankful for all of you. People do not understand this at all. Work just wants you to show up. My son says "I am so sick of talking about your poop" and the rest of life just goes on around us while we live our life hostage to this and constantly time our errands so as not to poop our pants, look everywhere we go for the nearest bathroom in case of a quick run and get sad when it comes time to eat.....but with all your help it seems this can be managed to improve quality of life.
Thank you !
A lot of work ahead of me
Hang in there and take it slow. You will be amazed how much better you will feel soon. I was diagnosed in June 2014. I made this board my life, literally..... They saved me. The only difference is, I had a lot of support where I’d been sick and lost so much weight. Everyone was thrilled for me that I’d found this board and learned so much. It can be a whole new education for you. I had an accident here at the house a wk or so ago but it was my fault for eating too much. That’s the first in a long time. I can pretty much go or do anything I want but I have to keep my head. Good luck, keep your head up and read read & read.
Love,
Connie
Love,
Connie
Live, Laugh & Love Much
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A lot of work ahead of me
- Little Blue Penguin
- Posts: 34
- Joined: Sat Feb 23, 2019 12:55 pm
- Location: Minnesota
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I would be careful with the Pedialyte. It contains all kinds of questionable ingredients. There are all sorts of recipes on the internet for homemade electrolyte drinks. Since I have never had to take one I cannot advise you as to which one to try but I would definitely recommend ditching the Pedialyte and replacing it with something that contains recognizable and safe ingredients. Somebody here probably will have a more specific suggestion for you.
Jean
Jean
As per Jean's suggestion, here's a link to an early post by Polly that contains a recipe for making your own electrolyte/rehydration drink:
Dehydration and Electrolyte Imbalance
Tex
Dehydration and Electrolyte Imbalance
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.
Also, be careful of the uncured bacon. Most of the brands include rosemary or celery extract to add lots of nitrates and still claim that they are "uncured". The extracts naturally contain nitrates and thus allow for the "uncured", and "no added nitrates" labeling. The extracts usually contain soy oil, and since many of us are sensitive to soy, we will react to the bacon. I am gluten, diary and soy sensitive, and do just fine with regular bacon. The same holds true for "uncured" deli meats.
Rosie
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
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A lot of work ahead of me
- Little Blue Penguin
- Posts: 34
- Joined: Sat Feb 23, 2019 12:55 pm
- Location: Minnesota
oh my goodness - I have so much to learn. I think of all the things I have been plowing in my mouth - no wonder I have a mad digestive system.
And the medical professionals--they need to learn too aparently!
The ER doctor last week said: Pedialyte is your new best friend. Drink that only. Lol! Thank goodness y'all say stop that - it's expensive! ditching it now.
THANK YOU!
And the medical professionals--they need to learn too aparently!
The ER doctor last week said: Pedialyte is your new best friend. Drink that only. Lol! Thank goodness y'all say stop that - it's expensive! ditching it now.
THANK YOU!
A lot of work ahead of me