recovering from c. diff, but a few questions...

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greystreet41
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recovering from c. diff, but a few questions...

Postby greystreet41 » Wed Mar 21, 2007 9:06 pm

hi, I've found this forum to be wonderful. I had c diff. after taking augmentin about a month ago. I've been off the flagyl for almost 2 weeks now. Everything seems to have returned to normal except the mucus. I may not notice it every day, but seemingly every other day there is quite a bit of mucus present. I "thought" I read in the forum here somewhere that you can still have mucus for awhile, but I've been unable to relocate that tidbit...
thanks in advance,
grey

Sheila1
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Postby Sheila1 » Wed Mar 21, 2007 9:17 pm

Hi there,

Mucus is generally a sign of inflammation, it's also common with IBS and other intestinal disorders and/or illnesses.

Not to worry as long as you don't have diarrhea or blood or high fever. Mine went away after my intestines were healed better (couple months) but returns now and then - I was left with post-infectious IBS from cdiff so have 'flares' on occasion.

So glad to hear you are doing well - that's great news indeed!
~Sheila

greystreet41
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Postby greystreet41 » Wed Mar 21, 2007 9:21 pm

thanks Sheila, there is a little bit of blood. I'm back to being pretty "regular" too. No fever, appetite is hearty again, acitivity level is rising daily. I'm hoping it's just all part of healing. This place has been a blessing and a curse. I told my doc last week about fecal transplants and he said he's taking away my internet access. :)

greystreet41
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Postby greystreet41 » Thu Mar 29, 2007 3:05 pm

just wanted to update: Had a sigmoidoscopy yesterday. There were a lot of small white bumps near the bottom of my colon. He took biopsies at a few different places. He said it may be pseudomembranous colitis, but he wasn't certain--pending results of course. He went on and put me on Xifaxan pending the outcome of maybe still having cdiff. He's more confused with the fact that I have not had "D" and he seemed to suggest the inflammation was lower in the colon than what he expected so I wasn't sure how to take that.
This is my main question: I have felt GREAT the last few weeks with the exception of potty time (blood/mucus). Is it posible for Cdiff to still be active with no fever, "D", and generally feeling great?
thanks a lot,
grey

prairierose
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Postby prairierose » Thu Mar 29, 2007 7:51 pm

Grey,

One of my C Diff relapses was very similar to what you have described.

I was 5 weeks off of Vanco, but started getting blood and mucus (no diarrhea though). I was in for a sigmoidoscopy and they found the white plaques. Biopsies were taken and it was still C Diff.

If you don't beat it this time, you will eventually. I was glad that it wasn't a full blown relapse and I was able to get back on Vanco in time.

All the best,
Prairierose
Cdiff 1 year. Flagyl then MANY rounds of Vanco with Questran/ Rifampin/Fusidin. Finally two Fecal transplants and currently 13 months C Diff free! :)

boxer77
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Postby boxer77 » Thu Mar 29, 2007 10:36 pm

I had regular bm's with mucus and blood, no fever, and cdiff toxin a. I didnt get the fever until I severly relapsed these last couple of times.
Seems the flagyl killed what I had left lol. and my colon is more enflamed now. I went two weeks without now anything about cdiff, then I went to the doc when the blood was visable, not a lot but anyamount should raise concerns, worth talking to doc about.
I think its a good possibility that you have it again, I know I wouldnt want to here that, but I always prepare for the worst, specialy with this stinking bacteria.
Godspeed.

