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Rose,
C. diff usually causes some pretty severe cramping. I get the impression that your symptoms are worse now, than at any time in the past - or am I wrong? If that's so, then it would seem logical that something else is going on, in addition to CC. Still, if it were a bacterial infection, or a parasite, then Entocort should not have helped, since it has absolutely no antibiotic effects. Of course, since Entocort is an immune system suppressant, I suppose it's possible that you could have picked up C. diff after discontinuing the Entocort, but that would be pretty close timing.
With that much D, dehydration is a constant threat, and dehydration can, of course, cause D, itself. There could be a lot of complicating factors involved.
Love,
Tex
Just a little frustrated
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Tex,
I do not have severe cramping and fortunately the watery d has subsided. But you are correct in that I have never had d with that kind of frequency b/f. I have had nights where I was up 3 or 4 times, but not 11 in 2 hours. Right now I am mush. I at least got some sleep last night b/f I had a conference call come in, but just 2, not 11 and so far today I have only gone 8 times. It may be that I am coming down with something as this morning I woke up with a bad sore scratchy throat. My kids have had stuffed up noses, but they do not have the flu by any means since that is their only symptom.
Love,
Rose
I do not have severe cramping and fortunately the watery d has subsided. But you are correct in that I have never had d with that kind of frequency b/f. I have had nights where I was up 3 or 4 times, but not 11 in 2 hours. Right now I am mush. I at least got some sleep last night b/f I had a conference call come in, but just 2, not 11 and so far today I have only gone 8 times. It may be that I am coming down with something as this morning I woke up with a bad sore scratchy throat. My kids have had stuffed up noses, but they do not have the flu by any means since that is their only symptom.
Love,
Rose
Rose,
Thank goodness for that amount of improvement, at least. It's a shame that it had to be traded for a sore throat, but hopefully the new symptoms won't develop past the nuisance stage, and whatever it is will run it's course quickly.
Please keep us posted on how you're doing, because you were getting close to being an ER candidate, the way things were going.
Love,
Tex
Thank goodness for that amount of improvement, at least. It's a shame that it had to be traded for a sore throat, but hopefully the new symptoms won't develop past the nuisance stage, and whatever it is will run it's course quickly.
Please keep us posted on how you're doing, because you were getting close to being an ER candidate, the way things were going.
Love,
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.
Rose,
Are you eating rice or potatoes? We certainly could be different, so this may not work for you, but I have had a tremendous decrease in volume and frequency since I gave those two up. To keep my weight up I have to eat a lot of fat which has been difficult for me but I have learned.
Glad you are somewhat better.
Pat
Are you eating rice or potatoes? We certainly could be different, so this may not work for you, but I have had a tremendous decrease in volume and frequency since I gave those two up. To keep my weight up I have to eat a lot of fat which has been difficult for me but I have learned.
Glad you are somewhat better.
Pat
Rose,
Yep, one of the hazards of really hostile bouts of D, is irritated hemorrhoids, and most of us have been through that a time or three.
Be aware, though, that blood in the stool is also one of the classic markers of a C. diff infection, (though in the early stages of a C. diff infection, blood may not be present, and sometimes it's not always present in later stages).
If you're doing that much better today, the blood was probably just from 'roids.
Love,
Tex
Yep, one of the hazards of really hostile bouts of D, is irritated hemorrhoids, and most of us have been through that a time or three.
Be aware, though, that blood in the stool is also one of the classic markers of a C. diff infection, (though in the early stages of a C. diff infection, blood may not be present, and sometimes it's not always present in later stages).
If you're doing that much better today, the blood was probably just from 'roids.
Love,
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.
Tex,
Well it was another night of water d. I was not up as much as the night b/f. I had it b/f I went to bed and then got up 4 times with it. I did eat organic chicken again, just to see if this was a trigger or not (and you know the problems I have been having with chicken) so it might be from that. It would be really weird that I can eat turkey, but not chicken though wouldn't it?
