Get help fast?

[ppp67]

I'm new to this forum and C-diff. Just came of 10 days of flagl treatment which seemed good, but now it's seven days later and the D started.
Went to the hospital yesterday wanting to get tested and treated asap. Instead, went home, did a stool sample and returned it to the H lab.
Nothing was prescribed. And with the long weekend, I don't even know what is happening. Maybe they won't even test it until Tuesday (3 days later).
It's been 24 hours and I've heard nothing.

Should I be more pushy?
Or is waiting 3-4 days no big deal?

Part if the "problem" is that I'm not that bad. I'm eating LOTS of probiotic yogurt as well as a probiotic supplement.
Maybe that's holding things back. Oh I wish probiotics were a cure but I seriously doubt it. Can it ???
I wish there was someone who was willing to take the time out and tell me what I really need to do.

My biggest beef is that it seems the doctors/pharmacists seem it's no big deal, just don't come to my hospital.
And the rest of the world thinks you have the plague and must live in isolation as well.
What am I supposed to do?

PS. Actually, my biggest beef is a misdiagnosis. They prescribed clindamyacin while the correct diagnosis required no antibiotics whatsoever.
But that's another story.

[beth22]

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.” 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.”

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.


I know the waiting is really hard. Most hospital labs will run the c diff test in about 24 hours and if it is positive, most will call the doctor who requested the test to alert him or her. If you hear nothing by Monday morning, I would call your doctor's office. If things get very bad over the weekend, call your doctor and if he/she is not on call then talk to the doctor who is covering and that person can usually find out from the hospital if the test has been run and if it is positive or negative.

Probiotics give me symptoms of gas, bloating, cramping and D if I take more than a small amount. Most people can take the normal recommended dosage, but some can't. Also a lot of people who have had c diff become lactose intolerant. I remember when I tried eating a probiotic yogurt while still on vanco, I got D and tons of gas. My ID told me to stop dairy and my symptoms went away. You could try stopping the dairy for a day or two and see if that is the problem. Which probiotics are you taking? Florastor helps many and is prescribed for traveler's diarrhea, so for most, it should not cause looser stools.

I would definitely call the on-call doctor if you feel worse and not wait until Monday.

[Bobbie]

ppp67,
I hear you - loud and clear. I've been the recipient of many misdiagnoses as well. Clindamycin - the lst antibiotic implicated in contributing to C. diff. I think it should be outlawed - for all but the most severe cases when nothing else will work.

I've seldom had good luck with probiotics but some swear by them. It's an individual "can help, probably won't hurt" thing. And doing SOMETHING often sounds better than doing nothing. My kids' former pediatrician (RIP) used to call it "giving the mother something to do."

I'd follow Beth's advice and wait until Mon. and then start calling - unless you feel much worse tomorrow - then call ASAP. There is usually a doc. on call with every practice. Often the ER is a good source of help.

Let us know how you are doing. Only someone who has had C. diff. can understand how you feel.

[ppp67]

Thanks for the replies.

I called the hospital and yes, I've still got it!
They will start me on VANCO and set me up with the Infectious Disease doc.
Wow.
I'll still see my family doctor on Wednesday. Just to say hi I guess.

Things weren't too bad with flagl. Yes, I always took a nap 1 hour later, but that was fine.

It's a shame.
I felt better today, eating mostly yogurt, but also oatmeal, raisins, milk and a multivitamin.
VANCO will probably clean out everything -- the good and the bad.

I asked about taking probiotics. The doctor in emergency thought that was great.
The probiotic pill box instructions say take one a day.
The doctor said I should take it twice instead.

VANCO can make you lactose intolerant? I've eaten cheese, milk, etc. all my life.
That would be a shame to give that up.


oh well, off to bed.

[ppp67]

PS. I never EVER want to take antibiodics again. EVER.
So when they prescribe VANCO, I understand it need to do it.

[beth22]

I don't know if the vanco made me lactose intolerant or the c difficile. Obviously, you have to treat the infection though. Even though it says on the probiotic to take it once a day, remember that the vanco will be killing some of the probiotic, so it is a good idea to take it twice as the doctor said. My original GI told me the same thing. You may not become lactose intolerant. Not everyone does. Hopefully, the vanco will knock the infection out for you. Remember that the odds are in your favor. Most people only need a couple of rounds of antibiotics.

Florastor is a yeast based probiotic that won't be killed off with the vanco. You might want to try that if your doctor says it is a good idea. See which probiotics the ID recommends.

Sorry you relapsed, but at least you are treating it right away instead of waiting.