greystreet41
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Postby greystreet41 » Fri Mar 30, 2007 10:50 am

results back today with the office nurse reading it back to me as if it was a foreign language...she said I was still positive for cdiff hence the psudomembranous colitis. This is day 3 of Xifaxan. After the sig-flex, stools are appearing to look more normal after that big flush out but some mucus is still evident, but with little or no blood right now.
I really think the prep work (flushing) helped in some ways (is that possible and if so do some people take magnesium citrate and do enemas more frequently?)
I'm kinda bummed, but not totally. I had no sedation for the sig-flex so I was able to see the inflammation (at least as far up as the sig-flex goes) and it didn't look as bad as many images I have seen online. Nor can I complain because I do not have "D" and generally feel GREAT in comparison to my intial bout 6-8 weeks ago. Do I call this a relapse or recurrent or something else.
Last question. He's going to have me on the Xifaxan for 10 days (1200 mg a day), but I've read people here are on it for 14 days...any thoughts on that?
thanks a lot,
grey

mugyver
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Postby mugyver » Tue Apr 03, 2007 9:56 am

As new as a member as I am (IE 5 minutes ago) I can tell you that I found this site in the middle of march.

I went to an emergency dental visit an the dentist forced me to take clindamycin even though I had already taken azithromycin, claiming that they had never heard of azithromycin being used for endocarditis prophylaxis (sp?). They then put me on a week of clyndamycin starting that evening 4x150mg so that same day I had already had 500mg of azithromycin and 900mg of clindamycin. 2 days after I finished the clindamycin I became ill.

It started off just going every few hours and then every hour, even when there was nothing (IE just the blood and mucous) then the attack hit and had horrible D every 2 or 3 minutes for about 6 hours, it was 4:30 in the morning and so my doctor had me take immodium so I could sleep. The next few days I started to get back to normal and then all of the sudden another D attack this time it started the same way but because of the stomach pain, my mother picked me up and somehow I made it to the ER (I could barely get away from the toilet and had to make a make shift diaper to get in the car). I was in the ER for over 30 hours and they to had given me immodium (though after I saw the GI that was quickly stopped) During those 30 hours, I had not eaten since the day prior, so maybe 40 hours without food and then they gave me liquids until I was discharged 3 days later.

I was put on Flagyl and everything has seemed like it was getting better. Every day I felt much better and after a week I was allowed back to work. I just finished the flagyl 4x250mg yesterday afternoon and I'm thinking that I'm getting it again.

I don't have D, but I'm going more often again and theres the little bit of mucous and in the mucous a little line of blood).

I'm scared and don't know what to do. I can't work if I have an attack, but I need to work. I've already lost pay due to this and I have bills.

and if I have an attack, I don't know how I'll be able to get meds. Should I just call my doctor today? I've only been off the flagyl for not even 24 hours yet, but I work nights and if I have an attack then, I don't know what I'll do.

I'm 23 years old and have never experienced this before and I'm even more scared because I have more dental work shortly and must premedicate because of my mitral and tricuspid valve prolapses.

and what makes it worse is that I take ritalin, which has always made me "have to go" 30 to 45 minutes after I take it and I'm afraid it might cause problems.

I just don't know what to do.

Do I wait and see what happens? Or do I contact my doctor immediately to get back on flagyl?

I too have been wondering about the alcohol thing and I've been really stressed recently as I quit smoking a month ago and can't even have a good drink or eat what I love (Food is one of my passions).

I'm stressed, scared, depressed, confused, hurting for cash, and can't imagine living like this for the rest of my life.

I'm so sorry this is so long and possibly off topic, but I have no where else to turn.

Nancy1
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Postby Nancy1 » Tue Apr 03, 2007 12:25 pm

mugyver (like your name, that was my son's favorite TV show),

Welcome to the group that no one wants to join. Check out Dr. Borody's article and the FAQ section. Hang in there, it will get better. You will not live like this the rest of your life. Most people (about 80%) recover after 1-2 rounds of Flagyl or vanco. If I were you, I would call my doc. You may need to get back on Flagyl or vanco.

However, take a look at the 3-day rule in the FAQ section. If you are having a relapse, it will continue to get worse. I had mucous and even some blood for months after recovering from cdiff, so your having these are not sure signs of a relapse. My GI doc told me that most people wait 2 weeks before relapsing, but that turned out not to be true. I always relapsed between 3-5 days after stopping meds. We can relapse any time between 1-90 days.

