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Dear Charlotte
Sorry to hear you are in a flare and having a nonsense time with results feedback post procedure. I hope your new PCP works out. Sending positive thoughts, Ant
What a Good GI Doctor Can be Like
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Charlotte,
I'm sorry to hear the problems are still continuing. I still think your doctor is confused, and he was looking for ulcerative colitis. I doubt that he will admit that, though, even if he realizes his mistake. Your CC obviously hasn't disappeared in 7 months, especially with the symptoms that you're having. I still wonder if you might have C. diff. I hope that they are checking for that with the stool tests, but a C. diff culture only takes 4 or 5 days, so I suspect that they sent your sample out for parasite testing.
If your pathology report from back in February shows the markers of CC, then you certainly still have CC, regardless of what the recent sigmoidscopy exam report might show. His nurse apparently doesn't know much about IBDs.
Please keep us updated.
Tex
I'm sorry to hear the problems are still continuing. I still think your doctor is confused, and he was looking for ulcerative colitis. I doubt that he will admit that, though, even if he realizes his mistake. Your CC obviously hasn't disappeared in 7 months, especially with the symptoms that you're having. I still wonder if you might have C. diff. I hope that they are checking for that with the stool tests, but a C. diff culture only takes 4 or 5 days, so I suspect that they sent your sample out for parasite testing.
If your pathology report from back in February shows the markers of CC, then you certainly still have CC, regardless of what the recent sigmoidscopy exam report might show. His nurse apparently doesn't know much about IBDs.
Please keep us updated.
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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wonderwoman
- Rockhopper Penguin
- Posts: 574
- Joined: Wed Feb 17, 2010 8:59 pm
- Location: Sun City, AZ
This is a continuation of my post from Sunday July 25th at 7:50
On both Sunday and Monday I took 6 Imodium, and had D 7 times,
Tuesday I took 8 Imodium and had D 13 times. Have been following a very strict GF, DF, SF diet
January 10, 2010 I brought in stool samples and these tests were negative Heptimax, Salmonella, Shigella, Campylobacter, Ova + Parasite, Trichrome Stain, C-difficile Toxin Eia,
January 22, 2010 during a sigmoidoscopy stool samples were collected, the above tests were done again, and all came back negative.
July 16th another sigmoidoscopy was done and I am still waiting for the results. My neighbor who is a retired medical doctor insists that I ask my doctor for a RX for Flagyl.
TEX & POLLY, my question is this, with my history of major D since the middle of May, with all the Pepto Bismol and Imodium I’ve taken, with my following a GF diet, with taking 9 RX Balsalazide a day, and with a negative dx on the stool tests on Jan 10 and Jan 22, should I request Flagyl.
Tomorrow is 12 days. If I don’t hear from the Gi’s nurse tomorrow I am calling his office. If the report has come back and it is negative or it is not back yet, should I ask the nurse to ask the doctor for a Flagyl RX or Vancomycin RX? If your answer is yes, then what probiotic should I take along with the RX?
Is there anything else you can suggest?
Because I told my doctor neighbor that this is an autoimmune disorder, he told my husband I should see an Immunologist. (Per dictionary, a branch of medicine and biology concerned with immunity). I looked up Immunologists in this area and they all mention allergy or asthma in their titles. Since my DH wants me to see a “specialist”, an Immunologist, how do I respond to this? Would this be appropriate?
Oh, and I took my blood pressure eight times this morning as I felt so wiped out. Top number was from 81-90 over 48-53, pulse 62-68. My blood pressure is normally low but not that low.
Looking forward to your replies.
On both Sunday and Monday I took 6 Imodium, and had D 7 times,
Tuesday I took 8 Imodium and had D 13 times. Have been following a very strict GF, DF, SF diet
January 10, 2010 I brought in stool samples and these tests were negative Heptimax, Salmonella, Shigella, Campylobacter, Ova + Parasite, Trichrome Stain, C-difficile Toxin Eia,
January 22, 2010 during a sigmoidoscopy stool samples were collected, the above tests were done again, and all came back negative.
July 16th another sigmoidoscopy was done and I am still waiting for the results. My neighbor who is a retired medical doctor insists that I ask my doctor for a RX for Flagyl.
TEX & POLLY, my question is this, with my history of major D since the middle of May, with all the Pepto Bismol and Imodium I’ve taken, with my following a GF diet, with taking 9 RX Balsalazide a day, and with a negative dx on the stool tests on Jan 10 and Jan 22, should I request Flagyl.
Tomorrow is 12 days. If I don’t hear from the Gi’s nurse tomorrow I am calling his office. If the report has come back and it is negative or it is not back yet, should I ask the nurse to ask the doctor for a Flagyl RX or Vancomycin RX? If your answer is yes, then what probiotic should I take along with the RX?
Is there anything else you can suggest?
Because I told my doctor neighbor that this is an autoimmune disorder, he told my husband I should see an Immunologist. (Per dictionary, a branch of medicine and biology concerned with immunity). I looked up Immunologists in this area and they all mention allergy or asthma in their titles. Since my DH wants me to see a “specialist”, an Immunologist, how do I respond to this? Would this be appropriate?
