4th C. Diff relapse -activated charcoal

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
STS-0
Regular User
Posts: 56
Joined: Fri Apr 07, 2017 10:05 am

4th C. Diff relapse -activated charcoal

Postby STS-0 » Fri Apr 07, 2017 10:21 am

Hi all,

I have had C. Diff at least three times within the last four months, each time treated with Vanco. I was diagnosed with Ulcerative Colitis in the middle of last year, but honestly I think it's primarily been C. Diff this entire time, becasuse my first GI failed to test for it and I get almost 100% better when I take Vanco. Anyway, I just finished another 2-week course of Vanco a week ago, and I've been practically overdosing on probiotics since then in attempt to stave off the C. Diff (4 Florastor 4x a day, 4 Reuteri 4x a day, and 2 RenewLife Ulitmate Flora 4x a day). I think it's been helping because I've lasted longer this time than I did last time, but now my symptoms are nonetheless very slowly returning. Unfortunately my stool hasn't quite reached the point of being D yet, and I can't be tested for C. Diff until it does.

I'd like to try activated charcoal. I have an extremely important event at work coming up late next week, and I cannot afford to wait for my symptoms to deteriorate enough to test my stool (and then wait three additional days for the test to come back). So since I think the probiotics have been helping, I really want to try activated charcoal to see if that can calm my colon down enough for the beneficial bacteria to really take hold and hopefully crowd out the nasty C. Diff.

So my question is, how should I space out my probiotics and the activated charcoal? I've read conflicting views on whether or not activated charcoal interferes with beneficial bacteria.

Thanks in advance!

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: 4th C. Diff relapse -activated charcoal

Postby NanciT » Fri Apr 07, 2017 10:35 am

Hello STS-0 and Welcome to the site. Please read the first thread for all new posters

On the site we will often refer to our own experiences but are unable to give actual medical advice. I would refer your question to your GI especially with a diagnosis last year of UC and a diagnosis of CDIFF. You are taking a great deal of probiotics, did the GI recommend this? For me, I had to be very careful with the probiotics, they caused me all kinds of GI issues. At most, I took VSL#3 twice a day, post CDIFF I take it once a day.

I know it's difficult with events coming up to keep things under control but see what your GI recommends. If you have an active infection or a flair of UC you must review with them before adding anything.
If you test positive for CDIFF again, or the D comes back along with CDIFF symptoms, I would ask for Dificid. After a few rounds of Vanco, this is usually the next best step.
Take care
NanciT

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: 4th C. Diff relapse -activated charcoal

Postby roy » Fri Apr 07, 2017 11:47 am

Probiotics are normaly considered a "might help can't hurt" addition to the normal gut flora but as with any medication are supposed to be used in the recommended dosages.
What your taking is way above that !
They are not normal flora and overdosing might cause adverse reactions.

Activated charcoal absorbs impurities but also absorbs medication, check with your Dr but its not normally used as a treatment or preventative for c.diff.

STS-0
Regular User
Posts: 56
Joined: Fri Apr 07, 2017 10:05 am

Re: 4th C. Diff relapse -activated charcoal

Postby STS-0 » Fri Apr 07, 2017 1:28 pm

I'm afraid my doctor does not have a solid grasp on the situation. He is very hard to get ahold of, and frequently overlooks things I tell him. I'm pretty confident that if I do have UC in addition to C. Diff, it is probably mild. I'm pretty sure C. Diff has been the primary offender this entire time, because my first GI failed to test me for it at all before diagnosing me with UC. The first time I was ever tested for C. Diff (3 months of misery later, and just prior to being put on Remicade), I tested positive. I KNOW I was positive before. I was put on Vanco and got almost 100% better. This has been true all 3 times I've been put on Vanco now. The only UC med I'm now taking is Remicade, which surprise surprise, has not given me significant improvement. Instead, my C Diff just gets worse and harder to eradicate with Vanco.

