Relapse #5? Lomotil? Starvation diarrhea?

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NS789
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Relapse #5? Lomotil? Starvation diarrhea?

Postby NS789 » Sat Aug 01, 2020 10:06 am

So I just went to see a doctor because after following the three-day rule, it seems pretty evident that I've relapsed for a fifth time. This particular doctor seemed leery of prescribing more antibiotics and said my bowels might just be stuck in a cycle of over activity. He prescribed me Lomotil to take until Wednesday and if I'm still having D by then, he will prescribe antibiotics. He said if my BMs firm up on the Lomotil then the infection is probably gone.

Any thoughts on this approach? Any experiences with Lomotil? I've never heard of it before. I feel like this will just slow my bowels down temporarily and delay the inevitable... but I don't know.

He also mentioned in passing that some people have "starvation diarrhea" where the bowel lining stops absorbing nutrients properly for awhile... but I Googled it and can't find much about it.
32-year-old female. Diagnosed with C diff in March 2020. Prescribed Flagyl (10 days) then Vanco (10 days) then Dificid (twice for 10 days). Relapsed within 2 weeks everytime. Finished a 5-week Vanco taper on July 16th. Possibly relapsing again.

roy
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Re: Relapse #5? Lomotil? Starvation diarrhea?

Postby roy » Sat Aug 01, 2020 10:35 am


NanciT
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Re: Relapse #5? Lomotil? Starvation diarrhea?

Postby NanciT » Sat Aug 01, 2020 11:14 am

I would personally NOT take Lomitiol, if you do have CDIFF and it's an actual relapse there can be serious complications. I would see another GI or an ID. If you look up Lomitiol, it is contraindicated for people with CDIFF.

I wondered when you were put on Vanco AFTER Dificid. Usually if Vanco fails, a taper is tried or Dificid. When you failed the 10 days of Dificid we generally see either a Difcid taper or FMT.

See another GI OR and ID, sorry you are going through this. I changed GI's 3 times in 2014/15 when I had 5 relapses. A Dificid taper finally got rid of it.

5 years later, I am seeing an ID. I was diagnosed again in March, she went directly to a Difcid taper, which I completed 12 weeks ago. So far, IBS is difficult but I am getting through it

Hope you are able to get in with another physician

NanciT

NS789
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Re: Relapse #5? Lomotil? Starvation diarrhea?

Postby NS789 » Sat Aug 01, 2020 12:03 pm

Nanci, what kind of Dificid taper worked for you in March? Was it 2 pills/day for 10 day, then 1 pill/day for 10 days, then every other day? Or something different?

Every doctor I see tells me to do something different. It's so frustrating. And they don't seem to know a lot about Dificid so they're not as willing to prescribe it. They just want to default to Vanco. But I may have to push for a Dificid taper.
32-year-old female. Diagnosed with C diff in March 2020. Prescribed Flagyl (10 days) then Vanco (10 days) then Dificid (twice for 10 days). Relapsed within 2 weeks everytime. Finished a 5-week Vanco taper on July 16th. Possibly relapsing again.

Ali-Mar
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Re: Relapse #5? Lomotil? Starvation diarrhea?

Postby Ali-Mar » Sat Aug 01, 2020 12:52 pm

NS789 I am so sorry to hear you might be relapsing again, my GI once told me don't take antidiarrhea meds when you have an active GI infection, it will delay the healing, as diarrhea is body’s method to rid the bacteria.

I think the best way to confirm if it is a relapse; is testing for C Diff and Calprotectin level. My GI and ID both told me if you test positive for C Diff AND have high Calprotectin Level, it means you have an active CDI. But only positive PCR might mean you are a carrier only.

The following is a small study of Dificid taper, originally Elvish 2 shared the link on one of the postS. Check group c, the study is small, I think 12 or 13 patients but 100% cured using Difcid taper. They took total of 40 pills: 2 pills/day for 10 days, 1 Pill per day for 7 days and 1 pill every other day for 26 days. This is what I did but as you know it didnt work for me.. I took 60 pills instead as I felt I was relapsing while taking one pill every other day so I went back 2 pill per day again

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4281782/

Hope you will find a good doctor, I read while back that some of the Canadian provinces provide FMT, I think it was Alberta but not 100& sure
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

NS789
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Re: Relapse #5? Lomotil? Starvation diarrhea?

Postby NS789 » Sat Aug 01, 2020 4:29 pm

Thanks for the info, Ali-Mar! Much appreciated.
32-year-old female. Diagnosed with C diff in March 2020. Prescribed Flagyl (10 days) then Vanco (10 days) then Dificid (twice for 10 days). Relapsed within 2 weeks everytime. Finished a 5-week Vanco taper on July 16th. Possibly relapsing again.

Elvish2
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Re: Relapse #5? Lomotil? Starvation diarrhea?

Postby Elvish2 » Sat Aug 01, 2020 11:17 pm

That's so frustrating, especially with the doctors all saying different things! I know a lot of people seem to have luck with the Dificid taper, and I think it's worth pushing for. Mine was the usual 10-day/20 pill prescription, then a second 20 pill prescription taken 1/day for 7 days, then 1 every other day for the rest of the 13 pills.
2011: contracted c-diff after taking Amoxicillin and Cipro. Successfully treated with Flagyl taper. (Posts under old username, Elvish)

2020: contracted c-diff after taking Augmentin. Finished Dificid taper/pulse on 3/15.

NS789
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Re: Relapse #5? Lomotil? Starvation diarrhea?

Postby NS789 » Sun Aug 02, 2020 8:54 am

Thank you, Elvish! I'll bring up that method with my GI if it turns out that I'm officially relapsing.
32-year-old female. Diagnosed with C diff in March 2020. Prescribed Flagyl (10 days) then Vanco (10 days) then Dificid (twice for 10 days). Relapsed within 2 weeks everytime. Finished a 5-week Vanco taper on July 16th. Possibly relapsing again.

Ril
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Re: Relapse #5? Lomotil? Starvation diarrhea?

Postby Ril » Mon Aug 03, 2020 8:14 am

Whatever happens get a new GI! Your prescription regime has been crazy! And lomotil should not have been prescribed at all as was told to you.


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