[getwellsoon]

Since you state you are feeling better it sounds like your body is trying to fight the CDiff off on its own. If it were me I would fill the Vanco and then see how things go before starting it. Call the Dr. back and ask if this is something you could try. You are right, the Vanco will kill off some good bacteria with the bad CDiff. That is why some Drs. will let you delay treatment to see if your body can fight it off. I was never so lucky, I always had to take the medicine and then it tooks months for my guts to get back to something like normal. Either way, I wish you the best of luck in fighting this terrible disease and hope you get well soon. Keep us posted. Carol

[ppp67]

wow.
I don't have insurance and that VANCO is really expensive.
But I've got assets if I really need to dig.

So, I've got recurrent C-Diff.
They are not prescribing flagl because the original 10 days worth failed.
So its 10 days of VANCO instead.

Please, I'm really worried because I'm not sick. I mean that my white blood count
is normal, I only have stomach cramps and D. Is my body too stupid to react and
fight it? If so, my only real hope is to remove every single C-diff bacteria, spore etc.
in me and my immediate environment. It's not going to happen.
How easy is it to re-acquire from you external environment and how long does it take?

Honestly, I'm not eating much now.
When people say that they cannot handle certain foods, what exactly does that mean?
Does it mean running to the bathroom the instant you eat something?
Does it mean simply an upset stomach?
In my case, it's more fear than anything.

I'll keep you updated when they drop off the pills and talk to me this evening.

[Bobbie]

Liquid Vanco. (the IV form "turned into" and oral form) is often cheaper than Vanco. pills even though the pills are now generic. The disadvantage is a fairy short shelf life & it needs refrigeration. Most compounding pharmacies can do this - including some Walgreen's.Call and check around. See CDI for more info.

[ppp67]

Interesting.
I've just received my first VANCO prescription.
It's to be taken 4 x 125 mg per day, for 10 days.
The delivery guy showed up, confirmed who I was and left the pills.
No other explanation on what to do.
Just take 4 pills daily (evenly spaced out).

I was expecting them to talk about it more,

Well, had some D this morning but I've been very good for hours now.
Had whole-wheat bread slice with 100% peanut butter, and milk.
Please tell me if that is just asking for trouble.
It's all good, at least nothing seems to be going wrong.
Should I rush in with the VANCO or wait just a bit?

[beth22]

Milk may not be the best thing as a lot of people with c diff can't tolerate the dairy products. If you get D from it, then ease off the dairy. You should call your doctor and ask what to do about taking the vanco. See how you are in the morning and then call and discuss it. Your doctor may tell you to wait, but I would run it by him/her.

[getwellsoon]

Good advice. YOur body sounds like its fighting it off on its own, which is great. Vanco will kill off some good bacteria with the CDiff bacteria, as do all ATX. Call the Dr. and see what he says. Its good you filled it because with CDiff things can go south very quickly, in a matter of hrs. Hope you don't need to take it and you are on the road to recovery. Keep us posted and good luck. Carol

[ppp67]

well, I started taking VANCO.
I went several hours yesterday pretty well without a BM.
But around bed time, I went twice or more and it was very orange and wet.
So I don't think that is really an improvement.

Slept all night but this morning was the same as last night and my stomach
was cramping. Still nothing too severe, vomit, whatever.

So....
I'll keep you updated.
I consider myself really healthy and the only reason I'm sick is I was stupid
and rushed for treatment when that was 100% wrong.
I hope I'm not going down the same road with VANCO and whatever is next.

[Bobbie]

It takes 3-4 days for Vanco. to "kick in." If it doesn't contact your doctor. Best of luck.

[ppp67]

Really??
For me, it was one day (and a half).
No D, but it is still soft.
Is this ok? Or does it need to be solid again?

Mind you, I'm a BRAT dieter now.
Also took Floristar last night for the first time.
In addition to VANCO, my schedule is
1) Ultimate Flora Critical Care in the morning (and evening after VANCO run)
2) Every meal consists of
* plain probiotic yogurt
* BRAT something
* kefir to drink
3) multivitamin with breakfest
4) Floristar in the evening (discontinue after VANCO run)
5) No coffee, booze, sugary stuff, but I hope to ease
red meat and eggs back in . Any advice as to when?

Does this sound alright?
That's what I will try.
To be honest, I'm not eating much at all.
Several small meals through the day.

When on MEDS, everything seems to be hunky dory.
Going forward, my diet will be the key, along with hand-washing and cleaning.
I wish there was more help because I'm a slob and not a dietician.
Well, maybe that's an exaggeration.

I need a good LONG term diet plan (including probiotics).
Any websites or advice?

BTW, still no word about the ID clinic.
But I will see my family doctor tomorrow. Wonder if he wants to see me??