Atypical case, on vanco

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KileyZ
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Atypical case, on vanco

Postby KileyZ » Tue Feb 14, 2017 7:32 pm

I am a 36 year-old female who received a positive c. diff test last week. I had a positive c. diff result about seven or eight years ago and I believe successfully treated it with Flagyl. I have a five-month-old baby (so was in the hospital about five months ago) and also had an upper endoscopy in early December. I haven't been on antibiotics in many years, so I'm unsure of how I contracted c. diff other than perhaps from my hospital stays or from my baby.

I first started noticing symptoms in December. They were mostly gas-related. I just kept having LOTS of gas that would start mid-afternoon and continue through the evening. After I would have a bowel movement, it would go away, but the cycle would begin again in the afternoon. Some days were better than others. But it started to get progressively worse throughout December, turning into bouts of diarrhea. The diarrhea wasn't constant, more like every couple of days. Not knowing I had c. diff and just going off symptoms, I worked with my naturopath and we tried oregano oil, then a supplement called GI-MicrobX that had some antimicrobials in it. Those sort of made a difference, but the gas and occasional diarrhea always came back. So, finally, I went to the gastro and ran a stool test and got the positive c. diff result. Since I'm nursing and had been on Flagyl (over seven years ago), my gastro put me on Vanco, standard dose (I think 125 mg 4x's a day for 14 days). I'm on day six and while I'm not having diarrhea, I'm still having lots of bowel movements (solid!) and still have the gas (not a ton, but enough that I'm questioning if this is working). I wasn't having a ton of diarrhea before starting treatment. I was even a bit constipated (like only going one time a day sometimes, but sometimes not). I should mention I've been on VSL#3 for a couple of years, and just recently started a probiotic with Saccharomyces Boulardii + MOS from Jarrow, since I heard it helps with c. diff.

I'm very worried about this not going away (since I haven't seen that much of a change), and I'm super confused about my case since I wasn't having constant watery diarrhea but more gas, cramping, sometimes diarrhea. I originally thought it was more SIBO-related, but got the c. diff result.

My questions:
1) Since I'm not seeing a big change in my bowels since starting the Vanco, is that a good indication that I will probably need another round or increased dose? From what I've read from other posts, by day six or so people are seeing a change, and if it's later, then the meds aren't super effective. I've read from all your stories that I need to wait and see after I'm done with the meds to see if my bowels have changed (three day rule), but would still be interested in your opinions.
2) I have Graves disease. It's well controlled with medication. Does having an autoimmune disorder put me at increased risk? Is that maybe why I contracted it?
3) How likely is it that I've gotten this from my 5-month old vs. an endoscopy? I'm just trying to figure out how I can prevent it (hopefully after beating it)?
4) Since I'm not your typical case, could I have SIBO AND c. diff? Have others had lots of gas?
5) I find it odd that my doc put me on Vanco when I successfully treated it with Flagyl a long ago. My pediatrician was fine with me taking Flagyl and nursing, so I'm confused. If Vanco doesn't work, could I try Flagyl?

I'm praying that this Vanco will kick this, but am discouraged by the lack of change. I read all these horror stories about not being able to get rid of it.

Any other recommendations?

Lastly, thank you to all who have shared your stories. You have answered so many of my questions already.

Kiley

beth22
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Re: Atypical case, on vanco

Postby beth22 » Wed Feb 15, 2017 2:43 am

Hi Kiley - Welcome to the site. Please read the first forum for information and posting guidelines. I'm so sorry that you have to go through this again. What you describe sounds very similar to how my c diff manifested originally. I had lots of gas, off and on D, and also C. That was after taking Cipro. But, when I added a cream containing clindamycin, the symptoms got worse and I got a lot of M - bms increased too. I was put on vancomycin and my gas did not get any better either. I would say that it got worse, actually. The probiotic that you are taking - sacc. boulardii gives me tons of gas, bloating and cramping. I also got a rash from it.

It's hard to say how much SIBO plays into this. I have it too, but I don't know if I had it before I got c difficile or as a result. I think it was as a result of the c difficile. I would not take Flagyl while nursing. Xifaxan is a medication that is given for SIBO and it works for most strains of c difficile. With a mild case like you had, I'm surprised that this was not an option for you, but I am not a medical professional. If the vanco does not agree with you, you might ask about the Xifaxan and check to see if it is ok to use while nursing. But, to answer your question, many complain about gas. I had a lot of it during c difficile and also after coming off the vanco. It was really bad when coming of the vanco because it changed around my intestinal flora. I still have problems with gas and now doctors attribute it to SIBO.

georgina
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Re: Atypical case, on vanco

Postby georgina » Wed Feb 15, 2017 3:57 am

Sorry you are having issues Kiley. Vanco should be able to control your symptoms and reduce frequency by day 5 , if you are still having symptoms you should go back to your doctor and discuss about raising your dosage or Dificid. Also it might be a good option to run some additional tests for other pathogens as well :stool culture , parasites , SIBO breath test etc. Do check your thyroid levels as well , because Cdiff has a tendency to mess with the immune system.

