discouraged and need advice
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
discouraged and need advice
Now that I am no longer on the Entocort and the course of Flagyl is complete, the symptoms are returning. Last night the bathroom drama lasted from 8 till 1am. Today is has been the latter part of the afternoon. I go to the GI on Monday and will get to discuss future treatment and I suppose she will request another c-diff test to see if the little buggers are gone; I feel like I am now between a rock and a hard place....if I don't go back on the Entocort the Sx of MC will return; if I do go back on it, then will the c-diff ramp up again? DO any of you have some advice as to other questions I should ask? I plan on seeing if she thinks this is a disease that can be "cured" or rather contained. I plan on showing her the article that Mike posted on celiac disease being common in patients with MC (thankyou Mike!!) and see what she says. I am approaching that point of not being able to leave the house and go shopping or etc because of the violence of the D and the unpredictability of it. We left today at 2 but turned around at 3 to return home because of the cramps starting that signaled the coming disaster. SO...any ideas would be greatly appreciated. A hug or two would help too!!!!
Hi Sonny,
Sorry to hear that your symptoms are on the increase, with your appointment to see your GI doc still three days away.
Hmmmmmm. I think we're in uncharted waters here, because all of the other cases of C. diff that I can recall from members experiences here, happened to individuals who were on the diet - IOW, they didn't have to make a decision about whether or not to take immune system suppressing meds. I can recall one who had to re-treat, but the second time she used Vancomycin, and it did the trick.
Does your doctor have you taking a probiotic? If not, I think it would probably be a good idea to begin taking one before the next round of treatment ends, (that is, if you have to repeat the antibiotic treatment with Vancomycin).
With MC, unless you happen to be so lucky that it goes into spontaneous remission of it's own accord, some type of treatment is essential - either diet or an effective med.
If the D is worse than it was originally, (before you started the Entocort treatment), then there probably isn't much point in wasting time to get another culture test done. I think that if I were in your shoes, I would see if she would be willing to call in a Vancomycin prescription, ASAP, so that you can get the treatment started again.
That's just my opinion, though. Remember - most of us here are not doctors.
Tex
Sorry to hear that your symptoms are on the increase, with your appointment to see your GI doc still three days away.
Hmmmmmm. I think we're in uncharted waters here, because all of the other cases of C. diff that I can recall from members experiences here, happened to individuals who were on the diet - IOW, they didn't have to make a decision about whether or not to take immune system suppressing meds. I can recall one who had to re-treat, but the second time she used Vancomycin, and it did the trick.
Does your doctor have you taking a probiotic? If not, I think it would probably be a good idea to begin taking one before the next round of treatment ends, (that is, if you have to repeat the antibiotic treatment with Vancomycin).
With MC, unless you happen to be so lucky that it goes into spontaneous remission of it's own accord, some type of treatment is essential - either diet or an effective med.
If the D is worse than it was originally, (before you started the Entocort treatment), then there probably isn't much point in wasting time to get another culture test done. I think that if I were in your shoes, I would see if she would be willing to call in a Vancomycin prescription, ASAP, so that you can get the treatment started again.
That's just my opinion, though. Remember - most of us here are not doctors.
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.
thanx
Thanx Tex and Mike...yes I am taking a probiotic...I forget who recommended this one....FLORASTOR....it is recommended for candida and c-diff and I have been on it for past week and a half. I also take a probiotic from the health food store. My Sx just started in earnest but are not as bad as pre-treatment....back in Dec. & Jan it was 15-20 times a day....and now it is in spurts....3 hours here and then 2 hours there the next day. This afternoon it only lasted 2 hours...only LOL! I have sent for the Entero labs test and waiting for it to come so I can start that process. Have been trying to be aware of gluten sneaking in....we are eating in this Easter with family so I can control what I eat. SO will cut way back on everything so I don't inadvertently eat something...so meat, veggies, and fruit it will be.
Sunny
Sunny
It sounds as though you're already doing about all you can, then. I wish I knew of a "magic bullet" that I could suggest, but alas, I don't know of one.
Of course, there's always the chance that you might be reacting to one or both of the probiotics, unless you've taken them previously, and know them to be compatible with your digestive system. Polly had that happen before, and as I recall, she described the reaction as similar to "a war going on in her gut". I'm not sure which probiotic is was, though.
Maybe someone will wake up with a good idea tomorrow morning. Hopefully, it will at least let you get a good night's sleep, tonight.
Tex
Of course, there's always the chance that you might be reacting to one or both of the probiotics, unless you've taken them previously, and know them to be compatible with your digestive system. Polly had that happen before, and as I recall, she described the reaction as similar to "a war going on in her gut". I'm not sure which probiotic is was, though.
Maybe someone will wake up with a good idea tomorrow morning. Hopefully, it will at least let you get a good night's sleep, tonight.
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.
thanx again...I am thinking about trying a low residue diet...and aim for the foods with the lowest residue...less in...less out theory!! as long as it is with no gluten, that is!! maybe applesauce instead of apples, that kind of thing. I haven't noticed anyone talking about low residue on our forum, so probably it isn't relevant....but I'll see what happens over the next 3 days until I get in to see Dr. kao....at least if she wants to try another round of flagyl i will have another alternative , the vancomycin that you mentioned, Tex.
Sunny,
Vancomycin is usually used for the second round on C. diff, because it is more expensive, but it's capable of building up a higher level of antibiotics in the colon, which theoretically might allow it to wipe out persistent bugs a little more effectively.
If by "low residue" you mean low fiber, then yes, that will definitely help. I lived on mostly just eggs, meat, and mashed potatoes for almost three years, while my gut was healing. Once in a while I would add a few well-cooked green beans or broccoli, but I couldn't handle any other fruit of vegetables.
Tex
Vancomycin is usually used for the second round on C. diff, because it is more expensive, but it's capable of building up a higher level of antibiotics in the colon, which theoretically might allow it to wipe out persistent bugs a little more effectively.
If by "low residue" you mean low fiber, then yes, that will definitely help. I lived on mostly just eggs, meat, and mashed potatoes for almost three years, while my gut was healing. Once in a while I would add a few well-cooked green beans or broccoli, but I couldn't handle any other fruit of vegetables.
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.
HI Sunny,
Here's some hugs!
I hope you begin feeling better.... like..........................NOW!
Love,
Mars
Here's some hugs!
I hope you begin feeling better.... like..........................NOW!
Love,
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
-
barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Sunny----sorry to hear of your eruption ---and I remember when I was doing that *routine* also----
I shudder when I think of my first GI---who didnt know A from B--
He treated me with Flaygl and Vanco.---without really knowing what I had----and this is the guy I stayed with for YEARS--(ill-formed and accepting his word)--not doing a COLONOSCOPY--what did I know???
If it wasnt that I changed GI's---who knows what my issues would still be-
And I take Culturelle---a bit costly, but it works for me--this was suggested to my by my 2nd GI---and to add he was *furious* how #1 treated my condition--without knowing the Xact reasons -
Feel better---- for U too-
luve Barbara
I shudder when I think of my first GI---who didnt know A from B--
He treated me with Flaygl and Vanco.---without really knowing what I had----and this is the guy I stayed with for YEARS--(ill-formed and accepting his word)--not doing a COLONOSCOPY--what did I know???
If it wasnt that I changed GI's---who knows what my issues would still be-
And I take Culturelle---a bit costly, but it works for me--this was suggested to my by my 2nd GI---and to add he was *furious* how #1 treated my condition--without knowing the Xact reasons -
Feel better----
for U too-luve Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
