C Diff symptoms while on vancomycin.....

[LndrLou]

I have been suffering with c diff since June, 2013. I have had 2 hospital stays as a result of this infection. What I would like to know is, if I am presently on Vancomycin, would a stool specimen come back negative? I am absolutely certain that I still have c diff. Presently on pulse therapy using Vancomycin. My symptoms are the same as before: running to the bathroom; stomach pain/cramps and foul odor. Medications I have used since June are: Vancomycin, Flagyl and Dificid. Any information you can provide will be greatly appreciated. I am so discouraged.

[Bobbie]

STANDARD INTRODUCTION: Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Please Read before You Post” and “Guidelines for Posting to our Discussion Boards. (Note limit on posting length.) They will guide you in using the site and answer some frequent questions. Read Dr. Borody's article and topics in “CDI” – formerly” FAQ” – including “Hygiene” “Nutrition” and “Testing.” Also read The C. diff. Bible at http://apic.org/Resource_/EliminationGu ... fFinal.pdf.

The majority (about 80%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most eventually recover unless there are factors such as advanced age or other severe health problems. New treatments include fecal infusions and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff.

If antibiotics contributed to your C. diff, be careful about taking them again. (See “CDI – Antibiotics”). Some people tolerate them; some develop C. diff again. (See Dr. Borody's article). Don’t take medications for C. diff. unless you are tested. (See “CDI – Tests.”)

For further information see http://www.peggymemorial.org and several other support groups on FB. Do research on medical sites such as “Mayo Clinic” and “Web MD.”

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. The best protection (for you and others) is thorough hand washing and good hygiene.

Although we know how devastating C. diff. can be - physically, mentally, and financially - it is not a fund-raising site. We rarely ban posters unless they are verbally abusive, combative or insulting; use inappropriate language consistently; or attempt to sell something through the site and usually issue a warning first.

Again, welcome. Remember, the odds are in your favor. (END)

Hi, Lindy,
Yes, you probably would test negative while on Vanco. Best to be off it completely for 7 to 10 days before retesting.

C. diff. is a discouraging infections, and most of us have experienced what you are going through. Pulsing might work for you. It has for several people on this site. If it doesn't, you have other options now. If you are not already seeing a GI or an ID, I would do so as most of them have more knowledge than general practioners.

Best to you. Keep us posted.

[getwellsoon]

Try not to get too discouraged. You will get well, it just takes a lot of time. I think Bobbie meant to say you will probably test neg. while you are on meds but if you have a lot of infection you could still get a pos. The test isn't too reliable if you have been on meds for CDiff, thats why they tell you to wait 7- 10 days after meds. A lot of people confuse IBS and colitis symptoms with Cdiff because they are so similar. Once you know for sure you aren't relapsing you can treat those symptoms. Pepto works wonders as do other meds. I hope you are feeling better soon. Let us know how you do. Carol

[LndrLou]

Thank you for the responses. I am just at a loss right now and fear the worst. As you might imagine, I have searched and searched the internet for treatments and cures. Some of the things I have read are very disturbing and alarming to say the least. "Toxic megacolon", "sepsis" and the big one being "death/fatal". I just want to get well and the sooner the better. This illness can do so much damage. My GINP has suggested the possibility of a FMT but to my knowledge she hasn't pursued this option as I am still on the vancomycin. I am so ready to get back to normal. I spent the entire summer sick and now we are coming upon Thanksgiving and Christmas. I want to enjoy the holidays. I really am afraid I am going to die from this.

[ncmimi4]

Sorry for what you are going though. I am in the same place as you are right now, on a dificid taper, wondering if I would test negative because of it. Today my GI is going to talk to an Infectious Disease Dr. he knows about what I should do. I am also waiting to talk to a Dr. who does FT. But meanwhile because of the great info. from people on here I have stopped ALL dairy, yogurt included and all probiotics. After a terrible day Mon. the Dr. told me to eliminate gluten while I am waiting. My gosh what an improvement. I may be able to go out of the house today. I got some rice bread at the grocery store for toast. Also have made a rice chex mix with a little maple syrup (Honey would do) and a teaspoon of olive oil stirred in a cup of chex and microwaved it for 40 sec, stirred, micro again several times till it is crunchy and am munching on that and cups of decaf tea and bananas and homemade chicken and rice soup. I am new at this and should not be offering advice but sure do relate to your concerns. Hope you get some answers.

[Nancy1]

About dying from cdiff, CindyM always used to say, if cdiff had meant to kill us, it would have done so already. This means that those who die from cdiff generally die very early in their infection. So you aren't going to die from it. This was reassuring to me. Hang in there.