Anyway, I seem to be ok this am, just tired. My dh took the kids yesterday to see his parents at their cabin in Helen GA and thank goodness I didn't go (not that I could make the 4 hour trip anyway - not a lot of bathrooms in the route there) since they only have 1 bathroom at the cabin. It would have been a disaster. It is bad enough that gas station bathrooms look better than mine after these episodes. All I do is clean and disinfect them daily.
When I go to my GP on Thursday I am going to ask him to test me for the C. diff, you can believe me on this.
Love,
Rose
Well it was another night of water d. I was not up as much as the night b/f. I had it b/f I went to bed and then got up 4 times with it. I did eat organic chicken again, just to see if this was a trigger or not (and you know the problems I have been having with chicken) so it might be from that. It would be really weird that I can eat turkey, but not chicken though wouldn't it?
Anyway, I seem to be ok this am, just tired. My dh took the kids yesterday to see his parents at their cabin in Helen GA and thank goodness I didn't go (not that I could make the 4 hour trip anyway - not a lot of bathrooms in the route there) since they only have 1 bathroom at the cabin. It would have been a disaster. It is bad enough that gas station bathrooms look better than mine after these episodes. All I do is clean and disinfect them daily.
When I go to my GP on Thursday I am going to ask him to test me for the C. diff, you can believe me on this.
Love,
Rose
Rose,
Yes, it would be unusual if you could safely eat turkey, but not chicken. The amino acid sequences of turkey and chicken protein are very, very similar. Turkey contains about 5% more protein, but interestingly, they both have the same amount of tryptophan, even though almost everyone thinks that turkey contains much more tryptophan, (since it's thought to be the reason why many people feel sleepy after eating a turkey dinner).
I agree - the possibility of a C. diff infection should definitely by checked out, because symptoms can vary a lot, and that's presumably why so many doctors so often fail to recognize it and test for it.
Thursday is still a long way off, (especially when your symptoms are so significant), so I hope that your symptoms give you a break, whenever possible.
Love,
Tex
Yes, it would be unusual if you could safely eat turkey, but not chicken. The amino acid sequences of turkey and chicken protein are very, very similar. Turkey contains about 5% more protein, but interestingly, they both have the same amount of tryptophan, even though almost everyone thinks that turkey contains much more tryptophan, (since it's thought to be the reason why many people feel sleepy after eating a turkey dinner).
I agree - the possibility of a C. diff infection should definitely by checked out, because symptoms can vary a lot, and that's presumably why so many doctors so often fail to recognize it and test for it.
You know, that's probably one of the cruelest and least publicized aspects of MC, (many patients are embarrassed to even bring it up). The sicker we are, (and the least able we are, to take on extra work), the more likely we are to have accidents that require a maximum amount of cleanup effort. The disease truly sucks.Rose wrote:All I do is clean and disinfect them daily.
Thursday is still a long way off, (especially when your symptoms are so significant), so I hope that your symptoms give you a break, whenever possible.
Love,
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.
Tex,
I spoke to my husband and my MIL (a retired nurse) this morning and she told me that she brought up the C. diff last year, but I don't remember that conversation with her. She is very much in agreement with you on this and wants me to get this checked out as well. I am also going to make an appointment with another GI in town as well. I just can't understand why my old GI would not have looked in to this b/c I had this type of last year and told him of all my symptoms. I guess that he stopped at the small bowel bacterial overgrowth. Who knows.
Believe me I don't like to have too many people over, luckily we have 5 bathrooms, unfortunately, I have to clean them all. I am an equal opportunity pooper. I leave no toilet unturned. LOL.
Love,
Rose
I spoke to my husband and my MIL (a retired nurse) this morning and she told me that she brought up the C. diff last year, but I don't remember that conversation with her. She is very much in agreement with you on this and wants me to get this checked out as well. I am also going to make an appointment with another GI in town as well. I just can't understand why my old GI would not have looked in to this b/c I had this type of last year and told him of all my symptoms. I guess that he stopped at the small bowel bacterial overgrowth. Who knows.
Believe me I don't like to have too many people over, luckily we have 5 bathrooms, unfortunately, I have to clean them all. I am an equal opportunity pooper. I leave no toilet unturned. LOL.