Oh, and I took my blood pressure eight times this morning as I felt so wiped out. Top number was from 81-90 over 48-53, pulse 62-68. My blood pressure is normally low but not that low.
Looking forward to your replies.
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
Charlotte,
Based mostly on your low blood pressure, you may be suffering from dehydration. Of course, inflammation can suppress blood pressure, also, so this hypotension episode could be due to C. diff, or even MC. Please call your PCP for his or her opinion - you may need to go to the ER for fluid infusions. If you don't get a quick response from your doctor, go to the ER, especially if you have any fever or chills, and you're generally feeling "rotten", (just in case you're experiencing septic shock).
Tex
Based mostly on your low blood pressure, you may be suffering from dehydration. Of course, inflammation can suppress blood pressure, also, so this hypotension episode could be due to C. diff, or even MC. Please call your PCP for his or her opinion - you may need to go to the ER for fluid infusions. If you don't get a quick response from your doctor, go to the ER, especially if you have any fever or chills, and you're generally feeling "rotten", (just in case you're experiencing septic shock).
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.
Regardless of the negative C. diff tests in January, you could certainly have developed C. diff since then. If your doctor ordered a C. diff culture test on July 16th, the results should have been available by the 21st, so it appears that he may not have ordered that test.
Flagyl is not always effective on resistant C. diff strains, but since you don't know that you have a C. diff infection, in the first place, (IOW, the problem might be something else), if you're going to try an antibiotic, then a combination, (sequential), treatment would probably be better than a single antibiotic. IOW, if you knew that you were treating C. diff, I would suggest Vancomycin. However, since this is more of a "fishing expedition", it would probably be better to start with a couple of weeks worth of Flagyl, followed by a couple of weeks worth of Vancomycin, in that order.
You won't really need a probiotic until the antibiotic treatment ends, (the antibiotic would kill the probiotic bacteria, anyway), and the choice of products is a tough call, since we all seem to react so differently to various probiotic products. I'm not sufficiently familiar with the current market offerings to be able to recommend a dairy-free probiotic that might be effective. Hopefully, someone else can make a recommendation.
Most immunologists are not likely to have any experience with digestive system issues, autoimmune or not. You are correct - they mostly deal with skin and respiratory issues, or classic allergic issues, (IgE mediated responses that result in mast cell releases of histamine). I'm afraid it would be very difficult to locate an immunologist who might be beneficial in your case.
Tex
Flagyl is not always effective on resistant C. diff strains, but since you don't know that you have a C. diff infection, in the first place, (IOW, the problem might be something else), if you're going to try an antibiotic, then a combination, (sequential), treatment would probably be better than a single antibiotic. IOW, if you knew that you were treating C. diff, I would suggest Vancomycin. However, since this is more of a "fishing expedition", it would probably be better to start with a couple of weeks worth of Flagyl, followed by a couple of weeks worth of Vancomycin, in that order.
You won't really need a probiotic until the antibiotic treatment ends, (the antibiotic would kill the probiotic bacteria, anyway), and the choice of products is a tough call, since we all seem to react so differently to various probiotic products. I'm not sufficiently familiar with the current market offerings to be able to recommend a dairy-free probiotic that might be effective. Hopefully, someone else can make a recommendation.
Most immunologists are not likely to have any experience with digestive system issues, autoimmune or not. You are correct - they mostly deal with skin and respiratory issues, or classic allergic issues, (IgE mediated responses that result in mast cell releases of histamine). I'm afraid it would be very difficult to locate an immunologist who might be beneficial in your case.
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.
Charlotte,
I am not Tex or Polly. So my advise and thoughts were not requested, I understand. So I'm sorry for buttng in BUT ----.
As a person who once suffered a severe “a-typical” C-diff infection, I feel that I do have some thoughts to share with you on your situation.
1.) The stool tests done last January are really of no significance today. They are not current.
2.) Your un-abating diarrheal problems -- in spite of now heavy use of anti diarrheal medications -- are rather indicative of some kind of infection being present. (but there is no proof of infection by stool analysis)
3.) Your neighbor, whom you’ve described as a “retired Medical Doctor” probably knows more about your situation, simply by living in close proximity and listening to you, and watching your progression on a regular basis -- than does the GI in the group practice you have seen on brief office visits. He does seem to believe that your situation is most suggestive of c-diff, and – as you have not been treated for c-diff, -- he is suggesting that you be empirically treated for c-diff, even though you have not cultured positive for c-diff.
4.) Very unfortunately, there is the occasional c-diff infection (which will be termed by a Doctor as a-typical) that will NOT grow in culture media. Not now, not ever. It’s possible that you neighbor who is a retired Physician knows this. Some times a lab will sift through these specimens to look for c-diff toxins when they are not able to grow c-diff in their culture media. However, the ability to do this might depend upon the lab, and/or how these tests are ordered.
5.) So if your regular Physician will not treat you on empirical grounds for a c-diff, in spite of the “negative chart numbers”, as your neighbor Physician is suggesting????? possibly your neighbor Physician might be of some help by suggesting ways for you to negotiate within this health system you are bound to here?
6.) Your blood pressure is lower than normal? -- very possibly the result of a degree of dehydration, and the danger for you then is also developing a degree of electrolyte imbalance, and this is where things do become increasingly more dicey.