[getwellsoon]

My husband banned me from the internet when I was at my sickest because I was reading all the worst case scenarios and getting even more anxious. You most certainly aren't going to die from this, as Nancy stated that happens fast and in the early stages when you have other things going on, like a compromised immune system etc. I had to get an anti- anxiety med from the Dr. so I could calm down. Try not to read anymore and follow your Drs. directions. You will eventually get well. Ncmimi, I'm so glad eliminating the gluten is doing wonders for you. We can all take a lesson here, diet plays a big role in how we feel. I cannot eat like I used to but slowly I am able to add back some things. Hope you both have a better day today. Carol

[LndrLou]

Thank you all for the encouragement. I am feeling and doing some better with my stools being a bit more formed. I will be so glad when all of this is over and I am well again. This has been such a horrible experience.

[Bobbie]

Glad you are doing better.

Having C. diff. is a horrible experience for most of us - and for some it is a long horrible experience.

[Krissygirl333]

Hi,
New here...I'm in the same place. I was tested Nov 1st for c diff. It came back neg. more and more tests. I first went to Gastro in May!
Well, by end of Nov, my temp spiked to 101, and the D was a lot worse and I went to ER. I HAD my husband call the dr office because it seems like he wasn't listening to me, I had already been referred to a top University because he didn't know what more to do.
At the ER , the top dr wanted to test me for c diff. I said I've already been tested. Well, it came back positive. Took 12 hours to,get my first round of Vanc. ( a few weeks ago I was treated with Flagyl just in case I guess....it did nothing) I was in hosp 5 days....I've been home over a week. Just off Vanc. ( 14 days on 125mg liquid) and still abdominal pain, cramps, gas, I cannot stand long. And yes, the D low appetite and still losing weight. Total weight loss since spring 24 pounds. I look awful.
I called my gastro Thursday for the follow up. I said should I still be in pain! Wow, he wanted to see me the next day, only later to call and cancel on me and back out. No, he wants you to follow up,with the university. OMG. That is end of Jan. Awful. What in the world. .....

[Bobbie]

Krissygirl,

STANDARD INTRODUCTION: Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Please Read before You Post” and “Guidelines for Posting to our Discussion Boards. (Note limit on posting length.) They will guide you in using the site and answer some frequent questions. Read Dr. Borody's article and topics in “CDI” – formerly” FAQ” – including “Hygiene” “Nutrition” and “Testing.” Also read The C. diff. Bible at http://apic.org/Resource_/EliminationGu ... fFinal.pdf.

The majority (about 80%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most eventually recover unless there are factors such as advanced age or other severe health problems. New treatments include fecal infusions and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff.

If antibiotics contributed to your C. diff, be careful about taking them again. (See “CDI – Antibiotics”). Some people tolerate them; some develop C. diff again. (See Dr. Borody's article). Don’t take medications for C. diff. unless you are tested. (See “CDI – Tests.”)

For further information see http://www.peggymemorial.org and several other support groups on FB. Do research on medical sites such as “Mayo Clinic” and “Web MD.”

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. The best protection (for you and others) is thorough hand washing and good hygiene.

Although we know how devastating C. diff. can be - physically, mentally, and financially - it is not a fund-raising site. We rarely ban posters unless they are verbally abusive, combative or insulting; use inappropriate language consistently; or attempt to sell something through the site and usually issue a warning first.

Again, welcome. Remember, the odds are in your favor. (END)

Sorry you have suffered for so long. Make sure when you are tested they do the PCR test - it is one of the most accurate. See CDI - C. diff. tests. (The most recent information is last.) Some docs. are still using the old toxin tests - lots of false negatives.

I saw in another post you've been suffering aches and pains. Flagyl can cause these symptoms - sometimes for weeks after you've been off it. I'd keep the appointment with the U. Call and see if they have a wait list. If they do, call every other day to see if there is another place. Sometimes they will work you in just to get rid of your phone calls.

The things that helped me get through C. diff. were exercise (start lightly and work up - do what you are capable of doing) and a heating pad (auto. shut off) for warmth and comfort.

Best of luck. Keep us posted on how you are doing.

[sickofthis]

Lndrlou,

I am in the same spot you are, taking a taper of vanco and still have the symptoms. They were pretty much gone when I was taking vanco 4x a day but now that I'm down the 3x a day they are back. I just want to cry, its very scary and hard to deal with at times. I see this post was a couple of weeks ago how are you feeling now?