Long Term Vanco (nursing mom, waiting to take poop pills)

[sarahbf]

I have had multiple relapses of C-Diff over the past 4 months -- I got it when I was in the hospital giving birth to my daughter and was given IV Clyndamycin. It took 6 weeks to diagnose, as I got sicker and sicker (with a newborn!) -- but that's another story...

I've been on Vanco off and on for the past 3 months (since diagnosis). I started on Vanco because I can take it while breastfeeding (you can't take Flagyl while breastfeeding). I am fine & feel great on Vanco and immediately relapse when I go off it (even with tapering, which my first infectious disease doctor tried. 2nd ID doctor says if you're having multiple relapses, C-diff strain is too aggressive and tapering won't work, only FMT will).

Because of multiple relapses, I sought out a doctor who can do the poop pills. I am now seeing this 2nd infectious disease doc who does the FMT via poop pills. However, I cannot do the poop pills until I am done breastfeeding as there have been no studies on affect of FMT on breastfeeding infant. I want to keep breastfeeding for at least another year.

My ID doc suggests I can stay on Vanco long term (years if necessary) to keep the C-Diff at bay until I am done nursing and ready to do FMT via poop pills. Fortunately, I have already met my health insurance deductible for the year (thanks $8,000 out of pocket for delivery!) so the cost of the Vanco is not an issue for me. My doc says that I can basically find the right dosage of Vanco to prevent the diarrhea and stay on that as long as I need to.

My question is: does anyone have any experience being on Vanco long term? Anything to watch out for? I have not heard about this strategy before, but this doc seems very up on the latest about C-Diff, knows about the research when I mention what I've read, basically seems to know her sh*t. So I'm inclined to trust her on this. Thoughts??

[Lisa33]

Hello Sarahbf - Welcome to the site, but so sorry you are dealing with c-diff as a new mother. That is just awful. Please read the first forum for all new posters that explains rules of posting, standard intro, etc.

Unfortunately I do not have experience with poop pills as I was a lucky one that was cured by vanco. I have read about people being on vanco long-term. I'm sure if anybody has any experience, they will reply and share. We have several nurses on the board that may be able to share some experiences as well. Since you are nursing, I know that may limit your treatment options. However, have you discussed Dificid with your doctor at all, as that has cured many posters after vanco tapers have failed. I am not sure if that is an option while breastfeeding though. Dificid also doesn't kill any good gut bacteria. Some have done Dificid tapers as well. The other question that I have is why not go with FMT via colonoscopy? That has the highest cure rate of all. I'm just curious as to if there is a reason with going with the poop pills over the FMT colonoscopy.

In any event, stay strong as you will get through this horrible illness. Clyndamycin is one of the highest offenders for contracting c-diff. It's terrible that doctors do not warn us of this risk before taking these high risk antibiotics.

Lisa

[sarahbf]

Thank you Lisa for your response. The reason not via colonoscopy is because I had a bad sphincter tear during delivery and was advised against colonoscopy. Perhaps after more healing though that will be an option.

[NanciT]

Hello Sarah

So sorry you are going through this and especially with a little one!!!

I can only tell you my experience and I don't think the long term effects of extended use of Vanco are known.

I went on it for the typical 10 days after the Flagyl. Then had a relapse and went on a 3 month taper. I had typical symptoms of nausea and just did not feel well. I developed a UTI at the time and had no choice to go on Keflex to clear it up. Then another relapse. Went on Dificid, relapse again and 3 month taper of Dificid.
I am mentioning this history because I had another UTI and kept going back on the Vanco. The CDIFF did not return but the bladder issues continued. My GI did not feel they were related and told me no one has side effects from Vanco. Well...now it's clear Vanco can cause UTI's and bladder pain. It's been 6 months since I have taken Vanco and currently my bladder symptoms are getting better. It has taken me a long time to recover from IBS from all the medications and the Bladder issues. I finally brought information into the urologist and he felt more than likely the Vanco caused this issue for me. There have been others on the site who have had similar issues. Although my GI did not know of this, my Pharmacist was aware.

Many on this site have taken Vanco with no issues, but I thought I would tell you about my experience.

I agree with Lisa and would check back with your GI and OBGYN about Dificid to see if that is an option if you continue Nursing.

I hope you feel better soon
NanciT

[beth22]

I can tell you that in my opinion the vanco I took for months and months, messed up my system worse than the c difficile. I have had IBS and SIBO ever since and I did not have it before. The more vanco I took, the worse I felt. Colonoscopy or enemas are much better in my opinion than poop pills. I had an ng transfer for my first FMT and I relapsed. In those days, the pills were not available. According to my SIBO specialist, poop pills or having the ng transfer as I did, are the best way to get SIBO and that is not very easy to get rid of. I would look into a colonoscopy transfer or enema transfers when you are a bit more healed. I know you can't do those when you are pregnant, but I would ask about while breast feeding.