7.) Your health insurance should provide you with emergency contacts. I believe from an earlier post that you are on a Medicare Advantage program?? Somewhere in that group that you are assigned to – should be someone to contact if your regular Dr won’t see you now on an emergency basis????
8.) I believe, but could be wrong, that the first line with C-diff is almost always Flagyl. Occasionally it may take 2 or 3 rounds of Flagyl to vanquish a stubborn C-diff infection. Vanco has usually been reserved for next step if/when Flagyl fails. It is most likely that in your group health setting, that is the way they would go.
9.) Most sincerely, it would be my suggestion that you 1.) abandon the computer and 2.) use the phone and 3.) get help -- up close and personal here. This is a very troubling situation. You NEED attention.
Gayle
I am not Tex or Polly. So my advise and thoughts were not requested, I understand. So I'm sorry for buttng in BUT ----.
As a person who once suffered a severe “a-typical” C-diff infection, I feel that I do have some thoughts to share with you on your situation.
1.) The stool tests done last January are really of no significance today. They are not current.
2.) Your un-abating diarrheal problems -- in spite of now heavy use of anti diarrheal medications -- are rather indicative of some kind of infection being present. (but there is no proof of infection by stool analysis)
3.) Your neighbor, whom you’ve described as a “retired Medical Doctor” probably knows more about your situation, simply by living in close proximity and listening to you, and watching your progression on a regular basis -- than does the GI in the group practice you have seen on brief office visits. He does seem to believe that your situation is most suggestive of c-diff, and – as you have not been treated for c-diff, -- he is suggesting that you be empirically treated for c-diff, even though you have not cultured positive for c-diff.
4.) Very unfortunately, there is the occasional c-diff infection (which will be termed by a Doctor as a-typical) that will NOT grow in culture media. Not now, not ever. It’s possible that you neighbor who is a retired Physician knows this. Some times a lab will sift through these specimens to look for c-diff toxins when they are not able to grow c-diff in their culture media. However, the ability to do this might depend upon the lab, and/or how these tests are ordered.
5.) So if your regular Physician will not treat you on empirical grounds for a c-diff, in spite of the “negative chart numbers”, as your neighbor Physician is suggesting????? possibly your neighbor Physician might be of some help by suggesting ways for you to negotiate within this health system you are bound to here?
6.) Your blood pressure is lower than normal? -- very possibly the result of a degree of dehydration, and the danger for you then is also developing a degree of electrolyte imbalance, and this is where things do become increasingly more dicey.
7.) Your health insurance should provide you with emergency contacts. I believe from an earlier post that you are on a Medicare Advantage program?? Somewhere in that group that you are assigned to – should be someone to contact if your regular Dr won’t see you now on an emergency basis????
8.) I believe, but could be wrong, that the first line with C-diff is almost always Flagyl. Occasionally it may take 2 or 3 rounds of Flagyl to vanquish a stubborn C-diff infection. Vanco has usually been reserved for next step if/when Flagyl fails. It is most likely that in your group health setting, that is the way they would go.
9.) Most sincerely, it would be my suggestion that you 1.) abandon the computer and 2.) use the phone and 3.) get help -- up close and personal here. This is a very troubling situation. You NEED attention.
Gayle
Hi Charlotte,
Have you been on Entocort yet? That would be my immediate suggestion - it is a stronger drug than the colazal you are on and more effective, IMHO, in stubborn or relapsing cases. Also, food intolerances could be playing a role. It is not unusual for new intolerances to pop up once the main ones like gluten and dairy have been eliminated. Could you provide several days of sample menus for us to look at?
Is your doc willing to do another test for c. diff? Of course, it could be atypical, as Gayle well knows. If it were me, I'd rather try Entocort before the Flagyl. I don't think an immunologist would be of much help at present.
I hope you feel better soon.
Love and
Polly
Have you been on Entocort yet? That would be my immediate suggestion - it is a stronger drug than the colazal you are on and more effective, IMHO, in stubborn or relapsing cases. Also, food intolerances could be playing a role. It is not unusual for new intolerances to pop up once the main ones like gluten and dairy have been eliminated. Could you provide several days of sample menus for us to look at?
Is your doc willing to do another test for c. diff? Of course, it could be atypical, as Gayle well knows. If it were me, I'd rather try Entocort before the Flagyl. I don't think an immunologist would be of much help at present.
I hope you feel better soon.
Love and
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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wonderwoman
- Rockhopper Penguin
- Posts: 574
- Joined: Wed Feb 17, 2010 8:59 pm
- Location: Sun City, AZ
Thanks Tex, Pollly, and Gayle, Yesterday I typed up a summary of what’s been going on with me with the intent of taking it to my GI this morning. I wanted my GI to read it at his leisure and decide what he wanted to do next. When my DH read it this morning he mentioned that I didn’t include my low blood pressure readings from yesterday and this morning. Normal for me is about 103 over 60. Pulse about 60. Because there wasn’t any more room on the page, I typed a cover note.
