mucus or mucous -- it seems to be the key

[deekay]

I have relapsed again and this will be my 4th time on Vancocin in 4 months. I was trying to research on this great site, with all your help, what the most common regimen would be for tapering or pulsing so I can discuss that with my GI doctor this week. My last dosage was
250 x 4 for three weeks. I was off that for 2 months, hoping for the best, but symptoms started again and I just got another positive test result back yesterday. The doctor's P.A. started me on the same 250x 4 for at least a few days.
I haven't quite found the answer on pulsing and tapering schedules that have worked for people in 2009. But I also was trying to find out if others were having the problem with mucus that I am having on this relapse/recurrence. It has been scary because I was passing almost only mucus and really had little control. I know we don't want to get too graphic, but I think mucus or mucous (however you spell it) seems to be the key that the c-diff is back. I thought if I put it as a subject, others who are looking for some dialogue on this, could find it. I have found a few forum mentions about it which makes me feel better. At least I know I am not alone with this mucus problem.
Thanks again to all of you who write. This site is a Godsend to those of us who have to keep dealing with this disease.

[beth22]

Yes, exactly as you describe is how I know when I have a relapse. The amount of mucus is truly scary, and I also get blood with it after a day or two.
My ID doctor told me that this is what they do now for people who relapse. One week to ten days of 250mg 4 times a day, 3 250mg for one week, followed by 2 250mg for one week and then a Xifaxan chaser. I did this after my last relapse in July and was c diff free for over 100 days, but then got a cold and I suppose my immune system was down and I got another relapse. I just finished the vanco and started the Xifaxan today.

It seems that many people are doing Xifaxan chasers these days, so perhaps you should ask your doctor about it. The ID doctors seem to be recommending it more than the GIs. The ID doctor said that Xifaxan works very well on the small intestine, while vanco pill form works well on the colon. Apparently the liquid vanco also hits the small intestine. C diff can hide in the small intestine , so that is the reason to take something that gets it there as well he said.

[deekay]

Thank you so much for your info on the tapering. I have a feeling that is exactly what my doctor will recommend. I was hoping for a bit less of the vanco as the strange thing is that on this relapse, I don't feel as over-all sick as I have the other times. ( Maybe I am finally starting to accept that this is going to be my fate for awhile and I have to deal with it.)
The mucus or mucous is the major ailment and it is pretty bad when it happens. It really is so comforting to know others are going through this.
Did your nerves get the better of you, as mine have, with this frustrating illness? My husband thinks I'm having a breakdown! DeeKay

[Mommy23]

Deekay,
I've never had much mucus only on one occasion, but it is scary. I agree, seems to be an indication that the cdiff has returned.

This illness causes so much worry and fear, you are not alone with your feelings. It has taken me six months to accept my situation and I still have days when I break down. This site is so supportive you will find many of us have felt the same way. Feel free to PM me if you ever want to chat.

I hope you beat this quickly!!

[deekay]

Thanks for your support as well. Would either of you or anyone else know what dosage of xifaxin works as a chaser? I want to have all my facts when I see the doctor.

[Nancy1]

deekay,
See the FAQ section for info about coping with cdiff, and the ten commandments of surviving cdiff. It is a very depressing illness, and these both helped me a lot.

I always had mucus with relapses. In 2006 I used Lauren's pulsing schedule in the FAQ section, plus I added on some cycles at the end, and that is what finally worked for me, after 8 months of cdiff.

[Mommy23]

I took 1200mgs a day for the chaser, which I thought was too high. Others have taken less I believe.
Everyone says that we will get through this, I've spent time reading through the success stories to help keep my spirits up!

[Karien]

I haven't been on this site for a while, but reading some of these posts, reminded me of my own anxiety during the time I had CDiff relapses, which is now almost 2 years ago.

I wanted to give you a word of comfort which might help you a little. I found that most people who come down with CDiff have about one year where they struggle with it. The first 6 months are the hardest, after that it gets better, although sometimes slowly, but it does! I don't think the amount of medicine, how much or how long you take what, matters that much, it might make you feel more comfortable, but in the end, you will be ok. The intestines will be sensitive for a long time and probably will never be quite how it used to be, but you can live with it.

Personally I am still taking probiotics and that seems to work great for me. I can "almost" eat everything I used to and I was in real bad shape.

Just stay calm and accept that you have to go through it and you will come out ok eventually!

All the best to you all!

[beth22]

There seems to be no correct dosage for the Xifaxan chaser. The first doctor who mentioned it said 800mg per day - 2 tablets twice a day. The ID doctor I saw said 600mg per day, one tablet 3 times a day and the same doctor told me two tablets twice a day for 7 days just now, as I had problems with the medication last time and had to take less a day anyway.

The only time I took 1200 mg per day, was when I took it for SIBO when I was c diff free, so it was for a different purpose. It did not make me relapse with c difficile at the time, but it did give me D* at that dose towards the end of the ten days. The normal dose is one tablet 3 times a day according to the literature. Most doctors seem to prescribe it for a week as a chaser, but some for 10 days. It seems there is no standard for this.

[Vikingjeff28]

Ditto, mucus is present, I test positive every time, that is how I know it is back for me.

[klt03301]

Just my experience...

This really should go in TMI, but want to respond...I recently had a scare where I had nothing but mucus and blood and had no control over my bowels. I thought for sure C Diff was back. This was totally unlike my first (and only, thank goodness) c-Diff experience in 2/08...had none of

these. This went on for almost two weeks, and I increased my probiotics and florastor. I tested negative 3 times. I've had mucus before and it wasn't C-Diff. Both times cleared on its own. Doc said he thinks I ate some bad food this last scare. Never experienced anything like it.

It took a year for me to recover from C-Diff. About 6 months out, I started feeling better...I agree with Karien! I now eat anything I want, and I thought I'd never be able to digest a raw veggie or fruit again. It does get better!!!!

In my opinion, a healthy and varied diet, exercise, plenty of sleep, probiotics, and a huge dose of good luck have kept me well (even through 4 rounds of abx from 7-9 2009), and I can eat things I couldn't prior to C Diff.

Karen