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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I never thought I would be able to post this.

Postby OCmama » Fri Jun 09, 2017 7:35 pm

It has been one heck of a year.

My entire family of 5 experienced an outbreak of C. diff (positive test results, infectious disease doctors, gastros, hospitals, the whole bit).

My husband came down with it following surgery (sinus surgery, otherwise healthy 35 year old). He gave it to our 3 year old daughter who suffered multiple relapses, did flagyl, did vanco, did vanco pulse and just missed a fecal transplant (knock on wood). During her 2nd relapse she went 25 times in a 24 period and had two rectal prolapses. She is three months out and I constantly remind mylself of the 70 day rule from this site.

My 5 month old caught it. The Children's hospital ID said not to treat, Children's hospital gastro wanted to treat (he performs fecal transplants). The pediatric gastro says that he is starting to see C. Diff WITH symptoms in more infants. My infant son had constant diarrhea with mucus (only with blood in the begining). We did not treat him, the infection lasted 6 months (we gave him biogaia and florastor as advised by ID and Gastro).

My husband was hospitalized for 3 days, but got better after flagyl and IV vanco.

I was given Vanco without a positive stool test :-/ I experienced an allergic reaction called Red Man Syndrome. Ended up back in the ER, found out I had been negative for C. Diff but no one called me to tell me, letting me stay on an unnecessary antibiotic while caring for a house full of people with C. diff.

So, obviously I caught C. diff. It was the holidays so I couldn't get into the ID recommended by the GI who diagnosed me, my GP didn't know what to do either. Spent 22 days not treating. It turned into full blown C. diff colitis, going 10+ times per day, eventually only passing mucus and pieces of my colon. I lost 20lbs and my sanity. My ID is the best in our area, and prescribed me Dificid. It was a miracle drug for me. They are also doing pediatric trials for Dificid.

My 6 year old caught it, was started on flagyl by ped. Got emergency call to cease treatment by ID, so he only had two doses (which he mostly spit out). He fully recovered in about a month.

We bleached everything in the house and threw out anything that couldn't be cleaned.

It was ridiculously expensive, terrifying and humbling.

I just wanted to thank the people on this site, it was the only place I could turn to in the middle of the night when I couldn't see an end in sight to the nightmare.

We are finally starting to put our lives back together, I have started running again. We are cleared to be with our families again and are staying for the weekend at my in-laws. I was able to run to the beach today with the two little kids :-) I do suffer from post-infectious irritable bowel syndrome and have some left over physical/emotional damage, but I feel incredibly blessed to be back to (mostly) normal life.

Thank you so much for contributing to this site, it has been one of my greatest resources.

I also have started a website www.gutsymother.com to try and help bring awareness to C. diff infections and normalize the discussion about gut health.

Thanks again!!
Last edited by OCmama on Thu Dec 21, 2017 9:03 pm, edited 9 times in total.

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

Postby NanciT » Fri Jun 09, 2017 11:40 pm

OH MY!! I am so very sorry about your entire family coming down with this! I don't think I have seen a family member get it...and certainly not an entire family. I really can't imagine how very difficult life has been for all of you. It sounds like you are now on the road to recovery. Keep everyone away from antibiotics unless they are required for serious infection. I am sure you know this but often MD's will give RX's to kids when they are not 100% necessary.

I would type your complete experience up and have it put in all of your charts. I am happy Dificid worked for you, it also cured me and so many on this site. Really makes me terribly sad your children had to go through this nightmare and as a parent so difficult to watch your child suffer.

Nice to see you posting in this thread

Wishing all of you the best and continued recovery

NanciT

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

Postby amyc » Sat Jun 10, 2017 12:45 am

I am happy to hear you are all recovered, and you aren't the only young family who has shared C diff. I am surprised that your ID chose to not treat your six year old. It's very strange to choose to allow a child to suffer for over a month with infectious diarrhea. Was your six year old attending school through that month? If you guys get sick again I would probably trust the pediatric GI who recommended treatment over the ID who told you to just let your kids deal with D for that long.

beth22
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Re: I never though I would be able to post this.

