Seems like a lot of us are flaring right now, wonder if the seasonal change has much to do with it?
Tex, so glad to hear that you were able to get yourself taken care of - please take the time to rest up well before beginning work again! I continuously amazed with the positive outlook you seem to have, no matter what you may be going through!
The flare started around Christmas, and for the New Year I began the GF/DF diet with not much luck. I think I may have to cut out soy and eggs too.
I am still working on it, and holding out hope that with a quick course of Entocort I will be able to beat this flare down. I have been taking 2 lomotil each morning when I have to work, and they weren't touching it. Finally, I put a call into the doc, and went to see them today.
Back on the Entocort tomorrow.
Scary thing this go round is the fever. It has been constant at 101 for about 2 weeks now. Has anyone else ever had a fever when flaring?
In 3 years I have had 7 flares. Is that a lot? This is my sixth time on Entocort, yikes.
Oh, has anyone here tried coconut milk? High in potassium, with no added sugar. Not the best taste, but much better than Gatorade.
Ugh Another Flare ...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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greengirl78
- Adélie Penguin
- Posts: 69
- Joined: Fri Feb 15, 2008 6:36 am
- Location: Massachusetts
Ugh Another Flare ...
If we are peaceful, if we are happy, we can blossom like a flower, and everyone in our family, our entire society, will benefit from our peace. - Thich Nhat Hahn
Greengirl,
It's not impossible to have fever with MC, but it's not common, and it really shouldn't be that high. I wonder if you might have picked up a C-diff infection. Is your doc aware of your fever? You might not have C-diff, but it's a prime suspect, and whatever it is, I'm pretty sure that something besides MC is going on. If I were in your shoes, I would ask my doc to do a stool test for C-diff, and discuss any other possibilities that he or she might be able to think of.
If you have C-diff, the Entocort will not help.
Tex
P. S. No, that's not an unusual number of flares - most of us would probably react continuously, if we didn't continue our treatment program at all times.
It's not impossible to have fever with MC, but it's not common, and it really shouldn't be that high. I wonder if you might have picked up a C-diff infection. Is your doc aware of your fever? You might not have C-diff, but it's a prime suspect, and whatever it is, I'm pretty sure that something besides MC is going on. If I were in your shoes, I would ask my doc to do a stool test for C-diff, and discuss any other possibilities that he or she might be able to think of.
If you have C-diff, the Entocort will not help.
Tex
P. S. No, that's not an unusual number of flares - most of us would probably react continuously, if we didn't continue our treatment program at all times.
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.
I would tend to agree that a temp that high for that long is not an indication of an MC flair. I would think there would be something else going on. Take care of yourself and maybe call your doctor.
Hugs,
Mars
Hugs,
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Greengirl,
I hope this doesn't come off as bitchy or insensitive, but medications are never going to stop or cure what ails you. I'm relatively new here, so you are new to me and I don't know if you have MC, and I'm guessing you have been or you wouldn't be here in the first place. If you haven't been tested for gluten sensitivity yet, and you have been eating gluten as recently as the New Year, then a short time of not eating gluten isn't any kind of "test" for GS. I'd had nonstop D for 2 1/2 years and it didn't stop until 3 wks of OTC meds after my dx w/MC via colonoscopy 3 mos after I'd stopped eating gluten. My genetic tests were done after that and I was still highly reactive to gluten, as well as positive for GS via genetic tests.
I know many people here have been helped by steroids, but I am scared to death of them and I have successfully stopped all my symptoms of MC w/o drugs and by giving up gluten. Fortunately I do not have MI, although I do think I may have a slight reaction to soy.
When I was at my worst, explosive D all day, I frequently ran a fever for weeks. I was tested for everything from MRSA, CDiff, STD's, HLA B27, Hepatitis, Rheumatoid arthritis, psoriatic arthritis, and I'm sure there are more, all were negative.
I have no problems with coconut milk, and coconut oil was a part of my early regimen for treating my MC. You are 31 and this is your 6th time on Entocort...think about it, research it, you will not be 31 forever. The longer you continue to tempt fate, the sooner you will realize that you could have done something about it now.
You need to know if gluten is your problem, if you haven't been tested already - do it, you can go on from there.
