Good morning everyone!
I'm sooooo happy to have found this site! I was diagnosed with the big CC last January. The doctors... Who PRACTICE medicine tossed me on budesonide after I mentioned that I don't tolerate medicines very well. hmmmmmmmmm.....let see... Hyper....ate ridiculous amounts of bad foods....sleepless (which is not good when I need to work doubles)...hair loss...bleeding gums....bruising....red eyes every morning without the pleasure of smoking pot....elevated blood pressure...bad bone scan report after reversing osteoporosis...and last but not least....a long lasting mystery rash the doctor couldn't figure out for 2 months!!!!
I weaned myself off the drugs after 6 months and I fired my doctor after 8 months of arguing that I can't take the side effects anymore. I think he said something like "The only way to get better is to take the drugs".........really.
It has taken me all this time but I am better than I was.... Found a lovely young doctor from India who immediately helped me and said to take about 3-4 pepto-bismol tablets in emergencies....changed to liquid vitamins that goes into my Metamucil every am and have gone from massive diarrhea 14-20 times a day to decent stools 4-8 times a day!!! YAY!!!!!!!!!!
Thank you all for being here. I have a boat load to learn and looking so forward to it!!! Have a terrific day out there!!
Vern
I feel better already!!!!
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Hi Vern- I'm new here too, but was only diagnosed with CC in November- so I still have a long way to go. Sadly for me, Budesonide worked almost instantly, but after only two days of relief from my symptoms I had a terrible reaction to the drug. Unlike you, there was no question either for me or my Dr. about weighing the risks and benefits of continuing - it was clear that I could never take that drug again. So now I am trying to work out something diet wise but not having much success yet.
I'm curious that you can take metamucil- I tried that for a little on the Dr.s recommendation in the month before I had the endoscopy/colonoscopy which led to my diagnosis and for me metamucil didn't help with anything but give me more D to deal with.
After I had the reaction to the budesonide when I was talking to the nurse at the Dr.s office on the phone- the only other drug in the Dr.s bag of tricks to turn to from there was a perscription bulking agent (don't recall the name) but due to my bad experience with metamucil I thought that would just be more of the same and declined. I wonder what the general consensus here is about that treatment angle.
What are the vitamins you are taking?
-Sarah
I'm curious that you can take metamucil- I tried that for a little on the Dr.s recommendation in the month before I had the endoscopy/colonoscopy which led to my diagnosis and for me metamucil didn't help with anything but give me more D to deal with.
After I had the reaction to the budesonide when I was talking to the nurse at the Dr.s office on the phone- the only other drug in the Dr.s bag of tricks to turn to from there was a perscription bulking agent (don't recall the name) but due to my bad experience with metamucil I thought that would just be more of the same and declined. I wonder what the general consensus here is about that treatment angle.
What are the vitamins you are taking?
-Sarah
Mornin' Sarah!
The drug worked instantly but side effects...bad.
I've used Metamucil on and off for years and it's the only thing that provides bulk to the stool. And it's bad that we all don't get the same benefits from some of these suggestions but the individual make up is difficult.
I was astonished during my horrid flare up this summer when I discovered my B vitamins in the toilet....Whole!!! I wasn't getting one bit of the benefit which lead me to believe that I should at least try the liquid with the thoughts of hanging onto some of the vitamins. I pour in organic life vitamins...elderberry extract to help build my immune system...glucosamine/chondroitin....chewable C... The only whole supplements are calcium and hair supplements to try to get my hair back. I have blood work later this month and we'll see how my D3 is. I found that magnesium sends me to the toilet and ordered liquid ReMag from Dr Carolyn Dean....it gets absorbed into your system before it hits the digestive system, very well tolerated and I get by the taste. I lost some muscle from these episodes and hopefully with exercise I can grab a bit of it back.
Time will tell as it always does but I do know that taking control of my health is far better these days. We live with our bodies 24-7..... And some doctors don't get it...they see us for 15 minutes and try their best to figure it out and unfortunately drugs are the quickest way to "fix". Us....I'm not looking for a quick fix....im looking for a life style that continues to keep me fit and strong without the crappy side effects that will lead to more drugs.
Stay in touch and it was a pleasure meeting you!
Vern
I've used Metamucil on and off for years and it's the only thing that provides bulk to the stool. And it's bad that we all don't get the same benefits from some of these suggestions but the individual make up is difficult.
I was astonished during my horrid flare up this summer when I discovered my B vitamins in the toilet....Whole!!! I wasn't getting one bit of the benefit which lead me to believe that I should at least try the liquid with the thoughts of hanging onto some of the vitamins. I pour in organic life vitamins...elderberry extract to help build my immune system...glucosamine/chondroitin....chewable C... The only whole supplements are calcium and hair supplements to try to get my hair back. I have blood work later this month and we'll see how my D3 is. I found that magnesium sends me to the toilet and ordered liquid ReMag from Dr Carolyn Dean....it gets absorbed into your system before it hits the digestive system, very well tolerated and I get by the taste. I lost some muscle from these episodes and hopefully with exercise I can grab a bit of it back.
Time will tell as it always does but I do know that taking control of my health is far better these days. We live with our bodies 24-7..... And some doctors don't get it...they see us for 15 minutes and try their best to figure it out and unfortunately drugs are the quickest way to "fix". Us....I'm not looking for a quick fix....im looking for a life style that continues to keep me fit and strong without the crappy side effects that will lead to more drugs.