Postby beth22 » Sat Jun 10, 2017 1:24 am

Amy - There are more and more doctors now that say not to treat, even for adults, if it is a mild infection. My friend lives up in the S.F. Bay area and the ID doctor told her not to treat either. It went away on its own. I had it the year before I treated and it went away on its own too. Had I not taken antibiotics (Cipro), it probably would not have come back. When I treated, it did not go away and stay away. I think every case is different.

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

Postby OCmama » Sat Jun 10, 2017 10:03 am

Many doctors are advising not to treat (depends on severity of the the case). The BIG super extra scary problem is when you develop a family wide infection, each person needs to be treated according to their individual case, but at the same time you need to have the least amount of people possible on antibiotics. The infection becomes a vortex, passing back and forth between all members in the house, as each person has had their gut flora altered. The first ID doctor who I saw (he is just a gp/id, but it was the holidays and I was desperate), advised not treat as I would just be reinfected in the home, unfortunately my infection ended up being very severe (but I did spend 22 days trying to fight it with every possible natural remedy until I got into the top ID).

Also in pediatrics they are advising not to treat if at all possible to keep as much of the gut flora intact as they are unsure about long term effects of treatment. There is also a line of thought that children develop an immune response around age 1 (also same age when gut receptors develop) and there may be some sort of lasting protection for children/infants who have been exposed to and eliminated the cdiff. My oldest son's case was mild and resolved on it's own (which is more common in children), my youngest son's case was pronounced but the ped ID will not treat infants under 1 for above mentioned reasons and the medications are tough on them, his case did resolve on it's own but was VERY long. But in my daughters case, she had 105.3 fever, prolapses and endless mucus, blood and diarrhea beyond what I thought could be humanly possible, so she had to be treated.

The children's hospital and adult hospital had never seen an entire family experience an outbreak, we're just lucky I guess. But all the pediatric doctors were amazing, they all got together and had a powwow to try and figure out how to treat us, my Pediatrition even called me every night for 6 months on her way home from the office to give me pep talks and answer questions (I got pretty depressed and was sure at least a couple of us were going to die). The cleaning regime was very difficult, we were told to follow hospital disinfection protocol, which is extremely taxing even when not fighting a C. Diff infection.

Our adult ID is not warm and fuzzy but it is extremely well regarded in the community. In Orange County (California) we are experiencing a massive outbreak which has leaked into the community. Specialists in the area believe it may be the result of the large population in relation to the relatively few amount of hospitals, but who knows. Our ID also experienced a C. diff infection so he is pretty invested in fighting this horrible disease. He advised us to avoid all antibiotics unless he approves the treatment himself. If we do take an antibiotic we should take it with bioK. We are all permanently taking florastor, and the kids also take an additional probiotic. If my daughter gets an infection that requires an antibiotic in the next 2 years she will also take Vanco with it.

Long story short, no antibiotics, and once a C. Diff infection infiltrates the home things get very complicated. Hopefully this doesn't happen to any other families, but with how many people I personally know in my community who have had C. diff (or their kids have had it) I am very concerned that this may happen to other families. It is very important to raise awareness of this horrific disease so that others are able to make informed decisions about antibiotic use, spot the signs of an infection and practice proper precautions.

Thanks again to everyone on this site, for helping my family through this nightmare it means more than I can say.

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

Postby OCmama » Sat Jun 10, 2017 10:09 am

My six year old was out of school for a little over two weeks until the diarrhea resolved and he felt well enough to go. I was very concerned about sending him to school but the direction from all doctors was that C. diff is now "in the community" and I was to send him to school. Which scared me silly, and was nearly impossible as I was so sick I could barely get out of bed.

Thanks again!

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

Postby roy » Sat Jun 10, 2017 10:21 am

Hope you are aware that c.diff is spread by Faecal oral route.
I have never heard of it being spread to a whole family and basically they would have to all consume Faecal matter and also have compromised gut flora before they developed colitis.

