Yes, I am back in a flare :( Almost a year without a problem. The past 2 weeks have been horrendous. Yesterday I woke up and had to run to the potty at 4 AM, and was in there 10 times before 7 AM. Yuk. I feel weak, and cannot seem to eat anything, for about a week now.
My PCP has been great, GI not so much. Blood work came back normal, except the sodium level, which was low. Blood pressure seems to be down pretty low too.
I have to do another round of cultures for the GI - he wants "Routine C & S and C. Diff." What's a routine C & S?
My husband has no faith in this doc - he thinks they are missing something, and I am being overlooked.
Question regarding flares...
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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greengirl78
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Question regarding flares...
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
He's probably referring to a Culture & Sensitivity test, which is simply a series of laboratory tests designed to find out what kind of organisms are causing an infection, and if they are sensitive or resistant to the most commonly used antibiotics.
A C. diff infection, is a definite possibility, considering your symptoms, especially if you are passing any blood.
Considering the luck that many of us have had with our GI docs, your husband is probably correct, just based on odds, alone.
Sorry to hear that you're having such a bad flare. I certainly hope your doc can figure something out, sooner, rather than later.
Tex
A C. diff infection, is a definite possibility, considering your symptoms, especially if you are passing any blood.
Considering the luck that many of us have had with our GI docs, your husband is probably correct, just based on odds, alone.
Sorry to hear that you're having such a bad flare. I certainly hope your doc can figure something out, sooner, rather than later.
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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greengirl78
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Thank you both for your answers.
You are so correct, Rose. Sounds like we have very similar mates.
I am just tired of this... as most others are. I work all day, and try to get through the day the best I can. I am taking a lot of Lomotil these days - my PCP put me on it. All I wanted from the GI was a script for Entocort. He himself told me last August if I happened to have a recurrence, that's what we would do. But all the red tape involved in getting that script is getting me down. I have been waiting 3 weeks, and have to wait until the 15th to see him.
I don't think C. diff is a possibility, I haven't been on antibiotics, nor have I been exposed... that I know of.
At least it's springtime and gardening time. That's the best meditation for me. I know I have to learn how to relax more... I'm wondering how others do it?
You are so correct, Rose. Sounds like we have very similar mates.
I am just tired of this... as most others are. I work all day, and try to get through the day the best I can. I am taking a lot of Lomotil these days - my PCP put me on it. All I wanted from the GI was a script for Entocort. He himself told me last August if I happened to have a recurrence, that's what we would do. But all the red tape involved in getting that script is getting me down. I have been waiting 3 weeks, and have to wait until the 15th to see him.
I don't think C. diff is a possibility, I haven't been on antibiotics, nor have I been exposed... that I know of.
At least it's springtime and gardening time. That's the best meditation for me. I know I have to learn how to relax more... I'm wondering how others do it?
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
Greengirl78,
I exercise to relax and keep sane. I love to run, bike and take long walks to just kind of think things out. I do my best problem solving while I am running. I also do a lot of puzzles, especially winter ones. I use to do counted cross stich, but the arthritis in my hands make it a little difficult.
Tex,
You are too much and I love you for it.
Rose
I exercise to relax and keep sane. I love to run, bike and take long walks to just kind of think things out. I do my best problem solving while I am running. I also do a lot of puzzles, especially winter ones. I use to do counted cross stich, but the arthritis in my hands make it a little difficult.
Tex,
You are too much and I love you for it.
Rose
Greengirl,
Have you tried just asking your PCP for an Entocort prescription? Many members have found that to be much faster and easier than getting it from their GI doc. Once you have a diagnosis of MC, and an initial script for Entocort, most GPs will not hesitate to write a prescription, in order to help out a patient. A phone call might do the trick. It's worth a try, anyway.
Tex
Have you tried just asking your PCP for an Entocort prescription? Many members have found that to be much faster and easier than getting it from their GI doc. Once you have a diagnosis of MC, and an initial script for Entocort, most GPs will not hesitate to write a prescription, in order to help out a patient. A phone call might do the trick. It's worth a try, anyway.
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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greengirl78
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- Location: Massachusetts
Well, that's out. I won't be going on Entocort any time soon. My employer just cut out prescription plan out of our health insurance.
I'm starting to wonder if it's really even worth the effort of trying to get in to see the GI doc.
Perhaps I'll scrape some money together to get the Entorlab testing done, and be done with it once and for all. I know so many of you have had amazing luck with following the gluten free diet... it's just crossing the huge hurtle of becoming gluten free that's in my way. I am a major carb addict.
So, once all the gluten containing ingredients are out of the house, I think I'll embark on it.
As an aside, Trader Joe's makes a fantastic Sweet Potato Bisque which I have been eating for dinner the past few nights. It's dairy and gluten free.
I'm starting to wonder if it's really even worth the effort of trying to get in to see the GI doc.
Perhaps I'll scrape some money together to get the Entorlab testing done, and be done with it once and for all. I know so many of you have had amazing luck with following the gluten free diet... it's just crossing the huge hurtle of becoming gluten free that's in my way. I am a major carb addict.
So, once all the gluten containing ingredients are out of the house, I think I'll embark on it.