Stay in touch and it was a pleasure meeting you!
Vern
Hi Vern,
Welcome to the board. It's good to see that you're finally seeing some improvement. Yes, most mainstream doctors don't understand this disease and they know pitifully little about treating it successfully, (for more than a couple of months). They want to prescribe 2 months of budesonide and after that you're pretty much on your own, because they're out of practical ideas.
I hope that you can find the help you need here, so that you can get your health and your life back. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. It's good to see that you're finally seeing some improvement. Yes, most mainstream doctors don't understand this disease and they know pitifully little about treating it successfully, (for more than a couple of months). They want to prescribe 2 months of budesonide and after that you're pretty much on your own, because they're out of practical ideas.
I hope that you can find the help you need here, so that you can get your health and your life back. 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.
Sarah,
Soluble fiber is not as bad as insoluble fiber, but fiber in general is contraindicated for MC, due to the fact that its abrasiveness irritates our already hyper-infllamed intestines. The theory behind it's use is that by bulking up the stool, this will somehow benefit nutrient absorption. But the fact of the matter is that the malabsorption is due not only to the rapid transit, but mostly to the poor digestion in general (due to the inflammation). This is an attempt to treat the symptoms (similar to using budesonide) rather than to treat the cause of the inflammtion in the first place.
But the truth is, in most cases we are much better off if we get the toxic diarrhea out of our system as quickly as possible, because retaining it can only add to the inflammation. The only way to stop the inflammation from being regenerated with every meal is to remove all of the foods from our diet that cause us to produce antibodies. After we do that, and the gut has sufficient time to heal, digestion will improve and the symptoms will fade away.
Tex
Soluble fiber is not as bad as insoluble fiber, but fiber in general is contraindicated for MC, due to the fact that its abrasiveness irritates our already hyper-infllamed intestines. The theory behind it's use is that by bulking up the stool, this will somehow benefit nutrient absorption. But the fact of the matter is that the malabsorption is due not only to the rapid transit, but mostly to the poor digestion in general (due to the inflammation). This is an attempt to treat the symptoms (similar to using budesonide) rather than to treat the cause of the inflammtion in the first place.
But the truth is, in most cases we are much better off if we get the toxic diarrhea out of our system as quickly as possible, because retaining it can only add to the inflammation. The only way to stop the inflammation from being regenerated with every meal is to remove all of the foods from our diet that cause us to produce antibodies. After we do that, and the gut has sufficient time to heal, digestion will improve and the symptoms will fade away.
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.
Hey Tex!!
Thanks for your reply! Appreciate it.
The previous doctor wanted me on that caustic drug indefinitely. My current doctor at least listens and tries to come up with alternatives and I like that. It makes me feel hopeful vs hopeless. And that lack of stress does wonders for my gut!!!
Good health to you....
Vern
Thanks for your reply! Appreciate it.
The previous doctor wanted me on that caustic drug indefinitely. My current doctor at least listens and tries to come up with alternatives and I like that. It makes me feel hopeful vs hopeless. And that lack of stress does wonders for my gut!!!
Good health to you....
Vern
Vern wrote:And that lack of stress does wonders for my gut!!!
IMO chronic stress is one of the key ingredients in the recipe that leads to the development of MC, and learning to reduce stress is one of the "secrets" of successfully controlling the disease (and keeping it under control).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 Vern,
I find meditative yoga classes help with the stress--particularly Amrit Yoga and Yoga Nidra.
Brandy
I was on Entocort for 4.5 months and had a lot of side effects. I knew my last day would be my last day of Entocort forever. I've been able to maintain remission through diet and occasional pepto and immodium when traveling or in touchy spells.The doctors... Who PRACTICE medicine tossed me on budesonide after I mentioned that I don't tolerate medicines very well. hmmmmmmmmm.....let see... Hyper....ate ridiculous amounts of bad foods....sleepless (which is not good when I need to work doubles)...hair loss...bleeding gums....bruising....red eyes every morning without the pleasure of smoking pot....elevated blood pressure...bad bone scan report after reversing osteoporosis...and last but not least....a long lasting mystery rash the doctor couldn't figure out for 2 months!!!!
ROTFLMAO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!red eyes every morning without the pleasure of smoking pot
I find meditative yoga classes help with the stress--particularly Amrit Yoga and Yoga Nidra.
Brandy
Ahhhh....yoga....
Hey Brandy!!!
Good to hear from you!! Yes...I have taken some classes in the past but not for CC..... And I always felt better..stronger....and fit.
I will check out a couple of placses near me and see how I can fit it into this crazy schedule of mine....thank God it's a seasonal position!!
Figuring out a good diet vs hitting those horrid drugs is nothing less than a miracle. Good for you!! I will definitely figure this out and very determined to do it.
Thanks for replying....have a terrific night!!
Vern or Sue
Good to hear from you!! Yes...I have taken some classes in the past but not for CC..... And I always felt better..stronger....and fit.
I will check out a couple of placses near me and see how I can fit it into this crazy schedule of mine....thank God it's a seasonal position!!
Figuring out a good diet vs hitting those horrid drugs is nothing less than a miracle. Good for you!! I will definitely figure this out and very determined to do it.
Thanks for replying....have a terrific night!!
Vern or Sue