Ril
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Re: Atypical case, on vanco

Postby Ril » Wed Feb 15, 2017 10:39 am

Kiley, so sorry you are having so much difficulty especially while tryIng to enjoy your new baby. I would certainly not ask for Flagyl. That would be going backwards. I agree with Georgina about asking your dr about your vanco dosage or switching to difficid if you are having no improvement.
I doubt that you got c diff from your baby. Although not usual, unfortunately sometimes now it is acquired in the community with no known source and that is what is making it such a threat. Regardless, make sure you continue good hand washing practices.
Also, as Georgina suggested I would ask to be checked for other pathogens just in case. I would guess this is all from c diff or possibly SIBO but ruling out other things is always wise with atypical symptoms. If everything else is ruled out and you still have some of those symptoms your dr might then want to order the xifaxan. It is being used for c diff at times with the usual meds.
These are all discussions to have with your dr.

Good luck,
Rita

NanciT
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Re: Atypical case, on vanco

Postby NanciT » Wed Feb 15, 2017 10:55 am

Hi and another welcome to the site

I agree with the others, I would not go back to Flagyl , give the vanco time to work and discuss additional testing with your physician. Often we have many on the site who were not on antibiotics and do not know where they picked this up. We have also seen member who have not been in any medical facility at all, on no antibiotics so it's tough to know where it was picked up. Physicians tend to put CDIFF in a "BOX" as excessive diarrhea. I probably had it for months with 2-3 bouts of diarrhea only in the am, weight loss, gas and felt sick. In my case my first GI missed it.

Hopefully Vanco will take care of it and you can enjoy your new little one!

roy
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Re: Atypical case, on vanco

Postby roy » Wed Feb 15, 2017 12:27 pm

Something to consider is that you are not having or never had typical c.diff symptoms and that c.diff meds are not having any effect on the symptoms that you do have.
If it don't walk like a duck and don't quack like a duck, it's probably not a duck!
A positive test does not always mean you have c.diff as a disease.

KileyZ
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Re: Atypical case, on vanco

Postby KileyZ » Wed Feb 15, 2017 6:07 pm

Thank you to all of you for your replies. I truly appreciate you taking the time to read my long post and background and provide your thoughts. It seems there's a consensus in your recommendations to consult with my doctor for additional testing, sharing about my continuation of symptoms and discuss potentially trying other medications or upping the Vanco.

My gastro DID test for other things (I don't recall what they all were), but I know giardia (sp?) was in there, and he tested my digestive enzymes, and something about lactose was there. I had to fill about 12 tubes, so he tested a lot. When we spoke, he said everything else came back as normal, just the c diff result came back positive. He did NOT test for SIBO and I've never been tested for SIBO. I was just guessing based on my symptoms - gas, cramping, occasional diarrhea, brain fog. I've also had issues with yeast in the past. When we spoke at my initial appointment, he did not think it was SIBO since I hadn't had any antibiotics for years and I didn't have any kind of abdominal or intestine-related surgery.

He suggested I follow a FODMAP diet, which seemed to help a bit, but then when I received the c diff diagnosis, he said to not follow the FODMAP diet since some research had shown the lack of diversity in the FODMAP diet can sometimes contribute to c diff.

I will continue to take the vanco and see if there is any change after stopping. I'll try and post back and share what occurs, as I know how helpful it is when people share how they've progressed - whether they've improved or not. It seems so many people post and then we never know what happened to them!

Thank you again for your advice and recommendations.

Kiley

beth22
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Re: Atypical case, on vanco

Postby beth22 » Wed Feb 15, 2017 9:07 pm

Kiley - You don't only get SIBO from taking antibiotics. You get it from slow motility and sometimes an infection can also trigger it. Campylobacter and c diff are two of them. I go to the doctor who is probably the leading specialist in SIBO in the US. He goes all over the world to lecture and now only sees patients one morning a week because of his research, teaching, and lectures.

The diet you were following does help SIBO. If your symptoms continue after your treatment for c difficile, you can always get a breath test, but you can't do it now as you are on antibiotics. You have to have been off of them for at least 3 weeks I think it was. Anyway, wishing you a speedy recovery.

KileyZ
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Re: Atypical case, on vanco

Postby KileyZ » Tue Feb 28, 2017 5:54 pm

I just wanted to post a follow-up as I think it's important to see where these cases go and if they resolve or don't. I know that has been helpful to me as I've read patient experiences.

I finished by two weeks of vanco (250 mg 4x's a day) about six days ago. I was hopeful that it was working as about 11 days in I was feeling pretty good, but then I feel like the symptoms that caused me to go to the doctor in the first place, lots of gas, cramping, large and loose bowel movements came back around day 11, especially the gas. It continued until the end of the treatment. Still, I wanted to wait a while to see how my body reacted off the vanco. I was still somewhat gassy for a couple days and it has started to get progressively worse, and I feel like I'm just back to where I started - gassy throughout the day and evening, some cramping, with a large BM in the morning.