For future dental work, talk to your dentist about taking another antibiotic besides clindamycin, which is one of the worst ones for causing cdiff. See the FAQ section for info about antibiotics. Good luck.

mugyver
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Postby mugyver » Tue Apr 03, 2007 1:29 pm

Im one step ahead of you. I called my doctor (family friend) who is apparently away on vacation (aruba) for 2 weeks, but all the nurses at the office know me and they had me call the hosptital I was at to speak with the doctor that had put me on the flagyl.

I actually called his office and they told me he was at the hospital, I then explained the situation and they told me that the doctor only deals with inpatients and not with ones that have already been released. I called my doctors office back and they had me call the main hospital line and have them page the dr. They put me through to his office again. It went round in circles.

Finally my dr's office had me call their hospital instead to talk to the GI, but, he's booked until May. Feeling that I couldn't wait until may for something to be done my dr's office then called the hospital directly and the spoke with the GI.

The GI said that if the flagyl had worked, that I would not have mucous and blood in my stool at this point, nor would I have gone from going 1-2 times a day while on the flagyl, to going 4 times (so far) less than 24 hours after finishing it.

So, my dr's office just called in a perscription of vancomycin to the pharmacy accross the street and I'm going to go pick it up now.

I really hope this does the trick (knock on wood).

And thanks for liking my name :). I was given that nickname because I like to take apart working objects and build other working objects etc..etc.. with the parts.

whats worse is I work night shift and I'm still awake. I'm afraid that I'll have the big D while on shift at work and wont know what to do.

You all seem so wonderful and supportive and I look forward to conversing, though I wish it could have been under better circumstances.

BTW, I'm hungry and everyone is so much different as far as their diets are concerned. I want to eat pizza, steak, vietnamese food, sushi, etc... but I'm afraid of what would happen.

Whats the worst case scenario? Will it be as bad as the day I went to the ER?

I'm so afraid, but I love food so much and cooking and it makes me sad to not be able to share with my loved ones etc...

I was also wondering if there is a Cdiffsupport chatroom.

I like forums and everything, but sometimes you want to ask someone a question in real time to get a quick response (maybe not an answer, but atleast some support and ease of the mind)

Sheila1
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Postby Sheila1 » Tue Apr 03, 2007 8:34 pm

mugguyver,

mugguyver,

Sounds like you got a good GI doc on the phone - lucky for you! The Vanco should resolve the d. within 2 to 5 days (see article by Dr. McDonald Dr. Clifford McDonald's Article)

Will you need clindamycin if you are on vanco when the other dental work is done? Since vanco is supposed to be the best and last, maybe something to check with your heart specialist and dentist about. If they still say it must be clindamycin, what about putting off the remaining dental work until you are well?; and then discuss with your specialists if there is a less broad-spectrum antibiotic you could take? If all else fails, some folks have helped to avoid, or reduce, cdiff illness by taking Vanco along with the other needed antibiotic, and some haven't had success with that method. It's luck in that respect it seems.

You've probably already read that Clindaymycin is one of the worst offenders of cdiff and the most often given before dental work. Check "Antibiotics..." in the FAQ section for others to discuss with your doctor.

My daughter works for an Endodontist and she has warned him about cdiff and told him my story (he's also in NC where the epidemic strain is almost endemic now)....she did talk with him about it. He said he's done some research but said there is nothing else that works for a tooth infection except penicillin or amoxicillin which most people are allergic to (or say they are); he uses Keflex sometimes too if they are allergic to pcn but tolerate Keflex. For pre-meds they use the same things. They prescribe Clindamycin only if the others can't be taken; and last resort is Augmentin if the infection is extremely bad and/or no other antibiotic are working.

Hope something here helps!
~Sheila

Nancy1
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Postby Nancy1 » Tue Apr 03, 2007 10:29 pm

mugyver,

About diet, this is trial and error. (I pm'd you about your detailed question.) Try various foods and see what works for you and what does not. Things that can cause problems are dairy products (although most people can tolerate yogurt), greasy foods, spicy foods, coffee, and alcohol. Too much fiber was a problem for me, although not for everyone. Bobbie always says, eat everything in moderation and nothing in excess. I really like sushi and ate small amounts when I had cdiff, in spite of my doc saying that everything should be cooked, and didn't have any problems. Diet does not cause relapses and so by itself should not send you to the ER.