I hope this doesn't come off as bitchy or insensitive, but medications are never going to stop or cure what ails you. I'm relatively new here, so you are new to me and I don't know if you have MC, and I'm guessing you have been or you wouldn't be here in the first place. If you haven't been tested for gluten sensitivity yet, and you have been eating gluten as recently as the New Year, then a short time of not eating gluten isn't any kind of "test" for GS. I'd had nonstop D for 2 1/2 years and it didn't stop until 3 wks of OTC meds after my dx w/MC via colonoscopy 3 mos after I'd stopped eating gluten. My genetic tests were done after that and I was still highly reactive to gluten, as well as positive for GS via genetic tests.
I know many people here have been helped by steroids, but I am scared to death of them and I have successfully stopped all my symptoms of MC w/o drugs and by giving up gluten. Fortunately I do not have MI, although I do think I may have a slight reaction to soy.
When I was at my worst, explosive D all day, I frequently ran a fever for weeks. I was tested for everything from MRSA, CDiff, STD's, HLA B27, Hepatitis, Rheumatoid arthritis, psoriatic arthritis, and I'm sure there are more, all were negative.
I have no problems with coconut milk, and coconut oil was a part of my early regimen for treating my MC. You are 31 and this is your 6th time on Entocort...think about it, research it, you will not be 31 forever. The longer you continue to tempt fate, the sooner you will realize that you could have done something about it now.
You need to know if gluten is your problem, if you haven't been tested already - do it, you can go on from there.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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greengirl78
- Adélie Penguin
- Posts: 69
- Joined: Fri Feb 15, 2008 6:36 am
- Location: Massachusetts
Thanks everyone. I'm doing the stool tests for her, to check for c. diff, and all the others. She also took a bunch of blood to check everything else out. I refused to go back to the GI doc, and thankfully my GP is on top of things, and understanding.
Starting the Entocort today, because sometimes I just need an extra boost to get this kicked out of my system. I would like to have the tests done, but with an unemployed husband we don't have the $ kicking around to do so. Thankfully I have health insurance which covers the Entocort and Lomotil. That's why I am trying the diet on my own.
Stanz - I am happy for you that the tests have worked out, and that you have found a natural way of healing yourself.
I know I'm 31, and on Entocort for the 6th time. I need it at times to straighten my system out, as do many others on this board. It's really not as bad as Pred, thankfully. I am trying to do the best I can with what I have. I believe much more in dietary changes, and herbs than I do the medical profession at times, but sometimes we have to do what works for us. I'm in a very high stress job, and about to start the season in less than 3 weeks, so I need something to get this under control - I can't afford to lose my job due to sick days. My energy levels are so depleted that I need to get them back up to be able to do my job.
Thank you all for your help.
Starting the Entocort today, because sometimes I just need an extra boost to get this kicked out of my system. I would like to have the tests done, but with an unemployed husband we don't have the $ kicking around to do so. Thankfully I have health insurance which covers the Entocort and Lomotil. That's why I am trying the diet on my own.
Stanz - I am happy for you that the tests have worked out, and that you have found a natural way of healing yourself.
I know I'm 31, and on Entocort for the 6th time. I need it at times to straighten my system out, as do many others on this board. It's really not as bad as Pred, thankfully. I am trying to do the best I can with what I have. I believe much more in dietary changes, and herbs than I do the medical profession at times, but sometimes we have to do what works for us. I'm in a very high stress job, and about to start the season in less than 3 weeks, so I need something to get this under control - I can't afford to lose my job due to sick days. My energy levels are so depleted that I need to get them back up to be able to do my job.
Thank you all for your help.
If we are peaceful, if we are happy, we can blossom like a flower, and everyone in our family, our entire society, will benefit from our peace. - Thich Nhat Hahn
Greengirl,
You're right - especially in the current economy, we have to do the best we can, with what we have available. The combination of the diet, and Entocort, should hopefully have you back in remission before those 3 weeks are up, and if not, at least you should be very close to remission, by then.
Best of luck on your journey back to remission,
Tex
You're right - especially in the current economy, we have to do the best we can, with what we have available. The combination of the diet, and Entocort, should hopefully have you back in remission before those 3 weeks are up, and if not, at least you should be very close to remission, by then.
Best of luck on your journey back to remission,
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.