Hi everyone!
I'm new to this so bare with me. I am 35 yrs. old and have been diagnosed with LC for a little over a yr. It was a complete shock to say the least but I have learned so much about this disease since my diagnosis. I'm one of those people who are obsessed with learning everything and anything I can! That sometimes gets me into trouble! Anyways, I am currently in my second flare right now since being diagnosed and I can't complain, my symptoms could be a lot worse! I'm not the typical microscopic colitis case. At my worst, I was only have 1 or 2 episodes of loose stool a day but I had nausea and just an unwell feeling, and losing weight that I knew something wasn't right. It def wasn't my normal! Fast forward my initial treatment was entocort and I felt great and back to normal probably within 4 wks or so after starting it. Took it for about 12 wks and was done. It took about a couple months before it slowly came back but I dealt with it by sticking to a partial gf diet and eliminating dairy, for the most part. I had to go back onto entocort the beginning of this yr again and this time, same results but my doctor wants be on it longer. Anyways, my daughter came down with a stomach bug last wk and of course I got it! No vomiting for me, just intense stomach pains/cramping and diarrhea, although not a lot. My question is, I am going on day 5 if this and still have the diarrhea and stomach pain, even while still on the entocort. Is this normal? I have never had a stomach virus that lasted this long and I'm still only eating bland foods and still having diarrhea? Shouldn't the entocort be helping with this or is it masking my symptoms? My doctor said give it a couple of days. I'm worried that the 8 or 9 wks worth of treatment using the entocort is now going to be jeopardized by this virus? Is this"normal" for it to drag out or should I be concerned? I'm so sorry this is so long!!!I
New here and have a few questions
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HI Tas. Welcome to the site. It's great for someone like you who wants to learn as much as you can about this disease. Buying Tex's book that is pictured in the right hand corner of this site is a great place to start. Just click on it.
As for you getting a bug…well, most of us would have a flare if we contracted a stomach virus and most of us would react more to it than a "regular" person. It will take time.
Understanding the use of Entocort might help. It is a steroid and helps with inflammation, but does nothing to "cure" or heal your gut.So, if you continue to eat food that is causing the inflammation, then you will continue to flare. Also with this drug, it seems that the more times you go back on it, the less effective it gets. The solution is to stay on it for at least 4 months WHILE YOU CHANGE YOUR DIET COMPLETELY. And SLOWLY TAPER THE DOSE down when you start to get slightly constipated each time. I was on it for 6 months, but tapered down to a low dose fairly quickly. That was three years ago and I have never had to go back on it. The key is the diet.
There is no such thing as "mostly gluten free". If your body is producing antibodies to gluten, even a tiny amount will cause issues. Almost all of us are gluten free. Most of us are dairy free, many of us are soy free and then there are those that even are egg sensitive. There is a lab you can send a stool sample to that tests for antibodies. Google "Enterolab". Also during the healing process, it's a good idea to cut out fiber, RAW fruits and veggies, caffeine, too much sugar…. these all can put off healing. We each have to figure out our own diet, but please know that if you do the work now, you will be able to add many foods back in once you have healed and are off the drug. Entocort does mask food intolerances.
I am sure others will chime in. Good luck
Leah
As for you getting a bug…well, most of us would have a flare if we contracted a stomach virus and most of us would react more to it than a "regular" person. It will take time.
Understanding the use of Entocort might help. It is a steroid and helps with inflammation, but does nothing to "cure" or heal your gut.So, if you continue to eat food that is causing the inflammation, then you will continue to flare. Also with this drug, it seems that the more times you go back on it, the less effective it gets. The solution is to stay on it for at least 4 months WHILE YOU CHANGE YOUR DIET COMPLETELY. And SLOWLY TAPER THE DOSE down when you start to get slightly constipated each time. I was on it for 6 months, but tapered down to a low dose fairly quickly. That was three years ago and I have never had to go back on it. The key is the diet.
