c-diff and post-partum

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
nutmegchan
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c-diff and post-partum

Postby nutmegchan » Sun Dec 04, 2011 1:33 am

so i had what i think may be a relatively unique case (or circumstance) of c-diff. i haven't come across many (if any) cases where the person was infected in the same situation as i. i'm 26 and became infected at the hospital when i gave birth 5 1/2 months ago. i was given the antibiotic cleocin as a preventative measure for a fever i had when in labor and that's what started my downfall. i knew nothing of c-diff at the time and was not diagnosed until my daughter turned one month old. during this time i was so worked up about my daughter getting it, but if you are post-partum with c-diff just like i was, i do want to reassure you not to worry (cause you definitely don't need any more things to worry about than you already have). as it turns out 70% of infants already carry c-diff but do not suffer any symptoms because their systems aren't developed enough yet and so they don't respond to the toxins. once they are about a year old and their bodies more developed, they are then able to rid themselves of the toxins on their own so they never have any symptoms.

i was diagnosed initially through my obgyn who prescribed me metronidazole which i declined due to the fact that i was breastfeeding. my doctor told me it was "safe" for breastfeeding but my mother who is a pharmacist told me to not take it because it gets absorbed into the body. she told me to ask for vancomycin instead since it is very poorly absorbed. so i did a 2 week round of the vanco. less than a week later the symptoms were back. this time i called my obgyn for my vanco while i searched for a gi doctor. i then did a second round of vanco for two weeks. one week later my symptoms came back again. during the time i had seen the gi doctor who then put me on a vanco taper. so round 3 was a vanco taper that i had to stop 10 days early due to returning symptoms (that only appeared for one day). two days after symptoms appeared i was put back on vanco for two weeks but this time followed by 2 weeks of xifaxan.

during this time i sought out another gi to get a second opinion. i saw him a few days after i had started the xifaxan. he recommended instead of doing 2 weeks of xifaxan to taper it after 10 full days. in addition to this he told me that once i started tapering that i should really pump probiotics. the two he recommended were sacchromyces boulardii and vsl#3. he told me both unlike most probiotics that these two specifically have had clinical testing on effective treatment of c-diff. he said while i was tapering that i should double the recommended usage of the probiotics and then once i was off that i could go to the normal dosing. both of these probiotics have varied suggested usage amounts, but i took 3 packets/pills of each a day while tapering every 2 then every 3 days.

i've now been off the xifaxan for just over a week and continued to take 3 packets/pills until today, now i am going to be taking 2 of each. so far everything seems to be doing well and i'm feeling really confident this time that i may have finally beaten it! i think the probiotics, specifically the vsl#3 which is a really high potent probiotic is what is really helping me now. my first gi said that it can take up to two years for your gut flora to return to normal so i will continue to be taking the probiotics for a while. i had thought for the longest time that i had a "severe" case since it was taking so long but i now believe i only had a mild-moderate case but due to the nature of c-diff, it still takes a long time to get rid of it. so for anyone who is finding themself in a similar situation as i, i highly recommend pushing the probiotics not after but during your taper so as to give your system a jump start for when you finally go off the antibiotics.

klt03301
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Re: c-diff and post-partum

Postby klt03301 » Sun Dec 04, 2011 10:06 am

So glad to hear that you're finally doing well and congratulations on the birth of your daughter! I believe probiotics helped me, too, though I took a different kind. There have been mothers here that have contracted C.Diff after giving birth, and I'm sure your success story will be an encouragement to them!

Thanks for posting and wishing you the best!

Karen

nutmegchan
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Re: c-diff and post-partum

Postby nutmegchan » Sun Dec 04, 2011 4:22 pm

thanks! i wanted to post this for that exact reason, to give other people hope, particularly those in a similar situation as me! having c-diff is difficult for anyone, but it's definitely one of the last things a new mom certainly needs on top of everything else. but i eventually got through it, though it wasn't easy, but i've moved on and it's almost like i've blocked out all the pain and worries i had out of my head already (kind of like labor pain!) hopefully my story will give hope to at least one other new mom out there.

kateddc
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Re: c-diff and post-partum

Postby kateddc » Wed Jan 18, 2012 1:18 pm

Thank you for this post. It's gave me hope. I gave birth 10/15/11. My mother-in-law stayed with us and ended up going to the hospital with c-diff within 4 days of coming home. She had this before and was re-infected. Then after being on antibiotics to treat my infected c-section incision, I came down with c - diff. I've been on 14 days of flagyl, 14 days of vanco, another 14 days of vanco, and now am on both the flagyl and vanco together + cultural and my symptoms just came back today after being on both the meds together. I have an infectious disease appointment this Friday to see what else I can do. I've been to two internists, a GI doc and now the infectious disease doc. All of them have given me conflicting answers on how to treat this. I'm feeling quite depressed because my entire maternity leave has been plagued and tainted by this awful situation and I'm losing hope.

beth22
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Re: c-diff and post-partum

Postby beth22 » Wed Jan 18, 2012 1:37 pm

I would ask about the new medication, Dificid. Many who relapsed on Flagyl and vanco have had success with it. You could also ask about doing a stool transfer, but I would definitely check about the Dificid first.