When I got to the GI’s office I was told both Gi doctors were out of the office today and mine wouldn’t be back until Monday. His nurse come out and took me into an exam room. We talked for quite awhile. Because I didn’t want this put off until Monday, she is going to have the other GI look at my written summary tomorrow morning. He may go ahead and prescribe something or he may want me to wait until Monday. The stool samples are sent out of state that’s why it takes so long. She thought they may also be back tomorrow. She suggested I see my PCP and I said I am switching to a different one and have an appointment with him on Aug 12 for a new patient exam. If I don't get anywhere I will call and try to get in sooner.
This is what my cover note said.
I took my blood pressure 8 times Tuesday morning as I felt so wiped out. The upper number was from 81-90 over 48-53, pulse was 62-68. My blood pressure is normally low but not that low.
This morning I took it twice and it was 85 over 49 and 81 over 50. Pulse was 60 both times.
I have been told that I may be dehydrated. I immediately increased my fluids and will pick up Gatorade and start drinking it.
Please read the attached page at your convenience and have someone contact me with your recommendation as to what to do next in regard to the diarrhea I am experiencing.
Charlotte B-----
The following is the page I attached to the above message. It is long because it includes my drugs, my BM”S, and my food diary for four days. Peggy was interested in seeing what I was eating. The margins may be goofed up also.
Dr Winston, Every morning I take out 8 Imodium so I know exactly how many I can take during the day. Even with the Imodium I continue to have diarrhea. From my entries below you can see I am having diarrhea 8-18 times a day weather taking Pepto Bismol or Imodium. I cannot continue to go on having this much diarrhea every day without it affecting my health. I BELIEVE SOMETHING ELSE IS GOING ON HERE. THE QUESTION IS WHAT? I am not showing any improvement. From my diary below you can see the “D” cannot be caused by what I am eating. I am extremely exhausted. What do you plan to do next? An Endoscopy? Should I take Flagyl (Metronidazole) in the event the stool culture is not showing C-diff. or some other bacteria? I know an antibiotic will kill what little good bacteria I may have left, if any is left. I AM WAITING TO HEAR YOUR ANSWER.
A BRIEF HISTORY: I was diagnosed with CC on Feb 12, I began Balsalazide Rx. Went to gluten,dairy & soy free diet. March and April the diarrhea was better. Many days I was close to normal. In April I had a cat scan for a huge bloated abdomen. Early in May 2010 my stools went from 2 times a day and soft, to 3-12 times a day and very loose or diarrhea. On our vacation from May 28-June15 I took 8 Pepto Bismol a day and couldn’t stop the diarrhea.
Returned home and went back on very soft, no fiber, no processed or packaged foods, no spices, dairy, soy, or raw vegetables, no fruits (except bananas & applesauce), no artificial sweeteners, and diarrhea has continued ever since then. Diet consists mainly of white rice, chicken, bananas & overly cooked vegies.
Week of July 12-16 stools were firmer and twice a day, after that I was back to diarrhea multiple times a day.
July 16 had sigmoid with biopsies and stool samples, biopsies negative, results of cultures________??
July 17 late in the day diarrhea begins again, and continued on July 18
July 19 I took 3 Pepto Bismol after 5pm had “D” 8 times today @ 6:00am, 6:30am, 4:30pm, 5:00pm, 6:30pm, 8:00pm, 9:00pm, 9:45pm
July 20 I took 4 Pepto Bismol had“D”10X @ 6:00am, 6:30am, 8:00am,8:15am, 8:20am, 9:15am, 6:00pm, 8:00pm, 9:15pm, 9:30pm
July 21 I took 5 Pepto Bismol had “D” 8 times today @ 5:15am, 7:00am, 8:15am, 11:00am, 12:15pm, 4:45pm, 8:00pm, 8:30pm,
July 22, I took 5 Pepto Bismol had “D” 8 times today @ 6:00am, 6:15am, 6:30am, 6:40am, 6:45am, 2:30pm, 4:00pm, 6:15pm,
July 23, I took 8 Imodium I had diarrhea 7 times today @ 5;45am, 6:45am,11:00am, 1:15pm, 8:30pm, 10:30pm, and at 3:00am in my bed while sleeping.
July 24, I took 8 Imodium I had diarrhea 13 times today @ 4:30am, 7:45am, 9:30am, 12:00noon at the mall, (a lose call here,) then in Costco @ 12:30pm, 12:35pm,
then at home 4:30pm, 5:15pm, 6:30pm, 7:30pm, 10:45pm
I discontinued taking all my vitamins, minerals and calcium, today thinking they were causing the diarrhea. I’m only taking Levothyroxine & Balsalazide now.
July 25 I took 6 Imodium I had Diarrhea 7 times today @ 5:30am, 6:30am, 8:45am, 11:00am, 12:30pm, 1:00pm, and then not until 10:00pm. Diet consisted of
black decaf coffee, breakfast=banana, 1 cup white rice, 1/4 c applesauce, lunch= more rice, 3 oz white chicken meat, squash, sweet potato, parsnips, rice milk,
dinner=home made chicken soup w carrots & rice, a hard cooked egg, banana
July 26 I took 6 Imodium I had Diarrhea 7 times today @ 12:30pm, then not until that night at 10:30pm, 10:40pm, 11:15,pm, 1:00am, 2:15am, 3:00am Diet
today consisted of black decaf coffee, breakfast= rice, applesauce, banana, lunch= chicken, rice, squash, sweet potato, parsnips, rice milk, dinner=chicken, rice,
cooked spinach w 1/2 T margarine
July 27 I took 8 Imodium I had Diarrhea 18 times in 24 hrs @ 5:30am, 5:40,am, 7:00am, 10:30am, 2:00pm, 2:15pm, 3:00pm, 3:15pm, 3:20pm,4:45pm, 5:15pm,
6:30pm, 6:45pm, 10:00pm, 11:45pm, 1:30am, 3:45am, 4:30am (3X tonight in my sleep). Diet today was a smoothie with 2 bananas, rice milk, 2 heaping T
almond butter, I drank 1/2 for breakfast and the rest in the afternoon, lunch= chicken, squash w pat of margarine, dinner=chicken, green beans, potato w a pat
margarine.