There is no such thing as "mostly gluten free". If your body is producing antibodies to gluten, even a tiny amount will cause issues. Almost all of us are gluten free. Most of us are dairy free, many of us are soy free and then there are those that even are egg sensitive. There is a lab you can send a stool sample to that tests for antibodies. Google "Enterolab". Also during the healing process, it's a good idea to cut out fiber, RAW fruits and veggies, caffeine, too much sugar…. these all can put off healing. We each have to figure out our own diet, but please know that if you do the work now, you will be able to add many foods back in once you have healed and are off the drug. Entocort does mask food intolerances.
I am sure others will chime in. Good luck
Leah
Thanks for the response, I appreciate it! I started or should say attempted gf over 2 yrs ago before the issue of LC ever occurred. I can't say it did wonders for me but I wasn't having a lot of gut issues or diarrhea back than either. I was surprised after I got the diagnosis because I was told horror stories and read stories about microscopic colitis and I was scratching my head because I wasn't the "typical" case. Even my GI doctor had doubts. Anyways, I do believe that going even gf a little prior to helped with it maybe not turning out as bad as it could of. I don't know if that's why but I can't help but think. I would say I'm about 90% gf even though its not 100%. I do cheat and need to work on it better. I just love bread do much!!! :) First time on Entocort I took 9mg for 8wks, than 6mg for 2 wks and 3mg for 2 wks I believe. This time around, I was started on 9mg for 12 wks ( which I'm still on), than I am to do the 6mg for 4 wks and than 3mg for 8ks. My doctor is hoping that that puts a punch in it. We shall see I guess. I had bloodwork done to test for celiac disease last summer but it came back neg. I know thats not to reliable either. I had an endoscopy 4 yrs ago and biopsy was negative. I'm just terrified of getting anything viral, esp stomach viruses because I never know what they are going to do and this time it was worse because of already being on a steroid like Entocort. Seems to me like it is delaying my recovery.
Hi,
Welcome to the board. Leah's post is right on target, and I don't have much to add at this point.
Please be aware that more than a few of us started out with experiences similar to you. Initially, I though that I had a virus. But after it came back a few months later, and then I relapsed again a few months after that, I thought that maybe I was getting food poisoning because I ate at many fast food places while making deliveries. But after a year or 2 of occasional episodes, one day the D started and wouldn't stop.
IOW, it can (and usually does) get worse with the passage of time. It's pretty easy to be casual about it early on if the symptoms are mild, and I was just like you — it didn't seem like anything to be concerned about. But eventually it became so bad that it left no choice but to get serious about treating it, or stay close to the bathroom.
I hope that you will continue to be one of the lucky few, and your symptoms will remain mild, but as most of us here have found, MC can be a very insidious and unforgiving disease. And Leah is quite correct — research verifies that budesonide (Entocort) slowly loses effectiveness for treating the disease with each occasion that it is stopped and restarted. And corticosteroids do not actually heal the gut. Research shows that they actually retard healing (because inflammation is a necessary part of the healing cycle). They suppress the inflammation, but they cannot prevent the inflammation from being regenerated, so a relapse is virtually guaranteed at some point as long as we continue to eat the foods that cause the production of antibodies.
Corticosteroids will suppress our antibody levels. But once the treatment is ended, any exposure to gluten (or other foods to which we react) will cause our antibody level to begin to rise again, and the longer we continue to allow the exposure, the higher the antibody level will climb. Eventually our antibody level will exceed our immune system's tolerance threshold and we will begin to react again (with active MC). That's how the cycle goes, unless we stop it by changing our diet permanently, to avoid all foods that cause us to react.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. Leah's post is right on target, and I don't have much to add at this point.
Please be aware that more than a few of us started out with experiences similar to you. Initially, I though that I had a virus. But after it came back a few months later, and then I relapsed again a few months after that, I thought that maybe I was getting food poisoning because I ate at many fast food places while making deliveries. But after a year or 2 of occasional episodes, one day the D started and wouldn't stop.
IOW, it can (and usually does) get worse with the passage of time. It's pretty easy to be casual about it early on if the symptoms are mild, and I was just like you — it didn't seem like anything to be concerned about. But eventually it became so bad that it left no choice but to get serious about treating it, or stay close to the bathroom.I hope that you will continue to be one of the lucky few, and your symptoms will remain mild, but as most of us here have found, MC can be a very insidious and unforgiving disease. And Leah is quite correct — research verifies that budesonide (Entocort) slowly loses effectiveness for treating the disease with each occasion that it is stopped and restarted. And corticosteroids do not actually heal the gut. Research shows that they actually retard healing (because inflammation is a necessary part of the healing cycle). They suppress the inflammation, but they cannot prevent the inflammation from being regenerated, so a relapse is virtually guaranteed at some point as long as we continue to eat the foods that cause the production of antibodies.