Kathy George
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Re: c-diff and post-partum

Postby Kathy George » Wed Jan 18, 2012 3:15 pm

Kate, Gosh…. Talk about the detours of life!!!! First of all, congratulations on the birth of your child. Secondly, you have a right to be depressed. What a bad deal you have been handed, C-diff after the birth of a child. Dealing with C-Diff alone can be quite debilitating on its own, no less caring for a new-born during this interim. I agree with Beth22, this new medication, Dificid, has a very high success rate. I believe an ID appointment at this time is a great choice. You need to be your own advocate and solicit feedback in regard to this new medication. If push comes to shove, there are other options out there. One option is the Home Enema Infusion Therapy Treatment which was effective in conquering my long drawn out C-diff journey. Actually, my adventure with c-diff almost mirrors your journey with this disease. I was on all those therapy methods, but not one was successful. Unfortunately, Dificid was not on the market when I was suffering from this disease. Perhaps, this new medication, Dificid, may be your pathway toward a complete recovery. Good luck and please keep us updated!!!!
I ask not for a lighter burden, but for broader shoulders.

youngmom28
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Re: c-diff and post-partum

Postby youngmom28 » Wed Jan 18, 2012 3:23 pm

Kate,

Dont give up hope. I gave birth to my daughter via csection on january 11 2011. i developed cdiff after 2 weeks and the antibiotic clindamycin that they put me on during labor. I couldnt take care of my daughter for the first 5-7 months alone. it was so depressing.

It took months for me to get over the anger that cdiff stole time away from the first 7 months of my daughter's life. this was my first child that i did fertility treatments to get! she is my everything and i thought i was never ever going to get better. i was hospitalized 3 times right after she was born and was so so anxious and depressed. it was horrible, but i can tell you there is light at the end of the tunnel!!

i took dificid finally after 4 relapses. i have had some very very bad days since august 3 (my last antibiotic), but have tested negative for 6 months and am sure its gone. IT WILL END I PROMISE! I spent many nights with my husbad and daugther crying b/c i was so sick i couldnt take care of her....but its over!

Keep strong for your child, that was the only thing keeping me going. surround yourself with support and distract yourself, i put together a baby book for my daughter and i journaled....also, stay on top of your own treatment! the doctors and secretaries know me by name :)

Congrats on your birth and keep your head up! PM me anytime you need!
Love and Prayers,
Marissa

amyc
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Re: c-diff and post-partum

Postby amyc » Thu Jan 19, 2012 12:51 am

Congrats youngmom, and I'm so happy your tests have been negative, and now you're feeling better!

Bobbie
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Re: c-diff and post-partum

Postby Bobbie » Fri Jan 20, 2012 2:06 am

great advice, young mom.

renamom
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Re: c-diff and post-partum

Postby renamom » Sat Jan 21, 2012 12:46 am

I too be became infected with cdiff a week after giving birth. I became very depressed bc I also couldn't enjoy my newborn and bc my Breastmilk had dried. I would cry every day and would lock myself in my room to scream. The only thing that kept me strong was reminding myself that my child needed me to be strong. When we are desperate to get better we fight harder. My mom is religious and wrote on my dry erase board: Isaiah 41:10 which says not to fear bc god is holding ur hand. That helped me more than I thought. There is hope. it just takes patience. Now, Im healthy again enough to take care of my baby and guess what? With hard work and dedication, I've relactated! It's hat helped me at the end was Dificid.

nutmegchan
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Re: c-diff and post-partum

Postby nutmegchan » Sat Jan 21, 2012 2:09 am

wow renamom that makes me SO happy to hear you were able to breastfeed again! that was one of my fears as well but i was very fortunate having only taken the vanco to have been able to breastfeed. i really hope that gives others hope that they too can continue breastfeeding, even if they thought they were done as well!