Love,
Rose
Rose,
Many in the medical profession prefer to refer to C. diff as pseudomembranous colitis, which is a more generic term, referring simply to a bacterial infection of the colon. In most cases, the infection is indeed due to C. diff, but sometimes it is caused by other types of bacteria. Your MIL may have referred to it this way, which is why it didn't register, at the time.
As to why so many GI doctors seem to overlook issues such as this, that probably has something to do with the fact that they see a lot of patients, and even though they have your medical record right there in front of them, many fail to take the time to do more than glance at it. Also, with busy appointment schedules, and all sorts of thoughts demanding attention in their brain, (such as the economy, and tomorrow's golf game), they simply don't take the time to actually think about each case, in an objective manner, (and many of us question whether or not they actually pay any attention to what we tell them, anyway). Now I'm not talking about all of the GI docs, all of the time, because there are exceptions, but I think you know what I mean.
Anyway, IMO, this "syndrome", that seems to affect many medical specialists, (and GI docs, in particular), is probably due to the fact that they don't get paid for resolving issues, symptoms, cases, or anything else along those lines - they get paid simply for seeing patients. Regardless of how high one's ethical standards might be, when we get paid whether we perform or not, it's only human nature to get lazy. At least, that's my opinion of one of the medical community's major problems. No other professionals get paid, whether they perform or not, (except maybe for some of AIG's top executives. LOL).
Since MC is an equal opportunity disease, I have a hunch that virtually all of us have the same policy as you, regarding bathrooms.
Love,
Tex
Many in the medical profession prefer to refer to C. diff as pseudomembranous colitis, which is a more generic term, referring simply to a bacterial infection of the colon. In most cases, the infection is indeed due to C. diff, but sometimes it is caused by other types of bacteria. Your MIL may have referred to it this way, which is why it didn't register, at the time.
As to why so many GI doctors seem to overlook issues such as this, that probably has something to do with the fact that they see a lot of patients, and even though they have your medical record right there in front of them, many fail to take the time to do more than glance at it. Also, with busy appointment schedules, and all sorts of thoughts demanding attention in their brain, (such as the economy, and tomorrow's golf game), they simply don't take the time to actually think about each case, in an objective manner, (and many of us question whether or not they actually pay any attention to what we tell them, anyway). Now I'm not talking about all of the GI docs, all of the time, because there are exceptions, but I think you know what I mean.
Anyway, IMO, this "syndrome", that seems to affect many medical specialists, (and GI docs, in particular), is probably due to the fact that they don't get paid for resolving issues, symptoms, cases, or anything else along those lines - they get paid simply for seeing patients. Regardless of how high one's ethical standards might be, when we get paid whether we perform or not, it's only human nature to get lazy. At least, that's my opinion of one of the medical community's major problems. No other professionals get paid, whether they perform or not, (except maybe for some of AIG's top executives. LOL).
Since MC is an equal opportunity disease, I have a hunch that virtually all of us have the same policy as you, regarding bathrooms.
Love,
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.
Tex,
I agree on the fact that a majority of today's doctors are all about how many patients they can see. But you would think that b/f you ship me off to Mayo Clinic (as he is very adamite about) that he would preform any and all tests and leave no stone unturned. Especially since he says that "I think that there is something else going on with you, but I just can not seem to find it." Well look for it dammit.
It is very frustrating, but life and cc goes on. All we do here in this house is basically keep out cense of humor and laugh about our lives with it. My dh and I believe that strongly b/c our kids are always looking to us for a reaction. When my daughter plays with her Barbies she'll say things like "let's cook something without gluten in it" or "I can't eat that b/c it has gluten in that." Kids are so funny. But when she was sick over Christmas, she had a little d and she freaked out saying "do I have what Mommy has." My heart just broke.
Love,
Rose
I agree on the fact that a majority of today's doctors are all about how many patients they can see. But you would think that b/f you ship me off to Mayo Clinic (as he is very adamite about) that he would preform any and all tests and leave no stone unturned. Especially since he says that "I think that there is something else going on with you, but I just can not seem to find it." Well look for it dammit.