Corticosteroids will suppress our antibody levels. But once the treatment is ended, any exposure to gluten (or other foods to which we react) will cause our antibody level to begin to rise again, and the longer we continue to allow the exposure, the higher the antibody level will climb. Eventually our antibody level will exceed our immune system's tolerance threshold and we will begin to react again (with active MC). That's how the cycle goes, unless we stop it by changing our diet permanently, to avoid all foods that cause us to react.
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 the reply back Tex! Appreciate all the advice. I have no doubt in my mind that I have LC. I just knew something wasn't right with me when it started. It was just hard to believe because I didn't have the textbook symptoms. Prior to the diagnoses, I had an elevated crp and they did some kind of ibd prometheus (?) Blood test and that showed an elevation for UC so my doctor decided it was best to do an colonoscopy and here I am today. It wasn't my decision to go on Entocort. My doctor told me that was the standard treatment for LC. I wasn't real happy because I knew about the drug when I took it yrs ago for or ulcers in my terminal ileum (?). Not knowing anything about mc, I reluctantly did the treatment. I don't regret it now because it did make feel a lot better but I def don't want it to be a long term treatment either. I'm still not thrilled about the set up I'm on now but my doctor said there are not other options that work as well. He is also a believer that going gf will not change mc either. I choose not to disagree and keep my opinions to myself. With all that being said, when and if you guys get a virus like the stomach bug, what do you do to make yourselves better? Do you just stick with your diets and that caused you not to go in a flare? Does or has the symptoms of the virus lasted longer for you in your opinions? This is my first time dealing with a virus like this since being diagnosed And topping it off taking entocort when it hits!
Tas, Doctors know virtually nothing about the connection that food has to MC. It's very frustrating. There are people on this forum who have opted to not take Entocort ( or can't because they react negatively to it) and heal themselves with diet alone. It can be done, but using the drug in conjunction with diet is a lot easier because the drug takes way the worst of the symptoms. No matter how long you are on Entocort, you will relapse if you don't figure out what foods inflame your gut. And remember, that the tapering is very individual. I was able to drop to 6 mg. After a month and down to 3 mg. after two months ( probably because I was very strict with my diet). Just remember; if you start to feel constipated, THAT is the time to drop the dose.
When it comes to stomach viruses, yes, they can be tough on us and can take longer to feel right again. Most of us go back to the diet we first started with to heal. Bone broth, freshly cooked meats, very cooked easy to digest veggies ( like squash,carrots, greanbeans), rice and it's products, Chex cereals with almond milk…etc.
Hope you feel better soon
leah
When it comes to stomach viruses, yes, they can be tough on us and can take longer to feel right again. Most of us go back to the diet we first started with to heal. Bone broth, freshly cooked meats, very cooked easy to digest veggies ( like squash,carrots, greanbeans), rice and it's products, Chex cereals with almond milk…etc.
Hope you feel better soon
leah
Yes, the intestinal inflammation caused by a stomach or intestinal virus can trigger an MC relapse, so we may have to get serious about our diet in order to stop the reaction. I totally agree with Leah. If we've been in remission for a while, and we've been able to add certain foods such as raw vegetables, more sugar, fiber, etc., back into our diet, then we just drop back to the bland, safe diet that we used to reach remission, as Leah suggested.
If you're faithful to your diet, so that your inflammation level is consistently low (and you've been in remission for a relatively long while), then an accidental gluten event or a virus will usually not last as long as it did earlier in your recovery. IOW as time passes, your reactions should be milder and shorter (provided that you don't cheat on your diet).
Tex
If you're faithful to your diet, so that your inflammation level is consistently low (and you've been in remission for a relatively long while), then an accidental gluten event or a virus will usually not last as long as it did earlier in your recovery. IOW as time passes, your reactions should be milder and shorter (provided that you don't cheat on 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.