I never thought I would be able to post this.

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.
OCmama
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Re: I never though I would be able to post this.

Postby OCmama » Sat Jun 10, 2017 2:41 pm

Sophie

Thank you!!! I am trying to get the word out, people are so scared of telling others that they have this disease, there should not be a stigma attached to it. I have friends in their 30's who have experienced this disease, either themselves or their children. I have a friend who lost her husband to it while he was undergoing chemo, right after the birth of their son. I have a friend from college who has had multiple reoccurrences following her original infection during her first pregnancy. There is a family I know from my son's elementary school who's daughter spent weeks hospitalized for a C. diff infection.

People need to know about this disease (including young people!), as a country we need to cut down on the over prescription of antibiotics and raise awareness of C. diff.

Thanks again!

roy
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Re: I never though I would be able to post this.

Postby roy » Sat Jun 10, 2017 3:05 pm

Amy
Its proven fact that the most c.diff contaminated place in any hospital is the maternity units diaper pails!

OCmama
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Re: I never though I would be able to post this.

Postby OCmama » Sat Jun 10, 2017 3:17 pm

amyc

Thank you so much for your response, I 100% agree with you that this is often how C. diff finds its way into the homes of young families. So many infants are carriers following mom and baby's stay in the hospital, especially following C. sections (like my last birth, due to a breech presentation.) multiple hospitals in Orange County are experiencing high numbers of C. diff infections (including maternity and postpartum cases).

Bobbie
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Re: I never thought I would be able to post this.

Postby Bobbie » Sun Jun 11, 2017 12:45 am

OCmama,

Congrats on surviving your nightmare. Glad the site was helpful.

Makes sense maternity wings islands of ick. Hospital admin need more hygiene info.

Do help spread the news.

christyn
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Re: I never thought I would be able to post this.

Postby christyn » Mon Jun 12, 2017 3:36 pm

WOW!!! Thank you for your post. Gives me hope I can recover from this. So happy that your family is OK.

OCmama
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Re: I never thought I would be able to post this.

Postby OCmama » Mon Jun 12, 2017 7:02 pm

Christyn

You WILL recover! I didn't believe I would ever get better, there was no light at the end of the tunnel. But today is a good day. I don't know what will happen in the future, but this experience has taught me to cherish and delight in the days where my family (and myself) are healthy.

PM me anytime if you need to talk or vent.

Sending good thoughts and prayers to you.

-Angela

christyn
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Re: I never thought I would be able to post this.

Postby christyn » Mon Jun 12, 2017 7:16 pm

Thank you so much!!!

Ril
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Re: I never thought I would be able to post this.

Postby Ril » Tue Jun 13, 2017 10:07 am

Angela, congrats on getting through your hell!!!
And thank you so much for sharing your story.
I hope many people will read it, for both the information and inspiration.

You are very fortunate to have found so many good drs and drs that were willing to work as a team.
And it was heartening to hear that they did not treat when not necessary. I wish more drs had that philosophy. I think too many are too quick to treat and do not keep up with the most current information.

Again, congrats, thanks and continued good health for you and your family.

Rita

angrry
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Re: I never thought I would be able to post this.

Postby angrry » Fri Jun 16, 2017 10:18 pm

I'm so sorry your family went through this....but thank you for posting your story...it shows me that it is possible for me to get over this...I have been absolutely terrified the past few weeks since my diagnosis.....i looked at your c diff page...i think i may go get some bio k probiotics to go with the florastor....i think bio k may be better than align.....thx again for posting and I'm glad you have all recovered

maxny1
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Re: I never thought I would be able to post this.

Postby maxny1 » Fri Jun 16, 2017 11:45 pm

Geez what a nightmare, glad you are all doing better.

I am in my early 30's and experienced two severe bouts requiring inpatient hospitalizations, in Fall and Winter of 2016.

I'd have been devastated if my family caught the infection- I didn't lose too much sleep over this possibility after learning that most people who come into contact just become carriers, and the statistic that ~70% of infants/toddlers are asymptomatic carriers.

I took lots of high-potency probiotics and based on my reading have generally defended their use to some extent (and my ID doc recommended them as well- as do many, despite conflicting evidence), but they are of course (mostly) not FDA studied and not without risk-

I am relatively sure at one point recently I wound up with a bad batch of Garden of Life Raw probiotics that got me sick 3 times over a month- a recent Amazon reviewer experienced the same thing. C'est la vie. Of course FMT carries risks too.

I did not acquire the original infection from a recent hospital stay or antibiotic treatment, so I've also wondered whether perhaps I became a carrier through contact with my infant/toddler, and then perhaps it turned into an infection due to some other health issues I was having last summer. I was always good about washing hands after diaper changes, but it seems like a not-unlikely disease vector.

OCmama
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Re: I never thought I would be able to post this.

Postby OCmama » Sun Jun 18, 2017 5:40 pm

Angrry

I have been alternating probiotics. There is a school of thought that alternating different probiotics every month or two allows time for the strain you are taking to "set up shop", then you switch to the next probiotic, hopefully creating a more diverse microbiome. But everyone in our family takes florastor 2x per day with an additional probiotic. I really like bio-k, but as with any probiotic you should start slow and see how you adjust to it.

Hang in there, you are going to beat this thing.

angrry
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Re: I never thought I would be able to post this.

Postby angrry » Sun Jun 18, 2017 8:16 pm

ty OCmama....I 'm really hoping i will be...I'm currently on my second round of flagyl..still having D once or twice a day...i wasn't able to find bio k capsules yesterday but I did get ultimate flora...apparently thats a good one too....so i've added that to my florastor and align...i wish you continued good health and ty for responding to my post...

OCmama
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Re: I never thought I would be able to post this.

Postby OCmama » Sun Jun 18, 2017 8:30 pm

Most people do well with the Vancomycin (I am not one of those people). I would push your ID or gastro to switch you over to Vanco, in an ideal world Dificid would be the first line of treatment, as it does not disturb indigenous gut flora. Also Dificid has coupons on their website that can reduce your out of pocket cost to about $50.

Hang in there, I am praying for you.

OCmama
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Re: I never thought I would be able to post this.

Postby OCmama » Sun Jun 18, 2017 8:32 pm

Also if you are in an area that has Primenow I have found that sprouts and Whole Foods deliver bio K. I have zero clue how we would have survived without amazon fresh and amazon now.

angrry
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Re: I never thought I would be able to post this.

Postby angrry » Sun Jun 18, 2017 8:35 pm

ty OCmama....I will be setting up an appt with my dr hopefully this week...unfortunately since i'm in Canada I don't have access to the dificid coupon...we have to pay the full price


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