c diff on and off

[Mia-Mia]

its been a year and a half since my diagnosis, i have tested several times negative when i was having bad attacks. well each time i test negative. except for one time it was positive. But by the time I got the result back 5 days later i had no D and no pain . Doc said sometimes if stool is solid there is a chance of a false positive? So my doc did not treat because i had no d or cramping. Had me test a week later and it was negative. I did well for 3 months no D no attacks.
Now Bad cramps and D just for 2 days and now i am better again. CAN C diff work this way or is this just bad IBS? Not sure if there is such a thing as a false positive. But when the D sttrikes The pain is SO SO great like labor pains i sweat and everything IS IBS LIKE THAT? WOW IT HURTS.
Anyone experience anything like this?

[cazza]

I was diagnosed with cdiff almost two years ago and get exactly the same symptoms as you. It comes and goes. I am sure I still have it because when it flares up I get that smell that we all know and I feel absolutely wiped out by it. I feel like it never fully went away. I have had flagyl once and vancomycin once. After the vanco I had a bout 6 weeks of feeling pretty good until it flared up again.

My attacks last up to 2 weeks and go away from anywhere from 4 weeks to 3 months. But I get some fatigue inbetween.

I am considering the stool infusion since it just lingers on and on.

[Mia-Mia]

Have you been tested at all? what do you take when it happens? I am lucky my d only last a day or so. The smell I dont know its only weird when i dont have C diff so I am confused. What does your Doc sy about it?

[cazza]

I haven't been tested recently but it only ever tested positive during a colonoscopy.

The gastro I am seeing is willing to do the stool infusion without a positive test.

I take high doses of acidophilus when it flares and I change my diet to a blander diet. I think I will have to restrict my diet ongoing to manage the symptoms

[trob25]

I don't think either of you still have C-Diff, primarily because it doesn't just go away for 2 weeks or 3 months then come back and go away again. C-Diff is constant, once you get it, you have it every day until it's defeated, no breaks (well now and then you can hit 24 hours with only a bout of D or 2) but that's about it.

Mia, it's possible you have Post Infectious IBS, which is what I have, a temporary IBS which can occur after C-Diff, or it's possible you have full on IBS, which some people are permanently left with after C-diff. I'm 9 months after being cured and still have bouts of IBS, which I was tested during the early phases of and all came back negative for C-Diff. PI-IBS can last a year to a year and a half after major intestinal upset.

Now IBS aside, it's possible that Mia & Cazza, you could have another condition like Crohn's or Ulcerative Colitis, I think both can cause severe attacks, fatigue and weight loss. Have either of you seen a GI or had a colonoscopy done? Note I'm not going to recommend a colonoscopy if not needed, but after 2 years and still suffering debilitating attacks, you might want to at least consider a new GI with the possibility of one of these other conditions.

Now even if you didn't have UC or Crohn's before, my GI mentioned that sometimes C-Diff is just an intro episode of sorts, triggered by antibiotics perhaps, but really just masking an underlying condition like UC that was waiting to come out.

[beth22]

I did have c diff that "came and went" for about a year until it was finally diagnosed and became so bad that it didn't "go." Since I have tested negative I've also had IBS issues - been checked for all the things Trob25 mentioned - Crohn's, etc. but all came back negative. My gastro does think that it is possible to periodically throw off some spores of a weakened c diff. that is triggered by something, whether it be antibiotics, or just an imbalance of good vs bad bacteria. I'm not sure if anyone really knows for sure. However, I am having a stool infusion to see if it helps.

[Mia-Mia]

Trob thanks so much. I just had a colonsocpy a few months ago . they check for Crohns and colitis And everything was clear. I just got scared because of that one positive but completely fine after that. My doc will not treat unless I am symptomatic. I got an attack 2 days ago. i am now fine again No D and i am eating everything. WTF i dont know. i went 3 months this time with out the attack So I like your advice. I am trying to keep a food log but nothng makes sense. I can eat a 7 course meal be fine . Eat a bagel and sick.