Doctor wants to do an FMT, but despite the fact that I've tested positive for C. Diff 3 times in the last four months, he says that he cannot administer the FMT until I am *currently* C. Diff positive (as in, test done yesterday, not one week ago). (I cannot understand this logic -Why in God's name would he force me to wait until I'm dangerously full of C. Diff again before doing the FMT, instead of treating me with antibiotics first to kill off as many C. Diff as possible, waiting a week for the antibiotics to clear out of my system, and then doing the FMT?)

I cannot afford to wait until my symptoms deteriorate enough to be able to test my stool, because A. At this point I cannot take FMT as my next course of action, because scheduling the procedure would conflict with my work requirements for the next two weeks, and B. I cannot afford to have 10 urgent watery D restroom trips during this time period.

So yes, I'm sort of taking matters into my own hands right now. I do not believe he fully grasps the relationship between beneficial gut bacteria and C. Diff., and I do not believe he takes into serious consideration the notion that the primary offender may have been C. Diff this entire time.

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: 4th C. Diff relapse -activated charcoal

Postby roy » Fri Apr 07, 2017 1:43 pm

Is that 10 restroom trips a day?

STS-0
Regular User
Posts: 56
Joined: Fri Apr 07, 2017 10:05 am

Re: 4th C. Diff relapse -activated charcoal

Postby STS-0 » Fri Apr 07, 2017 2:48 pm

When I have full-blown C. Diff, yes.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: 4th C. Diff relapse -activated charcoal

Postby beth22 » Sat Apr 08, 2017 12:35 am

Why don't you ask the doctor about taking cholestyramine (Questran). It is a powder that you mix with water or juice and it binds up c diff toxins and carries them out. It tends to be constipating. Some people have had success with it post c diff. It was originally a medication to lower cholesterol, but it is used to bind up remaining toxins and to firm up stools. Some of our posters have used it successfully. I would probably take that over charcoal.

Roxanne
Regular User
Posts: 56
Joined: Tue Jan 24, 2017 12:10 am

Re: 4th C. Diff relapse -activated charcoal

Postby Roxanne » Sun Apr 30, 2017 12:19 am

I'm canceling my 2nd FMT, seems the Dificid is working, only going once a day :)

This cholestyramine (Questran) sounds interesting, first I'm hearing about it. Do people use this while on C-Diff meds since it binds the toxins and why isn't it common practice to take it after or during treatment, as none of want a relapse.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: 4th C. Diff relapse -activated charcoal

Postby beth22 » Sun Apr 30, 2017 3:01 am

Not a good idea to take the cholestyramine when you take meds for c diff because it binds up the meds too. When you get off the meds, it is supposed to kind of "mop up" the toxins that are left. Not sure how often it is used. My GI suggested it to me and I know others on the site have used it too. It is actually a medication to lower cholesterol. It can give C, but if you are having D, that should not be much of an issue.

georgina
Long Time Contributor
Posts: 2635
Joined: Sat Sep 12, 2015 10:07 am

Re: 4th C. Diff relapse -activated charcoal

Postby georgina » Sun Apr 30, 2017 5:33 am

Agree with Beth , any binding agent should be taken after the treatment is over as it might bind the treatment and make it uneffective.
There is also Enteragam to consider : another binding agent that can help boost up immune response , although i think it is a bit more expensive then Questran.

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: 4th C. Diff relapse -activated charcoal

Postby roy » Sun Apr 30, 2017 12:14 pm

Questran binds the toxin so you dont get symptoms.
The bacteria is still there though.
Questran has only a 5% cure rate.
Masking symptoms sounds great but it comes back when you come off it.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: 4th C. Diff relapse -activated charcoal

Postby beth22 » Sun Apr 30, 2017 5:35 pm

I did not mean that Questran should be used in place of treatment, but many have lingering symptoms from residual c diff and/or PI-IBS and it can and does help with that for many. Talk to your doctor about it. It is not meant for a full blown case of c diff, as Roy mentioned.


Return to “Treatments”



Who is online

Users browsing this forum: No registered users and 10 guests