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

Postby OCmama » Sat Jun 10, 2017 11:00 am

I am defitely aware of how it is spread. We all wash hands before food preparation, before eating, wear gloves for food prep, wear gloves for bowel movements, wash hands after removing gloves, and I bleach our home every night, all bathrooms and kitchen.
Last edited by OCmama on Sat Jun 10, 2017 12:19 pm, edited 1 time in total.

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

Postby OCmama » Sat Jun 10, 2017 11:06 am

We were a perfect storm, husband was on antibiotics to prevent post surgical infection. Daughter had just turned 3 (young children are more susceptible), son was 5 months, and I was postpartum (also high risk). The only person in our family who was not considered a high risk was our 6 year old.

In normal situations it would be very unlikely for this to happen, and do not wish to frighten anyone in the community on this site. It is very unlikely that this will happen to others.

Jojo17
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Re: I never though I would be able to post this.

Postby Jojo17 » Sat Jun 10, 2017 11:24 am

I'm so happy to read about your success! My family had a very similar situation that started in February of this year. My 3 year old daughter and 4 year old daughter were put on their first ever antibiotic and a week after finishing had blood and mucus in their stool. I also came down with the same symptom. The three year old was tested and was positive for c diff (nothing else showed up in the sample).

The pediatrician prescribed all three of us antibiotics to treat c diff. In retrospect my daughters shouldn't have been treated. They never had diarrhea and the blood and mucus resolved in two days, before they started antibiotics. Their regular pediatrician was pretty upset that the on call pediatrician treated them. I'm sorry you went through this, but it helps to hear we aren't the only ones who had an unusual situation with this.

We also have a baby in the house (5 months at the time this happened) and I was terrified of her catching it. I can relate to bleaching like crazy and throwing away countless toys and books. I also had many sleepless nights where I stayed up crying and panicking over this.

My girls are 15 weeks past flagyl and doing great. I was treated with Vanco because I am breastfeeding my baby. I was retreated with a Vanco taper by a GI Nurse Practitioner after a positive test after the first round of Vanco. The actual GI later told me I shouldn't have been treated the second time just based on a positive test. I hope this is completely in the past for you! Congratulations!

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

Postby OCmama » Sat Jun 10, 2017 11:56 am

Jojo17

Hi!!! I am so glad you and your girls are feeling better!!!!

Babies can be a vector for bringing C. diff out of the hospitals and into the home (very cute vectors). All it takes is an ear infection, family strep outbreak or pertussis outbreak and you can have a family-wide C. diff infection.

It is very unlikely to spread in families of adults or older children, but very young families face a different set of unique risks.

I am so thrilled you are all putting this behind you and am sending good thoughts and prayers your way! I am going to pm you xo

Jojo17
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Re: I never though I would be able to post this.

Postby Jojo17 » Sat Jun 10, 2017 12:03 pm

OCmama,

We now call the baby "little c diff carrier." Probably not the nicest nickname for her! We suspect that that is where it all started for us.

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

Postby OCmama » Sat Jun 10, 2017 12:24 pm

"Little C. diff carrier" hahaha that is funny, that even made my husband laugh. I also wonder if that is where our infection came from. Got to try and keep a sense of humor with this thing, although at times that can be very difficult.

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

Postby sophie » Sat Jun 10, 2017 2:03 pm

I'm glad you and your family are doing well. That is a great website you have created, this is such an unknown illness which people need to know about.

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

Postby amyc » Sat Jun 10, 2017 2:32 pm

Roy--I suspect that our young families here were exposed to C diff in the maternity center. In the US, hospitals have gone to using beautiful birthing suites that look like large hotel rooms, and moms give birth in large convertible beds and recover in place. Families spend a couple of days in the suites visiting, eating, and young siblings play, crawl, eat, etc. I did a clinical rotation through a very posh birthing center a few years ago, and it's virtually impossible to completely disinfect all surfaces in the rooms, and turnover rate is very high. Women spend only a day or two, so if a mom was a C diff carrier or actually had C diff during late pregnancy and delivery the staff probably wouldn't know anyway.

It would be very interesting to have a public health agency study if there is a connection, but I highly doubt that will happen, unless it's funded by the companies who make the robots that kill spores with UV lights in hospital rooms.


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