END OF REPORT FOR THE GI
I hope the margins stay the way I had them as I had a lot of trouble with them after I copy and pasted.
Today so far I have had 5 BM’s between 4:30 am & 10:00 am.
No, Polly, I have not been on Entocort. I talked to the pharmacist about Entocort when we returned from vacation and she said that Balsalazide worked for me in the beginning and it will work again. Give it time.
Gayle you need not apologize for speaking up. You made some very good points.
For right now I am just going to wait to see what the other GI says tomorrow. In the meantime, I will drink a lot of liquids. I do have to say that I have not been drinking enough.
Enough editing, I'm sending.
When I got to the GI’s office I was told both Gi doctors were out of the office today and mine wouldn’t be back until Monday. His nurse come out and took me into an exam room. We talked for quite awhile. Because I didn’t want this put off until Monday, she is going to have the other GI look at my written summary tomorrow morning. He may go ahead and prescribe something or he may want me to wait until Monday. The stool samples are sent out of state that’s why it takes so long. She thought they may also be back tomorrow. She suggested I see my PCP and I said I am switching to a different one and have an appointment with him on Aug 12 for a new patient exam. If I don't get anywhere I will call and try to get in sooner.
This is what my cover note said.
I took my blood pressure 8 times Tuesday morning as I felt so wiped out. The upper number was from 81-90 over 48-53, pulse was 62-68. My blood pressure is normally low but not that low.
This morning I took it twice and it was 85 over 49 and 81 over 50. Pulse was 60 both times.
I have been told that I may be dehydrated. I immediately increased my fluids and will pick up Gatorade and start drinking it.
Please read the attached page at your convenience and have someone contact me with your recommendation as to what to do next in regard to the diarrhea I am experiencing.
Charlotte B-----
The following is the page I attached to the above message. It is long because it includes my drugs, my BM”S, and my food diary for four days. Peggy was interested in seeing what I was eating. The margins may be goofed up also.
Dr Winston, Every morning I take out 8 Imodium so I know exactly how many I can take during the day. Even with the Imodium I continue to have diarrhea. From my entries below you can see I am having diarrhea 8-18 times a day weather taking Pepto Bismol or Imodium. I cannot continue to go on having this much diarrhea every day without it affecting my health. I BELIEVE SOMETHING ELSE IS GOING ON HERE. THE QUESTION IS WHAT? I am not showing any improvement. From my diary below you can see the “D” cannot be caused by what I am eating. I am extremely exhausted. What do you plan to do next? An Endoscopy? Should I take Flagyl (Metronidazole) in the event the stool culture is not showing C-diff. or some other bacteria? I know an antibiotic will kill what little good bacteria I may have left, if any is left. I AM WAITING TO HEAR YOUR ANSWER.
A BRIEF HISTORY: I was diagnosed with CC on Feb 12, I began Balsalazide Rx. Went to gluten,dairy & soy free diet. March and April the diarrhea was better. Many days I was close to normal. In April I had a cat scan for a huge bloated abdomen. Early in May 2010 my stools went from 2 times a day and soft, to 3-12 times a day and very loose or diarrhea. On our vacation from May 28-June15 I took 8 Pepto Bismol a day and couldn’t stop the diarrhea.
Returned home and went back on very soft, no fiber, no processed or packaged foods, no spices, dairy, soy, or raw vegetables, no fruits (except bananas & applesauce), no artificial sweeteners, and diarrhea has continued ever since then. Diet consists mainly of white rice, chicken, bananas & overly cooked vegies.
Week of July 12-16 stools were firmer and twice a day, after that I was back to diarrhea multiple times a day.
July 16 had sigmoid with biopsies and stool samples, biopsies negative, results of cultures________??
July 17 late in the day diarrhea begins again, and continued on July 18
July 19 I took 3 Pepto Bismol after 5pm had “D” 8 times today @ 6:00am, 6:30am, 4:30pm, 5:00pm, 6:30pm, 8:00pm, 9:00pm, 9:45pm
July 20 I took 4 Pepto Bismol had“D”10X @ 6:00am, 6:30am, 8:00am,8:15am, 8:20am, 9:15am, 6:00pm, 8:00pm, 9:15pm, 9:30pm
July 21 I took 5 Pepto Bismol had “D” 8 times today @ 5:15am, 7:00am, 8:15am, 11:00am, 12:15pm, 4:45pm, 8:00pm, 8:30pm,
July 22, I took 5 Pepto Bismol had “D” 8 times today @ 6:00am, 6:15am, 6:30am, 6:40am, 6:45am, 2:30pm, 4:00pm, 6:15pm,
July 23, I took 8 Imodium I had diarrhea 7 times today @ 5;45am, 6:45am,11:00am, 1:15pm, 8:30pm, 10:30pm, and at 3:00am in my bed while sleeping.
