2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

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habeela
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2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby habeela » Wed Jul 26, 2017 4:54 pm

I was first diagnosed with CDiff in July 2015 after completing my first IVF retrieval. Since that time, the longest I have been off of medication has been 2.5 weeks. I have been through 2 rounds of Flagyl, 6-9 (I've lost count) rounds of Vancomycin, and on July 17, 2017 I had my first FMT via colonoscopy. 7 days after the FMT, I was diagnosed with a relapse and I am now considering whether to repeat the colonoscopy FMT or do an oral FMT. Since my first diagnosis in 2015 I have been using good hand washing hygiene and with the first FMT my husband and I thoroughly disinfected our bathroom and home with a 10% bleach solution and have been continuing to disinfect the toilet, bathroom sink, soap dispenser, kitchen handles, kitchen sink, kitchen soap dispenser with baby wipes soaked in a 10% bleach solution. I'm also using disposable paper towels to dry my hands afterwards. Since the FMT failed, however, I have a lot of questions:
-does the 10% bleach solution pose a threat to my 6 month-old son (the good news in the last two years of dealing with this is that first round of IVF was successful)? What about the Clorox germicide wipes? If so, how do I mitigate that threat?
-are there any concerns with wiping my hands with the 10% bleach wipes before I eat (I'm thinking of being at work)?
-how do people handle bath towels they use for showering? Do you wash these with bleach after each use or do something else?
-are there additional precautions you all recommend given that I have a small disease vector (i.e. my son) who is very good at helping to spread whatever spores may be in my house?
-what additional precautions would you recommend if I redo the FMT given that I can't seem to get this stuff under control?

I am so overwhelmed and devastated that the first FMT failed. I am so worn out from having to deal with this and I feel legitimately crazy from all of the disinfecting we've been doing. The doctor confirmed I'm doing what I should be doing but even my husband observed that what we're doing could easily be confused as OCD by an outside observer who doesn't know what's going on.

I'm so glad to have found this support group! Thank you all for being here and being so smart about this [insert all kinds of expletives here] disease.

NanciT
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby NanciT » Wed Jul 26, 2017 5:57 pm

Hello Habeela and Welcome to the site Please read the first thread for all new posters

First the Clorox wipes that are specific for CDIFF are great. Once the surface is cleaned and dry I don't see how that could be any kind of threat.

As far as towels, I DO use bleach on them, I used bleach on all of my clothing while having active CDIFF.

I am so sorry your FMT failed. Were you on Vanco right before the FMT? I also noticed there is no mention of Dificid. That is what cured me, I ended up failing the 10 day but did well on a Taper. Has your GI mentioned DIficid? It has actually cured many on the site.

Is it possible to see a new GI and get another opinion? I always mention this if someone has been in a long battle with CDIFF. I changed twice during that time.
Sorry you are going through this and have a 6mo old, very difficult. We have a lot of new mom's on the site.

I hope you feel better soon!!

NanciT

habeela
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby habeela » Wed Jul 26, 2017 6:25 pm

Hi NanciT, Thank you for your comments. The FMT was actually a recommendation by the second GI I went to see. She is Dr. Surawicz's replacement and protege. Everyone said I should just wait until my son was born and that my hormones would finally die down and allow my body to heal. That unfortunately is not what has happened.

I was on Vanco right before the procedure. My first GI doctor has recently begun suggesting Dificid as the next step. I have opted for the FMT for three reasons:
1. Dificid actually costs me more than the FMT
2. I would have to stop breastfeeding my son while I'm on the Dificid. I had a really hard labor and delivery and have overcome so many obstacles (a tongue-tie that grew back, I also had a massive hemorrhage post-c-section that delayed my milk production, my son was in the NICU being gravity fed and refused to breast-feed for awhile, and then he developed a bump on the roof of his mouth that was extraordinarily painful, etc.) to be able to breastfeed the only biological child I will ever have that I am not willing to give that up quite yet.
3. Everywhere I've been reading recommends the FMT above medicinal treatment. (On this point, I'm curious to learn more about those who have successfully used dificid since that will be my next move if a repeat FMT fails)

With your towels, do you hang them in the same bathroom you use for defecating? Do you wash the towels daily?

Thanks for the warm welcome and the good information!

roy
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby roy » Wed Jul 26, 2017 6:38 pm

One bit of info you might have missed.
Around 75% of 6 month olds carry c.diff!
Looks like diapers and cleanups are now your husbands job!

AnxiousJ
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby AnxiousJ » Wed Jul 26, 2017 7:04 pm

I am so sorry you are going through this especially with a 6 month old. I took Difficid in April of 2016 after failed attempt with Metro and Vanco and I have been neg for a little over a year.

I too went through fertility help (IUI). My son is 6 now. How did IVF cause C Diff? Was it the fertility drugs, hormones or were you on antibiotics?