Cm517
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Re: c-diff and post-partum

Postby Cm517 » Sun Feb 05, 2012 4:58 pm

I started to cry when I read all your struggles with c-diff after giving birth. I gave birth to my daughter last May. I was in labor for 38 hours and was able to have her without having a c-section. When my daughter was 2 weeks old I was admitted to the emergency room with what they thought was a bad kidney infection. I had a very high temperature, UTI, and bad lower back pain. I was given an IV antibiotic (not sure of the name) for 2 days and sent home with cipro. They said both were safe and that I could continue to breastfeed. The weird thing was that nothing ended up growing in my urine cultures while I was in the hospital so they are not sure what I had. My family and I wonder if it could have been the cdiff all along contracted from the hospital when giving birth but we will never know.
After finishing the cipro at home for the next week, I continued to have lower back pain (which is what sent me to the hospital) so I went back to the doctor. They said I had a bacterial infection so they then gave me amoxicillan for another week. The weird bowel movements started while on cipro and continued. I went the entire summer having good and bad days and I just figured it was due to the antibiotics, so I took a probiotic and focused on my daughter. Starting in the beginning of September 2011 I lost 5 Ibs immediately (which wasn't alarming at first since the rest of the baby weight had luckily fell off probably due to the cdiff all along). I then started having episodes at least once a week where I would get incredibly ill and be in and out of the bathroom for 6 hours straight. This is when I knew this wasn't just a side effect of the antibiotics. I went to a GI and they ran blood work. He thought it would be good to run a cdiff test since I had been on antibiotics a few months before. Of course that came back positive. I was relieved that all I had to do was take flagyl until I started to read up on cdiff. I did the two week course of flagyl and the cdiff returned 2 weeks later. I was put on vanco for two weeks. It returned again 5 days later and violently! I woke up Thanksgiving morning sick and in tears that c-diff was preventing me from enjoying my daughters first Thanksgiving with her. My doctor put me back on vanco and said that he was concerned there were other issues (Crohn's mainly) plus he felt a small mass in lower abdomen. He said it is rare for a healthy person to not get rid of c-diff. This made me angry and stressed, because with all that I read it didn't seem uncommon at all. He told me I needed to have a colonoscopy and CT scan.
I had the CT scan done before Christmas and it came back normal, except for the fact that my small intestine and colon were backed up. So apparently I was having d and c together. I was told to take mirilax and benefiber and continue with Vanco. The holidays were stressful and I didn't seem to be feeling much better. I continued to not have an appetite and my bowel movements were still inconsistent. I started to taper off vanco (3x for 7 days, 2x for 7 days, 1x for 7 days). Each time I tapered down I felt sick the first few days but it then got better. I had the colonoscopy on January 17th and he said everything was normal. There was no sign of infection or inflammation and stop taking Vanco and resume a normal diet. I should mention that I have been taking liquid acidophilus, culturelle and Saccharomyces boulardii, and bio-k this entire time.
I have been off meds for 3 weeks now. I take my probiotics daily and everything was seeming normal again. However 2 days ago I started to get the cramping again. It is difficult to tell if this is IBS (which my GI warned I will have), menstrual issues, or the c-diff returning. My GI seemed to dismiss any concerns I had after my colonoscopy and said that just because I have D or more bowel movements doesn't mean the c-diff is back. However I just can't stop worrying. Another major symptom I always get with the cdiff is a lose of appetite and I am currently forcing myself to eat.
My daughter is now almost 9 months and this all started when she was 4 months old. I have tried to enjoy every second with her but it has been difficult. There are days I just look at her and cry because the last 5 months have been such a roller coaster and I wish I could have enjoyed them more. I am frustrated and scared that I will never get rid of this. Thank you for sharing your experiences it has helped tremendously.
~Cory

nutmegchan
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Re: c-diff and post-partum

Postby nutmegchan » Sun Feb 05, 2012 5:21 pm

hey cory,

i think we definitely all understand what it's like having that fear that it's coming back. i've been off antibiotics for 10 weeks now and i still worry anytime i have an off day, or even if i just have a gurgle in my belly. it has taken me a long time to finally understand that this is normal GI adjustment after everything we go through. they say with c diff if it comes back, there are no good and bad days, just bad that keep getting worse. and i know for me, everytime i relapsed it always came back full force, it didn't come back gradually. during the week of christmas i had symptoms come back that i had only had with c diff and thought for sure it must be coming back, but i still didn't have diarrhea. my GI doctor said it takes on average about 3 months for your good flora to come back and after that point we are considered safe. though to have made it even a few weeks off without relapsing is usually a sign that we are out of the woods he said.