I'm still going only once sometimes twice a day. It's solid, not watery DH, but a LOT. But, I'm crampy and gassy throughout the day and kind feel like have to go. So, still not sure if this is c. diff or if it's something else. Because I'm pretty much the same, I will probably schedule a follow-up with my doctor. He said next steps would be to do a vanco taper and then FMT, if needed.

Also, the urinary discomfort did go away once I discontinued medication. Woo hoo!

Is it possible to relapse while taking medication?
My doctor never mentioned Dificid. Is this a very expensive medication? I already paid $650 for my vanco. Yikes! Would you recommend trying that before a vanco taper?
I definitely want him to check for SIBO before we do another round of meds, but will have to wait another couple of weeks since I've been on antibiotics.

Thanks for all your advice!
Kiley

beth22
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Re: Atypical case, on vanco

Postby beth22 » Tue Feb 28, 2017 6:36 pm

You have to be off antibiotics for close to a month to test for SIBO. However, Xifaxan is prescribed for SIBO and it used to be taken as a chaser to vanco sometimes. You could ask your doctor about that if Dificid is not covered by insurance for you. Dificid is more expensive than vanco and there is no generic.

georgina
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Re: Atypical case, on vanco

Postby georgina » Wed Mar 01, 2017 1:48 am

Having 1-2 large BM in the morning that are somehow solid doesn't sound like CDiff , it may be something else (definitely a good idea to get checked for SIBO , parasites , other pathogens , gluten or lactose intolerance etc) or it may just be dysbacteriosis. Do not jump on meds unless you are 100% sure about what you are dealing with , because you do not want to overtreat. If you start getting classic Cdiff symptoms and you test positive again , Dificid might be a good idea because it made to target only clostridia and spares the good flora.Although it is a VERY expensive treatment , there is a assistance program that can help you get the treatment for a more affordable price.

KileyZ
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Re: Atypical case, on vanco

Postby KileyZ » Wed Mar 22, 2017 1:21 pm

Hi All, I wanted to share an update. About a week and half off the meds I was still gassy with large BMs in the morning (solid), when all of a sudden, it stopped and I became my old self. No more gas, and my BMs were definitely solid...even almost constipated. I was that way for about three weeks when about a week and half ago, my whole family caught a 24-hour stomach bug. Things seemed to resolve okay for a few days, although I was very bloated and retaining a ton of water (probably dehydrated). About six days after the 24-hour bug, I woke up and diarrhea in the morning, and now it seems I'm back to how I was when I was diagnosed with c diff. I've got stomach cramps throughout the day and loose stools in the morning. Not diarrhea, but softer and several BMs. I called my doctor and he ordered a stool test to see if c diff is back.

Questions:
1) Can a 24-hour stomach bug cause c diff to recur?

2) Is there a chance my body might heal this on its own? I started out with diarrhea, but now am a bit more solid, but still have abdominal cramping throughout the day/night. I really don't want to go on vanco again (expensive!, caused bladder issues, not sure it was the vanco that cured me, but my own body). I've been taking VSL#3 (evening) and saccharomyces boulardii in the morning.

3) If I did medicate, should I do another round of Vanco, a vanco taper or switch to Dificid? When I treated (this was my first treatment for c diff in seven years) and we did 250 mg of Vanco 4X's a day. My doctor said the next step was a vanco taper, but I thought the typical course was to try at least two rounds of meds before a vanco taper. I did treat c diff with Flagyl in the past, but that was 7 years ago, so I'm not sure I should jump straight a taper.

4) My vanco was $650, and I know dificid is even more expensive. I looked up the assistance program, but does anyone know what kind of assistance it provides? Like how much of a discount you get?

I'm still nursing my baby. He's a six-month old 23 pounder who is not too keen on solid foods quite yet, so to be dealing with this while continuing to breastfeed is exhausting!

Thanks for your recommendations, advice and knowledge!

Kiley

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Re: Atypical case, on vanco

Postby amyc » Wed Mar 22, 2017 2:43 pm

1. Yes, a virus could wipe flora out enough to cause a relapse. However, your symptoms really don't sound like C diff. I would recommend a full panel of stool tests to make sure everything is OK. If everything is OK (as I would expect) I recommend you ask about IBS treatment. Honestly, treating minor discomfort with a huge antibiotic like vancomycin seems unwise. Your symptoms could be caused by minor gall bladder dysfunction, food intolerances, hormones, or any number of things. I have found colestipol really useful for symptoms like you are describing. Some people have success with Metamucil.

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Re: Atypical case, on vanco

Postby amyc » Wed Mar 22, 2017 2:52 pm

I can't take florastor at all. It makes me miserable with gas and multiple BMs a day. You might consider dropping it to see if it helps.

beth22
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Re: Atypical case, on vanco

Postby beth22 » Wed Mar 22, 2017 4:59 pm

I agree with Amy. I would ask the doctor to run tests for other pathogens and even parasites. I did relapse with c difficile after an intestinal virus, but my doctors told me to just take Pepto Bismol, which I did, with meals for a couple of weeks and then tested negative later on. It can resolve on it's own. I can't take Florastor either. I get cramps, a lot of bloating and gas and even D.


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