July 24, I took 8 Imodium I had diarrhea 13 times today @ 4:30am, 7:45am, 9:30am, 12:00noon at the mall, (a lose call here,) then in Costco @ 12:30pm, 12:35pm,
then at home 4:30pm, 5:15pm, 6:30pm, 7:30pm, 10:45pm
I discontinued taking all my vitamins, minerals and calcium, today thinking they were causing the diarrhea. I’m only taking Levothyroxine & Balsalazide now.
July 25 I took 6 Imodium I had Diarrhea 7 times today @ 5:30am, 6:30am, 8:45am, 11:00am, 12:30pm, 1:00pm, and then not until 10:00pm. Diet consisted of
black decaf coffee, breakfast=banana, 1 cup white rice, 1/4 c applesauce, lunch= more rice, 3 oz white chicken meat, squash, sweet potato, parsnips, rice milk,
dinner=home made chicken soup w carrots & rice, a hard cooked egg, banana
July 26 I took 6 Imodium I had Diarrhea 7 times today @ 12:30pm, then not until that night at 10:30pm, 10:40pm, 11:15,pm, 1:00am, 2:15am, 3:00am Diet
today consisted of black decaf coffee, breakfast= rice, applesauce, banana, lunch= chicken, rice, squash, sweet potato, parsnips, rice milk, dinner=chicken, rice,
cooked spinach w 1/2 T margarine
July 27 I took 8 Imodium I had Diarrhea 18 times in 24 hrs @ 5:30am, 5:40,am, 7:00am, 10:30am, 2:00pm, 2:15pm, 3:00pm, 3:15pm, 3:20pm,4:45pm, 5:15pm,
6:30pm, 6:45pm, 10:00pm, 11:45pm, 1:30am, 3:45am, 4:30am (3X tonight in my sleep). Diet today was a smoothie with 2 bananas, rice milk, 2 heaping T
almond butter, I drank 1/2 for breakfast and the rest in the afternoon, lunch= chicken, squash w pat of margarine, dinner=chicken, green beans, potato w a pat
margarine.
END OF REPORT FOR THE GI
I hope the margins stay the way I had them as I had a lot of trouble with them after I copy and pasted.
Today so far I have had 5 BM’s between 4:30 am & 10:00 am.
No, Polly, I have not been on Entocort. I talked to the pharmacist about Entocort when we returned from vacation and she said that Balsalazide worked for me in the beginning and it will work again. Give it time.
Gayle you need not apologize for speaking up. You made some very good points.
For right now I am just going to wait to see what the other GI says tomorrow. In the meantime, I will drink a lot of liquids. I do have to say that I have not been drinking enough.
Enough editing, I'm sending.
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
Charlotte,
Well, there's no question, you definitely need some relief. Your symptoms are generally becoming worse, not better. If you mentioned pain, I missed it. Pain may be a clue for distinguishing between MC an C. diff. If you are having a lot of pain and cramps, you might have C. diff, (but, of course, it could also be due to a severe CC episode). If, however, you are not experiencing much pain/cramps, then that lowers the odds that you might have a C. diff infection.
Here are your options, as I see them:
1. If the pain symptoms suggest it might be C. diff, (or if you get a positive culture result), then either Flagyl or Vancomycin would be indicated.
2. If the lack of severe pain/cramps suggests a severe CC episode, then Entocort, (or even Prednisone, to shock your system into responding quickly), is an option. IMO, your pharmacist may be wrong - just because a 5-ASA drug once worked for you, does not mean that it will get the job done again.
3. You can get a 2-week respite from the diarrhea, (to give you some relief for a couple of weeks), by taking Ciprofloxacin. This would also take care of most undetected infections, if one happens to be present, because Cipro is a broad-spectrum antibiotic.
The third option would at least give you and your doctor some time to plot your next strategy. Note that Cipro would probably not be very effective against C. diff, especially a resistant strain - Vancomycin currently has the best track record on antibiotic-resistant strains of C. diff, but Cipro would likely do a good job on many other pathogens that might be present, and we have found that it virtually guarantees remission from MC, while using it.
Note that with option 2, if you have a C. diff infection, neither Entocort nor Prednisone would provide any relief.
I'm glad to see that you're still eating, to provide some energy, and drinking additional fluids will help to keep your blood pressure up.
One other thought - if you have C. diff, (or an infection from certain other pathogens), an anti-diarrheal, such as Imodium, is contraindicated, since the by-products of C. diff are toxic, and therefore should be purged, ASAP.
Good luck with the doctor, tomorrow.
Tex
Well, there's no question, you definitely need some relief. Your symptoms are generally becoming worse, not better. If you mentioned pain, I missed it. Pain may be a clue for distinguishing between MC an C. diff. If you are having a lot of pain and cramps, you might have C. diff, (but, of course, it could also be due to a severe CC episode). If, however, you are not experiencing much pain/cramps, then that lowers the odds that you might have a C. diff infection.
