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Relapse #5? Lomotil? Starvation diarrhea?

Posted: Sat Aug 01, 2020 10:06 am
by NS789
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.

Re: Relapse #5? Lomotil? Starvation diarrhea?

Posted: Sat Aug 01, 2020 10:35 am
by roy

Re: Relapse #5? Lomotil? Starvation diarrhea?

Posted: Sat Aug 01, 2020 11:14 am
by NanciT
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

Re: Relapse #5? Lomotil? Starvation diarrhea?

Posted: Sat Aug 01, 2020 12:03 pm
by NS789
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.

Re: Relapse #5? Lomotil? Starvation diarrhea?

Posted: Sat Aug 01, 2020 12:52 pm
by Ali-Mar
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

Re: Relapse #5? Lomotil? Starvation diarrhea?

Posted: Sat Aug 01, 2020 4:29 pm
by NS789
Thanks for the info, Ali-Mar! Much appreciated.

Re: Relapse #5? Lomotil? Starvation diarrhea?

Posted: Sat Aug 01, 2020 11:17 pm
by Elvish2
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.

Re: Relapse #5? Lomotil? Starvation diarrhea?

Posted: Sun Aug 02, 2020 8:54 am
by NS789
Thank you, Elvish! I'll bring up that method with my GI if it turns out that I'm officially relapsing.

Re: Relapse #5? Lomotil? Starvation diarrhea?

Posted: Mon Aug 03, 2020 8:14 am
by Ril
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.

Re: Relapse #5? Lomotil? Starvation diarrhea?

Posted: Thu Aug 27, 2020 10:19 pm
by Zay
Late to the party, but I suggest you don't take lomotil if you have cdiff, but I am not a doctor. I had a doctor do the same thing to me, I took it, and things got so much worse. I got way sicker from taking it for 2 days and ended up in the ER. If you do have cdiff all that is going to do is let the toxins and bacteria build up in your colon making bigger problems like toxic megacolon.

My doctor in the ER told me to eat lots of fiber when I had cdiff to help form things. A banana with each meal, oatmeal, brown rice, etc and a lot of those things are prebiotics and will help the good bacteria too.