[cazza]

When I was first diagnosed i had the on again off again symptoms. Also taken directly from the cdd website the doctor describes one cycle of symptoms as

CD infection can exist in patients who can be clinically relatively well - eg carriers of very mildly pathogenic bacteria. Some may have recurrent mild to moderate diarrhoea resembling Irritable Bowel Syndrome (IBS) and may not be at all concerned with these symptoms. In fact they may consider themselves to be perhaps part of the normal spectrum of bowel behaviour. Still others may have recurrent bouts of severe cramps, diarrhoea with or without 'wind' and other symptoms. Unless CD is diagnosed and causes these symptoms such patients could well be labelled with a diagnosis of IBS.

Therefore it looks like symptoms can vary and become cyclic in nature.
My symptoms are identical to when i was originally diagnosed and I get very very sick with flares.

[cazza]

I am with you. I am sick more than I am well and am going to get the infusion to see if it helps.

[Nancy1]

cazza,
I'm not sure if you have cdiff or not, but I'll give you the official welcome to the site. Welcome to the group that no one wants to join. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas in FAQ that interest you.

Good luck with the infusion. Many people have had success with these. Let us know how it goes.

[trob25]

Trob thanks so much. I just had a colonsocpy a few months ago . they check for Crohns and colitis And everything was clear. I just got scared because of that one positive but completely fine after that. My doc will not treat unless I am symptomatic. I got an attack 2 days ago. i am now fine again No D and i am eating everything. WTF i dont know. i went 3 months this time with out the attack So I like your advice. I am trying to keep a food log but nothng makes sense. I can eat a 7 course meal be fine . Eat a bagel and sick.

That's exactly what happens to me, I can't say for certain that you have PI-IBS as I'm not a doctor and this is just over the internet, but I can eat steak or have cookies for a month and be fine, then eat a chicken sandwich and have an attack for 5 days. Glad to see you were cleared of Crohn's and colitis, that's really narrowed down what is happening to you. The positive test can happen (called a false positive) during IBS bouts right after because there are no doubt still some spores kicking around in there and they may get released during attacks.

I've started to find a good pro-biotic balance, at least for myself, that evens out these attacks. First of all, my GI suggested I take Florastor for a year, but I had taken for a month after going off Flagyl and when I started having attacks again, it didn't seem to be working. But now it is, when I use it in a specific way. Every day I take 1 primadophilus reuteri capsule and one Culturelle. When I feel like an IBS attack is coming or I'm having an attack, I take 1 or 2 Florastor per day until 2 days after it stops, then I cut the Florastor until next time. For me, this has worked wonders, reducing both severity and duration of IBS attacks.

Side note - I'm surprised to see people can have on again off again C-Diff, but if you found it on the CDD site, then obviously it's happened. It seems most people on this site don't get it in that fashion and my GI indicated it's usually there or not, but maybe someone who is a "carrier" has some kind of innate defense that puts it into submission for a while, but can't always contain it.

[klt03301]

IBS certainly can cause severe pain and sweating. My legs also shake and I'm tired afterwards. This gets better and better with time, though. Finished vanco in 4/08, and what I eat doesn't seem to matter. I can eat the very same foods and have no IBS, or have a bad IBS episode. Know I don't have C-Diff....tested numerous times at 3 different labs...all negative. My post infectious IBS was so bad, I wanted the transplant. Like I said, has gotten much better with time. Good luck to you!

[beth22]

How soon after you stopped meds did the PI-IBS start?

[trob25]

How soon after you stopped meds did the PI-IBS start?

For me it didn't start until a month after I went off Flagyl, like clockwork, it was 30 days exactly and then I got an attack, which struck me with fear of a relapse.

[Vikingjeff28]

You guys are way different than myself. When I got C Diff from Clyndamycin twice, I knew it as it rocked my world upside down(tested positive). Unstoppable D, cramps, Colitis, everything for months until it finally began to subside. I was on Flagyl three times and Vanco once. I take probiotics every day and stick to what I know won't hurt my gut. If I vary say to something like Pizza, D will follow and cramps, post C Diff IBS. When I had C Diff I would go 20 times a day easy, no stopping it. Every person is different though, that is for sure. As our bodies heal we go thru varying stages of "wellness" it seems. I hope you feel better!