Here are your options, as I see them:
1. If the pain symptoms suggest it might be C. diff, (or if you get a positive culture result), then either Flagyl or Vancomycin would be indicated.
2. If the lack of severe pain/cramps suggests a severe CC episode, then Entocort, (or even Prednisone, to shock your system into responding quickly), is an option. IMO, your pharmacist may be wrong - just because a 5-ASA drug once worked for you, does not mean that it will get the job done again.
3. You can get a 2-week respite from the diarrhea, (to give you some relief for a couple of weeks), by taking Ciprofloxacin. This would also take care of most undetected infections, if one happens to be present, because Cipro is a broad-spectrum antibiotic.
The third option would at least give you and your doctor some time to plot your next strategy. Note that Cipro would probably not be very effective against C. diff, especially a resistant strain - Vancomycin currently has the best track record on antibiotic-resistant strains of C. diff, but Cipro would likely do a good job on many other pathogens that might be present, and we have found that it virtually guarantees remission from MC, while using it.
Note that with option 2, if you have a C. diff infection, neither Entocort nor Prednisone would provide any relief.
I'm glad to see that you're still eating, to provide some energy, and drinking additional fluids will help to keep your blood pressure up.
One other thought - if you have C. diff, (or an infection from certain other pathogens), an anti-diarrheal, such as Imodium, is contraindicated, since the by-products of C. diff are toxic, and therefore should be purged, ASAP.
Good luck with the doctor, tomorrow.
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.
Probiotic (when you need it)
I'm pretty sure that I took Florastor after it was recommended here by an "oldbie", maybe Dee or Gloria or ? It is expensive.
Check it for your intolerances.
So sorry for all you are going through. I hope you get back on track very soon.
Check it for your intolerances.
So sorry for all you are going through. I hope you get back on track very soon.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
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wonderwoman
- Rockhopper Penguin
- Posts: 574
- Joined: Wed Feb 17, 2010 8:59 pm
- Location: Sun City, AZ
Tex, my last post was very long but it was what I had written to the GI. I wanted to "show" him in writing just what is going on with me. Doctors don't always "hear" you. I also wanted people here to see what I am dealing with.
Tex, I understand what you are saying about the different options. Also, I have gone this long with the D so there is no reason to rush into something immediately. My immediate concern right now is to increase my liquids and I am doing that.
I would say that for a month now I have gurgling in my stomach which I never had before and maybe sometimes a little discomfort or stomach ache but I can't say I have pain.
I am willing to go on Entocort but then if the D continues I will always be wondering if I should have done the antibiotic first. I am almost leaning towards the antibiotic first. I wouldn't want to do Vancomycin without a positive DX. I was thinking Flagyl until you mentioned Cipro. If there is improvement I can always go stronger to be sure it is wiped out. And if there is no improvement then go to Entocort.
Since the Imodium is not doing any good, I thought I should just quit taking it. Or is 6 days of taking Imodium not long enough. What do you think? I will wait for the doctors call tomorrow. Hopefully the lab report will be back. In fact I am even wondering if it was there today but the nurse was not able to give me the results. She gets the orders from the doctor.
I didn't mean for only Tex and Polly to reply. I certainly welcome anyones input.
I have an early dentist appointment in the morning so I won't hear anything until later.
Tex, I understand what you are saying about the different options. Also, I have gone this long with the D so there is no reason to rush into something immediately. My immediate concern right now is to increase my liquids and I am doing that.
I would say that for a month now I have gurgling in my stomach which I never had before and maybe sometimes a little discomfort or stomach ache but I can't say I have pain.
I am willing to go on Entocort but then if the D continues I will always be wondering if I should have done the antibiotic first. I am almost leaning towards the antibiotic first. I wouldn't want to do Vancomycin without a positive DX. I was thinking Flagyl until you mentioned Cipro. If there is improvement I can always go stronger to be sure it is wiped out. And if there is no improvement then go to Entocort.
One other thought - if you have C. diff, (or an infection from certain other pathogens), an anti-diarrheal, such as Imodium, is contraindicated, since the by-products of C. diff are toxic, and therefore should be purged, ASAP.
Since the Imodium is not doing any good, I thought I should just quit taking it. Or is 6 days of taking Imodium not long enough. What do you think? I will wait for the doctors call tomorrow. Hopefully the lab report will be back. In fact I am even wondering if it was there today but the nurse was not able to give me the results. She gets the orders from the doctor.
I didn't mean for only Tex and Polly to reply. I certainly welcome anyones input.
I have an early dentist appointment in the morning so I won't hear anything until later.
Charlotte,
I understand - IMO, that's a very good report to show your doctor - much more effective than a few quickly-forgotten oral comments.
Imodium should work in a matter of hours, if it is going to work at all, I would think.
Tex
I understand - IMO, that's a very good report to show your doctor - much more effective than a few quickly-forgotten oral comments.
Imodium should work in a matter of hours, if it is going to work at all, I would think.
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.
Charlotte
So, so sorry that things are not going well right now. Been their, done that and know how frustrating and scary the whole thing can be.
I have been in remission for many years and still don’t feel like I am an expert but hope you don’t mind if I make a few suggestions that i found to be true for me on my journey back to feeling good.