Congrats on your sweet son and I hope you feel better soon. You may want to talk with your doctor about taking a good probiotic like VSL or Bio K.

habeela
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby habeela » Wed Jul 26, 2017 8:02 pm

@roy I am just bewildered by this statement. Do you have a source for this or any productive advice other than "don't touch your kid's diapers"?

@AnxiousJ No one knows for sure that the IVF did cause the CDiff infection but they do pump you full of antibiotics when they do the egg retrieval so my first GI assumed that's what caused the CDiff. I had been taking VSL3 up until 2 weeks ago when the new GI recommended I stop the probiotics and either only eat the 5Ks or switch to Florastor. Congrats on your child as well - fertility issues are no walk in the park no matter what path is required.

NanciT
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby NanciT » Wed Jul 26, 2017 9:36 pm

I believe on the site with have posters who have had 2 FMT's and the 2nd did get rid of CDIFF. I know Dificid is expensive, many posters have mentioned the cost and I recall being fortunate my Insurance covered it. You can look it up in the search bar. You can also read under FMT, posters will often mention if it is their 2nd.

NanciT

OCmama
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby OCmama » Wed Jul 26, 2017 10:11 pm

Hi Habeela! I am so sorry for what you are going through. My family recently suffered an outbreak of C. diff, it was the most horrifying experience I have ever been through (even having been through losing my mother to late stage ovian cancer, it was still comparable, C. diff is absolutely horrific). My youngest was 6 months at the start of the six month long outbreak, it is very hard having C. diff, and a million times harder with young children.

I took Dificid due to a bad reaction to vancomycin, you CAN breastfeed while taking Dificid. I did so with no problems, and checked with ID and Peds and Ped ID before taking it.

For diaper changes I suggest buying latex gloves and using them for all changes, as well get the disposable changing mats, and the tie bags for diapers. Make sure that you use bleach wipes to clean baby's changing area often. A foot operated diaper bin is a good investment, we also bought hands free automatic soap dispensers. I also stopped using a bathtub for my son, I got him a plastic baby chair for the shower, which I cleaned thoroughly after use.

We used gloves for all contact with feces, gloves for food, bleached the shower after each use, washed towels with bleach after each use, mopped all floors with bleach solution a couple times per week.

Also don't use the bleach wipes on your hands, I would just wash very thoroughly before eating.

I'm praying that you kick this thing soon!!!! Praying for you and your family!

Zapper
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby Zapper » Wed Jul 26, 2017 10:43 pm

Habeela, your story and mine are very similar. Biggest difference is I became pregnant during my treatment.
I was diagnosed November 2015 and failed several flagyl and vanco treatments. I got pregnant.. my ID put me on 2 250 mg vanco daily throughout my pregnancy and I relapsed days after tapering. After 18 months of failure I wanted to try FMTs. Tried an FMT and failed within a week (same as you) but I also got Norwalk virus at that time. I did a 10 day round of Dificid followed by my 2nd FMT and I have been c diff free for 9 weeks tomorrow.
I do have many food intolerances and PI-IBS but c diff free! If you would like you can PM me with any questions about recovery etc. I know how it is having multiple relapsed and procedures with a newborn. It has been beyond exhausting! I highly suggest dificid followed by an FMT.

habeela
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby habeela » Thu Jul 27, 2017 1:07 am

@OCMama Thank you for the great advice! I am putting gloves on my shopping list for tomorrow and have ordered some bleach wipes just for our nursery!

@Zapper I found your case history and update story - does your post here mean your stool test came back negative for CDiff?

Zapper
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby Zapper » Thu Jul 27, 2017 4:26 am

Yes, I just had the confirmation yesterday. Unfortunately for me, I just have some bad PI-IBS. There is hope though, I will always have D issues due to my igA deficiency. A lot of people will return back to normal!

roy
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby roy » Thu Jul 27, 2017 5:24 am

Example article but Google asymptomatic c.diff in babies for lots more info.

http://www.gosh.nhs.uk/medical-informat ... -difficile

OCMamas situation where the family caught c.diff is very unusual, c.diff is not known to act/spread like that in any other posts or experts articles.

OCmama
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby OCmama » Thu Jul 27, 2017 9:53 am

My case is unusual, however jojo17 on this site also did have a similar experience. In the US C. diff is becoming a much more virulent infection, if someone in the family has an active C. diff infection it is best to practice thorough precautions, especially if you have young children (bleach, hand washing).

amyc
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby amyc » Fri Jul 28, 2017 5:01 pm

I suspect your infection is not responding to vancomycin, and I would highly recommend you take a course of Dificid before your FMT to give you the highest chance of being cured. Dificid has a patient assistance program that can bring down the cost considerably. Yes, it's pricey but you need to restore your health so you can move on with your life.

Ricedoll
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Re: 2 Years of CDiff, 1 failed FMT, a newborn, and a lot of questions

Postby Ricedoll » Tue Jun 12, 2018 11:44 am

Can I hijack this a bit and ask if I could breastfeed while doing FMT? Since you chose that over medicine. Thanks


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