Sorry, I don't know of any chatroom.

mugyver
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Postby mugyver » Thu Apr 05, 2007 1:38 am

well, The clindamycin was only to clear up an infection, normally I would have taken azithromycin which I have taken before for pnumonia(sp?) and previous endocartitis prophylaxis. So thats what I'd be taking again. The problem here is I have a massive amount of dental work to get done and I must premed every time. :(.

Also some other questions.

the gi that just put me on the vanco put me on only 500mg a day (125x4) for the next 14 days. Is that normal or a little low of a dosage? I haven't had the D since the hospitalization, just not as solid stools as I used to have normally. The flagyl had me feeling better until I finished it and I just started to feel icky again, but hadn't actually gotten D. Thats when I noticed not only mucous still in the stool, but there was something like a line of blood in the mucus and that scared me, thats when I got the vanco and I'm on it now.

I'm hoping I didn't jump the gun here, but I'm so afraid of getting the D again, the cramping and doubling over in tears and pain every few minutes. Not to mention the missed hours at work which I can't afford.

back to the vanco, I went on the vanco about 30 hours after finishing the flagyl. Later that night I wasn't feeling well and so I had to call out of work. Now tonight I'm at work, but I'm getting these little cramps/ sharp pains every so often and I'm not sure if its normal or not.

It brings me back to when I was on the clindamycin, during that week, I was getting these stomach cramps every few hours but didn't think anything of it since stomach pain is a side effect, but maybe if I had stopped taking the clindamycin at that time I wouldn't be in this situation now.

Anyway, the stomach cramps/pain arent as bad as it was with the clindamycin, but I don't really remember having them while on the flagyl and I was wondering (as stated previously) if the stomach pain is a normal side effect of the vanco.

Also, has anyone else ever felt a slight burning sensation in the stomach?

I dunno what else to ask.

Is advil ok to take for headaches? Also, I take ritalin, any ideas if that is going to cause any problems?

is there anyone else around my age that is experiencing or has experienced this?

Sheila1
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Postby Sheila1 » Thu Apr 05, 2007 5:58 am

mugyver,

All antibiotics (including Flagyl and, rarely, even Vanco) can cause cdiff to flare up. It's not the antibiotic that causes cdiff, you have to have acquired the bacteria somewhere beforehand, then the antibiotic kills your good bacteria and lets cdiff take over. So the antibiotic is a huge contributor to the illness, but isn't the cause of the disease.

The normal prescribed dosage of vanco is from 125mg up to 500mg. 3 or 4 times a day (see Dr. McDonald's article and Dr. Fordtran's article too: Dr. Fordtran, Baylor Univ. Article). It is possible you need a higher dosage, talk with your doctor. Many doctors do start with the lowest dose and then wait and watch. The pain is something you could have from a low dose (not working quite well enough) or just irritated intestines. Mucus is generally a sign of irritation. Small amounts of blood aren't unusual, but again you should discuss your continued symptoms with your doctor.

Bobbie's 3 Day Rule is a very good tool when you are going off of, or tapering down, on the medicine. Some IBS is likely until the intestines heal, so the 3 Day Rule gives an unofficial guideline to help us not panic too bad - it really helps alot with that! But if you KNOW for certain you are getting sick again, don't wait to call the doctor.

Have you discussed your dental work with your GI doctor? Ask your GI doc about what to take that would be least offensive to your tender innards :) Most doctors, especially in the dental field, know very little about cdiff and even less about the new, more virulent strains.

If it were me - me having the dental work - I'd either postpone it or at the very least make sure I was taking vanco at the same time as other antibiotic and I would load up on probiotics beforehand. I'm not a doctor though, just a victim.
~Sheila


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