It is very frustrating, but life and cc goes on. All we do here in this house is basically keep out cense of humor and laugh about our lives with it. My dh and I believe that strongly b/c our kids are always looking to us for a reaction. When my daughter plays with her Barbies she'll say things like "let's cook something without gluten in it" or "I can't eat that b/c it has gluten in that." Kids are so funny. But when she was sick over Christmas, she had a little d and she freaked out saying "do I have what Mommy has." My heart just broke.
Love,
Rose
Rose,
Well, it's possible that your GI doc does have your best interest at heart. IOW, if he really doesn't have the foggiest idea what to do next, then suggesting that you go to the Mayo Clinic, may, (in his eyes, at least), be considered to be helpful advice. A lot of GI docs get frustrated when they can't help a patient with MC, and instead of spending some serious time trying to learn more about the disease, they seem to prefer to send those patients "to the next level" in the system, (IOW, get them out of their sight). Unfortunately, if you read what the Mayo Clinic says about treating MC, on their website, you will discover that they may not be much more knowledgeable about treating the disease than your current GI doc, (unless they've updated it since the last time I checked there). We have had members, (I don't recall how many), who have gone to the Mayo Clinic, seeking help for their MC, but I don't recall anyone mentioning that they were able to achieve remission from what they learned there, unless my memory is playing tricks on me. IOW, unless they have seen the light quite recently, the doctors at the Mayo are not aware of the connection between MC and food intolerances. They do recognize that MC can be connected with other autoimmune diseases, (including celiac disease), but the treatment options that they mention include drugs, and/or surgery, (but not dietary changes).
I agree with you. I find it rather pathetic that so many GI docs would rather send a patient on, than to take the time to learn as much as they can about the disease, so that they can learn how to treat it. They are supposed to be experts on GI issues, but maybe they feel that just having that certificate on the wall, (proclaiming them to be an expert), is sufficient, and they don't feel the obligation to continue their education, as needed. I suppose many of them feel that MC is a rare disease, (as the medical journals claim), so they don't feel compelled to learn how to properly treat such a "rare" disease.
Love,
Tex
Well, it's possible that your GI doc does have your best interest at heart. IOW, if he really doesn't have the foggiest idea what to do next, then suggesting that you go to the Mayo Clinic, may, (in his eyes, at least), be considered to be helpful advice. A lot of GI docs get frustrated when they can't help a patient with MC, and instead of spending some serious time trying to learn more about the disease, they seem to prefer to send those patients "to the next level" in the system, (IOW, get them out of their sight). Unfortunately, if you read what the Mayo Clinic says about treating MC, on their website, you will discover that they may not be much more knowledgeable about treating the disease than your current GI doc, (unless they've updated it since the last time I checked there). We have had members, (I don't recall how many), who have gone to the Mayo Clinic, seeking help for their MC, but I don't recall anyone mentioning that they were able to achieve remission from what they learned there, unless my memory is playing tricks on me. IOW, unless they have seen the light quite recently, the doctors at the Mayo are not aware of the connection between MC and food intolerances. They do recognize that MC can be connected with other autoimmune diseases, (including celiac disease), but the treatment options that they mention include drugs, and/or surgery, (but not dietary changes).
I agree with you. I find it rather pathetic that so many GI docs would rather send a patient on, than to take the time to learn as much as they can about the disease, so that they can learn how to treat it. They are supposed to be experts on GI issues, but maybe they feel that just having that certificate on the wall, (proclaiming them to be an expert), is sufficient, and they don't feel the obligation to continue their education, as needed.
I suppose many of them feel that MC is a rare disease, (as the medical journals claim), so they don't feel compelled to learn how to properly treat such a "rare" disease.Love,
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.
Tex,
That was one of the main reasons I did not go to Mayo in February (as scheduled) b/c I read their treatment plan and I told my dh that it is the same thing that I just went through, least according to their web site, so why go and and waste the $$$. B/s, I think that Pat went and she said that they told her to remove her colon.