I tried Pepto Bismol about six months into trying to figure things out. I had been doing fairly well and just two tablets sent me into a tailspin. Black D and felt worse than I had in long time. You are taking what in MHO is an awful lot. Just wonder if it just making things worse. I suspect, with 20/20 hindsight, that i had leaky gut syndrome so bad that much of the active ingredients were being absorbed through the gut wall and ending up where they did not belong. I never took it again and eventually reached a state of equilibrium although not perfect.
I have never used Imodium but wonder , out loud, if with the amounts you are taking it could just be making things worse for the same reasons the Pepto made me ill. Just a WAG but looking at your list it seems the more you take the worse the symptoms.
Also noticed that you eat green beans. All beans, including peanuts, made my symptoms worse and I eventually eliminated all of them. They are lectins that many of have found to be a big problem. Much to my surprise I rose to a whole new level of well being by eliminating them. Do a search for lectins on this sight for lots of great past discussions.
About a year into this adventure I found the old board. I had eliminated all grains at that point and subsequent conversations led other members like Polly and Karen to discover how well they did without them. In other words rice all the time although is not supposed to be a problem made my digestion worse.
Well it all seems to be a WAG in the beginning and I only hope my WAG’s that worked for me might help you and others.
Love
Matthew
So, so sorry that things are not going well right now. Been their, done that and know how frustrating and scary the whole thing can be.
I have been in remission for many years and still don’t feel like I am an expert but hope you don’t mind if I make a few suggestions that i found to be true for me on my journey back to feeling good.
I tried Pepto Bismol about six months into trying to figure things out. I had been doing fairly well and just two tablets sent me into a tailspin. Black D and felt worse than I had in long time. You are taking what in MHO is an awful lot. Just wonder if it just making things worse. I suspect, with 20/20 hindsight, that i had leaky gut syndrome so bad that much of the active ingredients were being absorbed through the gut wall and ending up where they did not belong. I never took it again and eventually reached a state of equilibrium although not perfect.
I have never used Imodium but wonder , out loud, if with the amounts you are taking it could just be making things worse for the same reasons the Pepto made me ill. Just a WAG but looking at your list it seems the more you take the worse the symptoms.
Also noticed that you eat green beans. All beans, including peanuts, made my symptoms worse and I eventually eliminated all of them. They are lectins that many of have found to be a big problem. Much to my surprise I rose to a whole new level of well being by eliminating them. Do a search for lectins on this sight for lots of great past discussions.
About a year into this adventure I found the old board. I had eliminated all grains at that point and subsequent conversations led other members like Polly and Karen to discover how well they did without them. In other words rice all the time although is not supposed to be a problem made my digestion worse.
Well it all seems to be a WAG in the beginning and I only hope my WAG’s that worked for me might help you and others.
Love
Matthew
Charlotte,
I'm so sorry that you are having to make so many D trips to the bathroom. Some of my thoughts:
I believe Pat is the one who mentioned that regular Imodium has lactose, but Imodium AD does not. You may want to look at the ingredient label to make sure you can tolerate all the ingredients.
Pepto Bismol made my D worse. It had the same effect on Polly, too. If you've used it successfully before, however, it shouldn't suddenly cause a problem now.
Chicken is considered pretty safe poultry, but it damaged my gut so badly that it took 3 months of being on a full dose of Entocort before it settled down. Turkey is much easier on my gut.
Every food in your diet: rice, applesauce, banana, chicken, squash, sweet potato, parsnips, and rice milk would give me D except for the rice - and I'm presently avoiding it, too. Parsnips sent me to the bathroom within a couple of hours. I don't think you are intolerant to all the foods you are eating, but you might try giving up some of the higher fiber ones like squash, sweet potatos and parsnips. Your gut may be very irritated and reacting to the fiber in those vegetables. I've had success with asparagus, cauliflower and Brussel sprouts, all well-cooked. We are all different, however, and you likely have reactions to different foods than I do.
I hope you can stop the D madness soon...you have my sincere sympathy and prayers.
Gloria
I'm so sorry that you are having to make so many D trips to the bathroom. Some of my thoughts:
I believe Pat is the one who mentioned that regular Imodium has lactose, but Imodium AD does not. You may want to look at the ingredient label to make sure you can tolerate all the ingredients.
Pepto Bismol made my D worse. It had the same effect on Polly, too. If you've used it successfully before, however, it shouldn't suddenly cause a problem now.
Chicken is considered pretty safe poultry, but it damaged my gut so badly that it took 3 months of being on a full dose of Entocort before it settled down. Turkey is much easier on my gut.
Every food in your diet: rice, applesauce, banana, chicken, squash, sweet potato, parsnips, and rice milk would give me D except for the rice - and I'm presently avoiding it, too. Parsnips sent me to the bathroom within a couple of hours. I don't think you are intolerant to all the foods you are eating, but you might try giving up some of the higher fiber ones like squash, sweet potatos and parsnips. Your gut may be very irritated and reacting to the fiber in those vegetables. I've had success with asparagus, cauliflower and Brussel sprouts, all well-cooked. We are all different, however, and you likely have reactions to different foods than I do.
I hope you can stop the D madness soon...you have my sincere sympathy and prayers.
Gloria
You never know what you can do until you have to do it.