Do I Still Have It???

[sickasadog]

My third test just came back negative. I want to shout yeah, but I have a feeling I still have the c-diff. I do not have diarrhea any longer, but when I have a bowel movement it has that "smell" along with mucus mixed into it. My doctor said I can have a false negative. So, how do I know I still have it or not? Wait until it turns to diarrhea again? He wants me to do another round of antibiotics. I just do not know what to do.

[Christina]

I would follow your Dr.'s protocol. There is no real clear cut way to tell if you are not getting a positive result. Every relapse feels somewhat similar to the initial bought or should. For some who don't test positive there may not be an easy way to know. Although I was always pushed by my DR. to relapse and would hold off as long as I could to hopefully get that positive result, if and when I did have a false negative he knew I still had C-diff. Some Dr's may push you to a full relapse, some may not. It is totally up tp you as far as what you can and will tolerate.
If you are unsure it is C-diff and feel you can hold out on treatment and your Dr. will agree, that may be the way to go. Make sure you don't become critically ill. You need to know your limits.

[puremess]

I have been off the vanco since January and I still have mucus either mixed in with stool or around it. I was told it can be IBS.

[Bobbie]

sickasadog,
Were you off Vanco. for 10 to 14 days? If not, negative test could be a false negative. See FAQ-Tests.

Christina gave you great advice. Try not to panic (easy to say; difficult to do) & start treatment if you don't need it. You could also have IBS -- many of us develop it after C. diff. See FAQ-IBS & FAQ-Three Day Rule.

[Jayne]

sickasadog, How are you? False alarm I hope. As I have been reading various experiences on this "blessing" of a site..so many people deal with testing that is not really conclusive. It's tricky because we don't want to overuse our only ammo (ABs), but we also don't want to allow a new case to do more damage than necessary.

I believed I just got another case this Thursday (every symptom). My stool test showed white cells (which indicates presence of infection/inflamation) but the c.diff culture was Neg. Doc said it was the ELISA(sp?) test -the quick one-more chance of error, however he said there are losts of cases of gi virus cases in ER, so maybe its a virus. Do I keep taking the Vanco or not??? I wasn't on Vanco for 1st test, but if I keep taking it & they want another sample-it won't be accurate. It's like playing "Russian roulette". But I don't have a crystal ball so I've decided to stop taking it & see what happens.

[Jayne]

I just found what seems to be helpful info regarding testing for c.diff. It's at labtestsonline.org. I think I'll share it with my docs.

[Jayne]

sickasadog..how ya doin? I read your post again & I was thinking that if I were you I think as long as my symptoms don't get worse..I would hold off on the Vanco & continue to get tested periodically. I'd save the "big gun" for a more sure case (that's just my opinion-for what it's worth).

It's been 6 days since c.diff symptoms have returned for me-they have increased. After talking w/doc & lab tech at hosp. we're pretty sure my sample was not good & he wants to retest me tomorrow. I don't think that will help because I started taking Vanco Friday night & stopped Sunday. I'm pretty sure that could mess up the test. A rock & a hard place. My doc wants me to take Questran again for now & Florastor again. I guess I'll do the test even though I think it's pointless right now. I'm afraid my doc (PCP) doesn't know "enough" about c.diff & my neglectful GI doc hasn't returned my call since Friday (been an issue all along). I know I need a new GI, but it's challenging when you're in the middle of it. I just hope I don't have to end up back in the hospital to get proper care.

[D2007]

I am so thankful I found this board today. Never did I think one existed. It is nice to talk to others who finally understand!


Sadly, I don't feel as though I will ever be fully cured from c-diff. I suffered with it for roughly a year and felt that since then I still have been plagued from some of the symptoms although it wasn't as severe as it had been before treatment. Now a year later, I took antibiotics for bronchitis and it is back however slightly different. I had the diarreha, mucus and stomach bloating but now it has turned into constipation. Is that possible?

Also, is it possible to spread it to a spouse when someone afflicted with c-diff is not yet diagnosed and treated? I have always fear this.

[Nancy1]

D2007,
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 other sections of FAQ that interest you. Hang in there, you beat it once, you can beat it again.

To answer your questions, constipation is rare with cdiff but possible. Are you on vanco or Flagyl?

Very few of us have passed cdiff on to our family members, even those who have had cdiff for a long time, but it is possible. I was misdiagnosed for a month and wasn't very careful about hygiene then (good hygiene being the best way to keep from transmitting it to our families), but even with only one bathroom, my husband didn't get it. I do worry about him if he ever has to take antibiotics, though, in case he is already colonized by cdiff.

Maybe you had IBS in between your cdiff episodes? Many people end up with IBS after cdiff. What did your doc say?

[D2007]

Thanks for replying to my messsage. I really appreciate it.

I am on vanco again. I took vanco during my first episode(s) last year. I relapsed alot that summer. I would go for a blood test and they would say I was "cured". Two weeks later I would be so sick again. This pattern would repeat and time and time again they would give me vanco until finally I felt A LOT better and displayed no symptoms.

It is weird though, but I don't think I have ever felt FULLY cured. It could be because I am extremely traumitized from having c-diff (if that makes any sense). I still worry from time to time that I still have traces of it even though I have pretty much gone back to normal.

I haven't displayed full blown symptoms until now when I took the antibiotic for bronchitis.