i really truly think it was the tapering but mainly the probiotics that did the trick. i'm still taking mine. my GI doctor recommended taking sacchromyces boulardii but also a high potent multi-strain probiotic called vsl#3. he said this is the only probiotic that has actually had clinical testing done on c diff. typically most probiotics have 5-10 billion bacteria per serving but this has 450 billion. i have been tapering off that as well but for the past month and for the next few weeks (until i reach my 3 month mark) i will continue taking one pack of the vsl#3 every other day. it is best to order that stuff directly off their website cause they offer free overnight or two day shipping (depending on the day) and it gets shipped in refrigerated packaging.

sounds like things are finally clearing up for you though and i wish you luck! continue with the probiotics!

beth22
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Re: c-diff and post-partum

Postby beth22 » Sun Feb 05, 2012 6:08 pm

nutmegchan - Glad to hear you are doing ok. Yes, it takes a long time for the flora to regrow or at least for the GI tract to calm down. I have read on this site that about 1 year to 18 months is average. I am almost at 2 years and still not normal, but I have SIBO, which complicates things.

Cm517 - Since this is your first post, I will give you the standard introduction. I was going to move your post to the General Discussion section, but forgot how to do it. So here goes:

Welcome to the site. Read the first forum ALL USERS READ THIS FIRST and its subtopics - especially the announcements: PLEASE READ BEFORE YOU POST and GUIDELINES FOR POSTING TO OUR DISCUSSION BOARDS. They will guide you in using the site and answer some of the most frequent questions. Read Dr. Borody's and Dr. McDonald's articles and some of the topics in CDI - formerly FAQ - especially Hygiene, Nutrition, and Testing.

The majority (almost 80%) recovers with one to two rounds of Flagyl or Vancocin, but an unlucky small percentage does not and can suffer for months. Everyone eventually recers, however, unless other factors are invovled such as advanced age or severe health problems. If antibiotics contributed to your C diff, be careful about taking them again. (See CDI - Antibiotics). Some people can tolerate them without a problem; some develp c diff again. (See Dr. Borody's article). For further information see http://www.peggymemorial.org or peggymemorial on Facebook and check out the Mayo Clinic website.

I'm sorry that your doctor told you that there must be something wrong with you to keep getting c diff back. So many posters on this site were very healthy prior to c diff. I think that is very irresponsible of him. Hopefully, you are just having an off day. These ups and downs can continue for quite a while. I usually take Pepto bismol to help my symptoms. If you have a full blown c diff infection, Pepto won't prevent it, but if it is IBS, it usually helps. If you have not been re-tested, but feel you might still have c diff, I would ask your doctor to give you an Rx for a test. If nothing, else, it may give you some peace of mind. Hopefully it is not positive. There are other options now too besides the vanco. There is the new drug Dificid, stool transfers, and also some places are starting to treat with monoclonal antibodies. Just take one day at a time for me. Sometimes certain foods can trigger problems. For me dairy was the first and then fruit and vegetables. See if you notice any kind of a pattern based on what you eat. Good luck and let us know what happens.

Cm517
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Re: c-diff and post-partum

Postby Cm517 » Sun Feb 05, 2012 9:44 pm

Nutmegchan,

Thank you for the advice! It makes me feel better that you have made it to 10 weeks and have still had days where you questioned, but are still doing well! I like what your doctor told you about giving it 3 months for the good to settle back in.
You said you were diagnosed when your daughter was one month old. Did you notice those symptoms all the way up until that time? While I know that for myself being on 3 different antibiotics and 1 off which was an IV antibiotic had to be my trigger, I still wonder why it took so long for my cdiff to get horrible (to the point of not being able to work or take care of my daughter). Because of this I always question if I could still just be living with it, waiting for the horrible episodes to spring up.
I am planning to order the vsl#3. I wish my doctor would have directed me towards probiotics, but that was something I had to learn on my own. Thanks again for the kind words and advice and best of luck to yourself making it to to your 3 month mark. I hope to have that someday soon as well!

Beth,
Thank you for the kind words as well. I agree that it was wrong for my doctor to assume there had to be something else wrong. I spent close to 6 weeks after that worrying which I know didn’t help my body heal. As for re-testing I have been meaning to do so. I have an order form but with my work schedule it is hard to pick up the test kit (and cdiff has already used up plenty of sick days). My doctor told my husband after my colonoscopy came out normal that I didn’t need to follow up with a stool sample, however I agree that I need to if not just to put my mind at ease.
I am really hoping that this is just an IBS episode, but the appetite loss and stomach pains still have me wondering. I was really strict with my diet for so long, but I did just reintroduce salads and vegetables into it. I am wondering if that could be my IBS trigger. I’ll let you know!
Cory


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