daughters wedding this weekend/post cdiff issues

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zinnia1
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Re: daughters wedding this weekend/post cdiff issues

Postby zinnia1 » Wed May 27, 2015 11:12 pm

Excellent advice- thank-you all. My doc simply said finish the course of vanco- I have not gotten more from her….. I just re-introduced culturelle. My system does not seem to like florastor. I am taking a sip of pepto at night to prevent early morning rush. Trying to eat a bit more so I can feel stronger.

zinnia1
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Re: daughters wedding this weekend/post cdiff issues

Postby zinnia1 » Thu May 28, 2015 10:27 am

This is response I got from GI. I had so much diarrhea last week before wedding that I was in a panic so she started course prior to getting results. An emergency as it was a outdoor wedding and I had house guests all weekend. I realize now that it was probably poor diet choices, but we are in a pinch and I was so wiped out. So I am to finish vanco. I am trying to gently add things to diet, but being pretty careful. I need to gain some weight back. The poor bridesmaids were buying me pedialyte! "I understand stools are negative but we made a decision to treat with vancomycin for presumed C. difficile. It is important to complete a regular course so that we don't build resistance issues from the infection. There should not be any weakening of the system. If diarrhea persists even after vancomycin, then management with Pepto, Imodium and diet would be appropriate."

Lisa33
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Re: daughters wedding this weekend/post cdiff issues

Postby Lisa33 » Thu May 28, 2015 10:46 am

Doc knows best and it sounds like you were treated on symptoms. The good news is that you did test negative, and hopefully after this round of vanco is over, you can finally put this behind you and start your recovery. You are on the mend! Try to go easy on the diet until you figure out what foods work best for you. It can sometimes take longer than we like, but you will figure out the right balance of diet, probiotics, etc. I wish you continued health and better times ahead!

-Lisa

seekingcure
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Re: daughters wedding this weekend/post cdiff issues

Postby seekingcure » Thu May 28, 2015 1:38 pm

I thought her reason for finishing the course probably had something to do with developing resistant bacteria and she mentioned that, so that sounds like a reasonable explanation to me. Are you feeling some better now that the wedding is over and you can, hopefully, get some rest? I haven't read back through all your posts, but have you tried Ensure or Boost? Some people have found those to be helpful for getting extra calories in. Also, if poor appetite is a problem, there is a probiotic, l reuteri, that posters have reported helping improve the appetite and helping them to gain weight.
Bea

Bobbie
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Re: daughters wedding this weekend/post cdiff issues

Postby Bobbie » Thu May 28, 2015 1:56 pm

I would follow the hints everyone gave you re diet as long as you are still aving problems. Re fiber, it "feeds" the good bacteria and many doc's suggest it after a FMT. I take 2 tap Benifiber tid. Do check with your doc first.

Glad the wedding went well, Congrats.

zinnia1
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Re: daughters wedding this weekend/post cdiff issues

Postby zinnia1 » Thu May 28, 2015 4:13 pm

I just asked doc and she said could try any and all suggestions, but one at a time so I can Identify what does what.
My concern w/ensure- is there a dairy component? And fiber- what is the easiest on system? I always used for constipation- not looseness…Thanks!

seekingcure
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Re: daughters wedding this weekend/post cdiff issues

Postby seekingcure » Thu May 28, 2015 5:11 pm

I would check out the Ensure website for information about it. It does say it contains milk products, but says it is suitable for people with lactose intolerance. I'm not sure how that's possible. Maybe call their information line and ask about it. I never drank it because I never really lost a whole lot of weight and what I did lose I first, I needed to lose. But some other posters have mentioned using it.

As far as fiber, just like probiotics, it seems to be an individual thing. You may have to try several to see which one works the best for you. I prefer Citrucel as it doesn't seem to cause the bloating and gas that Metamucil does, but that's just me. It is also the one my GI recommended for me and I have had IBS for years. I can't tell that it really helps me much if I'm having diarrhea. When it seemed to help me was when I was having the pencil thin formed stools close to the end of my Vanco taper last time. It did help to bulk up the stools and make them more normal.
Bea

zinnia1
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Re: daughters wedding this weekend/post cdiff issues

Postby zinnia1 » Sat Jun 13, 2015 11:54 pm

I have one last question (sure…!) on this nightmare ride- Specifically about the two types lab tests. My second test (w/new GI) was the PCR test, which came back negative- but due to the crazy circumstances of then crazy loose stools after completing vanco and what was possibly PI IBS or c diff or post vanco use issues, and my daughter getting married in days, I started a second course of vanco to get me thru, before waiting for second PCR test results (also Memorial Day to add to the pressure of not getting results back) And later learned that that second test was neg, but needed to stay the course and complete the vanco. Under other circumstances I would have hung in there and tried three day rule etc, but I was in trouble and the show had to go on and I was running it! So water under the bridge and I have to accept that and know that we got thru wedding (as I was drinking pedialyte!) and it was lovely.

But my question is this- the reason I had a c diff test in beginning was because I ate a nutrition bar that guaranteed lots of protein- I had been wiped out from months of treating an ear infection that ultimately was hidden abscess in bone of jaw, so tooth was pulled. So no eating for a while and the months before I had taken zithromax a few times in order to knock out "ear infection.." The nutrition bar was loaded w/a sugar alcohol called maltiltol that gave me violent diarrhea- worse than any colonoscopy prep. I subsequently read that this can be a real problem for certain folks. I contacted a local hospital GI who agree that the maltitol could be a culprit, but as soon as he heard that I had also taken antibiotics he freaked out about c diff and ordered the basic stool test - the toxin test I guess. And it came back positive for A. So he put me on Vancomycin, told me I was going to affect the whole wedding party, and that I could lose part my colon…. :-( At that point I got in touch w/my second lovely GI, who followed up on the first doc's lab results, but then had me retested w.the PCR test.

I read somewhere here that Toxin A isn't even an issue in c diff? But I could be wrong. I honestly felt better after getting thru that first incident of the stupid protein bar than I ever did on subsequent vanco. I can't help but look back and wonder. I guess you have to treat a positive and he was concerned that I was a walking petrie dish- but just curious now that I hear PCR is a better way to go...

Bobbie
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Re: daughters wedding this weekend/post cdiff issues

Postby Bobbie » Sun Jun 14, 2015 12:27 am

PCR is the most effective test - 90 to 92 percent altho there is a LAMP test that is also accurate.There is a new test out now that is supposed to be effective. See Media Reports.the toxin tests are often inconclusive.

zinnia1
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Re: daughters wedding this weekend/post cdiff issues

Postby zinnia1 » Sun Jun 14, 2015 10:08 am

i guess I am wondering is a positive toxin A test of any value- is that really c diff?

Bobbie
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Re: daughters wedding this weekend/post cdiff issues

Postby Bobbie » Sun Jun 14, 2015 1:32 pm

See Gen. Dis. - Latest Info on Testing at top of forum.


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