As an aside, Trader Joe's makes a fantastic Sweet Potato Bisque which I have been eating for dinner the past few nights. It's dairy and gluten free.
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
Well that's a real bummer. Entocort is pretty rough, without insurance.
I have to agree - unless your GI doc would be able to come up with enough free samples to supply you for a while, there's probably not a lot he or she could do to help.
There's one alternative treatment, that would also answer any question you might have about gluten sensitivity. You could try the Pepto treatment, and if it works, and you don't suffer a relapse, you are home free. If you have a relapse, following the completion of the treatment, then that would be very strong evidence that you are gluten sensitive, according to Dr. Fine.
http://www.finerhealth.com/Educational_ ... litis/FAQ/
Note the last paragraph, concerning the reason why relapses occur.
Tex
I have to agree - unless your GI doc would be able to come up with enough free samples to supply you for a while, there's probably not a lot he or she could do to help.
There's one alternative treatment, that would also answer any question you might have about gluten sensitivity. You could try the Pepto treatment, and if it works, and you don't suffer a relapse, you are home free. If you have a relapse, following the completion of the treatment, then that would be very strong evidence that you are gluten sensitive, according to Dr. Fine.
http://www.finerhealth.com/Educational_ ... litis/FAQ/
Note the last paragraph, concerning the reason why relapses occur.
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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greengirl78
- Adélie Penguin
- Posts: 69
- Joined: Fri Feb 15, 2008 6:36 am
- Location: Massachusetts
Wow. That's some food for thought. I think I will try that out.
I found some interesting info on one of the pages at the Entorlab site regarding who should be tested for gluten sensitivity. I have been diagnosed with a few of those conditions, one of which resolved itself. However, I think the odds are stacked against me... I'm Irish, CC positive... the GI doc took one look at my name at my initial visit with him, and thought I would be a celiac patient.
I have been very hesitant to embark on the gluten free diet, as I am the cook in the house. There are only 2 of us, but I don't feel right changing my husbands diet to suit my needs. Last week he told me that he was more than willing to try it out, if it helped me to become well. I have to admit I'm lazy and don't want to be preparing 2 meals each night.
I am now off to search Dee's recipes, to find alternatives for our meal plan.
Thanks Tex!
I found some interesting info on one of the pages at the Entorlab site regarding who should be tested for gluten sensitivity. I have been diagnosed with a few of those conditions, one of which resolved itself. However, I think the odds are stacked against me... I'm Irish, CC positive... the GI doc took one look at my name at my initial visit with him, and thought I would be a celiac patient.
I have been very hesitant to embark on the gluten free diet, as I am the cook in the house. There are only 2 of us, but I don't feel right changing my husbands diet to suit my needs. Last week he told me that he was more than willing to try it out, if it helped me to become well. I have to admit I'm lazy and don't want to be preparing 2 meals each night.
I am now off to search Dee's recipes, to find alternatives for our meal plan.
Thanks Tex!
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,
During the week I cook three separate meals, one for my 2 kids, one for my husband (he gets home later in the evening, so the kids and I eat together) and one for myself. On the weekends my husband and I usually grill out fish and the kids eat something else, but we all eat together. It is a pain cooking separate meals, but I have been doing it for a long time and am use to it.
Rose
During the week I cook three separate meals, one for my 2 kids, one for my husband (he gets home later in the evening, so the kids and I eat together) and one for myself. On the weekends my husband and I usually grill out fish and the kids eat something else, but we all eat together. It is a pain cooking separate meals, but I have been doing it for a long time and am use to it.
Rose
Greengirl,
I have to agree that when your GI doc jumps to that conclusion, just by seeing your name, that's not a good sign.
I certainly agree with you, though, it's much, much easier to cook the same for everyone in the house, to say nothing of eliminating the risk of cross-contamination. Rose is awesome - her family is incredibly lucky. I have a hunch that if you use Dee's recipes, though, your DH probably won't even notice that the food is GF, most of the time.
Tex
I have to agree that when your GI doc jumps to that conclusion, just by seeing your name, that's not a good sign.
I certainly agree with you, though, it's much, much easier to cook the same for everyone in the house, to say nothing of eliminating the risk of cross-contamination. Rose is awesome - her family is incredibly lucky. I have a hunch that if you use Dee's recipes, though, your DH probably won't even notice that the food is GF, most of the time.
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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RUBYREDDOG
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- Joined: Tue Jun 10, 2008 4:45 pm
- Location: Glendale, Ca.
Greengirl,
I am not suggesting that you try Entocort but I just recently started taking it and obtained the following information:
Entocort is about $900 per month list price for 90 3mg capsules. With insurance I pay $122 per month. I looked on the internet and found it for around $190 and a generic available for $90.
when I checked the Wallmart and Costco web sites they listed no generic available. I did not investigate this further.
Its expensive but if it works for you it's well worth it. YMMV
Hotrod
I am not suggesting that you try Entocort but I just recently started taking it and obtained the following information:
Entocort is about $900 per month list price for 90 3mg capsules. With insurance I pay $122 per month. I looked on the internet and found it for around $190 and a generic available for $90.
when I checked the Wallmart and Costco web sites they listed no generic available. I did not investigate this further.
Its expensive but if it works for you it's well worth it. YMMV
Hotrod