After I took the antibiotics, I suffered from mucus, bloating and constant D/trips to the bathroom. The only difference I notice now is that my D has turned into constipation. I never went for a blood test this time around. I only spoke to my Dr. and described my symptoms to him. He told me it was very likely I was suffering from c-diff again and he said to take vanco. But now, all of a sudden I am not "able to go" I worry that I don't have c-diff and overreacted since I have such a fear of it since no one has ever spoken of being constipated while having c-diff. I was just wondering if anyone else had.

My Dr. never warned me how contagious c-diff is. During the time when I was not on medication and had c-diff I had a boyfriend. You share everything with a significant other. Since then, we have broken up and I sometimes fly into a panic because I fear I somehow passed it on to him and he has no idea. I had never heard of c-diff until I actually got it and it took me a while to realize that something was seriously wrong and I absolutely had to go to the Dr. I feel like most people treat it like that. They think they just have D and it will pass and when it doesn't THEN they get alarmed. My point being is that he might treat it like that as well...thinking he is fine but having no idea how truly sick he is.
You brought up a point I hadn't realize that your husband could have c-diff...it is just lieing dormant until he perhaps takes antibiotics. That really scares me, ya know?

C-diff is a terrible disease that I do not wish on my worst enemy and to know that perhaps I passed it onto a love one kills me. Does anyone else have any feedback on passing c-diff on?

How can anyone be 100% sure c-diff is REALLY gone when blood tests can lie. I just have these irrational fears.

Before I continue on and on, I just want to thank anyone who took the time to read my posting. I am sorry if I rambled on and some points do not make sense but I hadn't realized there was a support group until now. I really wish I had it last year when I went through my first bought of c-diff. I can't tell you how happy it makes me to be able to have people who care and understand. Yes my family and friends care but not like people who have experienced it themselves so thank you all!

I am going to read those articles now! Thanks!

[Christina]

D2007,

C-diff tests are not blood tests. They are done by stool culture. Read FAQ's testing. If your Dr. is running blood test for it, I hate to say it but you need to find a new Dr.
Although C-diff seems very "contagious'' (it is spread through fecal oral route-ingesting a spore) if you follow strict hand washing and proper hygiene those in your household should be OK. I had C-diff for a year and a half and have two young children and a husband at home. They are all healthy and fine.

Hopefully, since the diarrhea stopped you are not relapsing but keep an eye on things just in case and call your Dr. if they get out of control.

I hope you feel better soon.

Christina

[D2007]

No worries about my Dr. I should of made mention that yes I was having my stools tested as well along with blood tests. I was having both. I pray to God that I never have to take another sample again! It is soooo degrading.

[Misty]

is it possible to spread it to a spouse when someone afflicted with c-diff is not yet diagnosed and treated? I have always fear this.

Hello I'm new to C-diff, and it has been a bad year for me.

Late August 2007 - I was diagnosed with an abnormal mammogram tumor and was scheduled for a core biopsy. The biopsy retuned a false positive result.

I was then, diagnosed with pneumonia and was treated with two cycles of Cipro. I have COPD and am susceptible to respiratory infections.

Sept 24th - I had excisional biopsy surgery, and thankfully the results from this were negative. But I became ill within three days of this surgery...

Immediately after surgery, my symptoms were nausea, vomiting, severe cramping, and diarrhea which in 2-days turned quickly into severe constipation.

Sept 27th - I ended up in the hospital dehydrated and placed onto IV's. My white blood count was all out of whack. The doctor ordered several types enema solutions for my constipation. Which were extremely painful. My bowels were seized up and I was feeling pretty sick! The enemas half helped the situation, but passing the first part chunk stool was no easier than a 9lb child birth.

Sept 28th I was swollen with slight tears from this procedure but was released to go home the next morning. My doctor then wanted me in hospital every morning for 5 days for IV antibiotic treatment. (Until Oct 2)

Oct 3 & 4th the diarrhea started, and I thought it was due to all the enema solutions and meds given to me. I started taking Kaopectade to help with the cramps and diarrhea.

Oct 5,6th I started into the chills and fever. I stayed in bed except to visit bathroom which at night was as often as 25+ X per night. My husband wanted to take me back to the hospital but I refused as the vertigo was bad and it was everything I could do not to be sick. I just wasn't up to getting out of bed. I was fighting dehydration.

Oct 6th – I went to see my doctor, who sent me back to hospital ER for IV's and ordered stool samples as he suspected C-diff and he was quick to act on it. He started me on Vancomycin by IV and when I left he prescribed VANCOMYCIN by mouth.

My results have come back Antigen (EIA) positive and Toxin A & B (EIA) positive.
I have quarantined myself at home, as, I am afraid of additional outside bugs at this point in time.

I have never had any kind of IBS problems and constipation is not common for me.

I can say though that when I was constipated, that was the FIRST time I smelled that horrible, horrible stool smell of C-diff that I'm now dealing with.

I have been researching C diff as no one I have spoken to have any understanding of this illness; before or after one becomes ill.

I'm glad I've found this board.

[TheVike]

Hope you will feel better really soon for it is a dreadful illness! This board is the svior I tell you...sadly I did not find it until while being sick I THOUGH I WAS DYIN. Ther are alot of folks here in which will help you beat the beast and u will!

[Nancy1]

Misty,
Welcome to the group that no one wants to join. There is lots of good info here. 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 sections in FAQ that are of interest to you.

Most people (about 80%) recover from cdiff after 1-2 rounds of Flagyl or vancomycin, so I hope that you are in the lucky majority. I got cdiff after taking 1 Cipro and 4 levaquin pills. We all have to be careful about taking any antibiotics in the future.

How are you feeling on the vanco? Let us know how it goes. Good luck.