Personally, I think that my GI just wanted to get me out the door. He told me that he has "lots of patients with cc and I am the only one that has not responded to meds." I remember when he did the endoscopy way back when that he told me and my dh that "oh, I know she will be back in a couple of months with more problems and we will have to have a colonoscopy." Can you believe that? If he would have done the scope at that time I would not have wasted another 2 or 3 years not knowing what the heck was going on.
Love,
Rose
That was one of the main reasons I did not go to Mayo in February (as scheduled) b/c I read their treatment plan and I told my dh that it is the same thing that I just went through, least according to their web site, so why go and and waste the $$$. B/s, I think that Pat went and she said that they told her to remove her colon.
Personally, I think that my GI just wanted to get me out the door. He told me that he has "lots of patients with cc and I am the only one that has not responded to meds." I remember when he did the endoscopy way back when that he told me and my dh that "oh, I know she will be back in a couple of months with more problems and we will have to have a colonoscopy." Can you believe that? If he would have done the scope at that time I would not have wasted another 2 or 3 years not knowing what the heck was going on.
Love,
Rose
Yes, I can certainly believe that. My impression is that doctors have their own personal "scripts" that they follow with various categories of patients. It's a game refereed by the insurance companies and the lawyers. It's frustrating, but I'm sure that the doctors learn early on, that if they deviate too far from the "prescribed" game plan, they get in trouble, and have to spend a bunch of time, (and maybe money), correcting their "mistakes", so they learn to just plod along, and play the game by the "rules". It's no wonder they don't seem to have any incentive to be more responsive to patients' needs.Rose wrote:He told me that he has "lots of patients with cc and I am the only one that has not responded to meds." I remember when he did the endoscopy way back when that he told me and my dh that "oh, I know she will be back in a couple of months with more problems and we will have to have a colonoscopy." Can you believe that?
That business about him having lots of patients with CC, though, and you being the only one who has not responded to meds, is, IMO, a severe distortion of the facts, (that sounds so much better than "a baldfaced lie". LOL). First off, unless he has been a GI doc "forever", and he practices in a very large population center, it's unlikely that he has "lots" of patients with CC - there aren't that many around, in any particular area. And, since virtually all of us have heard the same line from our own GI docs, either the balance of that claim is another misrepresentation of the facts, or all those GI docs are confused and confounded by the facts. My opinion is that the majority of patients finally get frustrated, after nothing seems to work, and they stop coming back. When they don't return, the GI doc conveniently "assumes" that the treatment was successful, and chalks them up as another glowing success story. You and I know that most patients would require those meds for the rest of their lives, but since the GI docs don't know that, they never wonder why no one comes back for a prescription renewal. Duh!
I remember Pat mentioning that "suggestion" from the Mayo. It's sad when such a prestigious medical institution can't do any better than that, isn't it. It certainly emphasizes the difficulty that the medical community has with treating the disease, though.
Love,
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.
Tex,
The first thing I thought when he told me that he has lots of patients with cc was "you are so full of s**t." I know cc is not a common form of colitis just from all the research material alone. I also believe that you are correct in the assumption that people get fed up with their GI's (I know I have) and do not return therefore letting them believe that they are in remission.
I just want to thank you for pointing out the C. diff. I am calling the other GI tomorrow to schedule an appointment with him. Since I don't know how soon I can get in to see him I am still going to ask my GP to test me for it. I have got to rule out everything.
BTW, last night there was no watery d, just the same o' mush. But thats ok, better than water.
Love,
Rose
The first thing I thought when he told me that he has lots of patients with cc was "you are so full of s**t." I know cc is not a common form of colitis just from all the research material alone. I also believe that you are correct in the assumption that people get fed up with their GI's (I know I have) and do not return therefore letting them believe that they are in remission.
I just want to thank you for pointing out the C. diff. I am calling the other GI tomorrow to schedule an appointment with him. Since I don't know how soon I can get in to see him I am still going to ask my GP to test me for it. I have got to rule out everything.
BTW, last night there was no watery d, just the same o' mush. But thats ok, better than water.
Love,
Rose